2005 December | Living with MCL

Reflections on the Year 2005

Dec 292005

With 2005 nearly at an end, it’s time to reflect on some of the more important occurrences, in my life that is, during the past year. After all, as Becky says, “it’s all about me”. Everything else just pales in comparison.

Overall, it was a decent year, although the last 3 months were nothing to write home about, but I’ll still try to inform you of all the major happenings. First, I am still alive and haven’t needed any treatment. I’m feeling reasonably well, with no major health problems, and I am still able to ride my bike pretty competitively, although my most recent bike accident has left me in some sorry shape.

The one significant thing that happened this year was bringing my 85 year old aunt from Florida, to live with Edie and myself this past April. We have room, but it is still difficult. I can tell you that it is true, the older you get, the more you revert to being a child. She is not in the best health, but is managing with lots of doctors appointments. Thank goodness for medicare and supplemental insurance.

We also finished remodeling the backyard, adding a (all brick) deck with built in barbecue. It’s perfect for lots of wine parties. It took about 2 months, Becky’s husband did it all by himself – he is very handy, and it was well worth the time and expense. I posted some pictures to my website, if anyone’s interested. Keep in mind we live in Long Beach, so the backyard isn’t hugh, but it is decent size, 60′ x 30′.

Also took a great trip to Lake Okanagan, in BC, Canada. It’s Canadian wine country, and is blessed with an abundance of great golf courses. So you can go play golf in the AM, and then go wine tasting in the afternoon. And the wine isn’t half bad. Not half good either, but definitely worth visiting. The best thing that I discovered about Lake Okanagan, besides the great golf, is everybody speaks Canadian. It isn’t too difficult to learn, but does take some getting used to. I loved it.

Well those were the high points (even my aunt, if you can believe that). Now for low points.

I had two bike crashes this year, one by myself, in June, when my front tire blew while going around a bend. Fortunately I wasn’t going very fast, and only received some minor road rash. I did manage to fix the tire, and finish the ride. Ended up staying off the bike for about a week.

The real problems all started in October, after a wine tasting trip to the Edna Valley in California’s central coast. After that visit I came down with the flu (or a bad cold – I didn’t get a flu shot) which really set me back a lot. I still managed to ride, and play some golf, but still it wasn’t pleasant. Then the bike crash on November 6th. That was a doozy.

Not only don’t I remember the accident at all, I don’t remember riding the 1/2 mile to the gas station at the corner afterwards, nor do I remember calling my wife, even after asking my friend how to do that. I vaguely remember some of the trip to the hospital, and some of the time in the x-ray and CT scan departments at the hospital. The first time I remember anything clearly was when I saw the doctor staring at my ankle (about 4 hours after the accident), and which eventually required 7 stitches. My wife even told me when we got to the emergency room, I got out of the wheel chair and lied down on the floor, so the emergency room personnel were anxious to get me into a bed. Maybe a good thing, because I must have been a sight.

Finally, after about 7 hours, armed with NSAIDS, antibiotics and some Vicodin, I was sent home. Not being one who likes taking any medication at all, I did decide to take the antibiotic (it would have been stupid not to take that), but I also decided to take a Vicodin, thinking my foot would really hurt after the anesthetic wore off where the doctor stitched up my ankle. I then went to bed.

About 3 AM is when all the excitement started. I had to go to the bathroom, which happens a lot at my age, but I couldn’t. The room strated spinning so fast, I thought I must have been tied to a helicopter blade. It was absolutely the worst feeling in my life. The only thing I could do was piss into a water bottle, which if you’ve ever tried that, you’ll know isn’t quite that easy. I can only imagine what a woman would do under the same circumstances. I don’t know if it was the Vicodin that caused the problem, since I read that dizziness can start sometime after a concussion, I decided not to take any more Vicodin. And as it turned out, my foot never hurt enough to require it.

That condition lasted about 2 days, when I finally got smart, and took a Dramamine. After about 2 hours, that kicked in, and I was able to at least function, not perfectly, but at least I could function.

So to make a long story short, which may not be possible at this point, I am mostly heeled now, my dizziness finally subsided about a week ago, and I don’t feel to bad, except that my shoulder is still hurting, as the result of a chipped bone (which I discussed in my last post), and I am unable to play any golf because of it. I have an appointment scheduled with the orthopedist on January 18, at which time, if the shoulder isn’t any better, I will have them remove the chip.

Then the last an final straw came last Tuesday, when Edie and I both got sick at essentially the same time. Apparently we got some 24 hr flu, which lasted about 48 hours, and were both hugging the procelin bowl for a short period of time early in the morning. Edie managed to still go to work that day, but did have to take off the following day. As for me I tried to go for a bike ride. Got about 2 miles down the road, and realized that wasn’t going to happen. I turned around, came home and slept all day, and half of Wednesday.

It’s Thursday now, and I am feeling pretty good, even went for a 35 mile bike ride this AM with some friends.

So those are my reflections on the year 2005. Notice how nothing else seems to concern me too much any more except for my health, not the war in Iraq, the deficit, illegal immigration. Well that’s not exactly true. They do concern me, I just choose not to dwell on it on this blog. Remember what Becky had to say, “it’s all about me.”

Besides, I’m also publishing another blog dedicated to spreading the word about flaws in current US health care policy, and the need for a single payer health care system in the US. You may have noticed one of the numerous links to the site on one of my previous posts. If not, please check it out. Contributions in the form of articles or posts for the site would be greatly appreciated. You can post directly, simply by registering for the site, and navigating to “Write”. Money won’t be turned down either.

Here’s looking for a great 2006, and an even better 2007. I’ll be back next year.

Just Some Random Thoughts and a New Year’s Resolution

Life 2 Responses »

Dec 252005

Well, here it is Christmas day, and about a week since my last post. I’ve pretty much recovered from my bike accident, except for my shoulder (I’ll get to that in a minute), and I’m back riding as much as before. Unfortunately, I’m not riding as well as I was before. I’ve learned that at my age it will take a lot longer to regain my previous fitness level. I was off for about about a month, so hopefully in 4 months I can regain most of strength and endurance.

I’m still unable to golf because of my shoulder, and that is very disheartening. I was actually getting pretty good before the accident. But at least I know why the shoulder is hurting. The orthopedist PA finally called last week with the results of my MRI, and said I likely broke my shoulder. There was a lot of imflamation, and it looked like a piece of bone was floating around in the shoulder area. Great! I thought. NOT!

I mention it here, because of what he said about getting it treated. It can be treated, i.e. go in and remove the bone chip, but he stated that “we normally wouldn’t go in and operate on someone at my age. If I were 20 or 30 then they would consider it more readily because of possible implications of not getting it fixed. Like 57 year olds can’t have the same implications? He said they recommend waiting and watching (sound familiar?). It will usually clear up, but could take a year or more! A YEAR OR MORE!!!

I was shocked! I can’t wait a year. As far as me being active, I am likely more active and in better shape then 80% of 20 or 30 year olds. While for the most part the shoulder doesn’t bother me terribly, it is somewhat limiting. I have trouble taking off a shirt, sleeping on my left side , and of course I can’t play golf.

We went on to discuss this some more, and I finally settled on waiting another month to see if the shoulder improves. I scheduled an appointment for January 18, 2006, I really don’t want to get it operated on, but his comments about my age, just pissed me off. So now I may demand they remove the bone chip just for spite.

So for now I wait, trying to do some range of motion exercises. and hoping it’s get better enough that I can play some golf during the next two weeks. The company I work for shuts down for 2-3 week this time of year.

2006 New Years resolution.

With the remote possibility that someone out there might actually reading my blog, I thought I would ask if you had decided on a New Years resolution yet? I have decided on mine. I’m hoping that by putting it in writing, I might actually follow thru with it. One can only hope!

Before I get to my resolution, I believe it is necessary to provide a little history.

Since my accident I have gained about 10 pounds. One of the reasons I exercise so much is I love my food and wine, and that didn’t stop after the accident. It actually did for about two days after the accident, but I quickly made up for it.

To elaborate a little more (after all this is my blog), shortly after my diagnosis I went on a pretty strict diet, and a much more intensive exercise routine, hoping to starve and exercise my MCL to death. Well obviously that hasn’t worked, but I think it did moderate the spread of the disease. I managed to lose 37 pounds, going from about 182 lbs (83 kg) to 145 lbs (66 kg). At that weight I felt really good, and my riding was great, especially when climbing hills.

My wife and I then took a trip to France to visit with a hematologist there, who offered to test for p27KIP1, a prognostic marker I mentioned in Chapter 6.

France was great, but the food was even better. I gained about 8 pounds while in France. I tried losing those 8 pounds, but I picked up too many bad habits in France, cheese and wine especially, and couldn’t get back to what I felt was my optimum weight. Fortunately I maintained that weight up until my most recent bike accident. So overall I have gained about 17 lbs, since I embarked on my plan of starving and exercising my MCL to death.

So for my 2006 New Years resolution, I vow to lose that 17 lbs. My lymphocyte counts are climbing a little faster then I would like. They are still climbing relatively slowly, but they still are climbing. I may not go back completely to eating what I was eating, when I started the routine after initial diagnosis, but I will exercise more intently, and definitely eat less.

I’ll keep everyone posted as to my progress, whether you want to hear it or not.

My advice to everyone else is, enjoy the rest of the holiday season, and tell me about your New Years resolution.

3 Years Since Diagnosis

Life, My MCL No Responses »

Dec 202005

Well as of today, it’s been 3 years since my diagnosis was confirmed and 3 years and 9 months since that fateful blood test. But so far I’m no worse for wear, that is if you don’t consider the 3 bicycle (10 spd bicycle) accidents, with only the last one being serious.

It’s been six weeks since that accident, and I think I may be on the road to recovery. I’ve been back on the bike for over a week, and I think the dizziness, from the concussion, has finally ended (knock on wood). My ankle still hurts a little, due to the scab that is still in tact, where I had 7 stitches removed about a month ago. I hope it’s not taking longer then normal because of my MCL. That is minor compared to the amount of work I need to get back into the shape I was in before the accident. it seems the older you get the harder it is to get back your previous conditioning.

My shoulder is still a little stiff and sore also , which has really put a crimp in my golf game, but I plan to at least get back to the range tomorrow to to test my swing and hopefully shake off some of the stiffness and soreness.

But other then that, I can’t complain. I am in much better shape then most people with the same or similar problems. I am lucky, I have a loving wife to watch out for me, lots of good friends, a great job with a supportive boss and co-workers, and I have health insurance which is more then 46 million other Americans can’t say.

Lessons Learned

Diagnosis, My MCL 2 Responses »

Dec 092005

During all this time researching, talking to doctors, to others with lymphoma or other cancers, to my friends and to anyone else I may have come in contact with, I have learned so many important things. It has really changed the way I look at life, and has most certainly rearranged my priorities in life.

I still do have my ups and downs, but I try not to dwell on things as much as before. Lots of people get sick. The fact that I got sick, while it certainly wasn’t something I planned for, is a fact of life. To think that I or anyone shouldn’t, wouldn’t or couldn’t get sick is really an egotistical attitude. Now I just try to look at life as something to cherish and to enjoy. I think the tagline that I use at the end of emails says it best – “The future is just a concept we use to avoid living today”.

But besides dealing with life, I have learned a great many more things that are vital to anyone fighting cancer or any other disease.

The first thing, and the one thing above all, that I learned at my first Lymphoma Research Foundation conference, is – “NOBODY CARES MORE ABOUT YOU THEN YOU DO!”. That includes your wife, your parents, your brothers and sisters. If you don’t advocate for yourself, no one else will ever do as good a job. If you have cancer, or any disease for that matter, don’t ever lose sight of that fact.

The second thing I learned is our commodity driven health care system sucks. But that doesn’t mean you can’t or won’t get the care and treatment you need. You just need to be sure you are a good advocate for yourself, or have someone you can trust be your advocate if you are unable. (Keeping in mind what I said previously – “NOBODY CARES MORE ABOUT YOU THEN YOU DO!” )

Stay totally informed. All doctors are not created equal. There are good and caring doctors, and there are just the opposite. Not all doctors are driven by the profit motive, but if you don’t stay informed and advocate forcefully for yourself, you likely won’t get the desired care or treatment. Remember, you are not your doctors only patient. He likely has many patients, all needing care. Doctors are not gods. They are only human, and many times can get overwhelmed. Just be sure to stay on top of everything. Read the literature, know what the latest advances are (the internet is a wonderful tool), and ask your doctor about them. If he is not aware of them, and he is good and caring physician, he will appreciate the fact you have kept him informed. And if he isn’t, get a new doctor.

As far as my particular lymphoma is concerned, based on at two specific tests I had during my vacations to France and the UK, p27KIP1 and VH Gene mutation, plus some additional routine markers I have concluded that my variants of MCL is on an indolent course. And so it has responded as such for the past 3 years and 8+ months.

That doesn’t mean it will continue on that course. I continue to have my blood checked every 3 weeks (ok, a little overkill maybe, but…), looking for any changes which might warrant a change in my present “wait and watch” plan. I definitely don’t want to wait till I start feeling sick to begin a treatment plan. At that point the treatment might not be as easy to endure, and may not be as effective. But neither do I want to start treatment too soon, and screw with the good quality of life I have right now.

I also try to eat right, cutting out as much sugar as possible (although lately that has proven to be very difficult), and I continue to exercise very intensely. Anecdotal evidence suggests the benefits of this approach out weight the risks.

Remember, this is my blog. It is what I have chosen, based on my outlook on life. It may not be the best course for others. There really hasn’t been substantial research on the subject. My instincts tell me it is the correct plan of actions, and I believe my instincts have served me well over the years. But everyone is different and has different attitudes on life. So everyone really has to make their own decisions.

Indolent or Aggressive?

Diagnosis No Responses »

Dec 072005

Now I really had my work cut out for me. While there didn’t seem to be the need to make a decision immediately, there still was concern. Is it best to treat while you’re still feeling relatively healthy, and likely, better able to handle the intensive treatment, or is it better to wait until symptoms appear?

What I discovered was, there is no simple answer. At least not one that everyone aggrees upon. Every doctor has his or her own idea as to what is the best course of action. Some doctors will tell you to wait and watch, others will want to try the less harmful monoclonal antibodies (sometimes combined with chemotherapy, and sometimes not), others will simply want to try high dose chemotherapy alone, and then others will want to go the transplant route.

What I discovered after reading many reports and talking, via email and in person, with doctors and researchers I believed to be the most knowledgeable on the subject, I discovered one common concensus ‘aggressive disease – treat immediately, indolent disease – do nothing’ (AKA wait and watch).

So now the next question becomes, how do you know if your leukemia or lymphoma is indolent or aggressive?

The answer – testing! Lots of testing. But that brings up even more questions. What tests? As it turns out there isn’t one, or two or more standardized tests. Not all tests provide information pertinent to all leukemias and lymphomas, and the results, many times, can be interpreted differently for each lymphoma or leukemia designation?

This is where the US lags behind other nations in the world, including Canada, the UK, and even France. Because of our flawed health care system, these tests can be very expensive to run and many times require specialized knowledge to interpret. Since our health care system treats health care as a commodity rather then a social service, doctors (but not all) have a tendency to look at the bottom line rather then the patients well being. See my health care blog for more informatin on this subject.

So the result is either doctors don’t know about such tests, because there isn’t an incentive for them to research the information, or they simply won’t prescribe them due to cost factors.

So what is patient to do? There isn’t much a patient can do, except to do the research themselves and educate their doctors on the subject, and convince them of the necessity for the tests (remember I did say not all doctors always look to the bottom line), or pay lots of money to have those tests run, either in this country or travel overseas to have them performed.

I chose to make two trips to Europe, one to France and one to the UK. In general I have found doctors overseas are more knowledgeable, and forth coming with information then doctors in the US. While the trip to Europe were costly, those doctors charged very little or nothing to perform the tests.

My wife and I also combined the trips to take much needed vacations to two countries we had never been to before. The money spent was well worth it, in more ways then one.

My Treatment Choice

Treatments No Responses »

Dec 052005

So here I was, faced with a dilemma. I was feeling fine, but diagnosed with what typically is considered a very aggressive form of lymphoma. My first reaction, was to go for the aggressive approach, i.e. chemotherapy, total body irradiation (TBI) and periferal blood stem cell transplant (PBSCT). My oncologist was equally aggreeable to this decision, and sent me off to the transplant specialists at Kaiser, who work in conjunction with doctors at City of Hope, for a consultation.

While there, I was given a slew of blood tests for HLA typing. That is essentially an analysis of the blood, performed in order to find a compatible transplant donor. As it turned out that was the pleasant part of the visit. I then met with a transplant specialist who proceeded to inform me of all the potential hazards of my selected treatment plan.

She went on to inform me of the known effects of chemotherapy, and the increase risks of contracting other cancers as a result of the total body irradiation. But the really disturbing part was the high mortality rate associated with a transplant.

In the case of an autologous transplant (your own cells are cleansed of all disease, and reinfused into your body) the initial treatment, high dose chemotherapy plus TBI, is designed to destroy your entire immune system to make way for the cleansed cells. This leaves you open to a whole slew of complications, which I won’t even go into, but does require you to maintain a good sterile environment, for anywhere from several days to months, depending how long it takes for the cleansed cells to rebuild the immune system. Since you are infusing your own cells, the mortality risk is low, but the potential for relapse is almost a certainty.

In the case of an allogeneic transplant, your entire immune system is stilled destroyed, as with the autologous transplant, but instead of reinfusing your own cells, you get the cells of a matched donor, who never had any hint of disease. Obviously this procedure makes a lot more sense, if you hope to be cured, but in addition to the complications of a destroyed immune system, this procedure also leaves you open to what is affectionately referred to as Graft vs Host Disease (GVHD). Depending on how perfect the match is this could range from very mild to accute, and could result in the need for anti rejection drugs for the rest of your life or even worse.

A new and less destructive procedure called a nonmyleoablative (mini-allogeneic) transplant, does not require the same high dose chemotherapy or TBI, but still leaves one open for GVHD. In my opinion, this procedure does offer the best chance for a cure, but the risk of GVHD suggests that even this procedure should be the treatment of last resort.

It was at that point that I decided that more research needed to be done. Were there other, more or equally, effective treatments out there, which I was not being informed of, or my doctors were unaware of. I was still feeling fine, and did not feel the compulsion to rush into anything which carried such high risk.

So for the moment I was in the do nothing mode, sometimes referred to as “Wait and Watch” or more appropriately “Watch and Worry”!

Older Entries