Rough day.

I promised an update this weekend, after my meeting with Dr. Connelly, which I had today. She and Dr. Meehan had some bad news for me. Bad enough, that I am a little reluctant to share, but the upshot is that they seem to have decided that my lymphoma is not curable, and that it is time to switch managed care. That, however, is not the bad news. The bad news is that my prognosis was given to me as months.

I was feeling fairly upbeat, in that my last day of radiation was this morning, and the lymph nodes seemed to have responded to it very well. Additionally, my spleen has continued to shrink. I am not particularly fatigued, or in pain. However, the problem appears to be the speed at which my lymphoma returned since my transplant, and the speed at which the lymph nodes swelled. Which, admittedly, was damn fast.

I feel relatively good, the best I have felt in a couple weeks (radiation is fatiguing). Of course, I will be looking into options. I have a lot of respect for Dr. Meehan, but I think that I need to get some other opinions on the possibilities of trying other treatments that might have a chance of curing me. Or, almost as good, extending my prognosis into the "few years" category, as there are some very promising treatments that are being developed right now, one of which is likely to be released next summer. It seems especially sucky to die of something that could be curable next year. On the other hand, unless I can find a doctor that believes that it is worth while to try for a cure, only the timing of the prognosis is in doubt. It is also true that not everything in curable, however stubborn I might be.

Do I carry on as if I did not have knowledge of this prognosis? No-one knows how long they are going to be around, so in some ways this is moot. When the doctors talk of timelines, it is based roughly on how other people have done in similar situations, and everyone is different. It is probability; it is not the same as my odds. Still... not good.

I am feeling a little bit at loose ends. There are a couple of very exciting projects that I have been working on, which I would like to finish, but the current timeline does not look like it is going to allow for that. Clearly, I ought to re-prioritize in case my illness follows the current prognosis, but I don't see that assuming that my demise is imminent is something focus on. To think that I am not likely to make it to next year is a listless sort of thought - it makes it hard to care about ... well, much of anything concerning the future, which when you think about it, is mostly what one works toward. Enjoying the present is great, but really, it is in the context of there being a tomorrow and day after - the building of memories, as much as the actual experience.

Well, as I said, I just got the news today, and I am not sure exactly what it all means. My doctors do not currently have a plan laid out, but are thinking about it over the weekend and will try to determine what they think is best in the long run. Any plan, though depends on my getting off my immune suppressants and steroids, so I am now on a very quick taper. The danger there is donor vs host disease, which can often also be fatal. I am eating well, exercising, resting and I need to try to stay optimistic as those are the few areas that I have any control over. I am certainly up for some dark humor if anyone has good recommendations for books or movies.

Fucking cancer.

Day 5 of radiation treatments.

The lymph nodes on my neck and chest have significantly reduced. Whether from the radiation treatment, the steroids, or the reduction in the immune suppresents is impossible to say. Likely from some combination of the three. The radiation treatment literally only takes about 15 minutes, and it does not feel like anything at the time, nor does it hurt afterwards. I have not had any side effects of skin-burn, or throat irritation, but it still takes it out of me. The fatigue is stunning. I have been working to keep my fluids up, so that the things released from the treatments get flushed out as fast and fully as possible. I am on a good bit of pain meds, but it is the fatigue that is crushing. At a certain level, fatigue actually hurts.

The radiation treatment was 400 centigray last Thursday and Friday, and then 300 centigray every day this week. Because the target is small it is not a lot of total radiation. The techs that run the machine are a wonderful bunch of young (30ish), bright, chipper, upbeat people, and even though the radiation makes me feel awful, I find that I enjoy seeing them.

After my final treatment on Friday, I have a meeting with Dr. Connelly, and we will be talking about what is next. Clearly, the radiation has kept the lymphoma in check, but it is not a cure because lymphoma is a blood cancer, not localized in an organ. So despite the fact that the symptoms have been treated pretty successfully, I am not sure what the status is. I think that the doctors are hoping that as they lower my immune suppresents, my donor cells will step up and recognize the lymphoma cells as bad and clean them out. I don't know how long that will take, or how we will know whether it is working.

For myself, I need to get some idea about a timeline of possible progress. I am still having some emotional difficulty keeping my chin up with this latest bout. The fatigue exacerbates this feeling of endless slogging, but the fact that I have no idea of where I am in this latest round of this war makes it hard. I hope that I am winning, but I am not even sure of that. I do what I can - I get out for a walk every day, and Becky has been feeding me great food. I keep my fluids up. I go to my radiation treatments and doctor's visits. I take my pills. I spend hours every day napping - to the extent that most of my awake time is to simply work through the list above. But, it would be nice to have some hours in a day where I am NOT simply fighting this illness. I was starting to have that about a month ago, and I am looking forward to that again. I just have no idea when that might be. 3 months? 9 months? 2 years? Bleh.

I have heard that the type of lymphoma that I have could even have changed because of the bone marrow transplant, although I am not sure how that works. If it did change, then it can only change for the better, because you can't get a worse form of lymphoma than the one that I had, so that might be a positive thing.

I will try to post an update this weekend and let you all know what the doctor says about the next stage of my treatment.

Self Advocacy.

I and Becky play the roles of "Good advocate, Bad advocate", so we work pretty well as a team to get the care that I need. My lymphoma is so aggressive that it is often hard to get the treatment in a timely fashion. We were reviewing what we could have done to accelerate the treatment this time. 

June 1st. I first noticed the lymph node and called it in to the on-call physician at DHMC that same day. He suggested that I keep an eye on it and have it visually checked by Dr. Connelly at my next regular visit. He thought that it was unlikely that it was lymphoma, but that it might be a virus.

June 4th, my regularly scheduled visit, but Dr. Connelly was out, so I met with Dr Benton, we did extra blood work to check for viruses and lymphoma. and set up a visit for June 10th - the following monday. I was still feeling pretty good at this point, but not as well as I was feeling just 2 weeks ago, so I was concerned. I was having a lot of fatigue, and some problems with nausea and headaches.

June 8th, I went to the ER for a killer headache and vomiting. I had a CT scan to check for stroke or a blood clot in my head along with a spinal tap to check for viruses.

June 10th, the lymph node in my neck had swollen to 4cm by 4 cm, but the one in my groin had disappeared. The CT scan and the Spinal tap both came back negative for viruses. Dr. Connelly was pretty sure, by this time that it was a return of the lymphoma, so she scheduled my for an MRI, as there was a good chance that the lymphoma was in my head, between my skull and brain - hence the headaches. I also got more blood work and hydration, because my kidney levels were up (from all the contrast I had been taking).

June 12th I had the MRI.

June 13th I met with Dr. Meehan at DMHC to come up with a plan to fight the lymphoma. The MRI had come back negative, so this did not seem to be quite so dangerous relapse - that is to say, it was not certain to be fatal. Step one was to start getting me off the immune suppressants as fast as he dared, balancing the need to have the donor cells active in fighting the lymphoma and not getting too bad of a case of donor vs graft disease. Step two was to get a physical biopsy of the largest lymph node to confirm that it is in fact, lymphoma. Step three was to put me back on a large dose of steroids - as soon as we had confirmation that it was lymphoma.

June 14th started having some trouble breathing. Called into the cancer center, and we scheduled an additional CT scan for Wed, June 15. The nurse scheduled with radiation and got me the first available appointment, which was June 26th. You are not supposed to schedule radiation before you have confirmation, but I managed to talk everyone into it.

June 17th, had the biopsy. Went smoothly, and did not wake up during surgery. In the meantime, my breathing had been getting more difficult. I called radiation again, and asked them to move the date up for the consultation if they had any cancellations. I could make any time that they had open. They called back and had an opening on the 19th.

June 18th, had the CT scan.

June 19th, had the frustrating meeting with the doctor that was subbing in for Dr. Connelly, but had a long post meeting with Dr. Connelly's nurse and she gave us some reassurance that things would be expedited.

June 19th, Met with Dr. Godin. She understood the aggressiveness of my relapse, and had talked with Dr. Meehan. She scheduled me for the prep meeting and the first radiation for the next day.

June 20th, Got my first radiation. I am already feeling better from the steroids, and I think that I should see some real improvement by the end of the weekend from the steroid/radiation combo. 

Looking back over what happened, there was a red herring from my nausea and headaches during the second week of June. It turned out to be unrelated, but it meant that there were more things to check for, and we went down the wrong path for a week. Also confusing the issue was the swollen lymph node in my groin which went away. It was also unrelated. Lymph nodes sometime swell for other reasons, and the timing on this one seemed like it ought to be related, but was apparently not.

I think that perhaps I could have been more forceful during my meeting with Dr Benton on the 4th, and tried to advocate for a biopsy of the lymph-node at that time, but we were not convinced back then that it was necessarily a relapse of lymphoma, and the biopsy of a lymph node is not a simple procedure. Perhaps, I should have stopped in on the 7th (which is a Friday) and had Dr. Benton look at it again, because it had grown to about 2cm by 3cm by that time. He might have gone ahead and scheduled a biopsy for the following week, although that was the week that I was going to DHMC and Dr. Meehan could make the call, as he has a lot more experience in it than anyone here. Lymphomas don't grow so fast that a week would make a difference (except that I have a super rare and super aggressive form).

In the final analysis, I am not sure that I could have gotten things moving more quickly, although I think that I should have probably stopped into the office on 6/7 and tried to get a biopsy scheduled. If I could have had the biopsy on the 11th, That might have moved things up by 6 days. Hard to say. They may still have wanted to wait for Dr. Meehan to ok it.

I guess 20 days from first noticing the little nodule to getting full treatment is not that long considering the number of people and departments involved. Especially with two red herrings thrown into the mix. But you really do have to advocate hard for yourself, and when you are worn out, you need to have your designated pinch-advocate step up until their resistance is worn down.

I am in my second week of radiation. It has been pretty rough on me - the fatigue is grinding, but there is less fluid in my lungs, and I think that the lymphoma might be smaller (although they did take a melon-ball chunk out of it for the biopsy, so that definitely shrunk it a little). We will see where everything is at this Friday. The real effects of the radiation are not likely to be seen for a week or so after my last treatment. I will keep you all posted.

Leif

My first tattoo.

Crazy day. Got drunk and got a tattoo. Except without the getting drunk part. I had my first dose of radiation for the lymph nodes, and because of its location, they couldn't just draw on me with a sharpie as they did last time; they are going after a smaller target, with more things in the way, so I have three new tattoos. They are just little black dots, pretty hard to notice. I have lost my place in the ranks of people with un-inked skin, but I don't think that I have yet fallen to autohypergraphia (the compulsion to mark yourself).

The radiation went well. Side effects are expected to look like a sun-burn and itch, which is a little bit rough, since those are one of the key side effects that I am supposed to check for to make sure I am not having an outbreak of donor vs host disease. Yesterday and this morning - before getting any radiation - I have had a bit of itching on my torso, and I can not tell if it is red from the scratching, or whether this is the start of some mild donor vs. host. I can not stop scratching completely, because I scratch in my sleep.

The other side effect that is expected from the radiation is irritation of my esophagus. I may have trouble swallowing crunchy things for a while. These both seem pretty mild as far as side effects go. Especially if this is enough to throw the lymphoma back into remission. Go Donor cells!

I am looking forward to this weekend. We are headed back up to Brooks to stay at the camp. It is so relaxing up there. Another good thing is that I will not be getting my port accessed, and it is getting pretty sore. I think that it has been accessed 10 times in the last 10 days. The skin is getting sore from the adhesive covers for the needle being constantly ripped off it, as well as the skin around the port itself, from being stuck so often. It will be nice to have a two day break from that. Additionally, I am hoping to see some of my friends.

The people at the radiation clinic were really nice, and answered all my questions, both before and after the treatment. It was a good experience. I hope this works as expected.

Leif

Bad Dr, Good Dr.

My primary, local, oncologist is on vacation this week. Sort of a rough time for me for her to be gone, as my lymphoma relapse has been progressing pretty quickly. I did have a meeting with her scheduled today, so it was fielded by another doctor in her office. This is not a doctor with whom I have good repport, and this visit did not go very well either. He did let me know that the biopsy came back showing lymphoma, which everyone has been expecting. The problem was working with him to map out a plan of treatment. I had been told that the earliest I could get in for radiation would not be until July 27th, and that would be for the pre-treatment consultation, which he confirmed. Dr. Meehan had recommended that I go back on a mega-dose of Prednison, which is a steroid; I just finished tapering off of it last week, from my earlier bout of graft vs host disease of the liver. He said that should start having an effect within a few days.

My concern was, what if it doesn't? What is plan B? He said there was no plan B, that I would go on the prednison and then in a couple of weeks, get radiation. I maintained that I wanted to work out a plan B, because my lymphoma was progressing rapidly. Last week I had a little trouble breathing if I was laying down, but this week, it has progressed to the point where I have to put enough pillows under me such that I am at a 30° angle or so, in order to breath. In two weeks, it is conceivable that I will have trouble breathing if I am at a 90° angle. Then what? I will be dead. Before they start the actual radiation.

His solution? Take the prednison and see if it helps. If it doesn't help, we can stick a tube down your throat. I tried to explain that I didn't think that a tube would help, because it is my understanding that I am not having trouble breathing from constriction of the throat, but because the lymphoma is pressing down on the Vagus nerve, which (among other things) controls the diaphragm. He told me "Nothing more can be done." Which is clearly not true. Even if he believes that I am worried for nothing because the prednison will take care of it, there seems like there are better ways to help relieve my stress. As I said, I have poor rapport with this man.

So, after I got out of there, my plan was going to be to call Kate, one of the nurses in Dr. Meehan's office, and I knew that she would make sure that I was taken care of, even if I had to check into the emergency room at DHMC in order to get radiation sooner. I did not call her immediately, however, as I had a 1:30 appointment with Dr. Godwin, the radiologist, and I would know for sure what my radiation schedule would be.

There is the initial consultation, where you meet the doctor, and come up with a plan for your case. This does not even happen at the treatment center, because in Maine, there are a number of scattered treatment centers. Instead, this is at her office. The date that I had for the 27th is for the prep at the treatment center. They can not do the treatment right away, because they have to make sort of a cast of your body to hold you immobile while doing the treatment, and they have to give you a CT scan, and then tattoo your body so that they can line up your body with the area that they are treating. Before your actual treatment, there are quite a few things to check, to make sure that you are getting the smallest amount of radiation that will provide a positive treatment.

So Dr. Godin turned out to be a warm, empathetic person, who understood that while emergency radiation is almost an oxymoron, this was, in fact, an emergency. She also told me that part of my problems breathing is that my most recent CT scan - yesterday - showed that I have fluid in one of my lungs. I am not sure why I was not told that at the oncologist's. She told be to be at the clinic tomorrow morning at 8:00am, and we would do the prep work, and that she would run all the numbers and figure out the specifics of my treatment, and they would do the first treatment at 10:00am that same day. She wants to do my 2nd treatment on Friday. There will be follow-up visits next week as well. (For those of you that care, Doug, my initial two treatments will be around 3-4 grays.)

I literally feel better already. Not a lot better, but being taken seriously, and immediate movement on my treatment has allayed many of my fears. My muscles have relaxed a bit, which helps. Along with the prednison, I should start seeing a lot of improvement by the middle of next week. My regular oncologist will be back next week as well, so I think that will help keep things moving.

Leif

Results from MRI

Spent the day in the hospital today trying to look for a blood clot which may or may not be in my lungs. I have had some shortness of breath, and while it is probably NOT a blood clot, that is the first thing to rule out. I was supposed to have a CT scan with contrast, but because I had contrast yesterday for the MRI, the preliminary blood work showed that my kidneys are already working too hard.

The CT scan was canceled, and instead I got a shot to help protect my kidneys. Tomorrow, I am going in for a different type of scan. Amazingly, it is not one that I have had before. It is a scintigraphy scan, or affectionately, the gamma camera. It will also be checking on the slightly swollen lymph nodes that showed up on my PET scan that I had about 2 months ago.

Good news, the MRI came back negative. I do not appear to have lymphoma in the blood vessels around the brain. I try not to stress out about these sorts of things, but that is still a relief. It is not usually something that one gets better from. We still don't know what is going on with the swollen lymph node on my right superclavical area, or the less swollen one on the other side. Those are still concerns, but I have a reasonable chance even if they are signs of relapse. Not good chances, mind you, but I haven't had good chances yet, so I will take what I can. :)

Tomorrow, after the scintigraphy scan, we will be headed for my checkup at DHMC. We drive out on Wednesday and my appointments are Thursday morning. I am packing with the possibility that they may keep me for a while. It is likely that they are going to want to take a biopsy of the lymph node once they see it. It is not just a little needle draw either -  apparently they slice off a chunk. On the up side, I will get to see all the great night nurses that I have not seen since I was discharged in February.

Leif

Trepidation 6/10 checkup

I also have a checkup at DHMC this week, but this was a follow-up on a two-part problem. I have an enlarged lymph node on my neck, as it comes into my right shoulder. I also have been having some problem with headaches and nausea. The nausea has not been too severe, but it will suddenly rise quickly, and I have projectile vomiting. So far, once I vomit, both the nausea and the headache ease off considerably, which is better than it could be. I had a checkup last week, and since then the lymph node has grown considerably.

I had an MRI today, and they are running a test on a spinal tap to check to see if this means a return of the lymphoma. There is the possibility that the lymphoma has taken up in the layer of blood vessels between my skull and my brain. My symptoms do not bode well, but we will see what the test show.  The other likely candidate - an infection - has pretty much been ruled out by the fact that I have no fever, and an earlier spinal tap showed no evidence. The headaches and nausea might be explained by my medications, but that does not account for the enlarged lymph node. It is growing faster than one would expect for a relapse, but then, I have a crazy, aggressive form of lymphoma. I am fairly concerned.

On a good note, I got up to Belfast this weekend, and while I had quite a bit of fatigue, I managed to get together with some friends for a game of cards, and later went to John's house to watch "The Hobbit" with a couple of friends. John pulled out all the stops, making a fantastic popcorn from his home grown corn, a excellent meal, and Skye provided some John's ice cream (different John). Luckily, I was mostly able to partake, although I could not have any of the beer. As John is quite the connoisseur  this was more of a hardship than it would otherwise have been. It was a great evening, and a wonderful weekend. So good to see some of my friends.

Leif