Thursday, December 5, 2019

How I am really doing

Over the last week or so, many of my friends at FHV have asked the ubiquitous question, "How are you.". Well, the answer is complicated. But rather than going into details, I respond that I am fine or great or whatever comes to mind. I then add that they can read the blog if they want the details.

Fact is that last week was a bit rough - primarily because of pretty severe leg cramps as night. In the past this might have occurred 2 - 4 times in a night and I could usually get them to go away by walking around for 2 ro 3 minutes then falling right back asleep. But last week there were several nights where I would sleep for 30 or 40 minutes and then the cramps would lessen but not disappear completely after 10 minutes of walking. This would continue for most of the night meaning that I would be sleep deprived.

I went to the drug store and "invested" in a broad range of leg cramp cures - which may or may not have helped. Tonic water (with or without gin) seems to have no effect. Drinking lots of water does seem to correlate with fewer cramps, but is by no means fool-proof.

I have tried sleeping during the day, but this is sometimes difficult and usually results in more leg cramps. Yesterday, the leg cramps happened in the car on the way back from Dana-Farber. I can still drive safely, but it is most unpleasant.

Last night I tried a magnesium pill. I had previously decided to avoid magnesium as preferring the cramps to diarrhea. Last night was not too bad cramp-wise. Was it the magnesium, drinking lots of water. talking my weekly 40 mg of "Dex" or the phase of the moon? Who knows? Anyway, I am not complaining. It was a good night.

As I write this, we are sitting on an airplane on the way to a wedding in Palm Springs. I was worried about getting the leg cramps during the flight, but so far, so good.

Another problem I had last week was the start of severe itching of my scalp. This was a surprise to the care team. It was driving me crazy (crazier than normal), but I found that anti-itch cream seemed to make it tolerable. But the itching gradually lessened to the point where is is not big deal. Now when I scratch my head, people around me assume that I am just thinking.

And then there is the neck pain. Yeah, it is still there and it varies. Sure, it hurts sometimes, but it does not much impact my quality of life. Not bad at all today, but is this because of the Dex I took yesterday (steroid) or that I am getting used to it or whatever. I have no idea.

One good thing about this clinical trial is that it is a 28 day cycle and all treatments are oral. On "Day 1", they had me there for most of the day. The "treatment" consisted of taking the pills and then getting tests over a period of 5 hours. This after waiting for several hours for blood tests in the morning and an exam by a nurse practitioner then another wait for a chair in the "infusion area" where I did not actually get an infusion.

Yesterday was my weekly visit (Day 8). Relatively easy No exam. Blood test in the infusion area. But then was the "funny" part. I had to bring my clinical trial pills - all of them - including the Dex. .The nurse took them and sent them to the "pharmacy" where they determined the "dosage" and took 4 of pills that I brought into a little bottle along with 10 of the Dex pills - which had to come from THEIR supply - they would not use mine. The then sent them back to the nurse with my original supply. I was then allowed to take the pills. This took about an hour. Bear in mind, that this EXACTLY what I do every morning when I take the exact same pills in the exact same dosage from the exact same bottles all by myself. I don't know why this seems strange to me. Perhaps there are some parts of modern medicine that I am not destined to understand. Anyway, the nurse gave me an EKG and sent me home. I was back at FHV by 10:30. Not bad and I expect next week to be even more efficient now that the nurse knows the routine.

Of course we won't have any idea if the treatment is working until around New Years. We'll keep our fingers crossed until then.

So - all in all, life is good. My energy is good - in spite of the lack of sleep. I continue to make my bowls. We are on our way to a wedding in Palm Springs. (Guess what they are getting as a gift. That's right a very nice bowl designed and build just for them.)  Hopefully this trip will turn out better than the last one. At least I don't have to worry about appendicitis again.

So, after reading all this, (and I would not blame you if you did not get this far), you will understand why I will nearly always answer the "How are you doing?" question by saying. "Great. How are you doing?" Much simpler that way and the blog is here for those who want more details. Don't you agree.

Wednesday, November 27, 2019

Happy Thanksgiving and Clinical Trial Started

Happy Thanksgiving everyone. Well, actually, Happy Day Before Thanksgiving.

I just started my clinical trial of CC0-220 (whatever that means) today. I will be taking this drug orally for the next 21 days and then I have 7 days off.

I can't say that I am thrilled. I was hoping to get a trial that combined this drug with Velcade. There are four "cohorts" and I got the one with Dexamethosone, but no Velcade. Also, I would rather be on the treatment from a year ago, but I am not. Long story there.

Before starting this clinical trial, they provided me with a "consent form". In the consent form, there was a list of possible side effects - 8 pages of side effects. I kid you not. Eight pages. Most of them, I already have to some degree or another.

This morning, they did a preliminary blood draw in "Laboratory Services". I then had an exam with a nurse practitioner on Floor 7. I then went to "Infusion" on Floor 6 where they gave me IVIG. They gave also me the 10 Dex tablets and drew 12 vials of blood and then gave me the actual CC-220 drug. Next they will wait 3 hours, draw more blood then wait another 2 hours and draw still more blood. That will be the end of the blood samples for today, presumable because by then I will be completely empty.

I have always previously been treated on Floor 7. Treatment for this clinical trial is on floor 6. I feel like I have been demoted. Plus my favorite nurse is on Floor 7. But the floor 6 nurses also seem very nice, though it might take them a while to get used to me.

On the bright side, they have a candy bowl on Floor 6..

So, now Barbara and I have 5 hours to kill while they watch me in case there are disastrous side effects. So far so good. I am using my time to process email and work on the cancer blog. Those on the joke list will also most likely benefit.

Have a great Thanksgiving everyone.

Wednesday, November 20, 2019

Starting another clinical trial

What a day.

Apparently, I have been accepted for a new Clinical Trial.

This one is called CC-220 and it is a clinical trial for a drug called Iberdomide. It is in the same family as Revlimid, but lots more potent. Revlimid is one of the drugs that worked so well in a cocktail So we are both hoping that this new thing will work for me.

There are four "cohorts" to this trial. Each gets several helper chemicals to go along with this. I have not yet been assigned to a cohort. This assignment will be random.

So today I was screened Here is how my screening day went.
  • Our day started at 9:30 when we left FHV for a 10:30 blood draw at DF. 
  • At 11:30, we met with the hematologist to discuss my blood thinner medication. This appointment had been scheduled for months and had nothing to do with the clinical trial.
  • At 12:30, I was to meet with my Kathy, the Clinical Study Nurse to sign the paperwork for the clinical trial, but she was delayed by about an hour. 
  • This made me late for my next appointment which was another "blood draw". They did not tell me why they needed more blood, but I do not question these things. This delay threatened to delay the other appointments going forward, but I was rescued by my "usual" infusion nurse who was not assigned to help me today. She  saw me in the waiting room, found an unused room and did the blood draw, getting me close to being back on schedule.
  • Next I was almost on time for my "Bone Marrow Biopsy". The poked a hold in my lower back and dug out some bone and marrow. I was glad when this was over.
  • My EKG was scheduled for 3:30 and this happened on schedule.
  • After that, I want to X-Ray for a "skeletal survey". This consists of 17 separate x-rays. 
  • As I write this I am back at "Infusion" where the nurses know me and try to help me as much as possible. They brought me in early and they have already ordered the blood for the transfusion they are giving me. Not sure when I will get out of here. Best estimate is around 8:00 PM. At least the traffic back to FHV should not be bad.
So, that is today. Yesterday, we visited Mass General. I wanted a second opinion, so my primary care doctor set this up. I had been upset because I was "between treatments", my numbers where high and getting higher, and I feel that the cancer was/is damaging my body. And I was not getting any treatment. After meeting with this the lead MM doctor at Mass General, I have come to the following conclusions:
  • My current oncologist is brilliant and strongly believes in the clinical trials he is running.
  • He may be excessively biased toward clinical trials, occasionally to the detriment of patient outcome.
  • I now believe that changing from the regimen I was on when I had my stroke (RVD+Pano) was a mistake. I decided this after talking to the hematologist today and after getting the second opinion yesterday. Who knows how long it would have kept working, but stopping when we did was a mistake. Too late now to do anything about it the months that I was not getting a treatment that worked.
  • I am upset that it has now been six weeks or so with no treatment. I still do not know why we could not have used my old RVD+Pano treatment until I was ready to start the latest clinical trial.
  • Given where we are now, I am comfortable with being on the trial.
So, how am I feeling? ? Not bad, but I have a pain at the base of my skull that troubles me. It seems to be getting worse over time and I am worried that it might not be reversible. This is the main reason that I am so upset at being "between treatments" for so long. My oncologist says that he will order another MRI in a few weeks. 

But, if all goes well, my new regimen should start next week. It will be a month or so before we know if it is doing anything for me.

Meanwhile. my oncologist asked me about my other symptoms. I told him that the "peripheral neuropathy" in my feet seems to be getting worse. I have been applying cocoa butter twice a day, but he suggested that I start using a mixture of Cocoa Butter, Coconut Oil and Shea butter. On top of that, he wants me to mix in some Frankincense. Seriously? I thought frankincense went out with the Three Wise Men. Next they are going to ask me to mix in some myrrh.  

So, that is a lot to report. I tried to keep it as brief as possible. I will update once I know more.

Friday, November 1, 2019

Another Clinical Trial

On Wednesday Barbara and I spent 8 hours at Dana-Farber (DF).  During our visit, I got an EKG and an IVIG infusion.

We were supposed to meet with the oncologist at 2:45. We met at 6:45.The oncologist is recommending yet another clinical trial. They have not yet told me too much about it - like when it will start or how often I will get treatments. There are several "cohorts" in which I might end up some requiring two visits per week to Dana Farber. We will see what happens.

Given that my M-Spike numbers are pretty bad and getting worse, I am anxious to get started.

We have gotten used to these long visits to Dana Farber with lots of waiting. We spend the time on our phones and I bring a computer and sometimes watch Netflix. However, first thing on Wednesday, my glasses broke. One lens fell out of the frame and I was not looking forward to entertaining myself with one eye closed. But wait !!! I'm and engineer. I should be able to fix this, right?

For those of you who sometimes wonder if I am a "geek", you will now know for sure. Here is how I "fixed" the glasses:

Yup - that's right. I walked around Dana Farber wearing glasses that had been "fixed" with a rubber band. Surprisingly, I was able to see fairly well with the rubber band in front of that eye.

I also had a bit of luck last week. I will leave it to you to decide if it was good luck or bad luck.

Several weeks ago, while visiting Lake Region General Hospital (I don't limit my business to only Dana Farber), I noticed a "ghoul" in front of the gift shop. Knowing that Barbara likes Halloween decorations, I invested a dollar in a raffle ticket to win the ghoul. Perhaps I was the only one who entered, but I won. The woman at the shop asked me to get it as soon as possible because she was very sick of looking at it. Apparently, they had forced her to move it into the shop because it was reminding hospital patrons of why they were at the hospital; it looked too much like the "grim reaper". But Barbara loved it. We brought it to Fox Hill Village to add to their decorations and set it up outside the dining room.

Here is a photo of me with the ghoul. I am the one on the right.

So, that is the report. I will send more as I learn more. 

Tuesday, October 22, 2019

No More Melflufen

In my last post, I mentioned that Melflufen did not seem to be doing anything for me but that they wanted to get the results of last Wednesday's test before reaching a definite conclusion. Today, they called me to tell me not to bother coming in tomorrow for my scheduled treatment. The test confirmed that Melflufen is not helping me - at least not much. This was no surprise to me. They asked me if I want to come in tomorrow anyway for IVIG, I politely declined.

The plan is for me to come in next Tuesday and meet with my oncologist. Hopefully, he will have some ideas as to what to try.

Meanwhile, I am feeling pretty good. I mentioned that last week's transfusion helped, but did not make me feel like Superman. I expected immediate results, but the improvements have come slowly. I have been feeling a little better every day. Not sure why, but it could be that it has been long enough that the negative effects of the Melflufen are starting to fade. I am still not my old self, but I have again started using the stairs at Fox Hill and while I get winded after two flights, it is not too bad. A year or two ago, I would do 30 flights as a short workout. Maybe I can work back up to that.

One thing that has come up is that I am getting pains at the base of my skull. This has slowly been coming on for the last 8 or 10 months. The nurse practitioner sent me for an MRI and based on this, concluded that I need physical therapy. After reading the report, her conclusion is not passing my BS detector and I have asked my Primary Care Doctor to take a look as see if he wants to recommend someone who knows more about this stuff.

Someone recently asked me about the lump in my leg. That is gone. They did an ultrasound then a CT scan then an MRI (your tax dollars at work). I have decided that the problem was a paper towel holder mounted under my desk that kept hitting the leg at the site of a previous injury. I removed the paper towel holder and the cure started immediately.

That's all for now. I will try to post an update after we meet with the oncologist.

Saturday, October 19, 2019


I want to start this posting by reminding my faithful readers of the reason for the blog. I started it in case people were wondering about the details of my status and treatments. When you casually ask either of us "How are you doing?", you will always get the same answer from Barbara or me. It will be "Good, Very Good, Fine, Great" or something like that. That is what people want to hear. They don't really want a detailed "organ recital". They want to hear that their friend is doing well. They don't really want to know the details. And it is not because they don't care; it is because they do.

While I don't mind telling people about my medical details, going through it repeatedly can get tedious. That is why I take the time to put it into the blog. Please don't be offended if we ask you to check the blog. That is why it is here.

As a reminder, if you do call us, use our cell phones (781 area code). Avoid using the 603 number because we have it going directly to voice mail (thank you robo-callers). If you leave a message, it might take several days for us to get back to you. We no longer have a PO Box in Meredith, but get mail in both Meredith, NH and Westwood MA.

Please do not confuse me with the "Warren Clark" from Keene, NH who was just sent to prison for dealing drugs. It is NOT ME. Trust me. More drugs is the last thing I want in my life.

So, here is the latest status.

I am in a sort of limbo, treatment wise. We went to Dana Farber on Wednesday with the idea of starting "Cycle 5" of Melflufen. They decided to hold off a week. I was not surprised. Melflufen messes with the blood producing stuff in my body. I was low on both red and white blood cells. This did not surprise me since I was getting winded just going up a flight of stairs. I attributed this to the low red blood cell count. Instead, of Melflufen, they gave me a blood transfusion. As long as I was there, I got Neupogen to increase my white blood cell count, a flu shot, some Tylenol and Benadril to  help with the transfusion and finally some Zometa to help my bones. For all I know, they might have popped some other stuff into me while I was not looking.

I had hoped and expected that the blood transfusion would make me feel like Superman. It helped but I still do not have my normal endurance. But realizing that I don't feel like Superman, reminded me that I bought a Superman costume for $5 at a yard sale several years ago. I got it home and it did not fit so I stuffed it into a closet and forgot about it. But guess what? Remember that appendicitis from this summer during which I lost 25 pounds? The Superman outfit now fits great. Now I know what I am wearing at the Fox Hill Village Halloween party? Gotta take the good with the bad.

We will be going back to Dana Farber next Wednesday where they will reevaluate the Melflufen treatment. I takes a week for test results from last Wednesday to come back. I will not be surprised if they decide to stop the Melflufen since it did not seem to do much during the last couple of cycles.

If it is not working, there are a number of other treatments they can try, so I will report back. 

Tuesday, October 1, 2019

More Medical Adventures

It has been a while since my last update and I will report on a couple of small but interesting medical "events".

First, a few weeks ago, we were on a picnic and I suddenly saw a gnat flying in front of me. I swatted at it a couple of times before I realized that there was nothing there - other than a bunch of tiny specs.

I immediately freaked out. Clearly there was only one explanation; I figured I going blind.

I managed to get an appointment with an ophthalmologist who assured me that it was just "floaters". What a relief. So the gnats are still flying around in front of me.  I am still swatting at them. There aren't as many has there had been. I think I might have gotten a few, 

The second thing that happened was that the following Sunday, I pretty much lost the ability to bend my leg. There was a lump that was very sore. I got to thinking that this could be due to a blood clot Barbara and I headed to the ER - in Laconia (the next town).

The doctor there ordered an ultra-sound and the report came back that there was no clot, but that there was a mass that was "highly suspicious for malignancy". That got our attention.

So, I reported this to the oncology team at Dana Farber and they ordered an MRI - which came back "inconclusive", so they ordered a CT scan that also came back inconclusive. Meanwhile, my leg was feeling better every day and the lump seemed to be shrinking. Also, this was the exact spot where I had injured the leg a year ago. So, we have all decided to "watch and wait." I really don't think this is anything I need to worry about.

Meanwhile, I am still on the Melflufen Clinical Trial. I am back to having enough energy to spend several hours per day in the wood shop. The best news is that I don't have to go to Dana Farber every week. They let me get the weekly "CBC" tests done in Laconia. I only have to go to Boston once every 4 weeks.

The bad news is that it is not clear that the Melflufen is actually knocking the cancer down. So, I think they will have me do maybe one more cycle and if they don't see an improvement, the oncologist will look into his bag of tricks to see what else he can pull out. 

Friday, August 23, 2019

Back on Chemo

They finally restarted my chemo on Wednesday (8/21). My last chemo was back before out ill-fated trip to the Baltic and my bout of appendicitis,surgery, etc. This is good. Let's hope it works.

Recall that I had had only two cycles of this new experimental treatment before the "short" break for my trip. At that time, the treatment did not knock the cancer back but seemed to hold it in place. That was not so bad given that the cancer seemed to knocked back by the previous treatment and at least at that time was not coming back too quickly. Most likely, the cancer has come back during my months of non-treatment. Time will tell what the numbers say and more time will tell how well the treatments are working.

I had hoped to restart the chemo last week, but they seemed surprised that I had not recovered more quickly, even though we had made my status very clear several times over the previous several weeks. I actually visited two doctors during each of my last two visits to DFCI. One of them decided that I might have some type of pneumonia that did not show up on x-rays or respond to antibiotics. She gave me a foul tasting goo that I have to take twice a day. In case it was not this pneumonia thing and due to my running a slight fever, my oncologist had me sit for a super-powerful IV drip and prescribed a 10 day course of gigantic antibiotic pills. It looked like taking them would require a shoe-horn, but fortunately I have had not trouble getting them down.

So, over the last week, my temperature, taken daily, seems to be normal or below and my appetite is back. (Can you imagine me with no appetite?) I have actually managed to regain one of the 25 lost pounds - few if any which seem to have come off my middle. I am still a bit draggy, but I manage most days without a nap. People tell me that I look good but I am still waiting for them to start saying that I am good looking.

We have had visitors to NH over the last two weekends and more coming this weekend. They have been a lot of fun and having people around keeps me moving. I think is good for my recovery. We actually got the boat uncovered last weekend and took it out which was an accomplishment.

That's all for now. I will post another update when we know more. 

Monday, July 29, 2019

Post-Op Complications - Or Not?

I am back in the hospital but hope to be getting out today.

My surgery recovery was progressing reasonably normally, but I was more "draggy" than I thought I should be and also, I was running a bit of a temperature. My appetite was way down. This situation did not seem to be getting better day by day.

Finally, on Thursday, Jul, my 25 primary care doctor told me that I should go back to BWH where I had had my surgery.

BWH ran a bunch of tests. First, they discovered that my blood pressure was quite low - 90 / 60. Next, they did a CT scan of the surgery site. Good news there. No sign of any infection or "leakage". All indications are that the surgery site has been healing nicely. This goes along with the fact that my jelly belly has been feeling better every day.

The bad news is that they don't have any idea why I have these symptoms which include:

  • Wanting to sleep a lot
  • Elevated temperature
  • Low blood pressure
  • Greatly reduced appetite
  • Overall feeling very "draggy". 
Saturday, I suggested to the surgical team that has been monitoring me that my symptoms might be unrelated to the surgery. They could be due to a virus that I picked up somewhere that my immunocompromised body is having trouble dealing with or that I am dealing with long term effects of my cancer or my chemotherapy. The surgical team told me that they had independently come up with the same theory.

So, they handed me off to the oncology team and the oncology team has decided there is no real reason to keep my in hospital. They plan to give me the boot later today. My blood pressure is up to something reasonable. I am feeling a bit better. My temperature is only slightly high. So, I am looking forward to getting outta here.

Barbara and I plan to head to NH. We hope to be there a week and a half before we have to come back to the Boston area.

So, that is the latest update.

Friday, July 19, 2019

Appendix is finally gone

After my last two posts, you might have thought that our trip / appendicitis adventure was finally complete and that you would not have to read about it any more. That is certainly what I thought. I could not have been more wrong.

The short version is this: On Friday, July 12, they removed my appendix along with about 8" of bowel. I have been recovering normally since then. I got out of the hospital yesterday, July 18 with no further complications.

That is the short version. For anyone who wants a longer version, keep reading.

On Wednesday, July 10, I went for my normal chemo appointment. I felt pretty good. Certainly no abdominal discomfort. My oncologist insisted that I consult with a general surgeon. I made arrangements to do that, but the surgeon insisted on a CT scan before he would see me. I managed to get the CT scan that same day. Barbara and I left happy after that very long day at Dana Farber.

The next day as I was literally packing the car for our first visit to NH, I got a call from the Nurse Practitioner that I had gotten to order the CT scan. She told me that the radiologist did not like what he saw and that I should get myself to the BWH Emergency Room as quickly as possible and "let them deal with it."

So, Barbara and I headed to "The Brigham" as we call it. The checked me in and told me that they would operate at the end of the day (Thursday).

They didn't. At the last minute, they decided to delay due to my having injected myself with blood thinners that morning. By this time, I was getting sick of cooling my heels there, especially since there was no discomfort in my abdomen. I sat in a hospital room all day Friday. Late in the afternoon, they came for me. They explained that they would try to remove the appendix laparoscopically which means through a small incision assisted by a couple of tiny poke holes and that this should take about 90 minutes. They also explained that if things looked worse once they got in there, they might have to make a full incision and that this could take about 3 hours.

They tell me that they carved on me for about 6 hours. The removed not only the ruptured appendix, but also about 4" of bowel on either side of the appendix. Barbara, finally went home exhausted.

I did not feel too good, the next day, but it was not all that bad. By Sunday, I had developed severe indigestion. By the time they gave me a pill, it did not do much good. Eventually they installed an "NG Tube". It took them 7 tries. This was unpleasant, but relieved the indigestion.

From there it was onward and upward. On Tuesday or so, they started allowing me to eat liquids. On Wednesday, I could eat solids and on Thursday, they kicked me out.

Barbara, needless to say, was terrific all the way through.

So, we are currently at Fox Hill Village, I am pretty draggy, and my belly has a 5" incision that looks like it was stapled shut by a 3 year old using a power stapler for the first time. I am trying to psychologically deal with the realization that I will never again look quite as good in a Speedo.

So, hopefully, this is now behind us. I have thought this before, so we are keeping our fingers crossed.

Normally, I like to liven up my posts with photos, but I decided to spare you.

Tuesday, July 9, 2019

Trip Summary

Since my previous blog summary as well as a couple of Facebook Posting plus some individual emails, many thoughtful friends have sent me their well wishes and words of support. I have decided to write up the entire story in one place. Here it is. I will try to be brief, but you know me. . .

You might be thinking, "I can't believe he expects us to read all this."  You would be right. I won't be offended if you don't read it. But here it is, just in case.

Our saga started with our planned cruise of the Baltic Sea with Overseas Adventure Travel.

At first, things started out well. We flew from Boston to Stockholm where we spent a couple of days before boarding our ship, the M/V Cleo. We sailed overnight to Helsinki where we spent a couple of hours on a bus tour and then went to St. Petersburg where we spend two days visiting glorious palaces. A lovely city. From there we sailed to spend a day each in Tallinn Estonia and Riga Latvia. Both of these are distinguished by extraordinary architecture.

My birthday happened while we were on the Cleo. I wanted to avoid that whole singing waiters thing, so I had not told anyone that it was my big day. Unfortunately, I was betrayed by my wife. How could I have thought that she would keep the secret? I was presented with a cake that included high intensity pyrotechnics along with a card signed by all members of our tour group. Meanwhile our cabin had been decorated with towels folded like cute little animals. So, all in all, it was very nice.

From there, I am told that the boat sailed to a small town named Visby on the Island of Gotland which is part of Sweden. I came down with some sort of illness. I can't say for sure because I was pretty much "out of it". Apparently, I agreed to skip the tour of the island. There were a couple of times when I slipped off the bed onto the floor. I was too weak to get up off the floor by myself.

Mostly, I was very weak and tired with some pains in my abdomen. The ships doctor was called. I asked her if perhaps I had appendicitis and she said that was impossible since my pain was on the right side and the appendix is on the left. Now, this was news to me, but who am I to argue with a doctor.

I have been told that further discussions took place out of my hearing range and next thing I knew a couple of EMTs showed up, loaded me into an ambulance and took me to the local hospital. They ran blood tests and gave me a CT scan and told me that I definitely had Appendicitis. The doctors jaws dropped (literally) when I told them that the ship's doctor thought the appendix was on the left. It really was fun to watch their faces, No matter. By now the ship was on its way to Poland leaving both me and my appendix (still attached) in Visby, not to mention Barbara.

After some small discussion, and in view of the fact that my appendicitis did not seem critical, they decided to try treating me with antibiotics.

Meanwhile, what about Barbara? Turns out that there were zero hotel rooms in Visby. Rather than put Barbara out onto the street, they brought a second bed into my room "just for one night". She ended up staying for the entire visit.

The doctor there was particularly fond of a test called "C Reactive Protein" (CRP) and after the first day, this had dropped nicely. They said surgery would not be needed. But after the second day, it failed to drop any more and they were again thinking of separating my from my poor, not totally innocent, appendix. They did another CT scan and found that yes there was still some appendicitis, but that my intestine looked healthy. They still recommended extracting the appendix. BUT, before they got out the carving set, they were going to check with an older more experienced doctor.

And what did I think of this? Truth be told: by this time, I really didn't care much one way or the other. There was almost no pain in my abdomen, I felt tired, but mostly pretty good. I had serious doubts that it was necessary to separate me from my appendix. But, on the other hand, I figured that if this was going to get me out of there any faster, then by all means cut it. I could not think of anything in particular that I needed the appendix for, so what the heck.

But a new doctor came in the next day, he said he did not think the appendix should come out. He thought that the failure of the CRP (crap?) to come down was likely due to other factors and that the antibiotics were working they way they should.

They kept me for another couple of days on IV and oral antibiotics. Yesterday, they switched me over to oral only and this morning, (Sunday), they loaded me up with enough giant pills to complete the cycle and set me on my way.

We had been in Visby for around 5 days - huddled in a shared hospital room. On the last day, we decided to go out for a walk. It turned out that the hospital was about a half kilometer from the "Old Town" which was surrounded by walls 30 feet high. We wandered around the village for a half hour or so and enjoyed it greatly. It was frustrating that I did not have more energy; I was pretty beat by the time we hobbled back to the hospital, but at least we had gotten to see the most important part of the island. One point of satisfaction is that when the ship's company visited, it was pouring down rain. We had a very nice day. As nice as it was to be visiting the old ruins, the best part was being outdoors in a beautiful park with the peaceful surroundings.

We left early for the airport and got there before it opened. Literally. The taxi dropped us off in front of the departures door. It was locked and there was no sign of any activity. After about 15 minutes standing out there in the wind, someone came by and let us in. We got on our flight to Stockholm and from there we got a flight to Copenhagen. We got to our hotel at around 5:00 PM. We were at the Admiral Hotel which is very nicely situated in Copenhagen.

Because it was unlikely to get dark before we went to sleep, we decided to try another walk. While I was mostly recovered, I was still taking giant antibiotic pills and these were tiring me. Still, we walked along the shore for a mile or so. We got as far as the mermaid statue and saw many other beautiful points of interest, although I have no idea what they were. Still it was another very pleasant walk. By the time we got back to the hotel, I was totally wiped out. We ate at the hotel.

The next morning, it was pouring down rain and we despaired of any additional sightseeing. However, we ran into the remains of our OAT tour group who were doing the "Extension" in Copenhagen. While chatting with them, we discovered that the rain was really not bad. We went on another walk, this time in the opposite direction and ran across the famous old canal area called Nyhavn. Again, this was a beautiful walk and a very pleasant way to spend the hour we had remaining before leaving for our flight.

As I finalize this, we are on the airplane to Keflavik and we expect to be back in Boston by the end of the day.

I will wrap up with some "take-away" thoughts.

* Overall, the trip was fun. We got to visit many interesting cities and even the hospital was an adventure. It is interesting that I am not angry or particularly upset by the way things turned out. Perhaps I am becoming more mellow with age. I do feel very bad for Barbara.

* The Swedish hospital was excellent. It was very modern, absolutely spotlessly clean and nicer than any hospital I have seen in the states. It was very large and laid out in curves with a good deal of art decorating it. Very pleasant.

* The doctors were excellent. I am slightly bothered by the fact that the younger surgeon was all set to separate me from my appendix based on one test result. But he wisely decided to consult with someone more experienced and they changed their minds. I think all the doctors we dealt with were outstanding.

* The nurses were also terrific. There seemed to be plenty of them, though at one point at around 4:00 AM, I went out of my room for something and could not find a one. After about 5 minutes, one of them wandered back.

* We could not be more thankful for their allowing Barbara to move in with me for the five days we were there. As I said earlier, there were no hotel rooms available, but still, it was very accommodating of them.

* At the end, they provided me with the meds I would use. They mentioned that normally, they would provide a prescription, but in view of our situation, they felt that it was better to just give us the meds. Again, very accommodating.

* The food in the hospital was also great. At first they brought it to me, but later they showed me where to get it myself. They would bring a portable food cart every day at 12:00 and 5:00 where they served a wonderful hot meal that really was excellent.

* I am not sure what to say about the ship's doctor. How could she not know where a patient's appendix is located? On the other hand, she was very nice. Barbara tells me that the decision to move me to the hospital was made by the Captain. You would hope and expect the captain of a ship to be a good and decisive decision maker. He was.

* This cruise was different from others we have been on. The greater distance between ports meant less time in the port city - often as little as two hours on the ground. There was no time to relax and enjoy the environment.

That's all for now. I want to get this thing posted. I will try to organize some photos for posting later on.

Friday, July 5, 2019

Travel Complications

Our cruise to the Baltic ran into some complications.

We are currently in a hospital in Visby Sweden on the Island of Gotland.

We were having a great time on t cruise around the Baltic Sea when I became ill. Mostly, I was very weak and very tired. I had some discomfort in my abdomen. They moved me to the local hospital where I have been ever since. They tell me that I have appendicitis.

They have been treating me with oral and IV antibiotics with the idea of avoiding surgery. After the first day, this seemed to be knocking down the disease, but there was no further progress on the third day as hoped. As of yesterday, they seemed to be leaning toward the surgery - which is apparently no big deal. At least not to them.

There is a big convention on the island, so there are no hotel rooms available. The room they gave me is beautiful with an ocean view. It is large, so they moved in a second bed which they are allowing Barbara to use. Very nice of them.

I am not feeling all that bad. I am tired and spend a lot of time sleeping, but I am not in pain. We are being treated very well. The hospital seems excellent and we are hoping to be back in the Boston / NH area soon.

As I write this, it is 8:30 AM and we are waiting for the doctors to come by. they took blood samples at 6:00 and I think they will want those results before they decide whether or not to operate. We have been in contact with doctors in Boston - both our primary doctor and my Multiple Myeloma doctor. They agree that whacking out the appendix is probably the best solution at this time.

I will try to use this blog as a means of letting people know what is going on.

Saturday, June 22, 2019

Travel Adventures

Barbara and I are getting ready to leave for a trip to Europe in a few hours. We will be on a Baltic Cruise with Overseas Adventure Travel. This will be our first time out of the country in 6+ years and we are very much looking forward to it. We are also a bit nervous because we have to travel through security with my blood thinner syringes. The web site says that is not a problem, but you know about Murphy's Law. Not to mention the TSA.

Before leaving, I thought I would update my faithful readers on the cancer front - which is in fact what this blog is supposed to be about. I have now completed two cycles of the Melflufen treatment - and the results are mixed. So far, the treatment seems to be holding the main indicators steady. The doctors tell me the disease is "stable" which is good. I, on the other hand, was hoping that the treatment would be knocking the disease down a few notches, but who knows? Maybe that will happen in the future. I am sure it will not help much that they are skipping a cycle so that we can go on the trip.

Once piece of good news is that I have arranged for some of my treatments to take place in NH. On the previous study, the treatments all had to take place at Dana-Farber, For this new one, I need to be there once every 28 days to get the Melflufen. I am then supposed to get blood tests weekly and get treatments only if warranted. I have arranged to get the blood tests at Lakes Region General Hospital which is less than a half hour away. Then if I need treatments, I can get those at Lakes Region as well. So far, the only treatments I have needed is for low white blood cell counts - a condition that is remedied with a shot that I can give myself.

It took a lot of negotiation to get this all set up - weeks in fact getting all parties to agree on the plan. But as of yesterday, I got the final approval and we are good to go. The most difficult thing to arrange was to get the treatment part, and the fact is that I probably won't need it. But still, it is good to have a backup.

We will get back from Europe on July 8. I get my next dose of Melflufen on July 10 and then I should be able to stay in NH for a full month. Hooray!

The other complication is that we have been wanting to replace the carpet in our bedroom. Barbara decided that if we are doing this, we should also have the room painted and that it would be good to get this done while we are away. Sounded like a good idea to me. Until she announced that the walk-in closet would have to be emptied - including taking down the shelves - which of course was my job. We also had to empty the bureaus, take down the lights, etc. What a mess. Especially while trying to pack for the trip. About half way through this process, I started trying to convince her that the old wall color was really nice and that we would never be able to duplicate the soft texture of the well worn carpet that we have been nurturing for the last 20 years. She did not fall for it. 

Friday, April 19, 2019

On the Road Again

New treatment starts today.

The drug is called Melflufen. It sounds like one of those funny names they come up with for Viagra, but the drugs are not related - at least not as far as I have noticed so far.

Apparently, there were a bunch of tests I had to pass before to qualify for this clinical study. I passed them all.

I also had to get something called a "port". They insert this thing under the skin on your chest.
As you can see from the image above, I was lucky enough to get a "2-Holer" (medical term). Then when it comes time for treatment, they don't have to stick a needle into my arm. Instead, they stick the needle through the skin on my chest and into the "port". They tell me that this is better. The only advantage I can see is that the nurse has a bigger target for the needle. The other reason is that the Melflufen can damage the small veins in my arm. With the port, the chemical goes into the large veins around my heart. Is is better to damage those?

They installed the port about a week and a half ago. This went smoothly, except that they told me that I did not have to stop taking my blood thinner. Therefore, for the first several days, the bruising got worse every day. I ended up with "PTSD". (Purple Tit Syndrome Disease).  Eventually, I stopped taking the blood thinner on my own. I wanted to stop the bruise before it got all the way down to my navel. Once I stopped the blood thinner, the bruising started to fade.

Still, having this thing there sort of gets "under your skin". Well, actually, it is under your skin. But it doesn't hurt, so it is not a problem.

So, the next question is side effects. When the doctors talk about this, they say that "usually side effects are minimal". But then when you read the disclosure form, it scares the crap out of you. It talks like things like anemia requiring blood transfusions, etc..

So, here I sit in the chemo chair at Dana Farber waiting with bated breath for my first shot of Melflufen to show up from the pharmacy. I will let you know how it goes. 

Saturday, March 16, 2019

A Change in Direction

Big news. They have decided to change my treatment plan.

For the last (nearly) four years, I have been on a regimen of Revlimid, Velcade and Dexamethason  (RVD) plus an experimental drug called Panobinostat - (RVD + Pano). This was great until I had the stroke. The hematologist told me that since I had started taking blood thinners, they should could prescribe chemo for me as if I had not had the stroke. But the oncologist was still uncomfortable with possibility that the Revlimid had caused the stroke and could cause another. He dropped the Revlimid, hoping that the regimen would still work. Guess what? It didn't.

I wanted to go back to RVD plus Pano, but he strongly recommended against this. He said there were too may other things to try - including a clinical trial of something called Melflufen - which he just happens to be conducting. The advantage of this new one is that after weekly doses for the first month, I will only have to visit Dana Farber once every 28 days. That is a big improvement of having to visit about 3 times per month as I do now.

That sure sounded good to me. Until we read the disclosure form. I have the following concerns:
  • It might not work. RVD plus Pano was at least working.
  • There is no telling how long it will work. My oncologist is hoping for a couple of years. A few months is more typical. I was an outlier on RVD + Pano and he is hoping I will be an outlier for this treatment as well. 
  • There were a whole bunch of other side effects listed. Sixteen if my memory serves. Again, the oncologist feels that the side effects of this drug will be significantly less bothersome than RVD + Pano. Let's hope he is right.
  • This treatment requires a "Port-a-cath" aka "A port". Until now, when they wanted to put anything in or out of my body, they just stuck a needle into a vein. That does not bother me. But with Melflufen, they need to do this via a port. What bothers me about this is that it is similar to the "PICC" line that I had a few years ago. This DID cause a blood clot in my arm. My oncologist says I need not worry about this because I am on blood thinners - and won't be taking Revlimid - and also this was a vein clot - not an arterial clot. Vein clots are not what cause strokes. Instead they cause pulmonary embolisms. But as I said, there is a small chance of that.  
  • I am majorly concerned with the increase in Dex (Dexamethasone AKA Decadron). I have been taking 12 mg of Dex every week. When I take it, I have trouble sleeping for one or two nights. It also makes me easy to get frustrated and angry over trivial matters. I become much nastier - even more nasty than my normal self. And then there is that fact that it makes me more talkative - if you can imagine me being "more talkative" - and it lowers the "Brain to Mouth Barrier". There is no telling what I might say. And with this new treatment, they will nearly quadruple the dose to 40 mg. I fear that sleep will become a distant memory and that I will turn into a monster. We'll see what happens.  Send condolence cards to Barbara.
On the bright side:
  • The two worst side effects of RVD + Pano have been diarrhea and numbness in my feet. These had been slowly getting worse although they are both still tolerable. These are not side effects of the new treatment. Under the new treatment they might start to get better. They almost certainly will not get worse. Too bad I loaded up on Imodium a while back. Let me know if you need any. 
  • I will have to go to Dana-Farber only once a month instead of three times per month.
  • I figure that if they run out of treatments to try, I can always go back to RVD + Pano. Who knows if it will work again, but I get some comfort out of having that as a backup.
  • The change in my treatment gives me something to report in this blog. Much more interesting than "No news is good news."
As you might be able to tell from the tone of this posting, I am not terribly thrilled about this development. I had almost convinced myself that RVD + Pano had turned my Multiple Myeloma from an incurable disease to a "chronic" one. I figured that my life could to on indefinitely with the only problem being the almost weekly trips to Dana Farber, which I had gotten used to. Not too bad, really. These new developments have pushed me back into reality. But who knows? This new treatment might work just as well as the other one did. We'll see. The oncologist is optimistic, but then he always is.

Meanwhile, back in the wood shop, I continue to make bowls and other trinkets. Most recently, I decided to make some things that I can use on a daily basis. I made a coffee mug and a salad bowl. Normally, I use a water soluble glue, but for these, I decided to use waterproof glue. So far, they both seem to work, but I have not yet had the courage to use the coffee mug in the microwave. My fear is that I will open it up to find a pile of wooden segments sitting in a pool of coffee. 

I will keep you posted.

Friday, February 22, 2019

Mose Nose

I was not sure whether or not to do an update, but I could not resist the subject line. Actually, Barbara tells me that is it spelled "Mohs" rather than "Mose" but I took poetic license.

This morning, I had Mohs Surgery on my nose. Some time ago, I developed a sort of wart-looking thing on my nose. I liked it. Thought it added character to my visage. Barbara did not. She insisted that I visit a dermatologist. They said it was some sort of basal skin cell carcinoma. They recommended Mohs Surgery.

So, this was how we spent our morning. Not all that bad really. I now have a big bandage on my nose. It makes me look a little like Bozo the Clown, though the bandage is (unfortunately) white rather than red. They said I might end up with a black eye or two. I will tell people that Barbara hit me. They will no doubt express surprise that it she did not do so sooner.

All went well this morning and my "Mose Nose" seems to be well under controls.

Where I am not doing less well right now is that my Multiple Myeloma numbers are going up. This means that my doctor's latest treatment idea, avoiding the drug that he thinks caused my stroke, is not working. We need to meet with him soon to discuss other treatment options - of which he says there are quite a few. On the other hand, he does not seem to be in that much of a hurry because he says my numbers are going up slowly enough that dealing with this is not urgent.

Easy for him to say. But I am not freaking out about this.

So, that is the report.

Tuesday, February 5, 2019

Back on Track

Barbara has told me that I should do a blog update even though there is not much to report. She says that my loyal readers might not realize that "no news is good news".

Anyway, the good news is that I am back on my "normal" chemo schedule - which means I am on a 21 day cycle. I go into Dana Farber on Days 1 and 8 (Wednesdays) and then I have a week off. All I do when I am in there is get poked and prodded and they give me a shot of Velcade. Seems like a lot of effort to spend 5 seconds getting a shot. They also draw some blood. I looked up "Bloodletting" on the internet and this seems pretty close to what they do to me. It claimed that this went out with the the Middle Ages. Apparently not.

Anyway, it seems that I am back on a regular schedule.

You may recall that I had a small stroke back at the end of October. They took me off of chemo for a while, and put me on blood thinners. No problem until mid-December when I banged my leg and apparently triggered some sort of internal bruise. My leg started to swell up. I talked to two doctors who both told me to continue with the blood thinners. My leg continued to swell. I went for my previously scheduled chemo appointment. The oncologist looked at my purple leg and said, "You/re not still taking blood thinners are you? So, I stopped taking the blood thinners for a few weeks and they suspended chemo. It took several weeks for the leg to get back close to normal.

So now I am back on a regular schedule. The difference from before the stroke is a daily shot of a blood thinner and a couple of additional pills. The pills are small enough that I hardly notice. Also, I am no longer taking Revlimid - which was one of the primary chemo drugs. It remains to be seen how well this regimen will work. My numbers went up when they took me off of chemo. This was expected, but I was hoping that they would come back down faster than they have been. We'll see what happens over the next few cycles.

Meanwhile, and unrelated to my disease, the device we use for video streaming had been giving us trouble. I ordered one of those Amazon Fire TV Sticks. We have been using it to watch a series where one of the main characters is named Alexis - which is very close to the activation word on our Amazon Echo. So, now we have the characters on the TV calling out and we have our Amazon Echo responding. It is like we have our computerized machines talking to each other. I am not sure what they need us for.