This is a personal post more than a health update, but its hard to separate the two, and the health update comes first.

Viruses keep coming, some scary, some painful, some been there before done that. I have weathered these viruses again and again. I will continue to fight them with all of my strength. To cap off the latest two, I have for the past 6 years had viral polyps on and around my vocal cords. Every two years I go in and have CO2 lazar surgery to remove them, because they are slow growing. Not anymore, because I have no immune system. On July 5th I had a tiny one on my vocal cord, but I could talk like a normal person again. Let me tell how wonderful that was. It had been 6 years since I could actually sing. I love singing along to my music and dancing around with my kids. It was joyous. Today, I can barely talk, but right now is not time to go in and surgically remove them. Its a watch and wait situation, which seems like the going plan these days in my medical treatment.

Almost two weeks ago I also developed Shingles. Its painful. For me it was at first like I pulled a muscle in my back and each day it grew down the rib to the front of my chest (yes, only one… I think I am lucky that way from what I have read). Because I have been on “prophylactic” anti-viral meds from the day of my transplant, I seem to have missed out on the pox part of the Shingles experience. Now I am taking heavy duty anti-viral drugs once again to knock down this virus.

I say knock down, that is an important distinction between viruses and bacteria. Viruses go dormant, you never really get rid of them, or it is rare. Bacteria you can kill with antibiotics. I have been fortunate so far. Even though I have had 5 viral infections in the past 3 months without a break, we have caught them early, treated them accordingly and I have fought them off. This is something to be thankful for. In the first year following a transplant the #1 killer of transplant patients is infections, followed closely by GVHD.

These viral infections do affect me. I am weak physically, and mentally they are taking a toll too, which does not help. Anyway, as I said before, after each one I have to start all over again, like I was after I got out of the hospital way back in May. While my donor cells are finding a balance with my body, all the extra work my body is doing is not helping me grow new blood cells (that is a hypothesis). One of my questions for next Monday when we go to St. Louis and see my Doc. My blood counts have slowly improved and I am now stable and out of the danger zone. Platelets are bouncing around the mid 50s, Hemoglobin is around 11, and white cell count is “normal”. But remember that the normal is counteracted by the immunosuppressing drugs I am on.

That is the Health news. On Monday since we will be in St. Louis, yesterday was my last day at work. I was terminated from my job for health reasons, because I had to go on Long Term Disability (which is misnomer, because whenever you get well enough to work they cut you off). Side note: What does that really mean? Well? As soon as I am just Well enough to work, I have to go back to work, with no transition, no job waiting for me. They just cut you financially off. Two things that piss me off, one is financial and one is health.

I just spent 6 months without a paycheck and we are broke. We depleted all of our savings and the wonderful donations that you all have given us. To be financially cut off again is more than a hardship on my family. Unless I get a job immediately we will be financially screwed. Oh well, family and health are really more important anyway.

But its the health issue that I am really concerned about. Just being well enough to go back to work is not the same as being WELL. No longer will I, or any cancer patient, be able to fully devote time to healing their body. For me healing my body is not a passive ordeal. People who approach healing and becoming well from a stem cell transplant passively, die. That path is not for me. I have been and will continue to actively enhance and do everything in my power to heal my body. But just at that point when I will be almost Well, they yank the rug from under my (our) feet, so we never FULLY heal, since most of us will be “forced” back to work, without fully healing.

This makes no sense to me. To spend all that money to get us almost there and then place you back in a stressful situation once again, which ultimately will cause your body to become unwell and you relapse. If you look at the statistics and look at what happens to transplant patients, then the number one killer after two years is relapse. Which means the cancer comes back and kills you. Many transplant patients go through a second one, but the odds of survival are really, really low. And I’m not doing this again.

I will have to balance what is best for my survival against what is best for my family’s well being. Losing everything financially, is not beneficial to my family. At the same time, losing me for the family is just as detrimental. Its a true Catch 22. Damned if you do, damned if you don’t. The hospitals and doctors don’t think beyond their areas. This is a societal issue and policy issue that the medical field is mostly blind to. They don’t look at the big picture, they refuse to look holistically at healthcare. They only think about their specialties and saving money (which by the way they don’t).

Do you realize once you are released from any cancer related treatment plan, you are left alone, with the only support coming from small groups of people who share their stories and what they do to help themselves. The medical establishment does nothing to help you to heal (aside from giving you pills) to fully heal and recover. That is my experience, I am very sure it is 99% accurate for 99% of cancer patients. One reason is that insurance companies won’t pay for anything. The other is once again, doctor’s don’t think holistically, at least not for cancer patients. Oddly, if you tear your ACL you go into physical therapy until you are good as new (now that is an assumption based on football, but those guys earn millions of dollars each year and college kids if they show promise in the future).

Cancer rates keep rising. The medical establishment publish all of these cures that they have done to save people in the last 20 years. Yes, we have great medical specialists who can save us temporarily, and that is it. Americans pay more than any other country in the world with all of these specialist, but our cancer rates still climb. Part of that problem is only addressing the symptoms and temporary cures, instead of preventative measures. “A penny saved is a penny earned” is a fallacy. If you pay a little to correct small problems early on, then you don’t have to pay for expensive problems in a year or two, or even if it is five to ten years down the road. What does it matter?! You are still paying for it… yes YOU.

But thinking holistically means the medical specialists, insurance and pharmaceutical companies would not reap the profits they get. Because the patient is either actually cured before something expensive and drastic has to occur, or they learn to manage it so it becomes stable. Yes, sometimes we do need medical specialists and medicines to make us well.

But we need balance.

Thinking holistically also means we do not just forget about cancer patients once they leave the office. The medical establishment needs to help people come up with plans of action, rehabilitation centers, or whatever is called for so that cancer patients actually heal, recover and are truly cured.

As a stem cell transplant patient, they only look at my five year survival rate, which for me is about 25 – 35%. I would predict that those percentages would be a lot higher if they looked at medical treatment holistically. I have the knowledge and tools to heal myself, most cancer patients don’t. I know I will survive, because I will actively do what it takes to make sure that happens, most cancer patients don’t. Give us time to really heal, without the fear of losing everything you have worked for your whole life to become a middle class citizen and be able to retire.

I want to go back to work! I loved what I did. I can still be a productive citizen for another 20 years. But I have to heal first. Otherwise, in two or three years it will be all for nothing. The cancer will come back, or GVHD will make me ill again so that I cannot work. What we are doing as a society medically makes no sense.

We the people have the power to choose a course of action. We can tell the medical and insurance companies how we want to be medically treated. Don’t say it should be their choice, we as a society and government do it all the time to plenty of jobs. We should not go blindly into this, but examine the countries with the best health care systems. Ours isn’t (read any report and we are at the bottom, yet we pay the most – almost twice as much). Use the best models to create a medical system that will work for our culture. Ours doesn’t work.

Lastly, this is a political note: look into payoffs from the big medical companies to politicians and throw them in jail. What they are doing, taking money for votes is against the law. And a special note to the Republican party (i.e., politicians), stop using scare tactics to make people afraid of change. Be part of the solution, not a roadblock to positive lasting change. If you don’t like what has been proposed come up with a real solution, not just business as usual. Because it doesn’t work. There are plenty of time periods and Presidents that embraced change. Why don’t you give it a try?! And remember, payoffs are illegal, and those that take them should go to jail.

End of soapbox.

~ Mark

 

 

Well it looks good… I went on Monday to St. Louis and got my final results of the BM biopsy. I’m cautiously optimistic about the results, but they are positive. I am 100% donor and the FISH test “found” my cells to be “normal”, however they did observe four chromosome 7 signals. I have no idea what that means. For normal people that is within normally accepted parameters. For me… I have no idea. It’s like an ice berg, you can see the tip of it, but most of it is underwater. But that is a problem we can face in a year or two. Right now staying healthy with no infections is what I need to do now. I need to build up my strength, and let my donor cells multiply so that they are all in the normal range. That takes up to a year, and just as important… I need to heal.

We have been very positive through our blog posts, and our lives in general. It is the best way to survive this journey. That is where a reality check is needed for me and you. A bone marrow transplant is not like cancer. Yes, I received chemo, but at much higher levels than 99% of all cancer patients. Not only did it kill all my blood making cells, it also did a lot of damage to the organs in my body. On top of that, due to GVHD and four infections back to back, my blood counts dropped to the point where they were ready to give me transfusions and stick me back in the hospital. My counts are now going up, which we all want to celebrate. But they were as low as you can go. And I have a long way to go to reach “normal” levels, and that is going to take a year, maybe two. I certainly did not think it would take that long, so I need to focus on my health and heal.

I have now not been ill for three weeks and that feels so good. My GVHD seams to be under control and stable. Two very important things to be happy about! Infection is the leading cause of mortality in the first year, closely followed by GVHD (Relapse takes 2 – 5 years to show up). I had both and survived them. Mostly, I think, from a positive attitude and all the support and love from all of you. So thank you once again!!! I know there will be good days and bad days, with rocks in the stream to navigate around. I’m just gonna continue to go with the flow, look for and add ways to improve my health, and let my body heal.

~ Mark

 

P.S. Yep, it looks like this journey may go on a little longer than we expected. Well, this part of it anyway. The whole journey of our lives can go on as long as it wants! This is just a piece of it. And although this darn recovery thing seems to be dragging its feet, its feet seem to be going in the right direction. And I will take any steps as long as they are in the right direction. We are celebrating the small victories because they are victories. 100% donor, Good results from the FISH test, blood counts slowly rising. Yay! I don’t have a lot to add. We just keep plodding along, grateful for every sunrise, for our family, and for all of you! Aloha¬†Hoalohas <3 <3 Terri

juno-beach-pier-sunrise-jellyfish-on-beach-with-shells

Well we are still waiting for the final results of my BM biopsy, which is why we waited until now to write anything up. One good bit from one of the tests is that I am 100% donor! But its the FISH test that really matters. And this I don’t really understand. If I am 100% donor (mind you that is just a random sample from say a million cells they take from me and they only analyze 200 of those cells again chosen at random, I assume), then why is the FISH test saying they detected my MDS chromosome 7 abnormality (that was from the last BM biopsy, not this one)? Some answers to questions I need to find out. Chromosome 7 is a deadly bitch of a mutation. And in 80% of transplant patients it leads to a relapse within 5 years. So we have another week to wait. I have a new complication, but its a watch and wait treatment plan. Otherwise, things are status quo.

beach-footsteps-copy-copyThis is why they are being more aggressive with reducing my immunosuppressant meds so the donor cells can kill it off. At the same time my GVHD, which has been mighty quiet as of late, will come back and has. GVHD is a blessing and a curse. You want a little bit of it, because it means that the donor cells are killing off your old blood cells and some other organs cells. The curse part is getting too much of it. Because it does kill off some of your other organ cells. Depending on the person and how they treat their body (and genetics), your organs are healthy or not depending on how you eat, drink, etc.

I’m getting back into a routine to heal and recover. Gonna try to stay away from viruses or other evil things that we call germs. I need that. I really need that.

And from here it gets a bit personal.

To quote Jimmy Buffet, “I treat my body like a temple, you treat yours like a tent”. I did both throughout my life. The last 7 years, except for an occasional drink or five, my body was a temple. Certainly an old temple that needed some loving. After all, from 14 to 40 it was mostly a tent, or at least a rental apartment. So can 7 years of refurbishing make up for 26 years of drinking, the other stuff I quit by age 20. I don’t know. Thank Dog I was a teacher for most of that time… you don’t go to into a classroom hung over. Did it once and never again. So I guess that made me a weekend warrior! Anyway, too much information for those who don’t know me, but there are lessons to learn from what other people do.

Discovering I had MDS made me realize what was important in life, what I valued. It certainly changed how I lived and the relationships I have for the better. Yes, there always was a cloud hanging over my shoulder ready to strike with lightning. And it did. I took a very stressful job, but one I truly loved. I got to lead a dream team of people in creating some really great courses. I was stable for almost six years and stress is a mean SOB. I got complacent with what was really important… my family. And I paid the price. Treating your body like a temple does work. It won’t cure you. But it will slow down or stop the progression of a disease. Stress takes all the good you do and destroys it. That is how I see it and how I will live my life in the future. Low or no stress. My goal is to live long enough to see Caitie and Kai become adults, to be able to guide them in that journey. After that… is extra time to spend with Terri and family (my friends are included in my concept of family).

Now a bit of sad news. My Mom was diagnosed with ALL, a type of¬†leukemia. Last word is that she is not willing to go through chemo, its not as bad as I went through, but then I’m not 73 years old. I’d like to see her live several more years, but its not my decision. I hate that we do not have a cure for this or all cancers. You know how I feel about it, if not read my cancer treatments post. Her name is Linda, so if you have an extra prayer, positive vibe, or some pixie dust, throw them her way. One group is actually trying to do something about this, Stand up to Cancer, check them out.stand-up-to-cancer

~ Mark

(from terri:)

Aloha!

Honesty time – this part of the journey sucks. One reason that Mark’s doctor held off on the transplant was quality of life before and after treatment, implying that quality of life post-treatment would not be so hot. Now I understand. We knew the road to recovery would be a long one. It is another to live through it. Yep, I am on this road with Mark, experiencing the good, the bad, and the ugly. The only thing I have freedom from is the pain and discomfort Mark feels. Honestly, he feels crappy. I guess, that although I knew the recovery was going to be long and slow, I expected steady improvement, a little better each day. And sure an illness or two, but not how bad it would knock Mark back on his ass. So this is tough to watch. Yes, he is getting better, but it is baby steps. Don’t get me wrong, it is better than no improvement at all. I am just saying basically that this is hard. I wish someone would have just said before we went through the transplant, that recovery is going to be a bitch and we can’t really tell you what to expect. But expect complications and having to deal with those. It wouldn’t have changed anything, we still would have gone through with the transplant, but maybe would have been better prepared for what comes after. I guess it is like having kids. Until you have them, you have no idea, no matter what anyone says, what life is going to be like, until you go through it yourself. I don’t know if any of that makes sense.

But!… I still know that this is all worth it and in the end life will not be so hard and Mark will be back to his old self… maybe with some small adjustments.

Hearing that he is 100% donor was a great relief, and I am hoping for good news on the FISH test as well. His blood counts, especially platelets, are starting to creep upwards. Baby steps, but up is good. In addition, they have decided that he is going to get the IV-IG treatment once a month for 6 months. That was the one that is super expensive and insurance didn’t want to cover. Doctors are hoping that will give him a little boost, and help keep any infections at bay.

In other words: There is fog in the mornings (like June gloom on the coast) but the sun breaks through and you can feel the warmth on your face and know that things are going to be good. And somedays, oh mah gosh: Look a rainbow! Still knocking on wood and hoarding pixie dust…