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.