Transfusion

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. 

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. 

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. 

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.

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.

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.

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.