Flying High

I think I am finally back to "normal" relative to my chemo regimen. In my last posting (back in May), I reported some hassles relative to the blood tests they give me before each treatment. I think I am now stable. There were no problems during the cycle that started three weeks ago.

I am still giving myself a shot of Lovenox every day. This is for the blood clot that I got as a result of the PICC line they installed for the anti-biotic. By now you realize that these shots have nothing to do with vodka or anything good like that. These are a real pain in the neck - or more precisely, the belly, but actually, they are a minor inconvenience in the grand scheme of things. I am meeting with a doctor next week who will hopefully move me to something I can take orally.

Cycle 34 starts on Wednesday. I am really not looking forward to this. It has nothing to do with the chemicals I am due to take. It is that I have to face the Clinical Study Nurse and report that I messed up my pill taking. I got confused one day and accidentally took two of the experimental pills (Panobinostat). I am afraid I will get yelled at. Well - she won't really yell, but I am still not looking forward to it. I feel like a kid who has to go to class without his homework. And not only do I feel silly about screwing up the pill taking, I also feel silly about being so worried about facing the teacher - I mean the nurse. I hope I don't get detention.

I had one really fun adventure back in May. For quite a while, it has been bothering me that I had never been in a helicopter. I decided that it was high time I did something about this. And I decided that if I was going to do this, I wanted to drive it myself. But it turns out that they would not let me rent one without training and a license and stuff like that. So we compromised and I took a lesson. It was really fun and looking back on it, I have to agree that it was probably better that I had an instructor along for the ride.

Barbara has successfully moved the cats to New Hampshire and they seem happy to be here and so are we. She has arranged to be in two Mah Jongg tournaments. My energy level continues to be better now that I am on a lower dose of Revlimid, so we can get some chores done.  Life is good.

One thing I should probably do is to get the boat launched. I figure I should probably try to get it running first. So far, I have managed to uncover it. The next step is to replace the gasoline in it and see if that helps. Wish us luck.

You may recall the PassePartout, the tracked snow machine that I bought to use for gathering maple sap? You know - the one that stopped running deep in the bowels of my grove of maple trees in the middle of last syruping season? I winched it onto a trailer and managed to get it back to "Clark Gables" (our NH house). I tried to start it - initially without success. A couple of weeks ago, I went to a "Vintage Snow Machine" swap meet where I found a new carburetor. I also went to the airport and bought some 100 octane, ethanol free, aviation fuel. And it started. Hooray!

I then put the old carburetor on it and it ran with that as well. Apparently, all I had to do was to try fresh gas. But then I tried it a couple of days ago and it ran, but not very well. It has occurred to me that I need to find a real old-timer who used to work on these and really understands them. You know what I am talking about. An "old timer" who is probably a guy about my own age . . .

Back on Chemo

We are now at Dana Farber waiting. One of the machines in the lab is broken and it is taking many hours to get lab results. Usually the results come back quickly, but today it is taking 3 or 4 hours minimum.

It is Thursday - my fourth visit here this week. Sunday, they told me to go to the ER because of a swelling in my left arm. Turns out this was caused by a blood clot that was caused by the PICC line that had been removed a week before. The PICC line was there so that I could give myself an antibiotic which I needed because I had a bacterial infection. This  (as faithful readers will recall) was the reason I was in the hospital for 8 days a while back. One thing leads to another.

Anyway, I am now injecting myself daily with Lovenox to  dissolve the clot.

Tuesday, I came in for chemo but flunked one of my tests. My white blood cell count was low. They told me to start injecting myself with neupogen. Which required a prior authorization from the insurance company which was going to take a while. They finally got it yesterday, so I had to drive in Dana Farber to get the prescription.  One thing leads to another.

The original plan had been for me to re-start chemo last week, but they decided to delay it by a week. But since I was there, they decided to give me some Zometa plus Saline - which is supposed to heal my bones. Unfortunately, the IV that they had put in that morning was no longer working - probably because I had pulled it most of the way out while reaching into my pocket for something. It took them three more tries to insert an IV line that worked. Barbara was afraid that when they started the saline, it would start squirting out through all the extra IV holes and that I would look like a lawn sprinkler. She wanted to get me a turn-table so that they could spin me around while the saline was squirting out.

Well, it is 4:00 PM and I have just been told that the orders for my treatment are in. Hooray. My white blood count is 10 times higher than it had to be and actually above the typical range. I guess I nailed that one.

This leaves only one remaining issue. I am supposed to get a shot of Velcade in my belly. When I get home, I am supposed to give myself a shot of Lovenox - in my belly.Yesterday, I was taking the Neupogen again in the belly. But here is the problem. Every shot is supposed to go into a different spot. There is only one solution. I need to work to increase the size of my belly. So tonight, when I am contemplating dessert, I will have to force myself to choose the most fattening one. What choice do I have? Dessert is now a medical necessity.

Out on Parole

They let me out of the hospital on parole a couple of days ago.  I learned two things from this release process. (1) It is a lot easier to get into a hospital than it is to get out. and (2) Rumors of impending release are often greatly exaggerated.

They had actually been talking about letting my go home "in a couple of days" since the first day I spent there. They were all set to let me go on Tuesday. I had just called Barbara and told her that I wold be out in a half hour and that she could come get me. Then, not 60 seconds later, a doctor walked in and said, "We have decided it would be good to give you some immunoglobulin. We will give it to you overnight, so you can leave in the morning." After an hour or so, they changed their minds again and decided to give me the "IVIG" during the next day, so I would be there for nearly another 24 hours.

So, Barbara drove into Boston to fetch me back to back to Fox Hill Village on Wednesday. This time they actually let me go. It might have had more to do with my increasing orneriness than the state of my health.

Yesterday, we were both in pretty rough shape. I had a bad headache and was really tired, so I spent a lot of time sleeping. The cats where a big help here as role models. Meanwhile, Barbara has a really bad cold. Between the two of use, we did a lot of stereo coughing and we are going around trying to avoid infecting each other.

I feel better today than I did yesterday, but I still have the bad headache and a sort of messed-up stomach. I also still have the very bad cough, as does Barbara. We made it down to the Friday Lunch Buffet today and while I did not manage to stuff myself with my usual quantities of food, I did manage to eat enough to not be embarrassed. Funny that nobody wanted to sit with us as we were coughing away at each other.

I am still on  IV antibiotics. Before I left the hospital, they installed something called a "PICC Line" (Peripherally Inserted Central Catheter). Ultimately, I should be able to give myself the IVs, but for a few days, they send a visiting nurse to train me and make sure I can do this by myself. Today, I played pretty stupid, because the nurse they sent was really cute and I am hoping that if she thinks I am really helpless, she will figure that she has to come back.

I also had another great idea. I figure that I have this IV line and it should be good for something. I also have these big hypos filled with antibiotic juice that I "push" into the IV line and that are then empty. I am wondering why I couldn't just refill the antibiotic hypo with some Jack Daniels or whatever. Pretty clever, huh? Barbara does not think this would be a good idea, but I would be curious as to what the rest of you think.

Incarcerated

Incarcerated. That's right, they have me locked up in Brigham & Woman's Hospital in Boston because of a fever. I have been here since Tuesday.

I have had a cough since January. It has varied from a small, barely noticeable thing to one that is quite substantial. And then chemo during treatment a week and a half ago, my temperature was slightly elevated. It kept going up until last Tuesday, it was 103.6 and they decided to commit me.

Apparently, I have some sort of bacterial infection, the source of which continues to be a mystery. They are giving me a series of IV antibiotics. These have lowered my temperature to just under a hundred or so. They are still not satisfied.

So, here I sit, waiting for my temperature to go down. It is not bad really. I have a very nice room with a little fridge and a private bathroom. I can pick up the phone, place an order, and people bring me "breakfast in bed" or any other meal that I want. I could get used to this. In fact, I think I already have.

The down side is that people come in for other reasons. One of the more frequent is "vitals" during which they measure blood pressure, and temperature. It is not what they do. It is when they do it. Often, this is in the middle of the night - just after I have managed to get to sleep. They show up again at 5:00 AM.

They are not as bad as the "labs" people who show up at 5:30 AM with needles that they want to stick into me. Some insist on two separate stabbings. "Good Morning, Mr. Clark. I am here to stick needles into you." The woman who does this is very nice, but has an Eastern European accent. This morning, I worked up the nerve to ask her where she was from. I was relieved to hear "Albania". I was afraid she would say, "Transylvania". I asked the doctors if they had ever figured out how much blood they took from their patients and whether or not this was more or less than the Medieval Physicians took when the "bled" their patients.(I wonder if it is the bleeding that really cures us?)

They have done lots of other tests as well including many x-rays - of my chest and head, an EKG, a CT Scan, an echo-cardiogram, many blood cultures, and other stuff that I have probably forgotten about. They have another thing scheduled for tomorrow where they stick an ultrasound thing down my throat for some sort of special echo-cardiogram. I can hardly wait.

And really, I feel pretty good. I am quite comfortable here. And while the "stabbings" give me something to complain about in this blog, they really don't bother me at all. The people are great. Barbara has been terrific about visiting me daily. I am not going "stir-crazy". I have started dressing in civilian clothes every day and leaving my room for a while to go out and explore the hospital - mostly just to get come exercise. And I have been doing a lot of reading.

 So, it appears that everything seems to be on track toward some sort of parole within a few days. I will probably put out another blog before then.

Until then, I remain,

Yours truly,

Warren, the human pincushion. 

Happy Easter

Tomorrow is Easter. Happy Easter everyone. How glorious today has been. In fact most of the week has been pretty great.I have been in New Hampshire enjoying the wonderful weather. Barbara has been at Fox Hill keeping the cats company. Things here are great:

• The computer problems described in the last blog have all been fixed.
• The ice is gone from the lake.
• Maple Sap is running - or at least it was earlier today.
• There is a herd of about 7 beautiful deer wandering outside in the yard eating our bushes. Or at least there was until I chased them away. Lovely creatures they are - especially when they are eating the neighbors' bushes instead of ours. 
• The sap boilers are running strong.I gathered about 30 gallons of sap today and I hope to boil that down to about 2 gallons so that I can fit it in the refrigerator until I get back to "finish" it. 

I had though that "sugaring" was done for the year after my previous visit to New Hampshire. But then we got a cold snap followed by warm weather and another "run" of sap, so I came back up. I did several batches this week.  

Mostly I have been feeling pretty good and my most recent numbers are the best they have been in quite a while. I do get really tired and some days I sleep a lot. I think I learned this from the cats. They are still the champs and I am trying to learn everything I can from them.   

One problem is that I sometimes get some pretty bad cramps in my legs and ankles at night. I can generally get up and "walk them off" in 5 minutes or so. The doctors say to drink Tonic Water. I have tried that and it does not seem to make any difference at all. Maybe as the weather warms up I will try adding some Gin to the Tonic. Maybe with some lime. Can't hurt.

The other thing that someone suggested is drinking pickle juice. Weird, huh?  So, I have been eating a lot of pickles and drinking the juice. That doesn't help either, but it turns out that I really enjoy the pickles, so I have been continuing with that treatment. 

I will be heading back to Fox Hill tomorrow morning to have Easter Dinner with Barbara and some friends, I am looking forward to that, but New Hampshire is so pretty that I hate to leave. 

The Sap Tapper

Some of you may have noticed that we have had a strange winter. This has confused the heck out of my maple trees. Usually we north country “sugarers” figure that Sugaring happens in March. This year the first big flow was in early February. I had not yet tapped my trees. After watching the weather, I came up to NH for what I figured would be the next flow. Caught enough of the end of that to make a gallon and a half of syrup. That was 2 weeks ago.

I am most excited to report that my vintage PassePartout (PPT) (“mini-tank”) worked beyond my wildest expectations. It drives over anything – snow, dirt or mud without the slightest hesitation. It gets me right next to the individual trees. It is not perfect. It still makes mostly right turns. Also, working brakes would be nice. Coming back to the garage one day, I came in a bit too quickly and barely got it stopped before knocking over the boiling table. I did nudge the not very solid table a bit, but it did not go over. 

You can see my boiling system in the image below. Today I ran all 5 boilers all day boilding down most of about 40 gallons of sap.

Last week being too cold for sap flow, I spent it at Fox Hill Village with Barbara and the cats. I came up to NH for a couple of days earlier this week. I got some sap but not as much as I expected Also, I noticed that the PPT was running a bit rough. I headed back on Tuesday for chemo on Wednesday.

Wednesday was looking quite promising and I could hardly wait to get back here to the sugarbush. Chemo went quite smoothly. My numbers are still holding steady. Everything happened on schedule and I was anxious to get onto the highway northbound.

In fact, I might have been too anxious. As soon as I walked in the door in Meredith, I realized that I had neglected to stop at the DF Pharmacy and pick up my Panobinostat – a drug provide by and necessary for my present clinical trial – not exactly available at my local pharmacy.

So, after leaving a message with the clinical study nurse asking if there was an alternative to 5 more housr of driving, I hopped back into the car and started back south to Dana Farber – not a happy driver. Fortunately, the nurse called me back a half hour later and said they could overnight the drugs, so I turned around yet again. This was still much better than going all the way to Boston.

As soon as I got back, cranked up the PPT and headed to the sugarbush. The PPT made it as far as the bottom of the farthest hill in the farthest reaches in the deepest woods of the sugarbush and then would not run. No way. So, I walked home, dejectedly as you might imagine.

Barbara, who is in NH this trip, offered to help. She drove my truck as close as she could get and I uncovered my little garden tractor, hitched the trailer to it and drove cross-country it to meet her. Together we managed to get close enough to the PPT to transfer the sap to the tractor, drive it up to the truck, and transfer the sap to the truck. We also managed to complete rest of the sap gathering. All without getting the tractor stuck – a minor miracle.  I am hoping for a gallon or so of syrup tomorrow.

So, clearly, yesterday did not go perfectly.

Also, did I mention that when I got up yesterday morning, my wireless keyboard at Fox Hill Village had stopped working? Then I got the NH, I turned my computer on and found that my beautiful 27” monitor that has been acting flaky finally bit the dust. And Barbara could not log onto her computer here.

Other than that, yesterday went pretty smoothly. But at least, I got some sap. I am hoping that a spark plug transplant cures the PPT and the computers can be fixed.

I will report progress on these and other issues when during the next update. 

Visiting Florida

It has been a while since the last blog update which I guess is good because it means that not much has changed. My numbers are up slightly, but not enough to concern anyone (except me a little). I am currently sitting in a chair at Dana-Farber getting ready for a wonderful injection of Velcade. Horray. What better time to do a blog update.

We just got back from a trip to Sunny Florida. Our friend, Anita, rented a house for a couple of months and invited us down to enjoy it with her. We wanted to get away from the horrible New England winter. The weather thing did not work out exactly as planned.

At 3:00 AM the first night we were there, our cell phones started to howl with a horrible alarm sound and yelled out at us that there was a tornado approaching and that we should take cover immediately. Where exactly were we supposed to go? I put my head under the pillow. (Hey - it always worked when I was a kid.) We went back to sleep and were much relieved the next morning when we woke up and realized that we were both still alive. Give me New England blizzards over tornados any day.

And Florida was not particularly warm - barely got above 70, but we had a nice time anyway, seeing all (or at least many of the sites). The house we were in had a beautiful pool that we did not go in because it was too cold.

Halfway through the trip, Barbara started to miss our kitties, so we had to go to "The Big Cat Habitat" which rescues large African animals like lions and tigers and then lets tourists look at them for a small fee. This place was totally cool, but the problem is that after seeing these giant lions and tigers, I have become a bit unsatisfied with our own puny little kitties. I want bigger ones. Not as big as the ones at the Big Cat Habitat - I am thinking of maybe 500 pounds or so. We are still negotiating. Barbara and I are trying to agree on who is going to clean the litter box.

Our other animal adventure was that Anita had been talking all week about doing the "Alligator Ride" and that sounded very interesting to me, so we headed to Myakka State Park. I was totally disappointed because the "Alligator Ride" turned out to be a boat ride where you see lots of alligators. You don't actually get to ride on any alligators.

But the real highlight of the trip was dinner visits with several dear old friends that we had (mostly) not seen in years. We all really enjoyed these visits. We had the most wonderful time seeing all of them again and catching up.

So that's the report. We hope that all is well with everyone and that the winter is being kind to you.