Here I will be adding to the journal that my wife, Shari kept at Caring Bridge to keep friends and family informed of my situation. In between entry dates I will add my own recollections of that period of time. It’s my hope that someone may find some useful information from my experience. All the blue text here is being entered by me, a little over a year past the original diagnosis.
The journal started on May 19, 2015, but let’s back up a couple of weeks to when this all started. On the evening of April 21, 2015 it was about 11pm and I was watching the late news in my home office. I moved from the couch to the computer to shut it down. While in that chair I began to feel nauseous. I shut the PC down and moved back to the couch waiting for this nauseous feeling to subside. It stayed and I guess I passed out a few times and would wake at various times while the Jimmy Fallon show was on the TV. After over an hour of this I decided I needed to just get to bed but the bedroom was at the other end of the house and I was feeling really weak. I could only weakly call her name to try to wake Shari, but could not say or yell loud enough, so I called my wife’s cell phone which she had by the bed and had her come to me. I explained to her how I felt and she immediately wanted to call the paramedics. I said we should wait and see how I feel soon, but she convinced me she should call 911. When they came they asked if I ever had a gastric bleed, because they saw some blood by my mouth. I said “no” and couldn’t understand where blood by my mouth would have come from. Later I would understand that would explain why one of the times after I regained consciousness I was hoarse sounding and had a little cough. I had some of the blood come up and aspirated some into my lungs.
So, after some questions they decide I need to go to the hospital. I told them my recent health care has been through the VA, so they contacted the Portland VA Medical Center, but they were turning away ambulances that night. They said we were going to Legacy Salmon Creek which is about 2 miles from home. They did document that the VA refused my ER visit so that the VA would later cover the outside expenses, or at least what Medicare doesn’t pay.
So now it’s about 1am and I’m in the ER and there are about 6 people scurrying around me hooking stuff up and asking a ton of questions. I’m in a reclining position and someone decides they need to get my BP in a sitting position. There is a large PA pulling me up to that position. As I’m getting more upright, I say “I’m going to be sick”. I said that about 3 times and nobody was bringing me a bag or bucket or anything. I suddenly feel something coming up and I turned my head to the left and just let go with 3 large blasts, vomiting black stuff on the floor, creating a big mess. Shari is sitting in a corner and screams “Oh my God, What is that!” It seems I had a belly full of dead blood. Right then I heard someone in the ER say “NOW we know what we’re dealing with!”
The floor where they wanted to put me was full so I spent the next +12 hours in the ER until time to go to the endoscopy area, which is now the afternoon of April 22. The GI doctor says he found an ulcer that decided to bleed out, but saw a mass of something near it, so he took a chunk to send to the lab for biopsy. I spend that night in the hospital and am discharged the following afternoon. That Friday, April 24th, my GI doc calls me and tells me that the biopsy showed cancer. As you can imagine, we’re stunned!
So now it’s Sunday morning April 26th, Shari’s birthday. I wake up and feel nauseous, dizzy and clammy and like I need to go to the bathroom. I walk into the bathroom and decide I just need to sit down to see if this feeling passes. Shari was already up and in the living room. I call out to her and she comes in and I tell her what’s happening. I guess I passed out and leaned to one side against the wall by the toilet. I wake to her slapping me and yelling my name. She’s also on the phone to 911. AMR shows up and takes me over to the Portland VA where I spend some time in the ER before they admit me to a room. The only thing the ER could see was some elevation in my white blood cell count. The rest of this hospital stay (2 days?) is a blur to me now as there were numerous tests, scans, x-rays, etc. before I was discharged.
Not knowing any plan of action yet meant we had to do something to be proactive so my son offered some medicine that he creates for medical marijuana dispensaries in the Seattle area. This was cannabis infused coconut oil and we tried it several ways like mixing into a smoothie or just ingesting it by the tablespoon (yuck taste). I was doing about 160mg of that per day for awhile until I could no longer tolerate the taste. So the first week of May brings a flurry of appointments with my PCP, lab tests, CT Scan and the meeting with the Cancer Care Navigation Team. This was a clinic meeting with my nutritionist, oncologist, thoracic surgeon, chest surgeon and neck surgeon’s assistant to tell how things were going to go down. They confirm that this is a Stage II (N0-M0) adeno carcinoma. They also state that this is quite curable since it’s caught at an early stage, but they have to warn of all the possible side effects and risks involved. Given the reputation the VA facilities have had across the country, we were sort of skeptical of what kind of care I would really receive. During all the consults we had I began to feel more comfortable with the plan of attacking this thing. During all this I had no fear of dying from this and tried to stay really positive and to keep an upbeat attitude. I hoped I would not be a burden to anyone, not complain and not to be mean to anyone just because I may not be feeling 100%. Shari DID shoulder the burden of my care with keeping track of schedules, wake-up times, meds, food and liquid intake; EVERYTHING! That also includes keeping friends and family informed of my progress. I think everyone should have this sort of care when undergoing cancer treatment as it relieves a lot of stress off the patient and I think that is huge in healing. Having a dedicated caretaker when going through something like this IS absolutely necessary. Be advised that everything here and below that is in blue is entered by me about a year after the journal posts.
Dennis Update 05/19/15
By Shari Clevenger — May 19, 2015 6:05pm
Hi Friends and Family
I am starting this site to have a place that you can go to, to get the latest news on Dennis. As you know, Dennis had a couple of ER visits in late April, long story short, was diagnosed with Esophageal Cancer. We have had a multitude of doctor visits and tests since: a CAT Scan, a PET Scan, and an Esophageal Ultra Sound, as well as a meeting with a Cancer Care Navigation Team.
Now, for the latest. Dennis had a PET Scan yesterday, and basically we were told that there was really nothing new from that, as far as that the cancer has not spread to other locations (except for the possibility of the lymph nodes that are right in that area). There were a couple of spots in his lung that showed up on the CAT scan, but they did not show up as a problem on the PET Scan yesterday (i.e. as cancer)– the doctor told us that they measured them and would monitor them. Today, we had the EUS, and they were able to determine that the cancer is deeper into the tissue than they first thought. The doctor said that they will recommend Radiation therapy first, and that his Oncologist will determine if Chemo is also needed. If so, the Chemo would be 1 day a week, and Radiation would be 5 days a week, for five weeks. Unfortunately, I was not prepared to have a meeting with a doctor today, assuming that both of these tests would be discussed at the upcoming Surgery Group meeting. So I didn’t think to ask what the Stage of the cancer is. (We were told by the oncologist at an earlier meeting that she thought 1 or 2, but that may have changed with this latest).
So that is what we know for now. I would encourage you to sign up on this page with your email, so that you can get notifications of all updates. Once I have this going, I will not be sending email updates, as that is becoming a bit too time consuming. P.S. I would appreciate if you don’t share these posts on Facebook or Twitter.
Thank you all for caring.
Shari and Dennis
Like I said earlier this period of time is a blur to me now. We do have a VA Medical Center here in Vancouver, WA, but it doesn’t cover the care that the facility in Portland does. Fortunately, the VA provides shuttle buses that run between the 2 medical centers on a schedule. Many mornings during my radiation we had to catch the 7:20am bus from Vancouver, go through Portland morning rush hour traffic to get up to the PVAMC. Then later in the morning or afternoon we would catch the bus back to Vancouver to our car. The Vancouver VAMC is about 5-6 miles from our home. The Portland VA is about 20 miles from home. That shuttle bus was a godsend as the morning traffic on I-5 is nuts and Shari isn’t wild about driving in traffic anyway. She was doing all the driving now since I was often times “medicated”.
Playing the waiting game…
By Shari Clevenger — May 24, 2015 7:03pm
Sorry it’s taken me so long to send an update, but I don’t really have a lot more information. Last Monday, Dennis had the PET Scan, and on Tuesday, the EUS (Endoscopic Ultra Sound). When the Oncologist first told us about setting up these tests, she said that the next step would be a meeting with the Surgery Consult, where we would find out the results of the two tests. However, apparently Dennis’ GI doc who did the EUS didn’t get that memo. At the end of the test, she sent him to X-ray, which really confused us. Why would they need to X-ray right after an EUS? We were told to return to the waiting room after the X-ray, and we would be called to see the doctor. When she called us in, she explained that the reason for the X-ray was because she had placed three copper “markers” in Dennis’ esophagus, so that when radiation was done, they could better pinpoint the tumor. She wanted the X-ray to make sure they were in the proper position (they were). She also told us that there wasn’t really anything new discovered from the PET Scan, but the EUS showed that the tumor was a little deeper into the tissue than they first thought. She said for that reason, surgery would not be done until after radiation, and possibly chemo.
So, that is where we stand. The Surgery Consult, which had been scheduled for June 16, was promptly moved up to June 2nd. The Oncologist appointment is set for June 18th, and I suspect that one could be moved up as well. We have this week with no appointments, so it will be just rest for Dennis. He sleeps really well — about 11 hours a night. He would sleep longer, but I usually go in and wake him up between 10 and 10:30 a.m. He doesn’t get out at all unless he goes with me to a store, and he has not been walking with Janeen and I in the afternoon anymore. His back has been bothering him a little, but mostly, it’s just lack of energy. He still has the Iron Anemia, which is responsible for that.
That’s it for now. If nothing else happens (please), I’ll send another update after the June 2nd meeting.
Thank you for caring. It means a lot to us.
Shari and Dennis
Again, this is another time period that is a blur to me now as far as details. This may be in part due to my cannabis medication. It helps you sleep real good! I’m starting to feel a little fatigue at this time, but not too bad.
It seems like going back to the original ER visit up to now, everyone asks the same question. Do you smoke? I quit cigarettes 25 years ago. OK, so how much do you drink? Maybe about a 6-pack per week and maybe a few ounces of liquor. Ok, then your cancer must be caused by acid reflux. Huh, wouldn’t I know if I was having heartburn or anything like that? Oh, so what you have is what we call “Silent Reflux”. Uhhh…, ok.
Throwing out the rose colored glasses…
By Shari Clevenger — Jun 3, 2015 9:10pm
Well, yesterday was the Surgery Consult at the Portland VA. Over three hours of meetings with Robin, the Physican’s Assistant, Malissa the Nutritionist, and Dr. Spight, one of the surgeons. This meeting was extremely informative, and somewhat frightening. One of the first things Robin told us was that esophageal cancer is one of the (two) fastest growing cancers (the other being pancreatic) The tumor is at Stage 2, which they consider curable, with chemo, radiation and surgery. Of course, any surgery has risks, and this one has quite a few (i.e., Pneumonia, leaks, infection, etc.) For one thing, this surgery is more complicated than cardiac surgery. I will spare you some of the “gory” details, as some of you may have sensitive stomachs. First there will be six weeks of chemo (once a week) and radiation (five days a week). There will be a 6 week “break” after all that, and then surgery will be done. There will be three surgeons: one who takes care of the stomach, one for the esophagus, and the last one takes care of the neck. The surgery will take TWELVE hours. Most of the surgery will be laparoscopic incisions. The “neck” surgeon will make an incision (here’s some of the sensitive part — if you need to know more, you can call me). They will remove almost the entire esophagus (contrary to what we’d been told before), and a good portion of the stomach. Then they will attach the remaining part of the esophagus to the now “tube sock” shaped stomach. There will be no valve between the esophagus and stomach, so he will no longer be able to sleep flat (thank God we were able to get our new adjustable bed). A feeding tube will be inserted during the surgery, as he will not be able to take anything by mouth until they know for sure there are no leaks inside, or any other issues. He will have the feeding tube for 6 weeks. Before that 6 weeks is up, they will start the process of reintroduction, starting with clear liquids. After the surgery, he will be in the ICU for a week. Depending on any complications, and how quickly he bounces back, he could be in the hospital for as long as 6 weeks. They are hoping that since he is in relatively good physical condition, that after a second week in the hospital he may be able to be transferred to the Vancouver VA Rehab for a couple more weeks, and then home. The surgeon said we can pretty much expect to lose about a year to treatment, surgery and recovery. So that is where we stand now. We really liked the surgical team. They were funny, informative, open to any questions. On Monday, we have a Radiation Consult, and on Thursday, we meet with the Oncologist, who will confirm the chemo treatment. They want to get him started on the radiation and chemo as soon as they possibly can, since this cancer is so aggressive. So that’s where we stand now. Please keep Dennis in your prayers.
Shari and Dennis
It was during this time we were told that one of the things I would have to live with post-surgery is that I can no longer lay flat. If I lay flat with anything in my stomach, I could aspirate the contents if they came up and into my lungs. There will no longer be that valve at the bottom of the esophagus to stop that. I will become a gravity-fed system. So we thought we should go bed shopping to find an adjustable bed. We end up buying a $3000 split-king bed with the head and foot adjustable. This has wired remotes for both sides and we wish we would have sprung for the wireless remote version for about $1000 more. I cannot get any financial help from the VA or Medicare for the prescribed bed. We felt there was no time like the present (surgery still about 4 months away) to start getting used to sleeping in an upright position. I’ve been a side sleeper my entire life, but no more.
Radiation Consult — this is getting real.
By Shari Clevenger — Jun 8, 2015 11:14pm
Today we met the Radiation Doctor at OHSU, Dr. Michael Holland. I have been so impressed with all of the doctors, assistants, etc. that we have met, both at the VA and OHSU, and this one was no different. He showed us the recent PET scan on a computer, and pointed out the cancer. He was quite happy with how small the tumor actually is, and said several times that Dennis is very fortunate to have caught this so early. He wants to schedule the Radiation Simulation (this is more of a planning meeting, where they will check his esophagus as he breathes (apparently they move somewhat), and map out a special cover to protect the rest of his body from the radiation, and set a certain position that he will be required to assume and hold, for every treatment. They will also do another CAT Scan during this time, that will be used for pinpointing the exact position to aim the radiation (even though the copper markers are already inserted, this is all part of the procedure). These OHSU appointments are a little challenging, as we take the free shuttle bus from the VA in Vancouver, to the front door of the Portland VA. Then we have to walk across a very long (660 ft.) skybridge to the OHSU building, and then walk from one end of that building to the other, and then an elevator to get to the Radiation Dept. This is a nice walk now, but as he gets more and more tired from the Radiation, it may be a challenge for him. When we finished our meeting yesterday, we realized that if we could get back to the VA quickly, we would be able to catch the 4:10 shuttle. We practically ran the whole way, and got there with minutes to spare. Unfortunately, the bus was completely full, and we had to wait for the next one. That was a first for us, and was disappointing, as we had been there all day and were tired. This morning, OHSU called around 8:30 and set up our “simulation” appointment for Thursday, the 11th, at 8:00 a.m. (UGH, getting Dennis up that early and down to the Vancouver shuttle will be a challenge). Then at 12:30 is the meeting with the Oncologist to discuss the Chemo. It’s beginning to feel sort of like a runaway train at this point, things are moving so fast. Dr. Holland is hoping that we can possibly start the radiation and chemo as early as next week! This will be for five and a half weeks (that seems to change every time we talk to another person). If so, we could be done with this part by mid-July. Then he gets six weeks to recover and regain his strength, and prepare for the surgery. That should put us somewhere around the first week of September.
So, this isn’t much of an update I guess, but it’s all we know for now, and you know what we know. Dennis is feeling pretty good for the most part, although his appetite is small. Feel free to call him (but never before 10:00 a.m. after I push the eject button on the bed), or call if you would like to visit.
Shari and Dennis
To be clear for those of you out of this area, Oregon Health & Sciences University (OHSU) is right next to the Portland VA. They are joined by a 660 ft. enclosed sky-bridge. They both share surgeons and other staff members as well as research information between the 2 facilities. The VA sends all radiation work over to OHSU, but the VA will take care of my weekly Chemo infusions. OHSU has a top notch cancer research center there so it’s a good neighborhood to be in.
Radiation Simulation and Chemo tour
By Shari Clevenger — Jun 13, 2015 11:26am
Thursday morning we had an 8:00 a.m. appointment at OHSU with the Radiation team, which meant a 5:30 a.m. wake up to get to the 7:20 shuttle at the Vancouver VAMC. This simulation is done prior to the actual radiation, to get the measurements they need. They needed to see how Dennis’ Esophagus moves when he breathes, in order to better pinpoint the radiation. As Dennis put it, he got to take a ride through the “doughnut” that is the radiation machine (no radiation given, however). Also, they had him lay on a cushion (looked like a big semi-inflated plastic bag), and then turned on a machine which sucked all the air out of that bag, as it hugged itself to Dennis’ body. That cushion will be used every time he gets radiation, so that they can make sure he is in exactly the same position. I was not allowed to stay in the room because of the radiation, of course. After the simulation was done, we headed for a cafe in OHSU to have some breakfast. We had bacon and eggs, toast and potatoes, and it was delicious. After that, we headed back to the skybridge to the VA to wait for our 12:30 appointment (and now joined by brother Glenn) with the Oncologist to discuss the Chemo portion of our day. Dr. Leonard was the same doctor who was on the Cancer Care Navigation Team from a month or so ago. She discussed the chemo treatments with us and then sent us to the 6th floor to take care of signing some paperwork. We were called in and walked through the area of glass rooms, all of them full with chemo patients and their family/friends. Each room had a very comfortable looking recliner for the patient, several decent chairs and tables, and of course a TV. Every patient had at least one person, and several had 2 or 3. Most of the patients were sleeping through their Chemo. We were taken to an office where the Oncology Nurse Practitioner explained how things would work. Some days we feel like we are on information overload. There is so much to try to understand. We left her office and made a dash for the 2:15 shuttle, only to find out that once again, the bus was full. Thankfully, Glenn saved us from having to wait for the bus at 4:10, and drove us home. (Thank you SO much, bro!) We are now on the Radiation schedule, as well as the Chemo schedule. The first day will be June 22, and the last should be around July 30. Unfortunately, not much flexibility on the times — we pretty much had to take what was available. Consequently, there are many of them around 8:00 a.m., which means we have to get up at 5:30 a.m. to catch the first shuttle. I can’t quibble too much about that, because taking the shuttle is SO much less stress (and gasoline) for us to ride the shuttle than have to drive to Portland every day (if you know me, you know I HATE to drive, especially I-5 and Portland). So that’s where we are now. We have the next NINE days with no appointments, which is really appreciated, as we have so much to do before we start the 5.5 weeks of treatment.
Thank you all for reading my ramblings, and keeping us in your thoughts and prayers. They are much appreciated. Keep ’em coming!
Shari and Dennis
The “doughnut” mentioned above was not the radiation machine, but may have been a PET scan or CT? Certainly a lot of info coming in during this period of time. Shari is taking copious notes all the way.
First day of Chemo and Radiation……or not?
By Shari Clevenger — Jun 22, 2015 9:16pm
Hi family and friends~
Well, today was the big day. We got up at 5:30 a.m., got dressed, slammed down a cup of coffee and headed down to the Vancouver VA to catch the shuttle. We got there around 7:00 and had no problems getting through the morning traffic to the Portland VA. (Ok, there WAS a little backup, but our drivers know just how to get around them.) We arrived at the front door at 7:51, and went directly to the Chemo lab for our 8:00 appointment. We met our Chemo nurse, Heidi, and she got us settled in the large glass cubicle with three big recliners, and all glass walls. She started with a blood draw, to make sure that he was good to go for chemo, and got everything set up and started Dennis on the pre-chemo medications (anti-nausea among them). Then, at 10:00 a.m., it was time for the star attraction. She hooked up the first of the two chemo cocktails, Paclitaxel, and started the drip. Dennis was “freezing”, so Heidi brought him a blanket out of the warmer. Dennis was pretty relaxed, and starting to drift off, listening to Neil Young on his headphones. Within 5 minutes, I heard an urgent sounding whisper, and then he repeated it “Shari, get me a bucket”. I looked up at him and his face was as red as a tomato! Good grief, you would expect to see some kind of accommodations for such a reaction, in a chemo lab. I glanced around and could see nothing, (I didn’t know at the time that there was a wastebasket on the other side of Dennis’ chair) so I turned to toward the nurses station and yelled that I needed a bowl or bucket, that he was going to vomit. They jumped into action — Heidi ran in and disconnected the chemo immediately and began to assess him. They told him that he seems to be one of the very rare ones that have that kind of almost allergic reaction to the chemo. He was already feeling better by then, with the nausea subsiding and his face returning to pink, and then normal. I had been texting Dennis’ brother Glenn during the “tomato head” incident, so he showed up at the hospital about 20 minutes later. After a discussion with the Head Chemo Nurse and the Oncologist, Heidi set up a drip of a steroid, and following that, a drip of Benadryl. He was totally back to normal after that. Heidi hooked him back up to the Placlitaxel, but slowed the drip speed by half. We all breathed a collective sigh of relief. By this time, we realized we weren’t going to make it to our 12:30 Radiation appointment, so Heidi called them to let them know we would be a little late. They said if we could get him there by 1:00 that would be great. Heidi said that they could disconnect him from the chemo, and then come back to complete it after the radiation. Once they saw that Dennis was not having another reaction of the Paclitaxel, they stopped his chemo and sent us over to the OHSU building to the Radiation Department. That involves an elevator from 6th floor to 2nd, then walk to the VERY long Skybridge from the VA to the OHSU building, then walking the length of that building to more elevators, down more hallways and more elevators. We checked into the Radiation department, and found some open chairs in the very crowded waiting room. We weren’t there 5 minutes when a technician walked into the waiting room and made a “general announcement that LINAC3 was down for at least an hour”. At first I was wondering who Lynn Acthree was, and why did we all care. Then it popped into my head that the calendar they had given me with all of the appointments on it, were marked LINAC3, which was the radiation room we were assigned to. I walked up to the tech and briefly explained our situation, and she suggested that we return to Chemo and finish the course, then come back for radiation. We turned around and walked all the way back to Chemo Lab. Dennis finished the Placlitaxel with no problems, but they were getting increasingly concerned about his heartbeat, which for the last hour or so had been hovering between 41 and 43. They kept monitoring it, and then started the Carboplatin chemo. This went very smoothly, and lasted about 30 minutes. In the meantime, they had talked to Radiation again and it was decided to hold off on the radiation until tomorrow. Just when we thought we were done, they wheeled in a portable EKG, and hooked him up. Heidi never did give us the results, but did release us, so all must be ok, because we were told we could head out. By that time, it was almost 4:00 p.m., and we were exhausted, hungry and slightly dehydrated. We hurried downstairs and made sure we had a seat on the 4:10 shuttle bus for the ride home. Tomorrow will be the first radiation treatment, and a meeting with the Radiation doctor. Stay tuned!
Shari and Dennis
It was mentioned above about my music I listened to during chemo. During this whole ordeal I did find it quite soothing and calming to listen to music while in a waiting room, during chemo or radiation or on the shuttle bus. Sometimes it may be some classic rock, one day I may feel like Mozart, then it may be some Bob Marley or some country music or meditation tunes. Sometimes some spiritual/gospel would feel good. Of course that summer had “The Fight Song” by Rachel Platten which could be inspiring and empowering as well as Willie Nelson’s “Bring it On”.
One week down, Five to go.
By Shari Clevenger — Jun 27, 2015 3:07pm
Hi family and friends!
Well, we survived the first week of chemo and radiation. You’ve already read the chemo horror story, and fortunately, we didn’t have any more issues with radiation, after the first one was cancelled. We are getting it down to a science, and we try to get there early, so that we might get taken earlier (each session about 20 minutes), then beat feet back to the VA to catch the shuttle home. (It takes 8-10 minutes to walk at a pretty brisk pace, to get from VA to OHSU) So far, not too many side effects, but we hear that both the chemo and the radiation have a cumulative effect, so it could get progressively worse. Dennis is very tired and is cold most of the time. His appetite is very low, which is a problem when he needs 100-130 grams of protein a day. We aren’t getting very close at all to that number. He also needs to be hydrated, which fills him up. Water, Kombucha, Metamucil, and the Orgain protein shakes are good for him, but then he doesn’t want to eat. It’s definitely the biggest challenge so far, however, I suspect there will be more.
So, since there isn’t really much news or amusing stories this week, I wanted to take the rest of this post to thank some very special people for what they are doing for us.
The “kids”, Kim and Mike, have both been down to visit us, along with grandson Isaiah. Makoto and Akira will be coming down with their folks, Mike and Mika, next week sometime. They have also been a great source of support to us with phone calls, texts, and funny videos. Mike has been providing his Dad with alternative medicine using Cannabis and Coconut Oil, in the hopes of killing the cancer, or at the very least, helping Dennis with the side effects of the chemo and radiation.
Dennis’ brother Glenn has attended all of the important meetings with the doctors and surgeons. He has also offered to take us home any time we miss the shuttle or even if Dennis is just not feeling that great. Having the two Clevenger boys at the meetings has proved to be very entertaining in many instances. It’s definitely true that laughter is the best medicine. Also, sister Joyce and her husband Jeff, for helping us with the ionizing electronic air cleaner, so that we can reduce the bacteria and dust from our HVAC system. My sister Janeen, who has done a lot of my grocery shopping from the very beginning, or gone out and picked up meals for us, whenever I have been unable to do it myself, or just too exhausted. She’s also making sure we get in our walk(s) during the day, because the exercise is important as well (even if I DO call her the walk nazi). She has also served as chauffeur to/from the hospital several times.
And last, but not least, our camping group, Fort Vancouver Good Sams. They have been checking in with us on a regular basis, offering to mow our grass, clean the house, or anything else we may need. They have sent Dennis books, magazines and websites with articles of interest for him. But the most amazing thing is that starting with this week, and all the way through this treatment cycle, they are bringing us meals 2-3 times a week! And not just a main course, but salad, fresh grown fruit and veggies, and yummy desserts. This has been so incredibly heartwarming for us, as we are truly exhausted even on the shortest days of treatment. It’s been very difficult to have to miss the entire camping season this year, but it helps a lot to be able to keep in touch with this incredible group of friends.
And of course, thank you to all of the rest of our friends and family who check in here, or send us their love and support by whatever means. You all mean the world to us, and we both say THANK YOU! We love you all for being so good to us.
Shari and Dennis
In addition to the air-scrubber that we installed during this time, we also had a Reverse Osmosis system installed under the kitchen sink to a special faucet where I can get pure clean water to drink. I had at some time earlier stopped the cannabis oil because I just could not gag it down any more. So my son and his business partner figured out how to get 120mg of super-concentrated THC into a capsule. I spent a little over a week ramping up the dosage to over 1000mg of THC daily, 2 caps every 4 hours. The ramping up helped me build a tolerance to the psychoactive part of the cannabis. Even so, I was still pretty loopy, but could function. Our thinking here was that if our government’s FDA department can conduct experiments on rats and mice where they say cannabis and its extracts kills cancer cells, then a whole bunch on a human might do the same. I wasn’t afraid of this much THC since nobody has ever overdosed on it. Also I was upfront with every doctor asking what meds I’m taking. Each one would say, “OK, if you’re just ingesting it, but please do not be smoking it, you don’t need to risk a lung infection”. Whether the cannabis killed any cancer cells in me will never be known, but I believe that it did help against some of the side effects of chemo and radiation. I never did get any burns showing from the radiation therapy. If nothing else, this certainly kept the anxiety level down!
One of the visitors during this time was Doug Batchelor, a member of our RV group. He is a fellow Navy VN veteran (had to serve with a Marine division) and cancer survivor. He had a lot of encouraging things to say to help me keep my chin up, stay positive and that “I can beat this thing!” He brought me a hardbound copy of Tom Brokaw’s book, “A Lucky Life Interrupted: A Memoir of Hope”. It’s about Tom’s journey through his diagnosis and ongoing treatment for multiple myeloma, an incurable blood cancer. It was a very good read and encouraging. If I was to pen a book about my cancer, I cannot think of a more appropriate title. I’ve had a good life, been quite lucky and this cancer is just an interruption to things, merely a bump in the road, albeit a big bump, but we’ll keep on keepin’ on and push through it.
Short update, another week done.
By Shari Clevenger — Jul 5, 2015 9:59pm
Hi Friends and Family,
Dennis asked me to post a short update, just to let you know all is ok. We are getting into a routine, somewhat. Although we do seem to be getting thrown a curve ball now and then. Chemo on Monday went well — they learned from the first week. They take his blood first, to make sure all is well and he can receive chemo; then they hang 3 bags of fluids on the IV stand which contains the antihistamines, and steroids that all have to be delivered before the chemo. And lastly, the Taxol and Carboplatin. I hate Mondays, but it does make the rest of the week seem easy. We are getting to know a lot of the regular staff and a lot of the regular patients during all of this, and somehow it makes things a little easier — we are certainly not alone. So far, Dennis is feeling pretty good. Still tired a lot of the time, but we are getting exercise just walking to radiation and back, plus he does an evening walk in our neighborhood with Janeen and I. The biggest challenge is the appetite and hydration. Dennis gets full very fast, and trying to get in 100-130 grams of protein and 35 grams of fiber, and tons of fluids, is very difficult. We are trying to work out a system, and I track all of his food and drink on the app, MyFitnessPal, so that we can see where we are in those numbers at any time. Fly in the ointment this week: the Radiation machine broke down (2nd time so far) again, and we had to wait a couple hours for our appointment. Silver lining: they gave us two $10 vouchers for meals anywhere in OHSU. Due to Dennis’ tiny appetite, we got two days of meals from those. Other fly: got home from a long shuttle ride (traffic was a nightmare all week) only to discover the air conditioning in my PT Cruiser, is no more. Coolest thing of the week: sitting on the shuttle in the 90 degree weather (engine off, no A/C while driver delivered blood/urine tests to lab), and “PS, I Love You” by the Beatles, came on the radio. As we sat there, at least half of the bus was singing very softly, along with the song. It made my day.
Have a wonderful, healthy week. And please, could we have some COOLING around here? I am so sick of this 90 degree crap! And very done with fireworks.
Shari and Dennis
We are in a record-breaking period of 90 degree weather. Normally the heat doesn’t bother me that much but in my current condition it’s really sucking the energy out of me when outside, which just isn’t much. My circulation is getting messed up, so when at home, Shari may have the air conditioning going in the evening. I put on a hoodie and go sit in a chair on the patio or out in the driveway where it’s still about 80 degrees out.
Around this time it was getting hard to swallow. I think the radiation inflamed the lower part of my esophagus to the point where it was hard for food to pass there. I would completely chew and swallow a small bite and take a second bite. Everything seemed cool until I would take the third bite. It would hit bottom with a horrible pain in the center of my chest. The first time it happened, Shari thought I was having a heart attack as I flew back on the couch grabbing my chest. This happened a few times, but I got wiser and more careful. Then it go to where I could not even get pills (especially caps) down any more. It was around this time I think that Mike brought me down a few dozen medicated SnickerDoodle cookies (120mg THC each) to stimulate some appetite. Unfortunately, they went to the freezer after eating a couple at different times and then having the problem getting food down.
Big shout-out to good friend Don Smith. He called and or texted me at least twice a week during all this to check on me and see if there was anything he could do for me. One Sunday morning around the end of June he called asking if I wanted to come down to Milwaukie, OR to see the traveling Vietnam Wall Memorial making an appearance at a local high school near his house. He knew that I was a VN Vet and I thought it would have been nice to pay respects to a few names I know are on there. As much as I would have liked to have gone, I didn’t really feel like making the 20 mile drive down there. When I mentioned that to Don and he immediately offered to drive up here to Vancouver, WA to pick me up and take me down there, hang out and then bring me back home. I declined the offer but “What a guy!”. One of the most generous men I know!
Reaching the halfway point
By Shari Clevenger — Jul 11, 2015 9:42am
Three weeks are done, and three more to go!
This week was a little rougher than the last. All appointments this week were early morning, which meant we had to get up at 5:30 a.m. every morning to catch the early shuttle. Those mornings have been tough, just because it messes up our schedule for medications, food, hydration, etc. The up side of this schedule was some most days we were home fairly early.
Monday, of course, is Chemo day. We got there in time for our 8:20 Radiation appointment, despite some nasty Monday traffic. While on the shuttle, Dennis saw he had missed a voicemail on his phone. When he listened to it, it was the Radiation tech, letting us know that his machine was down (again) and they wanted to schedule us on an evening appointment. I almost cried. So when we got to the Portland VA, he called them back and they said it was fixed, and come on over, so we did our morning race walk to the Kohler Pavillion.
Made it back to Portland VA in time for 9:30 Chemo appointment and then we sat in the room for a good 30 minutes before they came in to do the blood draw (from which they determine IF he can have chemo, and then along with his weight, they decide the dosage). Unfortunately it was another hour before they got the results, as the Lab was having problems. OMG. Finally they set up the 3 pre-meds, which takes another hour, and then the first Chemo drug, Taxol, which takes 2 more hours. After about 10 minutes, he asked me to go get a nurse/tech, because he couldn’t feel his feet, and wanted to know if that was a side effect. Two of them came in to check, and they paused the chemo and started asking him questions. Then they put the recliner in the upright position, which seemed to do the trick, because he was fine after that (we’re guessing the recliner footrest hit him just so that it cut off his circulation). He slept through the rest of the first chemo, and was sleeping SO hard that he didn’t even flinch or blink when the nurse came in and removed the first chemo hookup and attached the second chemo bag. She also bumped his foot (I had raised the footrest back up at his request) and he never stirred. Finally, we were done at 3:30. It was a very long day, made even more so by the agonizingly long shuttle ride in primetime Portland traffic.
Tuesday was Radiation and meeting with Radiation Doc. First we met with our nurse, Apple, then a rather odd dietitian, a Resident, and finally Dr. Holland. Maybe it was just me, but it seemed like a couple of them seemed to take some joy in telling Dennis that by next week, he’s going to feel like CRAP. What we hoped would be a short day, turned a little longer. Wednesday, another radiation, got in early, and got home at a decent time. Thursday pretty much a repeat of Wednesday, but got home even earlier, like 10:15!! It was almost like we didn’t have to go anywhere! Of course, my excitement was soon dampened, when Dennis started feeling nauseated and it wouldn’t go away, and he got pretty sick right before bed and lost what little he had eaten and drank over the course of the evening. .
He slept ok, and then up again at 5:30 this morning for the last Radiation of the week. Wonder of wonders, the traffic was really light, and we got to OHSU (Kohler Pavillion) by 7:45 a.m. I asked to speak with a nurse about the nausea, and Apple came right out and took us back to a room. She recommended that he start taking the anti nausea medication that he takes before radiation, in the evening as well as morning, and then after discussing with the doctor, and they added another medication for nausea, to take up to 3 times a day. As of now (10:00 p.m.), he has eaten 3 bites of Bob’s Red Mill cereal, one bite of toast, one graham cracker, a small bowl of jello, and after barely touching his dinner, he ate 1/3 of a Choboni yogurt. Again, last night when he was getting ready to go to bed, he got sick. Anyway, Apple told us she had sent the (Compazine) prescription electronically to the PVA, so we could pick it up there, so we headed over, hoping that we could still catch the 9:30 shuttle home. Alas, things never work that way. We waited for an hour and still didn’t see his name up on the TV screen, so I suggested he go check in with them. By this time, we had missed the 9:30 shuttle. He came back and said they were out of stock of his medication! I was very upset. We started chatting with another couple we’ve been seeing on the shuttle almost daily, and they were in the same boat, waiting there for a roll of gauze. We all decided to bail, and called a cab to take us back to Vancouver, since the next shuttle was not until 11:30. We requested a cab for 4 adults, but what drove up was a tiny little Toyota Prius. We gave Dennis the front seat, and Larry and Laurel and I jammed ourselves into the clown car back seat. None of us could even move enough to find the seatbelts. I figure we were packed so tight, we wouldn’t have moved anyway. We went to the pharmacy at the Vancouver VA, and in about 20 minutes, we had the medication. Home again, and when I looked at the time, I felt a little joy that the 11:30 shuttle hadn’t even left Portland yet.
Probably TMI in this post, but I think of this as documentation for what we are going through. Sorry if it gets too long some days. Stay well everyone! And if any of you have any ideas of how to get this guy to eat something, please let me know. I’m hoping the added medications will help, but as of last night, it had not. This is soon going to become a big problem for him if we can’t get some food in him, and keep him hydrated.
Shari and Dennis
Well, I showed them! Those people that were telling me that I would start to really feeling like crap next week were wrong. It was a couple of weeks and THEN I started really feeling hammered. Still trying to stay positive and being encouraged that this is all part of the process and that things will get crappy before they get better. The daily walk from the VA over to the Radiation Department at OHSU was becoming a little more arduous every day, but as they say, you just keep putting one foot in front of the other albeit a bit slower.
Short update — week 4 in the books!
By Shari Clevenger — Jul 19, 2015 6:07pm
This was a pretty uneventful week, all in all. No problems during Chemo (although he was dehydrated and was given IV fluids). He has still been managing to keep the nausea under control, but continues to have problems with eating and drinking. Most of this week, it was just a matter of figuring out what he really wanted to eat, so we had some successes and some failures on that front. Today, he hasn’t been able to eat anything but a couple of bites. He feels like the food is getting lodged in his throat. At this point, I’m just trying to keep him hydrated, giving him juices, popsicles, Boost, water, and jello.
Two more weeks to go. Two more chemos, ten more radiations. Then two months to recuperate, and make a big decision about surgery.
Update: Didn’t get this posted, so I thought I’d add that chemo and radiation went fine today. One more chemo, 9 more radiations. Today was a very long day, but all went well. We are both very tired after not getting a great night’s sleep last night. It will be a 5:30 a.m. wakeup for us every day for the next two weeks. 😦
Shari and Dennis
I think it was around this time that the VA had me on two different anti-nausea medications. One of the meds was Ondansetron and I don’t remember the other. I would still get nauseous, but found that 1 hit off of my dual-coil vape pen of a high CBD cannabis concentrate would make it go away in 4-5 secs. It was amazing that it was so effective! The oil I was vaping was produced by a Seattle company called CO2 Organics and this particular product was 40.34% CBD.
New challenges – a little more difficult week
By Shari Clevenger — Jul 25, 2015 9:59pm
I already posted a short bit about Monday, so let’s move on to Tuesday. Tuesdays are radiation and meeting with the radiation doctor. We talked mostly about the problems Dennis is having with eating and drinking. Little by little, it’s getting more difficult. The weird thing is that sometimes he can eat small bits of food with hardly any problem at all, and the next time he tries the same, he feels like the food is getting lodged in his esophagus. Sometimes even water. Most of what he has managed to eat this whole week were things like jello, popsicles, juice and watermelon. Not much in the way of protein and fiber, but they said the most important thing is to stay hydrated. Wednesday, my dear brother in law, Glenn, met Dennis at the shuttle dropoff in front of PVA (Portland Veteran’s Administration) Hospital. He walked with Dennis to radiation, and after, he walked him back and waited with him for the return shuttle. He did that again on Friday. It was nice to have a little time to catch up on things at home, since daughter Kim and her Italian, Frank, were coming down on Saturday. So I managed to get some dusting, vacuuming and mopping done those days.
Thursday was a meeting with Dr. Leonard, the Oncologist. Again, we discussed the problems with eating and drinking. She decided to send a note to the Surgery team, to have them consider the feeding tube option. By Friday, it was getting more and more difficult to find something he could eat/drink to keep him hydrated. By Friday night, I knew we were in trouble with the hydration. I was just hoping against hope that things would just magically improve. Saturday morning, he woke up to severe leg cramps that just wouldn’t go away for quite a bit. We couldn’t get any fluids in him to speak of, so we decided it was time to call for help. We called the VA and after waiting what seemed like forever, we got to talk to a nurse somewhere back east. After much discussion, she told me to take him to the ER, so off we went. Now those of you who know me, you know I HATE driving — especially in traffic, rain, or dark. Thankfully, traffic was light, and it was daylight, but it was pouring rain when we left. The staff in the ER quickly decided that he needed hydration above all, so they gave him two liters of fluids. They also did a chest x-ray. When the doctor came back to talk to us again, he said he was going to give Dennis some “Magic Mouthwash”, a combination of Benedryl, Lidocaine, and Malox. He told Dennis to swish it in his mouth, and swallow it. Within 30-60 minutes, it would numb his throat and esophagus, so that he could drink. Dr. suggested he “guzzle” the liquids during the “window of numbness”. He asked Dennis to try to drink three bottles of Ensure every day. We laughed. We both knew we’d be lucky to get ONE bottle down him, whether Ensure, Boost, or other drink. The Doctor also said he was going to request an Endoscopy for next week, so make sure there wasn’t something going on in there that we don’t know about.
At last, we were free to return home and finally got our visit with Kim and Frank, and then brother Glenn dropped by as well. Nice afternoon with family, and Dennis felt good enough to go down to the Farmer’s Market in Vancouver, who had an Aloha theme this weekend. Sadly, we got there as the Farmer’s Market portion was closing down for the day, but we did get to wander through the Aloha section.
Dennis tried the Lidocaine once, and managed to get down about 1/2 bottle of Boost. He wasn’t too impressed. After all of our company left, he decided to try it again. He swished, he swallowed, and almost immediatly, he was throwing it up, along with some of his precious fluids. We were both very discouraged. We decided to let it go for tonight, and try it again tomorrow. He said he thought he could eat an Eggo, so I toasted one up for him, and he ate all but one bite, and with no Lidocaine. I’m not overly concerned about hydration today since he just got two liters of it, but unless tomorrow is easier, we could find ourselves back in the ER tomorrow, at which time, I believe they said they would admit him. 😦 The ER doctor also told us he was contacting the Oncologist and the Surgery team — we need that feeding tube NOW, or he could lose a lot of ground. We so hoped that it wouldn’t be necessary until the surgery, but it has become clear that we cannot wait.
So that’s where we stand now. We are both completely exhausted from today’s hospital adventure, and plan to go to bed early. We both desperatly need SLEEP! My prayers for tonight is that we can keep him hydrated and not have to make another trip to PVA tomorrow! Thank you all, for the continued well wishes and prayers.
Shari and Dennis
DONE with Chemo and Radiation! But the challenges are not over.
By Shari Clevenger — Aug 2, 2015 11:22pm
Hi family and friends
Well, this was the last week of treatment. Monday was the last Chemo treatment and boy was he glad to have that done with. We had a visit from the Admin from the Surgeon’s office, and she said that the surgeon had nixed the idea of a feeding tube into the stomach, because that’s where the surgery will be, and there would be a risk of infection. They did not want to take that risk. The other option was the feeding tube in through the nose and down to the stomach, which would require no incisions. Dennis was very concerned that he would not be able to use his C-Pap with that tube in, so they are taking a wait and see stance at this point. Dennis had five radiation treatments this week, the last one being on Friday. It was very hard to be excited about the end of the treatment when he was feeling so lousy. We had to go to the chemo section every day after radiation and get one or two bags of fluid to keep him hydrated.
The section above was written two days ago. There were other things that happened over the course of that week, but I seem to have forgotten most of it, in light of this weekend. Dennis continued to lose ground in the nutrition and hydration department, so on Saturday around 3:00, after he’d eaten nothing, and drank about 14 oz of fluids, then took a three hour nap, I decided we had to get help. After 45 minutes on hold for a VA advice nurse, I finally got to talk to someone. After lots of explanation, she asked me to take his Blood Pressure. It was 89/69. When I told her that, she said “He needs to go to the ER”, and even suggested I call an ambulance. That freaked me out. After I hung up, Dennis asked if I thought I could drive us down there. I knew my own blood pressure was up, so I put the same BP machine on my wrist that gave Dennis the reading of 89/69. My BP was 165/97. I read it to him, and said “do you think I should drive us down there?” ‘Nuff said. So I called our camping buddy, Michele, who has been asking me for weeks how she can help, and asked her to drop us off at the ER. She was at our house in 10 minutes, and off we went. They gave him two liters of fluids and then offered him the option of being admitted and perhaps putting in the nasal feeding tube in the next 24 hours. Dennis decided it would be best, because if we went home the chances were very good we would be back on Sunday for more hydration. So that’s what we did. We still aren’t sure how it’s going to work with the C-Pap, but we don’t feel we have a choice at this point. They gave him two liters of fluid, and Michele stayed with us through it all, and then took me home around 10:00 p.m. (Thank you, Michele!) This morning, my sister Janeen dropped me off at the hospital, where I spent the whole day waiting to see a doctor or hear SOMETHING from someone who knew what was going on, and what the plan was. At about 5:00, a nurse came in and said that they had decided to wait until tomorrow, so that he could go to the Internal Radiation department, where they could put in the tube, and watch it to make sure it went to the right place. I was really relieved about that, because their other option sounded a little sloppy to me. Trying to get him to just swallow this tubing when he can’t seem to get food or liquids past his tumor area, just didn’t sound like a good option. Sissy picked me up after 7:00 tonight and brought me home. (Thank you, Janeen!)
So that’s where we stand as of now. I hope that it will be painless and successful with the procedure. He needs to get a break from this misery.
Thank you for reading,
Shari and Dennis
I think this was the time when they put me in the room with the nasty bathroom. This bathroom had a musty mildew odor and it wasn’t that it was just MY senses being screwed up. The VA’s solution? They brought me in a little tiny non-aerosol spray container of room deodorizer. “Here, shoot some of this in the bathroom before you enter.” Thanks Michele for driving us over. It was nice to have a nursing student to help translate some of the “med-speak” for us. She stayed with us until I got situated in my room and then she and Shari left for Vancouver about 7pm.
Quick update — Tuesday
By Shari Clevenger — Aug 4, 2015 3:20pm
Dennis is still in the hospital, but expecting to bust out of there this afternoon. Sunday was a flop, because they were considering having a Nurse just give him the tube to swallow and “it should just go down there by itself” and then they would take an X-ray, and just hope for the best. We didn’t quite feel comfortable with that. The alternative was to wait until Monday and have the IR department put it in with a “live X-ray” to watch where it was going and a better chance of getting it to the small intestine. So we chose that option. They took him down around 10 a.m., and when he returned, the first thing he said was that it was the worst thing he’d ever gone through. Because of the radiation and chemo, it was a big challenge. At one point they had to pull it completely out, and start over. Poor Dennis, that time he got sick (really triggers the gag reflex when they are shoving a tube down your nose and throat). Surprisingly, it went through the esophagus just fine, right past the tumor. But when it got to the stomach, the doctor said it was “torturous” trying to move it to the right position. They made many attempts to get the end of the tube to the small intestine, but could not, so they left the tube kind of coiled in the bottom of his stomach and they are sort of confident that the weighted end will just drift on down to the best position.
Next up was the Nutritionist, Malissa, to come up and show us how to do the feeding. The first step was to show us how to flush the tube, because you have to do that before and after every feeding. That same syringe is used for the feedings when needed, like if you are at an appointment, out of the house, or anywhere it’s not convenient to carry all the gear and the stand to hang it on. She explained every step to us, hooked it up to the tube, and …….. nothing happened. She couldn’t get it through, so she went to find Dennis’ nurse, Anthony. Anthony couldn’t get it going either. They had a little conference with the IR team and it was decided to try to pull out a little of the tube, about 10 cm, to see if it was just up against stomach wall, or kinked. They decided it was kinked. She pulled it out 10 cm, tried again — nothing. She pulled out another 10 cm or so, made another attempt, and this time was successful. Dennis was a trooper through all of this torture. Finally, they hooked up a bag of the nutrition and started the drip. He seemed to be doing ok with that. They want him to work up to 6 cans a day of this, and to eat anytime he feels up to it. As the surgical assistant Robin said, “we want to plump you up!” before the surgery, because he’s lost too much weight.
My back had been bothering me all day, so Glenn and I decided it was ok for us to leave. I caught the 6:15 (last) shuttle bus. About 5 minutes into the ride, I received a text from Dennis that he’d gotten sick. Great. When I got home, I called the 7th floor and got hold of his new Nurse. He told me he was going to order a pump for him, so they could slow down the drip. They assumed that it was because he has had so little in his stomach for so long, that that little bit made him sick. There was a little blood in it, but they didn’t seem worried, as it was caused from the poking with the tube. He texted me right before I went to bed and said he still felt crappy, but was going to let the Nurse attempt to get some more of the nutrition in and then go to sleep. They gave him an Ambien, so he slept ok.
I woke up unable to walk for the most part, because of the back pain. Texted my amazing brother in law Glenn, and he took over for me today. I’ve been in contact with them through much of the day and they are making progress. He’s now on his second can, and the rumor is that they will let him go home shortly after that, as long as he can keep it down and doesn’t have any other issues. And now, my ice pack is starting to thaw, so I must end this and lay down.
Shari and Dennis
My dear brother Glenn has been a rock-star through all this. I think he was there for every one of my chemo treatments and even a few of the radiation appointments in addition to consults with oncologists, surgeons, etc. It was awesome that he was willing so many times to drive us home through the awful North Portland traffic back to Vancouver.
That experience of getting the NG tube inserted was the worst thing I’ve gone through, so far. Anytime something is poking in my throat is going to create a gag reflex with me. They kept pushing it hard and telling me “OK, swallow hard NOW”. All the while they are trying to steer it down by manipulating a little knob on the outer end that controlled the stainless wire that was running down through the rubbery (silicone?) tube. As they are doing this, they are watching on a monitor a live x-ray of my chest. To help get it to the position they wanted they would tell me to roll to one side or the other. This went on for about 30 minutes or so. Their goal was to get it to the furthest part of my stomach near the pyloric region, or maybe beyond that. It ended up in sort of a coil, but they said with time the end will migrate to where it is supposed to be. Where it exited my nostril they had some kind of super sticky tape that secured the tube near the tip of my nose. The extra 6 inches or so of the tube would be taped to my cheek until feeding time when the tube from the bag would be plugged into this NG tube.
During this hospitalization they were doing the feeding with the NG tube using a motorized pump. Odd that they wanted me to learn to work that pump even though they said I would be sent home with only a pole on which to hang a bag of nutrition and let it “gravity-feed” me. It took some trial and error to adjust the flow, because if it was too fast it would make me sick. Sometimes it would get plugged up or a kink would restrict the flow. What a hassle!
And the hits just keep coming! Not for the squeamish…..
By Shari Clevenger — Aug 8, 2015 1:10pm
When we last left our hero (Tuesday, Aug. 5th), he had been on the verge of release from the hospital with his shiny new feeding tube, fully hydrated and two cans of nutrition in him. After Glenn dropped him and a carload of supplies (and he assembled the stand for us), we fumbled our way through the first feeding on our own. First we flush the tube with warm water, then we hang a bag of Jevity and a bit of water, on the stand, and hook that up to the tube and we are on the way. Problem number 1: the feeding bags they gave us were for the Pump infusers, and we were doing only Gravity Drip (thus the pole). Some of them just would not drip, and others would take 3 hours to drip down. We finally discovered that we could make the bag pole a LOT taller than we originally thought, and that helped.
So, we had a pretty decent day that first full day at home, but only managed to get in three cans that day. We were supposed to add more every day until we got up to 6 cans a day. Dennis was having some coughing, especially if the water/food was too cool. Since he’d missed a lot of his normal allergy medicine, his allergies flared up, so he was doing a lot of sneezing as well. He was starting to feel human again over the course of the feedings, as the nutrition and hydration kicked in. That night, right as we were going to bed, he was coughing a lot. He tried to cough up some phlegm that was really bothering him, and it triggered his gag reflex. He started to throw up. WARNING: IF YOU HAVE A WEAK STOMACH, SKIP TO NEXT PARAGRAPH. He ran to the bathroom, and I was right behind him. He was choking and gagging and vomiting, and pretty soon, he had a hand full of the coiled up feeding tube that was in his stomach. He instinctively tried to shove it back down, but I remembered they told us about this possibility in the hospital, and absolutely do NOT try to shove it back down, and yelled “NOOOOOOOO don’t DO that!”. He gasped out the word: SCISSORS, so I ran to the kitchen to get them, (and I admit, I RAN WITH SCISSORS, sorry Mom) and he had me cut the tube. The part from the stomach was in his hands and once it was snipped he was able pull the rest of it out of his nose after ripping off the tape securing it, and immediately felt much better. Since he felt so good, and was hydrated, we decided to just go to sleep and go to the hospital in the morning.
I got up Thursday morning (surprisingly, we both slept pretty well) and started making phone calls. I called every number I could find, and left increasingly desperate messages. Someone needed to tell us where we should go, etc. We are at that in-between treatment and surgery phase, so it wasn’t clear WHO we needed to talk to. So I called Physician’s Assistant to the Surgeon, his Oncologist, his Primary Care, and Nutritionists. Then finally got a call back from one of the Nutritionists that I hadn’t even left a message with — just called and hung up on voice mail. She started the ball rolling. I looked at the clock, and the most recent shuttle had just left, and the next one wasn’t until 3:15, which would have gotten us to the chemo lab too late to get more than one bag of hydration, so in desperation, I asked my brother in law, Glenn, who had just gotten to a museum with a friend. He, being the amazing brother that he is, immediately left the museum and came to get us. We went to the lab for hydration and we waited and waited for someone to let us know the next step. Tall guy Andy walked in and informed us he would be inserting a new tube, and then take Dennis down to Radiology to check placement. We found out later that Andy “wasn’t licensed to give Lidocaine before a procedure”, so there was no numbing. It was horrible to watch, as poor Dennis was gagging and swallowing that tube down, but it went in easier than the first one had, because he was sitting up straight instead of lying down, as with the first tube). Andy took him to Radiology and they returned him and said it was already down into the small bowel, which is where the previous one never made it to, as it was all in a big coil in the bottom of his stomach. I have to say — Dennis is one hell of a trooper. Everything they throw at him, he just takes it, sometimes quietly and sometimes not so much. So anyway, they hadn’t pulled the tiny metal rod that was inside the tube to allow them to view placement with X-ray, and we were told that the nursing staff in chemo would do it, and then do a test flush to make sure it wasn’t plugged like the first one. (We found out the next day that the wire was definitely supposed to be removed by the staff in IR). Glenn and Dennis and I were just sitting in the room laughing and killing time, when Dennis went to blot his nose cause it felt like his nose was dripping. When he brought his hand away, the tube came with it. It literally had been working it’s way out the whole time he was there, because of the weight of the wire, and it just fell out! So, everyone sat around scratching their heads, wondering what to do now. We already knew that the Radiology staff left for the day right after Dennis was there. So we were finally told to go home and come back Friday. They told us to go to the Chemo lab for hydration while everyone tried to figure out what to do now.
Friday morning, we took the 8:50 a.m. shuttle and went straight to chemo. He still had the port in his arm from the day before, so they started hydration immediately. We sat and we sat and we sat. The chemo nurses were taking turns calling down to Interventional Radiation and also to Fluoroscopy to find out WHO was going to insert a new tube, and who was going to check the position. We could hear all of these phone calls from in the chemo cubicle. This would have been funny had it not been SO darned irritating! Finally, one of our favorite chemo nurses, Cindy, got on the phone and called the Floor Nurse for the 7th floor and asked her to come down and put the tube in, and she agreed. Another painful process, but Dennis was stoic. Cindy ran out the door and returned with the only wheelchair available — a double-wide. We called it the Limousine wheelchair, and off they went to x-ray. When they returned, they said the tube was right where it needed to be. Melissa, the Nutritionist came in and introduced us to another hospital employee who was going to put a “bridle” through Dennis nose (essentially a small ribbon that went all the way up one nostril and out the other). I’ll spare you the details of the insertion — suffice it to say, it was yet another very painful experience. Of course, as luck would have it, we missed the 4:45 shuttle by FIVE minutes, so we had to wait for the 6:15 bus. Thankfully, since it was Friday, the traffic wasn’t horrible, and we were home by 7:30 p.m. It has taken a while for him to get used to the bridle, as it makes him sneeze constantly. Right after the procedure, while waiting for the shuttle, his nose kept running almost nonstop. I finally went back to the 6th floor chemo lab and begged for a box of their fine, one-ply sandpaper kleenix for him. So far, so good. We now have the correct bags for the Gravity Drip, and it seems to be working well. Right now, he’s lounging in the bedroom, watching the TV, with his laptop nearby, and having lunch all at once. LOL. He’s working on can’s 2 and 3 for today, so we might get up to 5 by tonight. It will take in a couple days to start feeling the effects of having a steady nutritional source. From the time he lost the original tube until he got the third one, he went over 2 days with no nutrition, so that was a little setback.
Please keep us in your prayers. This is supposed to be our time of rest and rejuvenation, and thus far, it hasn’t been. Take care.
Shari & Dennis
They told me that since this was getting to be late afternoon that they could not get a regular nurse to put a new NG tube in me. They said we’ll get Andy, he can do it. So, in walks this guy in street clothes wearing a VA tag. I had no clue if this guy was experienced or was he even part of the medical staff or just someone they called up from the Accounts Payable Dept. Anyway he has me sitting up and starts shoving the weighted end of this tube in my right nostril. I go “Wait a minute here, what about the Lidocaine?” He says “Oh, no I’m not licensed to use that.” Oh boy! So after much gagging and swallowing and coughing (this is anything but gentle), he gets it in and says they are waiting for me over in Radiology. So they wheel me over there and I get up on the bed/table thing and they put the x-ray thing over me and are fine tuning the positioning of the tube. After about 20 minutes of them manipulating this thing in me, they say they are done and are putting their coats on. I had already kept them well past 5pm doing this on me the second time. So I’m put in a wheel chair for the ride back over to the Infusion Dept. I’m back in the private room with Shari and Glenn sitting there with this tube hanging out of my nose and the steel control wire still in it. I ask a nurse about the wire and that it is supposed to be removed. Also, where is the tape that is supposed to secure this thing to my nose? She says they cannot do it that it has to be removed by someone in the Interactive Radiology area. I told her they all could not get out of there fast enough when they were done with me. She said lets wait. Soooo, as I sit there I’m constantly wiping my nose because anytime these tubes have been in my nose they trigger something that makes my nose run. After about 40 minutes of waiting, I go to take a tissue to my nose because it felt like it was running. Well, out slides the +20 inches of tube right down onto the floor. It was a simple matter of physics that with a metal end hanging out of me with no tape, that gravity and a slippery pathway, it was inevitable that it would fall out. Now I’m usually a pretty patient guy, but this shit is starting to wear me down. When was somebody going to come do something? So they send me home for another day with no way to get enough nutrition into me.
So the next day we are back to the hospital again to get an NG (nasogastric) tube inserted in me. This was done with me reclining in one of the chemo recliners. She Lidocained my nostril and inserted the tube. It was still quite uncomfortable but I think I was getting used to it by this time. Then Cindy called in a guy to install a bridle that would hold the tube to my nose. This was the most horrible experience yet! He basically ran two pieces of stiff plastic (one in each nostril) up me and is poking around way up in my nose. That was the most pain experienced yet. When the two plastic pieces meet up there, they snap together with a tiny magnet. That enables it to be pulled back down one nostril, fishing through a narrow cloth ribbon that is supported by the bone or cartilage up in your nose where the nostrils come together. With the two ends of the ribbon hanging out he is now able to tie them together under the philtrum and it has a small clamp that secured the tube in place. Much more effective than the tape, but oh so painful to install.
Well, things didn’t quite go as we’d hoped…..
By Shari Clevenger — Aug 16, 2015 1:07pm
Hi family and friends~
When I last wrote, I was hoping to get Dennis up to 5 cans of the Jevity formula. However, he continued to have problems with the formula. It was giving him bad stomach pains, bloating, and other issues, and he was just miserable. It actually took a couple of days for him to really get used to the bridle, and for his nose to stop running. He still had problems with more than 3 cans of the formula, because his stomach has shrunk so much that he just feels too full. The formula is 8 oz., but you have to do a water flush before and after to keep the tube clear, plus add another couple ounces to the formula, to thin it out. Even with all these flushes, etc., he’s still running a bit low on hydration. He survived the weekend, and we were thrilled that we didn’t have to go to the hospital!
Monday, I emailed the nutritionist first thing (God bless that girl, she emailed me back before she even left for work). Later, we talked at length about the symptoms Dennis was having, and she was concerned that perhaps he had C. Diff, which is a really bad infection in the gut. Oddly enough, you can get it from Chemo, and also from the Prilosec he has to take twice a day. She requested a stool sample and said we could take it to the Vancouver VA and it would be delivered via the shuttle that we have ridden for the last 8 weeks. Thankfully, the test came back negative. Glory be, we finally got a BREAK! So Malissa (Nutritionist) and I talked again, and she asked me to give him a Boost drink through the feeding bag to see if he had the same reaction as the Jevity. We did, and he tolerated it just fine. She then ordered 6 cases of Osmolite, which is very similar to Boost, but it has much more calories (355 for 8 oz) and Protein (14.7 grams), but no fiber. The Osmolite was delivered to the VVA Pharmacy, where we picked it up (Thank you, Janeen). We give him some Benefiber via the water flush or added directly to the bag with the formula.
I had high hopes for this. Unfortunately, the first one was ok, and the second one started to give him problems. I was running it at a fast drip because it bothers him so much when the formula gets cold. So after another consultation with Malissa and Marcy from Nutrition, it was decided that I should slow it way down, both the drip from the bag and the water flushes. That has made it much easier on his system. Only problem is if we slow it down TOO much, it takes 3-4 hours for one serving, and we can’t possibly get up to over 3 cans at that rate.
We are now up to 3 cans a day, and he is tolerating it very well, except he feels very full. He continues to try to eat a little bit every day, and is starting to feel like the inflammation in his esophagus is starting to subside a little, because it seems a little easier for the food to pass through to the stomach. That is hopeful (and about time!). He is vey tired, still, but should start feeling more and more energetic as we get more in him for an extended time. We have now gone NINE days with the tube in place, and nine days with no Hospital!!! Yay!
Dennis’ hair has been thinning at a rapid rate, and he finally had enough yesterday, and asked his brother Glenn to come up and give him a buzz cut. Glenn came up at 2:00 and did the deed — turns out Dennis has a very nicely shaped noggin, and the peach fuzz is fun to run your hand over. At 3:30, their Uncle Duane and Aunt Pat, cousin Cliff and his wife, Gloria, all came for a visit and stayed about three hours. It was a wonderful visit, full of laughter, which was very much needed. Humor is a staple in this family, that we can’t live without. I’m attaching a photo of Uncle Duane, brother Glenn, cousin Cliff, and Dennis. As you can see, there are similarities! Cousin Cliff told Dennis that he was now part of their group, but if his hair grows back, he’s outta the club!
Take care, and keep us in your prayers. As the Physician’s Assistant (to the Surgeon) told us, “We need to plump him up!”.
Shari and Dennis
Yep, it true what they say about the Chemo poisons killing some of the “good cells” while doing their work against the rapidly reproducing cancer cells. The cells in our hair are a rapid growing type, just like the targeted cancer cells, so they are going to take a hit. My hair was falling out pretty good, but not really in clumps like a lot of people describe. Shaving it all off was a relief that I didn’t have to deal with it anymore for a while. Well, as I write this a year later, it’s back but different. It used to be thick and the follicles were fairly coarse. Now it is a bit thinner on the scalp and the follicles are like flimsy, thin, strands of a wimpy silk-like texture. I’ve read that after a number of years the hair may revert to it’s original state. We’ll just see…
Short, but relatively sweet….
By Shari Clevenger — Aug 23, 2015 3:07pm
It was a very busy week, so I’m going to keep this short. The feeding and eating is slowly but surely getting better. Over the week, most days he has been up to about 1500+ with getting 4 cans a day, and enough fluids that he’s staying hydrated. And now we are starting to add some food in. Of course, as things usually go, it’s 2 steps forward, three steps back. One day, he ate a whole container of Chobani yogurt with a sprinkle of granola, but then after that, it tasted too sour. Finding food that appeals to him varies from day to day, so it’s difficult to plan anything. We don’t have to worry about calories for him right now, because he’s lost 45 pounds now, and needs to be putting some back on. So, if Popeyes chicken tenders and beans and rice sounds good, that’s what we do. Slowly he is building up the food, adding to the nutrition drink, and getting those precious calories. Yesterday had to have been the best so far. Daughter Kim came down Friday night, and left Sunday noonish. Even though it was incredibly smoky here yesterday because of brush fires in the eastern part of the state, he wanted to go to the Farmer’s Market in downtown Vancouver, so off we went. I was concerned about the smoke and the walking, since he hasn’t done that much yet. He was a champ, (we did have good close parking karma) and we walked all the way through the Farmer’s Market, stopped at one booth with delicious looking fish tacos, and ordered a plate of 3 and a Horchata to drink. We each had a taco, and he ate almost every bite of his, plus a large portion of the Horchata. I was amazed he never seemed to have any difficulty with that much stopping and walking (he also did some “testing” of olives, hummus, etc. at various booths). Later, we went to Super Taco Express, having whetted our appetites earlier, and he had a Carne Asada soft taco (these are small street-tacos, as were the earlier fish tacos) and refried beans. After dinner, we drove down to the Columbia River to watch the amazing orange glowing sun (caused from the smoke) setting. So we had to park and walk quite a little hike to the beach. The protein in his food and drinks is finally starting to pay off with a little energy. Added benefit, he slept better last night than he has in weeks, because he was quite tuckered out.
He still has pain when he tries to eat, but if the food is good and appetizing to him, he says it is worth it. Dennis, Kim and I went out for breakfast this morning, and he ate a fried egg, a little bit of hash browns, couple bites of english muffin with orange marmalade, and a couple bites of pancake. Had a tough time, but he got through it. Onward and upward!
We have several doctor appointments this week – a blood draw at the Vancouver VA on Wednesday, and meeting with nutritionist and the Oncologist on Thursday at the PVA. I’m trying to tamp down my great enthusiasm about going back to the Portland VA hospital. 😦
Shari and Dennis
I remember this quite well! Those tacos were pure heaven, as was the horchata. I just have to remember that no matter how good something looks, sounds or tastes, I have to exercise some moderation in how I consume it. Too much too fast and I pay for it with a few minutes of sharp pain in the middle of my chest. The walk on the soft sand of the Columbia River beach felt good. It was probably about a half mile round trip but felt really good to be out and by the water.
Another week down, progressing slowly…
By Shari Clevenger — Aug 30, 2015 12:16pm
Dennis continues to try to eat food so that he can cut down on the tube feeds, but some things work and some don’t. This week he has had a lot of pain from the throat down the Esophagus when trying to eat. He is still requiring 3 cans of the Osmolite most days, but there have been a few where two would do it. One night he ate a plate of spaghetti, but the next time he tried it, it was too painful. It makes it very difficult to try to think of things that he can eat, but I’m beginning to think we just need to stick to the soft stuff and forget trying the other things until that pain subsides. He gains a couple pounds, and then loses part or all of it, so progress is very slow.
This week, we had the appointment with the Nutritionist and the Oncologist, at 11:00 and 11:30. We waited about 30 minutes until the Nutritionist found us (where the sign up desk people told us to wait). She was looking in a different area, and likely never called our names, because we would have heard her where we were. We ended up spending most of our appointment time with her, because the oncologist was “running late”, and never showed up until 11:55. By that time, even Dennis had lost patience, and told her “We only have 10 minutes, because we have to catch the 12:15 shuttle”. It’s very difficult to work the tube feeds in when we have these appointments, and it’s only going to get worse as these ramp up.
A very hopeful thing happened this week. We got a call from a gal at the PVA, telling us that there is a good chance that Dennis’ surgery will be outsourced to OHSU. This was AWESOME news, as I feel that even though his surgeons at the PVA work at both hospitals, this will be a new “superstar Esophageal Cancer Surgeon”, and I suspect the OR equipment is a lot more updated than the PVA. I also asked if he would be in OHSU ICU rather than PVA and she said “absolutely”. Which also made me feel much better, because we know PVA has a lot of staff shortages right now. Please keep your fingers crossed — we should find out early next week if he is a go on that.
Tuesday, we go to PVA for a CT scan at 2:00 p.m., and Friday, we go to OHSU for PET scan at noon. That should be fun, if we have to take the 4:15 p.m. shuttle home on the Friday of Labor Day weekend. The CT will show if the tumor has shrunk, and the PET scan will show if there are any more live cancer cells. I’m praying for YES on the first, and NO on the second. It’s going to be a real challenge trying to keep him up to 2000 calories when we have to spend a huge chunk of the day at the hospitals. He is able to gag down some of the protein drinks now and then, so that could help. With the tube, you have to do a flush before and after the food (otherwise that very sticky liquid would clog up the tube) and then trying to give the fluid using only the big syringes, is both painfully slow, requiring 4-6 syringes, and painful on the hands. Sigh.
Dennis has good days, and bad days. On the good days, he can go for walks, or do little chores outside or in the RV. One day this week, we took the RV out to top off the propane, up to Emissions Testing (passed!), then to Ace Hardware to get the license tags renewed, (saw our camping buddy Doug in line for his RV tags, and had a nice chat with him) and lastly, topped off the gas tank. He very much enjoyed that short little trip. He said it wasn’t tiring at all. On the bad days, it’s all we can do to get 4 cans of nutrition in him, and he can eat very little because of the pain. And usually on those days, he’s really exhausted and spends much of the day in bed.
If you would like to chat with him, or visit, the best thing is to call, text or email ME and find out if we are home, and if he is feeling up (and awake) for visitors or a phone chat. They really do help him, I think, as they are a good distraction for him.
See you next week, with another scintillating update.
Shari and Dennis
I remember this period. It was exciting to get the word from the Portland VA that they were now entering a program where the PVA would sub out their esophagectomies to OHSU’s team for qualified candidates. There were lots of questions of health history, smoking history, alcohol use, etc. After a few days waiting we get the call from our contact (Joan) at the VA that I am indeed a qualified candidate for the operation to be done at OHSU. This was a relief to us since we did have a few concerns with procedures being performed in a government facility with supplies from the “lowest bidder”. We had also been hearing rumblings from some of the staff at the VA about some ongoing labor issues and we certainly don’t need any distractions like that.
Overall, I cannot really complain about the level of care I received at the Portland VA Medical Center. My only real gripe was with their “Area A” where we would have to go for appointments with my Oncologist. She was always late. I would patiently wait until 30 minutes past my appointment time before going to the receptionist to see what is going on. After a couple of those I would just walk directly into the clinic area and ask “How long is Dr. Leonard going to be, we have to catch a shuttle bus in 20 minutes”. That was about when they would placate you by putting you into a exam room for another 10 minutes or so. It’s kind of unfair to cut short the time for asking questions or hurrying the doctor up for the sake of not waiting 1-2 hours for the next bus.
By Shari Clevenger — Sep 7, 2015 12:56pm
The week went by rather quickly. Some days, Dennis has eaten close to or over 2000 calories, and others, more like 1400-1700. He’s not putting back on much weight. Gains a couple pounds and then loses it. Very frustrating. It’s mostly that he just gets full way too fast. Eight ounces of the nutrition drink makes him feel stuffed. Our theory is that the radiation and chemo did such damage to his stomach that there is just not much room for food. When he gets too full (on VERY little food), he is very uncomfortable. Every day is a new challenge. He has been able to go for short walks in the afternoon on most days, and has done some work on computers and in the RV. He gets very tired very fast.
The CT scan was cancelled (Tuesday), because it was decided that the PET scan scheduled for Friday would give them the information they needed from the CT scan as well. So they added a Pulmonary Function test at 3:00 on Friday, a couple hours after the PET scan, just so we wouldn’t get bored, or worry about catching the 2:15 shuttle. We did make it to the 4:15 shuttle with time to spare, and got home around 5:30, which wasn’t too bad for Labor Day weekend traffic. We have an appointment on Wednesday, with the Thorasic Surgeon, to discuss the upcoming surgery and the results of the PET scan. Please keep us in your prayers!
Shari and Dennis
PET scan results and meeting with surgeon
By Shari Clevenger — Sep 12, 2015 9:27am
Dennis has continued to add more food into his day, and less of the tube feedings. The GI Junction (at the valve where the esophagus meets the stomach) is slowly healing to where the pain is less and less when he eats. Tuesday and Wednesday, he didn’t have one tube feeding, just food and nutrition drinks. We met briefly with his Nutritionist yesterday before we ran for the shuttle, and she was very pleased with this news. We want to get that tube out ASAP, but also want to make sure he can eat consistently.
The big thing this week was the meeting with Dr. Sukamar, the Esophageal surgeon. He started the meeting showing us the PET scan on the computer. It was fascinating to see, as he pointed out Dennis’ lungs, and esophagus, the feeding tube, and then as he moved the cursor, it moved as the camera did, on a little tour of Dennis’ insides. He pointed out to us that there was no visible signs of cancer in the lungs, esophagus, stomach or lymph nodes. He cautioned us though, that there is always a chance of a microscopic rogue cell. After that was done, he began to tell us the “odds” in this particular cancer. At Stage 1, the surgery would be the only treatment needed. However, at Stage 2, which is where Dennis is, the cure rate of the chemo and radiation alone is about 50%, and with the surgery, about 60%. He also mentioned that the issues Dennis has had with the food getting through that GI Junction, would be removed, since that will no longer be there. Plus, the removal of all the areas that the cancer lived will be removed, that can decrease the odds of a return. If a patient is WELL enough after the chemo and radiation, they recommend the surgery. I asked Dr. Sukamar how they determine if the patient is well enough — his response was “the ability to climb stairs”. He went on to explain that if the patient can climb 8 flights of stairs, then he is considered likely able to survive the surgery and any possible complications. He said that this surgery is one of the most complicated surgeries one can have (the other surgeon that we’d met with early on had mentioned it was more difficult and extensive than cardiac surgery). He took Dennis to the stairs and Dennis passed with flying colors. At the end of the meeting, Dennis started to tell Dr. Sukamar that his thought is that he wants to continue on the course he had decided on — to have the surgery. At this point, Dr. Sukamar took Dennis’ hand in both of his and said quietly, “Take a day. Take two, if you need it. This is a big decision”. I was impressed with that. He had been so clinical up to that point, and this showed me a lot about him. Despite the intensity of the surgery and the possibility of complications, Dennis said the next day that he wants to have the surgery, so we called Dr. Sukamar’s assistant, and passed that on. She (Joan) said that she will get the paperwork going immediately, but we won’t have a date for a bit. She is guessing around the 1st full week of October, but that is not firm yet.
I started this post a couple days ago, and since then, he has a total of 4 days now without requiring nutrition by tube. He has been given permission by the Nutritionist to remove the tube, which he is planning to do this weekend. He just wants to make absolutely sure, because he does NOT want to have one of those done again!
As always, please keep us in your thoughts and prayers, and please support him in his decision. It was not an easy one.
Shari and Dennis
Dr. Sukamar informed us that the surgery would most likely be headed up by Dr. John G. Hunter, MD and his team at OHSU’s Digestive Health Center. We did a little research on him and his team and I felt pretty confident in his abilities. One thing about this type of surgery is that you want it done by a team that has done a lot of them. I’m not sure that the term “practice makes perfect” is appropriate in this situation, but it’s probably more that with each person and their illness some little thing is learned that is benefited by the next patient. This builds up a database of knowledge and experience that is passed on to subsequent patients. This was another concern we had about the Portland VA, that they only perform 2 of these type operations a week; on Fridays. OHSU does these 5 days a week, so the knowledge gained simply has to increase exponentially. That may or may not be a moot point since the 2 medical centers do share a lot between them.
I remember that walk with Dr. Sukamar. To be physically able to handle the rigors of such a surgery they want to see if you can handle walking up 8 flights of stairs. I recall thinking that there was no way I was going to fail this! After a couple of flights I started thinking this is getting tough. I just kept pushing. What made it even tougher was that the doc was carrying on a conversation with me where I would have to answer some questions. The stair climbing AND talking was really starting to get to me and I was trying to speak in a way that wouldn’t sound like I was winded or breathless. Even the walk back down those stairs was tiring, but I did get through it. Whew!
Quiet week, and eating like crazy!
By Shari Clevenger — Sep 19, 2015 7:40pm
The day after my last post, Dennis decided to remove the feeding tube. He pulled it out very slowly, and with no problems, and soon it was a thing of the past.
What a difference! The first thing he noticed was that he didn’t have to blow his nose every couple of minutes from the irritation of the bridle. The second thing he discovered was that it was much easier to eat without that tube moving back and forth in his throat. From then on, things started getting easier and easier. No problems eating anything, and he has eaten just about everything this week! Anything he wants, we make it or buy it and eat it. Things that he as missed since April, like Sushi, and a Cheeseburger, and breakfast foods, etc. He is finally beginning to gain back a little of the weight he has lost, which is really needed before the surgery.
Things are starting to pick up now for the surgery as well. The authorization has been approved for OHSU to do the surgery (YAY!!!) and we now have an appointment on Tuesday with the new main surgeon, Dr. Hunter. This time, we get to ride the shuttle to VA, cross the Skybridge to OHSU, and then take the tram down to the office down by the river. Hopefully, we’ll be put on the surgery schedule at this meeting or shortly thereafter.
I’ll try to update after that meeting if anything major happens, but I don’t expect it. I told Dennis to think of what he’s going to miss the most in the future weeks when he will be back on a feeding tube (thank God this one will not be down his nose and throat), and we’ll try to make it or get it.
Shari and Dennis
Oh glorious food! What a joy to eat some real food. I recall still having to be careful and not to eat too much too fast. One day we went into the sushi place in Vancouver Mall. After months with no sushi I wanted to go wild but exercised a little restraint. I knew I didn’t want to waste valuable stomach space on rice so I ordered a sashimi plate with tuna, salmon and saba. This is different from nigiri sushi which has the strip of protein over the top of a little shaped mound of rice, one of my favorites being unagi, barbequed eel on rice. It was absolutely heavenly! I think I did have one maki sushi roll (spicy tuna?) to get my little dose of rice. I did have to leave a little of the seaweed salad and some of the miso soup as I was getting full. A cheeseburger was another craving that would get filled. I found that about halfway through the burger I would remove the top remaining half of the bun and toss it as the bread was too filling. I think during this period there were a couple of visits to Taco bell for some favorites in the high-cal menu.
Feeding Frenzy and a Possible Surgery Date
By Shari Clevenger — Sep 26, 2015 11:45am
I’ll keep this one short and sweet. Dennis had a really good week. Eating with NO restrictions, gaining back some much needed lost weight, and getting physically stronger every day. Lastly, a short trip to Long Beach with sissy Janeen to soak in some sunshine and negative ions. Good for the soul. We ate every meal at our favorite 42nd Street Cafe and Bistro, and Dennis had seafood in every meal. Then met our wonderful friends, Jon and Charlotte in Astoria for lunch (more fish of course). We also got to see part of a whale (not the tail or the head, just the back) as he was swimming around by the Astoria bridge. All in all, it was a great 2 days.
We met with the new surgeon this week, Dr. Hunter, and we really liked him, and have the utmost confidence in his skills and experience. He explained a lot more about the actual surgery, complete with detailed sketches (I told him if he ever wants that done in animation form, Dennis is his man – he replied that he does want that, and told all in the room that he was going to have Dennis sign a Letter of Intent.) We are so very happy to be having the surgery at OHSU. We also met a guy (retired doctor) who had the same surgery over 5 years ago (he is 76 years old), and he had all kinds of advice for Dennis and they exchanged info so that Dennis can call or email him if he has any questions. It was fun to ride the tram down from the hospital to the waterfront to meet with the surgeon. Great views! The tentative date for surgery is October 8. That is less than two weeks!
We had a nice visit with daughter Kim last weekend, with another fun trip to the Farmer’s Market, and a LOT of laughing. Such a joy. Today we are meeting brother Glenn, Aunt Pat and Uncle Duane, nephew Levi, and dear friend Victoria, for dinner at one of our favorite places in Portland, Thien Hong. We have a followup with the Radiation Doctor on Tuesday, and a pre-op meeting on Friday the 2nd (get to ride the tram again). Sunday, our dear friends Judy and JR are hosting a get-together at their home, so that we can visit our RV friends that we have missed so much this year. This makes us very happy, and we can’t wait to see them. October 5, sister Joyce will arrive from New York, and plans to stay until the 19th, to assist her big brother and me in every way she can. What a Godsend to us. Oh, and one of my best buds from Woodbridge High School in Virginia, Linda Collins (& hubby George), is on her way via RV to see George’s sister in Portland, and we hope to meet up with her as well, before Dennis’ surgery. Haven’t seen her (except on Facebook) since 1968.
Ok, not as short as I thought, but you know I like to ramble. It’s just nice to have GOOD news for a change! Thank you for those of you still reading these posts and hanging in with us. We very much appreciate it.
Shari and Dennis
The dinner at Thien Hong was awesome as usual and I was able to pack away a good portion of Chinese food! With dinner I also had a bottle of TsingTao, which was the first beer I’ve had since April, 6 months ago. I didn’t have another beer until February, 5 months away. That bottle of beer was split between 2 evenings. Sad, I know!
The meeting with Dr. Hunter went quite well. As Shari said his office and the clinics for the Digestive Health Center are all located at the bottom of the aerial tram down by the Willamette river.
I am feeling better during this time of getting “real food” in me, even though my energy levels remain a bit taxed.
Another good week, and Surgery on Thursday!
By Shari Clevenger — Oct 6, 2015 11:12am
Sorry I’m a bit behind this week. We had a really busy week. On Tuesday, we had a followup with Dr. Holland, the Radiation doctor. He just wanted to check in with us, and make sure Dennis was moving forward to surgery. It was short and sweet. That evening, we took Janeen out for her official birthday dinner, at Outback Steakhouse. Lovely dinner. Tuesday, we met a dear friend from Woodbridge High School, Linda Collins (Smith), and her husband George, for lunch at Famous Dave’s Barbecue. Linda and I hadn’t seen each other in 47 years! We talked nonstop through lunch, after lunch, and out by our vehicles. It was a wonderful visit. On Friday, we had the Pre-Op visit with a Nurse Practitioner for the Anesthesiologist. He took many vials of blood, and did an EKG, and then we were free to go.
Dennis’ son Mike, wife Mika, and two of our grandsons, Mako and Akira, came down on Saturday afternoon, and stayed until around 1:00 the next day. We had a great time visiting and eating! Dinner at Buffalo Wild Wings, and breakfast at Fatty Patty’s.
Sunday at 3:00, we went to Judy and JR’s house to meet up with our camping group for a potluck. Much to our surprise, the Master Turkey Roaster, Doug, had suggested that since we are missing the last campout of the year (which actually starts Thursday this week) where they always put on a Harvest Dinner, which is basically an entire Turkey with all the trimmings, that they would have a “mini turkey dinner”. It was absolutely wonderful, and we were there until 9:00 p.m., just talking and laughing and having a wonderful time with our thoughtful friends.
Everyone has been so good to us through all of this, and it has truly lifted our spirits, and it keeps us going. Thank you all so much. Yesterday, we picked up Dennis’ sister Joyce at the airport. She will be here until the 19th, and will be an invaluable assist to both of us. Daughter Kim will get here Wednesday afternoon, and will drive us to the hospital around 4:30-ish a.m. (We don’t want to risk getting stuck in traffic, as they were pretty adamant about the 5:30 a.m. check-in).
The next time you hear from me will probably be on Thursday. If we get any updates during the surgery, I will post them — otherwise it will be after the surgery. I’m not promising how soon it will be, since I don’t plan to have my computer with me.
Please keep Dennis in your prayers on Thursday — for a flawless, complication-free surgery and recovery! We want to go CAMPING!
Shari and Dennis
JR and Judy Crosby as well as Doug and Bernie Batchelor were awesome to put on this little dinner for us and friends from our RV group. I was really touched!
By Shari Clevenger — Oct 8, 2015 11:09am
Thought I would start on the journal entry. It’s going to be a long day. None of us got much sleep – to bed around midnight and up at 3:45. On the road at 4:47 a.m. Got checked in at the main desk and then directly to pre-op. They said we’d be there til 7:30 and we thought we’d take turns as only one at a time allowed. I had first, then sister Joyce and daughter Kim. But when she came out, she told us they took him down for an epidural, so brother Glenn didn’t get to visit with him. We went to the cafe for breakfast and then came to the Surgery Waiting room and checked in with the Concierge. She will be patching any calls from the doctors to my cell phone. I’ll update when I get any info.
Around 9:00, we received the first call from surgery. Dennis is doing well, the first surgeon was just starting the first part after they gave him an epidural and a line in his neck and one in his arm. She said we could expect an update or doctor visit around 11:00, after he completed his portion of the surgery. I believe that was the Thorasic surgeon. Dr Hunter will be next.
1:51 p.m. – We have received two more updates and so far, he is doing wonderfully. That’s pretty much the extent of the updates.
Same update at 3:00 with a twist. The surgery may be done around 6-7:00 pm, which puts it pretty close to the VA’s estimate of 12 hours. The doctor (Hunter) will come in after the surgery and let us know if they are going to keep him sedated tonight or wake him up. That will determine if we will get to see him or not.
I’ve decided to go ahead and post this now, since there are some anxious people out there wanting to know what’s going on. I will pose one short update after we meet the surgeon and/or are allowed to visit Dennis. It’s been a very long and exhausting day.
Shari, Glenn, Joyce and Kim.
I don’t remember when the fast on the day before surgery started, but all I had the evening before was some tea or broth. One thing that was weird was that they wanted me to drink a 16 oz. glass of milk at midnight before the surgery. That was a new one on me! I have to down all that milk in a short period of time (because I wanted to go to bed) and still be up about 4:30 to head to the hospital. I was later told that the milk would cause something to “light-up” some parts of my innards to make it easier to avoid those parts during the surgery, or something like that.
We got checked in at the hospital on time and they immediately take me to a room where I undress and they want me wipe down head to toe with these pre-packaged wipes, sort of like large “Wet-Ones” antibacterial wipes. I guess this is a sanitary precaution they take even though I had just taken a shower an hour prior. They have me put on a gown and give me a few minutes so I can have visitors, one at a time, then lay down and wheel me down the hall to where they install the epidural. In there they had me sit on the edge of the bed leaning forward on something while they have me bend a certain way to open up the bones in my spine so they can shove the needle in.
That’s the last I remember until 24 hours later…
One more update
By Shari Clevenger — Oct 8, 2015 8:51pm
We met with Dr Hunter. He said that the surgery went as well as could possibly be expected and he feels very confident Dennis will have a complete recovery! No complications so far and everything working as it should. We are outside the ICU waiting to go see him. He will be heavily medicated (morphine) and may not know we are there, but after 10 hours of waiting, we aren’t leaving here until we see him with our own eyes!
Thank you all for your love and support and prayers. Keep them coming as we start this new phase.
Morning Report –
By Shari Clevenger — Oct 9, 2015 10:39am
I just talked to Dennis’ ICU nurse, Sharon. ? He is awake and alert this morning and they just removed his breathing tube, and he is very happy about that and now able to talk – and told them he was thirsty. (Can’t have anything by mouth yet) His surgery team had just been in to see him, and are very happy with his progress. The nurse told him they would let him rest a bit, and at 10:00 they are going to help him get out of bed. All in all, a very good report!
Boy do I remember this part! I’m sort of semi-conscious and I’m hearing a couple of guys talking med-speak and going over some of the reading of machines located around the head of the bed. I can hear all this but have a very uncomfortable feeling in my throat. I slowly realize there is something in my mouth and down my throat. I sort of started to panic as it was making breathing very difficult. This was to become one of low points in all this. I felt like I was drowning and could not catch any breath. I don’t recall now why I could not breath through my nose. I could not say anything with this thing down my throat and I could not make any motions with my hands since they were restrained to the side of the bed. I don’t remember if my feet were restrained. Probably not since it would hard to start pulling at all the wires and hoses going in and out of me with the feet. I think I heard one of the guys say something about the breathing tube and then it dawned on me what it was. I told myself to lose the panic and just try to relax and go along with how the tube “wanted me to breathe”. I finally got control and was slowly feeling a bit more lucid with each passing minute.
Someone finally pulls that tube out after they determine my vitals or good enough to go on my own. I’m handed my glasses and the first thing I see is my ICU nurse named Sharon or Karen. She looks like Olivia Newton John, not the disco era version, but rather the beautiful current day version. Ahhh…, I can relax now, I’m in good hands! The waiting family members are now allowed in for a short visit. I can’t believe I’ve been “out of it” for a little over 24 hours.
By Shari Clevenger — Oct 10, 2015 3:00pm
Sorry all, I took a day off from CB page. We continue to be amazed at Dennis’ progress. Yesterday they removed the breathing tube, for which he was extremely grateful. He described that it felt like he was drowning with that in. We (Kim, Joyce & I) were in his ICU room for 8 hours, and Glenn was there for the afternoon. Nurse Sharon now calls us “the party family” because of all the laughing going on in here (which she approved of).
This morning, we arrived around 10:30. He already had the catheter removed, as well as the left chest tube (drainage). Then as we all watched, Sharon removed the neck IV (& inserted the tube into the access port on his hand). He is currently sitting up in a chair helping Joyce play Word Warp on his iPad. We met Dr. Dolan, who just returned from vacation. Had he not been, he would have been on the surgical team, as he has a lot of experience in this surgery, along with Dr. Hunter. He stated more than once that in his experience, Dennis is WAY ahead of the curve in his recovery. The plan is to move him to a regular room today, but they are very full, so it may not happen.
He is still at the “nothing by mouth” stage for most likely 4 more days. Dr Dolan said that one of the biggest risks right now is leaks in the sutures where they attached the esophagus to the stomach after removing all of the damaged tissue. The physical therapy team will be in today – possibly to get him up from the chair.
That’s it so far! Have a wonderful day!
Shari & Dennis
One of the last parts of the surgery is the anastomosis. This is where they sew together the remaining piece of stomach to the remaining stub of esophagus. It is VERY critical that this be done in such a way that it heals smoothly and evenly so that nothing you swallow will leak out and into other parts of your insides. The other element is to connect the tissue so that any scarring doesn’t occur in a way that gets in the way of swallowing. While you can read all sorts of horror stories on the internet where patients have had a problem with this, I can say that Dr. Hunter has this procedure down pat because I’ve not had a single problem with my throat or swallowing since the surgery.
When all this started, nobody exactly said it was going to be a slam dunk, but if I followed the program the best I could I would have a good outcome. Well, now post-surgery, I’m really encouraged by every doctor, nurse or resident that sees me and tells me I’m doing great and even better than expected after a MIE (Minimally Invasive Esophagectomy).
Still progressing, doing GREAT!
By Shari Clevenger — Oct 12, 2015 10:13am
Every day, Dennis continues to impress us all. He was moved out of the ICU to the 13th floor, to a unit that regularly deals with patients that have had the kind of surgery Dennis had, which is very reassuring. He has a lovely large room with a beautiful view toward Portland, Mt. Hood, and the “garage” of the Tram. After he was moved to his new room, they removed a drain tube from the other side of his neck (from the neck IV removed the day before). He still has one drain in the right side of the chest, the stomach drainage tube in his nose (which he HATES – much like the feeding tube he suffered with for over a month), and the Epidural line that keeps his pain level under control.
He is now able to walk with the aid of a walker, and has taken several walks around the floor. The nurse is always right there, guiding the pole that carries a multitude of drips (nutrition, fluids, meds, etc.). Those walks tend to kick his butt, and he usually naps when he gets back. His “entertainment center” Kim left for home yesterday. She has helped to keep us all laughing throughout, and I couldn’t have gotten through it without her, and Dennis’ brother Glenn and sister Joyce. What an amazing family!
Next challenge will be when they get him off of the epidural, and keeping his pain under control.
Shari and Dennis
I look forward to each day when they remove another tube out of me. I’m trying to be the model patient and not be a burden to anyone, not be grumpy, not complain too much, etc. The staff on every shift at OSHU was very nice and accommodating to whatever I needed. I had one nurse on night shift that was sort of annoying in that she had to verbalize every single step she was taking with every procedure every time she came in my room. She would go on word for word about refilling my nutrition bag that fed my feeding tube, or giving me a shot, or hanging a new saline drip or whatever, describing each step like from a text book. When you’re being woke up almost every hour in the middle of the night the last thing I want to hear is that sort of chatter. Another week and that would have drove me nuts! I know, short drive…
I’m thankful that my daughter Kim was able to get the better part of a week off to come down from Seattle, stay at our house and come to visit me every day in the hospital. My sweet sister Joyce flew out from New York to be with me through this too. She was a huge help in my recovery as well as helping Shari around the house and as emotional support.
Yet more progress!
By Shari Clevenger — Oct 13, 2015 4:08pm
Yesterday was the day the nasal tube (stomach drain) finally came out!! Joyce and I were having lunch and didn’t notice it was gone until after Glenn asked if we noticed any difference. Dennis was extremely happy to have that gone! He is gaining more strength every day.
Today they will soon be removing the chest tube and they have shut off the epidural but have not yet removed it from his back. That was a couple hours ago and so far he has had no pain. One of the multitude of doctors brought in a cup of water with a straw and instructed him to take a sip, hold it in his mouth, lower his chin to his chest and swallow. The first one went awry (the doc said his face turned red and he coughed) and probably went into his lungs. The second and third sips were perfect. He told Dennis to do it that same way when they give him the barium tomorrow for the leak test.
Once he gets the chest tube out, he’ll be allowed to take a shower! Funny how the little things seem like such victories.
Have a wonderful day!
Shari & Dennis
Funny thing about the epidural. I had my own button to dispense medication to my system if I felt pain. Maybe they already had it set to a minimal drip and the administration by the patient was only if the pain went above what that covered. I don’t know. I recall just using it a very few times for pain, but was using it more in the middle of the night when I found it hard to sleep. It would knock me out only to be woke up soon after to take meds or have something else done. It’s true what they say, if you want a good nights sleep you won’t find it in a hospital. Another unpleasant annoyance in the middle of the night was getting a finger pricked to get blood or having blood drawn from the arm. Oh, and then there was the guy that came in every morning, it seemed like I would be just dozing off, and he’s wheeling in the portable xray machine for the chest xray between 6 and 7am.
Bustin’ outta dis joint!
By Shari Clevenger — Oct 15, 2015 8:31pm
Typing this on my iPhone so will be brief. All the tubes are out except the feeding tube & IV for meds. This morning, Dennis had the “leak test”, drinking barium and watching the progress of the barium as it traveled to see if there were any leaks. There were none. The progress was a little slower than they hoped, but that just means they will slow the progress of transitioning from liquids to soft food, etc.
Dr Young came in to deliver the news above and while he was here, I asked if they had any results from Pathology. He didn’t think so, but checked on the computer. They were in! He read them all and told us that all of the esophagus and stomach tissue removed was NEGATIVE for cancer cells!! The 36 Lymph Nodes they removed were NEGATIVE for cancer cells! Woooohooo!! Shortly after he left, Laura, Dr. Hunter’s Fellow, came in and when she saw the results she told Dennis to start planning some FUN for the next 20 years. She said this was the best possible news he could have gotten. Not to be left out, Dr. Hunter himself came in to see Dennis. Just as the others, he didn’t know about the results either, so we told him too. He was extremely pleased.
As Dennis and Dr. Hunter talked, at one point Dennis mentioned how what Dr Hunter was describing would make a good video. Dr. Hunter asked if he could see some of Dennis’ work. He pulled up his website on his iPad and started showing Dr. Hunter some examples of his animations. Would be great if Dennis could actually get some work from OHSU out of this!
So, as of now, the plan is for Dennis to go home tomorrow! Keep your fingers crossed!!
Shari and Dennis
It was sort of cool to see the xray when they were doing that leak-test. I was surprised to see just how little the pouch that used to be my stomach was. To me this was another milestone in my recovery! This means I’m on the road to food and drink, even though it’s a ways yet.
Back in September when we first met Dr. Hunter we were handed a stack of 8.5×11″ sheets of paper with step by step text and pen and ink drawings of the surgery. Most of it won’t make any sense to the layman, but the hardest part to describe in a non gory way was the “pull-up” procedure. The purpose of this animation was to provide a sanitary way of describing this procedure to the patient. When he found out I create graphics and animation for a living, he wanted me to make this to be used by OHSU and the Digestive Health Center.
This sure made it clear to me and other people I’ve met that have seen it agree that it makes it much easier to understand this portion of my 10 hour surgery. I started work on this animation about 3 months after the surgery and it provided a certain level of occupational therapy for me since I’ve been away from my computers for about 8 months without any commercial work going on. My 2 main clients were quite understanding of my situation and would only ask for something if absolutely necessary, which was only a couple of times last year.
Home again and new challenges!
By Shari Clevenger — Oct 17, 2015 3:55pm
Sorry this took me so long, but spare time is a tough commodity to come by these days. Ok, Friday morning, Dennis was told he was going home. We started getting a lot of visits from doctors and nurses and therapists, giving us our instructions. There would be a bunch of prescriptions to pick up, and we also needed to get to the VA Hospital to pick up an electronic pump and some bags for it. The Nutritionist, Malissa, offered to give me some instruction on how to set up the pump and program it. Everyone who came by had more information for us, and it picked up steam — then all of a sudden at noon, we were told he could get dressed and go! No wheelchair anymore — you’re on your own. We had several bags of clothing and stuff to haul down to the car. I left Joyce and Dennis in the car and hiked over to the Physician’s Pavilion to the Pharmacy to pick up Dennis’ medications, and we were on our way.
It was pretty upbeat when we got home. Just so happy to have his own couch and bed to be on, instead of the hospital bed and the continuous interruptions and intrusions all night long. Little did we know, our first night at home would not be without it’s challenges. First thing was hooking up the new feeding tube (this one in his abdomen, not in his nose) to the pump. No problem there (thank you, Malissa). What we didn’t think about though, was that it needs to be plugged in most of the time. With the small table by his side of the bed, and the hospital tray, it left little room for the food bag stand. Dennis went back to the bedroom around 8 or 9:00 p.m. and got a nice hour and a half nap. When he woke up, he was extremely hot. His tee shirt was soaked and the polar fleece sheets had to go. I gave him a clean tee shirt, changed the bedding, and moved the polar fleece blanket aside and gave him his cotton blanket for coverage. After all this, he felt much better.
After watching a couple shows on TV, and a visit with sister Joyce, after she had dinner with her son, Levi, and friends in Portland, we decided to try to get some much needed sleep around 11:00 p.m. We both slept until around 1:00 a.m., despite the whirring and clickity-clack noise every 15 seconds or so, and the big glowing screen that lights up the room (and despite the fact that I had a sleep mask and ear plugs). Dennis turned on the TV, and shortly thereafter, he got up to use the bathroom, and then decided he needed to unplug the pump and drag it with him to get some fresh toilet paper for the bathroom (instead of asking me). So he got down on his hands and knees (a BIG no-no) to unplug the pump, then again in the hallway, bent over to get the TP, then again to plug in the pump. This started a bad coughing fit and ended in some vomiting (quite boisterous – so much it brought sister Joyce running). The force of the vomiting pushed clear fluid out of the two drainage areas on his right side, even though they are healing and have stitches. This time it was sufficient moisture that we had to change the dressings and get another fresh tee shirt. At that point, we also added a hand towel as extra coverage on top of the tee shirt. The next 3-4 hours was spent with much tossing and turning, but no sleep. Now adding to the noise of the pump and the TV, was thunder. I think both of us got somewhere between 1-2 hours more of fitful sleep and we gave up at 7:00. This was certainly NOT what we expected for his first night home after his week of semi-sleepless nights in the hospital.
Today, we are taking it easy, mostly because we are too tired to do much else. Joyce cooked up some wonderful Butternut Squash soup, which Dennis cannot have right now (clear fluids only until at least Tuesday, when we return to OHSU for a second Esophagram). We froze some, so that he can enjoy it when he moves to “Full Fluids” which will allow creamy soups and pudding. He gets one ounce of water or apple juice, etc., once an hour.
That’s it so far.
Shari and Dennis
More coming soon…
New Esophagram and small food changes
By Shari Clevenger — Oct 21, 2015 11:18pm
We spent from 9:30 to 4:15 at OHSU today. Took the 8:50 shuttle to VA, then put Dennis in a wheelchair and shoved him over to OHSU, to the entrance to the Tram. Took the tram down the hill to the OHSU satellite building, to the Center of Digestive Health. First we went to the Radiation department for the Esophagram and I got to sit in the room (behind a protective wall) and watch the x-ray as Dennis was drinking the contrast. I could see it go down his throat, and down to the new esophagus/stomach, which we call the “Stomaphagus”. It tended to pool down at the bottom of that stomaphagus and then spill over to the next area and down into the intestines. We left there and went to the Digestive Health area to wait to see Dr. Hunter. We sat there for an hour and a half, before getting called in. His Resident, Dr. Young (he has been involved from the very beginning of the OHSU part of this) came in to talk to us, and then we would see Dr. Hunter. However, when we started talking to him about Dennis’ chest tube site still leaking every time he coughs, he was more interested in that. After checking it out for himself, he sent us back to Radiation to get a Chest X-ray. Again, we waited, as there was now a room full of people in that area and we had to wait our turn. Finally, Dr. Hunter, Dr. Young, and another doctor from the team, all came in to talk to us. They addressed the chest tube site issue, and they think it will resolve itself. Then they pulled up the Esophagram results on the computer, and Dr. Hunter said the newly refashioned stomach is working a lot better as the healing has taken place, but still needs a little improvement. He decided to move Dennis up to “full liquids”, which includes creamy soup, yogurt (no fruit chunks), and pudding, among others. Also, the volume every hour is 3 ounces instead of 1 ounce.
We will revisit this at our next appointment in two weeks. We left the office and headed for the tram and back to OHSU. We decided to go to the Marquam Cafe and see if they had any creamy soup. As luck would have it, they had some cauliflower soup, so we both got some. He loved it — may have had a little over his 3 ounces, but hey, it was a celebration. Then he walked all the way back to the VA and we waited for the shuttle. He is definitely getting his strength back a little more each day. This was a LOT of walking for someone just out of the hospital a few days.
We are hoping for some uneventful days to keep up the strength building and get lots of rest too. I think the worst thing for him is the cough, which sometimes gets out of control, and the lack of sleep. It’ll get better. Every day, a little bit better.
Shari and Dennis
Relative calm, with a couple small burps.
By Shari Clevenger — Oct 28, 2015 7:24pm
Well, I asked for some relatively boring days and we got a few. The biggest problem that was causing him problems was the extreme lack of sleep. He was spending a lot of nights just laying in bed, wide awake. He would play Word Warp on his phone and then try to go back to sleep. He was VERY tired and exhausted after 3 or 4 days in a row of this. We tried giving him Melatonin at night, or an Ambien. Either of these would get him 2 to 3 hours, and then he’d be awake again, with only catnaps the rest of the night. It was wearing on both of us. Then I started noticing that his was withdrawing from daily walks, and was short of breath trying to put on his socks! Between that and the chest tube site leak, he was going downhill. I called the Digestive Health Center on Saturday and on Sunday, to get some help. The on-call doc recommended something similar to Melatonin, but a pharmaceutical, and called in an order. It never got to Walgreens, (where I asked her to call it in for convenience), I called the next day and she gave them a call and ok’d the medication. I went to Walgreens, only to find the Pharmacy closed at 6:00 on Sunday. Dennis and I went the next day to pick it up, but we were in for a rude shock. Since he has no insurance except the VA and Medicare, the 30 day supply of the sleep-aid would cost $482.00. We did not fill our prescription, needless to say.
Monday morning I called the RN Lisa, who is Dr. Hunter’s contact, and after telling her about all of the issues, she asked us to come in for a quick check. LOL. I fell for it — no such thing as a quick check.
We caught the 11:30 shuttle, grabbed a wheelchair and began the ride/trek to OHSU tram, and back down the hill to the medical building. First stop was for a Chest X-ray, and then to Dr. Hunters office. We talked to one of the “Red Team” of Dr. Hunter’s, (who happened to be the on-call doc I had talked to on the weekend) about the sleep issues, fatigue and shortness of breath. I had mentioned to Dennis that picking up his iPhone when he would wake in the middle of the night, was not a great idea, and the doctor confirmed that. She also suggested we try to cover the food pump screen which totally lights up the bedroom with it’s bright green light (not to mention the very weird sounds it makes all night). She also suggested a meditation tape or something (which I have on my phone) to listen to that might help drown out the food pump sounds. She suggested that he take a dose of Melatonin before bed, then when he wakes up in the middle of the night, give him an Ambien or some Oxycodone. So that was kind of a combo of what we had been doing, the idea being to get him several “chunks” of sleep. It seems to have made a difference, because the last couple days have been much better. He is trying to stay awake as much as he can during the day, because the long make-up naps were also impeding his sleep at night.
So that’s where we are as of today. Next Tuesday we will return to OHSU, and keep your fingers crossed, he could get moved to soft foods!!! And hopefully a little more than 3 ounces of it.
Shari and Dennis
On an upswing!
By Shari Clevenger — Nov 5, 2015 8:50am
Dennis had a pretty good week since my last entry. He continues to gain more strength every day. The biggest issue we have right now, is the lack of sleep. We just can’t seem to get a handle on that, but are hopeful for the near future. We met with the surgeon and some of the team on Tuesday, and were delighted to hear that Dennis has now graduated to “soft foods”. He can eat up to 6 “meals” a day and right now the focus is on calories. They want him to eat (including his tube feeds) 2000-2400 calories a day, to maintain his weight. It’s pretty much up to him how he does it, but he has to go slowly. Time will tell how much he is able to eat at one sitting, because according to the surgeon, it will make itself known immediately — if he eats too much, it will simply come back up. With the “Stomaphagus”, there is no valve to control. They say over time, that will change somewhat, as the newly resized stomach learns how to be an esophagus. He must be very careful not to lay flat (ever) and not to bend over too soon after eating. I believe this will all become his new normal in time. So as we move forward on the soft foods, the more calories he can get in for his meals, the less of the nutritional drinks he will need in the tube feedings at night. The less he needs of the tube feeding means more SLEEP. Not going to be solved immediately, but there is hope for the future. We are adding high calorie drinks (Apricot Nectar, Keifer (probiotics), and GoodBelly) as part of this calorie goal. Oh, and he can now take his liquid meds by mouth, as well as small pills, which is a relief for me, not having to do so many tube meds.
Dennis’ first soft food meal that evening was some Turkey dinner from Chuck’s Produce deli (they have an amazing turkey dinner with all the trimmings every Tuesday in their “Hot Rocks Deli” area). He ate somewhere between 1/2 to 1 cup of food, consisting of turkey (dark meat), mashed potatoes & gravy, yams, and green beans. He enjoyed every bite immensely. The docs told him to start with the 1/2 to 1 cup of food, and gradually increase — his goal being about half of what he would have eaten before surgery. We asked how he will know how much is too much — they responded that “it will just come up”. I’m thinking that dinners out are going to be rare for quite a while.
Last night was some of the best (and most) sleep I’ve gotten in weeks. We set up the tube feeding for 4 cans (down from 6), and I had set up some Oxycodone for him on his bedside table that he could take by mouth if needed for sleep and pain. For the first time since he came home after surgery, I didn’t have to get up in the middle of the night and try to get syringes of meds and water flushes set up and delivered. Around 5:30 this morning, I heard an expletive followed by “my tube broke!”. I launched out of bed, fumbled around for my glasses, and had visions of the tubing broken or having come out — neither option good. I quickly turned off the pump, as he was getting wet — neither of us knowing where it was coming from. Finally figured out that it was the end fitting of the tube that fits into the end of the tube connected to Dennis — it had simply unscrewed and fell off. These were new bags, and neither of us had any idea it could do that. Crisis averted, and now we know. On a sad note, he said the Oxy by mouth didn’t work, so that may have been my one and only good night’s sleep for a while. At least I can see the light at the end of the tunnel, and in a matter of weeks, the tube feedings can stop, and the tube will be removed. Yeeeeehaaaaa!
Shari and Dennis
By Shari Clevenger — Nov 14, 2015 1:28pm
I guess I shouldn’t wait so long to update, because it’s all becoming a blur now. I am still having some issues with figuring out what to make for meals that have enough calories that we can have less of the nutritional drinks. We did have a couple days where he only needed 2 cans worth of calories (instead of 6), so we would just hook him up at around 6 or 7:00 p.m., and he would be done by bedtime! Makes it much easier on both of us. Firstly, because he is not getting liquids pumped in him all night long, he gets up less times during the night. And when he does get up at night, he doesn’t have to try to untangle the tubes and stuff to drag his stand with the feed bag to the bathroom with him. In time, this will help even more, because he doesn’t wake up so much that he can’t get back to sleep. Then, of course, when I am doing the happy dance because he’s doing so well, then something always happens to knock us back down.
One of those incidents was after he’d had some (Chuck’s Produce) Chili. Right after dinner, he said he had a pain in his neck and a short time later, it moved to his ear. After about an hour of holding a warm compress to it, he was still in pain. He also started coughing pretty hard, and as has happened in the past, he ended up losing his entire dinner. Of course, my first thought was that he’d just lost all those precious calories! So then we had to give him extra Jevity (nutrition drink) that night. We had a couple more nights of not getting enough calories in him, but the last few nights, we’ve been able to get back to 2 cans. By Tuesday, we are hoping to get to NO cans. That is the Surgeon’s hope (and ours too). Our next appointment with him is in 2 weeks, and that’s when they will take the feeding tube out, if he is progressing. I can hardly wait!
We had a few other highlights to our week. We had another plugged valve in the feeding tube — of course it was in the middle of the night while trying to administer medications. We decided to change the Lopez valve, but I couldn’t find our “spare”, and we ended up having to completely remove the existing valve and cleaned it out, and all was well. We’re getting better at this — neither of us panicked. The other issue was when we went to change the “holster” that they put on him (a big round disc that holds on with adhesive) to hold the tube in place, where it comes out of his abdomen. He decided he should shave that area of his belly, so that when he took the replacement holster off, he wouldn’t have to pull out all that hair when we had to change it in another week. He temporarily taped the tube to another spot on his belly to get it out of the way, but didn’t realize it was slowly working its way out. ARGH!! Fortunately they had told us what to do if that happened, so he was able to slowly push it back in.
Thursday, we met with the Oncologist at the VA, and she was very pleased with his progress. She hadn’t seen him since before the surgery. The next appointment will be on December 8 with the Surgeon. Hopefully, he’ll give us the green light to add more variety of foods to his diet, and remove the tube! He needs to be able to maintain a healthy weight. We may have to have a celebratory mini camping trip to celebrate that event.
Thanks to those of you that have stuck with us through this.
Shari and Dennis
Healing and Merry Christmas!
By Shari Clevenger — Dec 24, 2015 1:00pm
I know it’s been a month and a half since my last post, and I apologize. Truthfully, it’s been mostly because there wasn’t much to report, and partly just exhaustion.
On December 8, we met with the Surgeon and his team at OHSU, and finally had the feeding tube removed. Dennis is now totally tubeless! He is sleeping much better now, everything is going well. The biggest problem we have is getting the calories in him within the 1-cup at a time restriction. Admittedly, he does push that now and then, but has been cautioned by the surgeon about not doing that. There are only so many hours in the day to get in those calories. He varies a little in his weight, but seems to be staying within a 5 pound range pretty well, so it’s good. The next appointment we have is for this Monday with the Radiation Doctor, but it’s just a check-in type thing, so nothing to worry about.
So that’s it for us right now. Dennis continues to heal a little more every day. Looking at him, you would never know he had such major surgery just a few short months ago. His strength and stamina improve a little more every day, and the only real issue is still the cough, but that too, is starting to wind down. We aren’t concerned about the cough, because they told him it would keep him from getting Pneumonia, so that’s good. We have to be very careful about coming in contact with anyone with a cold or flu, as his resistance is not totally back yet. We will have a very quiet Christmas this year.
Thank you all that are still reading these posts, and Dennis and I wish you all a very wonderful Christmas and a Happy New Year. We are very happy to get this year behind us and look forward to some camping and fun in 2016.
Shari and Dennis
First Post-Surgery CT Scan Done and Progress
By Shari Clevenger — Feb 2, 2016 9:45am
Dennis had an appointment with his new VA Oncologist on January 21st (the previous one jumped ship to OHSU). We really liked the new doctor. He sprung a “surprise” CT scan on us, but that really worked out ok, because we didn’t have all that time to worry. And he called us on Friday with the “all clear” results, so I thank him for not making us wait it out over the weekend. Yay! One down, hundreds to go. This will be every 3 months for the first year, and over time, less, as long as results are good. We have one more appointment with Dr. Hunter (Surgeon) at the end of February, and he will officially release Dennis back to the VA Hospital.
His weight is holding pretty steady, and his cough is almost gone now. He is gaining more stamina every day, and this week he is going on his annual guy’s campout with his good friends. He looks forward to this every year, and it was his goal that he would not miss this.
So barring any complications, I’ll probably just check in after any significant appointments. This remains the easiest way to let a lot of people know what is going on. I did send out a bunch of texts after the CT scan results, but am always concerned that I missed some.
We are looking forward to a special dinner hosted by Dennis’ surgeon, Dr. John Hunter, at a Portland restaurant on March 4. It will be Esophageal Cancer surgeons from OHSU and the VA, and other EC patients of Dr. Hunter’s. It will be interesting to meet other people who are in different stages of recovery from this surgery. To meet SURVIVORS!
Take care, friends, and go out there and enjoy your life to the fullest!
Shari and Dennis
Update March 2018
Last month (February 2018) I had another scheduled CT scan. This one was 28 months since my MIE surgery. All came back clean! Woo-hoo! It could have gone smoother, though. As the time for that appointment with the oncologist drew near, I sensed that there was an error in my scheduling. There is no point in seeing the oncologist unless you have something to talk about. So I called the VA to as when my scan is which has always been about 1 hour prior to the visit with the oncologist. Also prior to the CT scan I always have to get a blood draw, but they always allow walk-ins to take care of that. So when I call to find out about getting the scan prior to the meeting with the doctor, they have to schedule the two appointments 3 days apart. This is not a nice thing to do to a cancer patient. No matter how positive and confident you are that you’ve beat this disease, there is always that little bit of doubt that creates some anxiety. Just the visit to the imaging department for the scan can create what’s called “scanxiety” and then when you pile that on top of several days of waiting to get the result, it just seems an unnecessary sequence to put a patient through.
My health care through this cancer has been through the VA Medical Center in Portland, Oregon. It’s a constant learning process to learn the way they do things and how to stay on top of things like scheduling snafu’s. This is why it’s so important to have a dedicated caretaker, so that between the two of you, you can stay on top of things. For the most part I’ve receive good treatment from this VA facility.
Last year in May I had my annual check-up with my PCP. Going in I had a list of things I wanted to talk about. I wanted some info regarding arthritis, bursitis, check a mole, etc. I also had some questions regarding digestive issues and dumping syndrome. When I brought up the gastro-intestinal stuff, she said she knows nothing about esophageal cancer or esophajectomies. So we spent this meeting dealing with my shoulder arthritis and setting up an x-ray and MRI. She said she would set me up with someone in the Gastro area for a consult. About a week later and I get a call from the VA saying they refused to see me.
So they scheduled another visit to my PCP a few months later so I could finish my list of concerns. At that appointment she said she would submit another request to see a GI doctor within the VA system. About a week later I get a call from the VA saying they can’t see me, but since I’m in the “Veterans Choice” program, I can go find my own local GI doc and get taken care of if they are approved by the VA for handling the financial part. So I went to a local specialist and got lots of answers to my concerns.
Does anyone else find it strange that the VA isn’t interested in the inner workings of a patient after they removed his esophagus and 2/3’s of his stomach? Why wouldn’t they follow up? It seems there should be some sort of record keeping following up on surgeries to benefit both the patient and any future patients where the medical team could pull from a database of cases to smooth out the “after-care”. The ONLY thing that the VA has done since the MIE surgery is to get scans a couple of times a year and then see the oncologist for 15 minutes each time.
Now in all fairness I should mention that I was the first one at the Portland VA to be eligible for my surgery to be performed at OHSU, where they were outsourcing this procedure. We jumped on this offer since the VA only does a couple of these operations a week. OHSU has a surgical team that has done hundreds of these and that’s exactly what you want for this type of cancer surgery. Actually that should be a pre-requisite for any type of surgery! So after the surgery I would be under the care of the team at OHSU for 60 days before they would turn me back over to the VA. That 60 days of care was welcomed taking care of some post-surgery concerns and how to deal with my “new-normal”. I highly recommend Dr. John Hunter at OHSU for this surgery. Compared to most who have gone through this, I’m left with very few complaints and complications. My main issue has been some mild “late dumping” syndrome. After 28 months I’m barely able to discern what causes it, but am working on it to find any consistency to the occurrences. In the past couple of years I’ve had 6-8 episodes where I’ll start to feel light headed, jittery feeling, hot/cold flashes and vision is weird. If sitting at the computer I have to get away as the light from the screen is almost blinding! I’m told this is similar to what a diabetic experiences, so the solution is usually to get some juice or a piece of candy. Multiple things in your gut depend on how the GI system absorbs and processes sugar. If I go sit down for about 20-30 minutes I’ll be fine. I can still eat most anything, just in smaller quantities. I’ve never had a real super-sweet-tooth so there is no problem there, but do have to watch carbohydrates that convert to sugar. I have also had about 3 instances of bile reaching my throat. This has happened in bed when I think I may have slid down too much from my elevated sleeping position. With no valve at the bottom of the esophagus, any contents of the “stomaphagus” can come up with the risk of getting some of that into your lungs. Not good! When that bile comes up and hits the back of the throat, it feels like you’ve just gargled with some gravel and razor blades. It’s horrible! A few sips of dill pickle juice will neutralize the alkalinity of the gut juice and pain is gone in about 10 minutes. Just some of the little things you learn to live with. Dr Hunter did an excellent with the anastomosis, where the stub of esophagus below the throat is sewn to the fabricated stomach tube that is pulled up in your chest. It is here that many patients have a problem with swallowing because of inflammation or excess scar tissue or whatever at that joint. They usually have a stent or something put in to keep the passage open. I have had zero problems with swallowing. Where I do have an issue occasionally is over-eating (maybe 6 times in the past couple of years). By now I have a pretty good handle on this, but every now and then I’ll eat just a tad too much and then feel like crap for about 30 minutes afterward.
One side effect after surgery was some numbness in a couple of areas for about 6-8 months. One was the area above the incision they made near my collarbone to pull out the stomach and esophagus. I had a numb area just above that incision and below the jawline on that side. That one I would attribute to maybe some nerves damaged around that neck incision. The other areas were on both legs, top of the thigh, a few inches above the knee. There was a playing card sized area that you could have jammed a pin into and I wouldn’t have felt it. Left leg more so that the right. Weird that no medical people I mentioned this to had any answers or solutions. Some internet searches tell me that it may be the after effects of the anesthesia used during surgery or even possibly residual effect of chemo or radiation. I don’t know but all the numbness is gone now, +2 years later.
For anyone starting the unwelcomed journey through esophageal cancer, we highly recommend the website Smart Patients at https://www.smartpatients.com/conversations . The EC community here has been quite helpful with finding solutions you may not find from your doctor. I still feel really blessed that I’m surviving with my “new-normal” with very few side effects or inconveniences. Next CT scan will be coming up in August and they DID schedule the oncologist appointment within 2 hours of the scan.
Update May 2020
My last meeting with my oncologist at the Portland VA Medical Center was back in February. Over the past couple of 6 month visits I haven’t needed to be subjected to the CT scans. Prior to my appointment he just want me to get a blood draw. With the results of that and some consultation he sees nothing to think that there is any danger of the cancer returning. I have another visit with him later this year. This coming October 8, 2020 will be my 5 year mark since the surgery. I’ve recovered most of my energy and still learning to live with my new normal. Getting nutrition in is a constant battle with both early and late dumping syndrome. Occasionally after a meal or a snack I’ll get sort of light headed, tunnel vision, spotty vision, weakness and light nausea. It’s because of the way sugars from carbs are absorbed in the gut, since there is no real stomach for the pre-digestion to take place. This creates an insulin spike that is usually resolved by eating some candied ginger and drinking a Gatorade or orange juice. It’s still hard to take care of any household chores that involve some heavy activity, since I cannot do much after eating a meal. I have to wait a bit (30 mins or so) after a meal to drink anything. Getting full is just so uncomfortable. My sleeping comfort has improved in that I am laying flatter that the past 3 years, so I’m able to resume sleeping on my side whereas before the head of the bed was at about 40 degrees to prevent any aspiration of contents coming up and possibly getting into my lungs. This is common for post EC patients because you no longer have that valve at the top of the stomach to prevent back-flow. What happened was last year I had cataract surgery in February. Then near the end of March I had a torn retina in the left eye and had that repaired surgically with a laser treatment. Then near the end of June I discovered I had a detached retina in that same eye. That resulted in a 1 hour surgery over at Casey Eye Institute in Portland. As part of that procedure they had to inject a gas bubble into that eyeball to keep pressure against the healing tissue. They said I would have to lay on my right side as much as possible over the next couple of weeks. Well, it’s really hard to lay on your side with the head of the bed elevated that much so I had to start fudging that bed angle downward to the point where I’m just above the feeling of any acid reaching my throat. I can tell the “conduit” created in surgery is not exactly straight up and down because with that now lower angle I can easily lay on my right side but if I turn over and lay on the left, it’s a matter of time before I’ll get the sensation of burning in my throat from acid working with gravity. I’m now a gravity-fed system but I only want the contents flowing down and not upward. So, overall, still doing pretty good, all things considered!