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

 

 

3 Comments

  1. Right on bro! I hear ya singing those virus blues loud and clear! and then add vinegar to the mix we the USA who have boosted superiority all these many years since our heroics in wwII and oil riddled native american lands… smiles have the worst medical system and care for our citizens it is shameful! Surely we could pattern our care for the people, our most precious resource after a successful country that offers quality national care for all like Australia or cCanada. This fairy knows the poverty path well but also knows there is a new paved road to travel in time if we choose the correct one. Enjoyed your soapbox rantings immensely clapping my hands and nodding my head with shouts of ‘You tell ’em!! Pixie dust warmth, Sun hugggggggggsssss

    • Thank you Sunbeam! I know we are not alone. Most Americans want good affordable healthcare, which should include a balanced and holistic approach to healthcare. Healthcare is life long, medicine is temporary. 🙂

      ~ Mark

  2. I’m so sorry you’re fighting off two more viruses, Mark. Hopefully you got some quality rest over the weekend and your visit to STL goes well today! I’m still praying for you daily.

    You have every right to be fired up about the clusterf*@! situation that is healthcare in America today. Once you are well again–truly well, not Just Well Enough–maybe you should consider becoming a patient advocate, trying to help reform the approach to cancer treatment practices. Use this horrible experience you’ve had to help make a difference for others who will have to go through it in the future, you know? I agree completely that our medical establishment fails to treat PEOPLE and instead just treats SYMPTOMS. We aren’t cultures on a petri dish in a sterile lab. We don’t live in vacuums. Our diets, our environments, and even our spiritual and emotional outlooks affect our health in addition to physiological factors, genetics, bacteria, viruses, mutations, etc. There are a few branches of modern medicine that are starting to take the Whole Person approach to wellness, but not many, and it’s VERY slow going. Big pharma is the largest roadblock to progress, because they’re so involved in the training and conditioning of our medical specialists. (As an example of this from my own experience, consider breastfeeding… When many new mothers encounter issues with breastfeeding and they go to their doctors with questions, their doctors encourage them to switch to formula instead, because it’s what they know and are comfortable with; they are not required to be formally educated about breastfeeding and only receive that training if they personally seek it out, but they ARE trained in the ins and outs of formula types and feeding practices by pharmaceutical companies.)

    As with most types of change, it will likely take a multitude of voices insisting loudly, and persistently, that something be done before anything actually will. And the personal experience can be very helpful in accomplishing that, because the emotional appeal makes statistics and other logical reasoning infinitely more appealing. When you allow people to stand in your shoes for a minute and imagine how such restrictions and policies completely turn your life inside out–not just in terms of your healthcare, but your career, your finances, your family life, your future outlook in terms of jobs and debt…–it makes them think how THEY could be completely decimated by an unforeseen circumstance and makes them care about the cause more.

    People matter, and we’re not just numbers in a ledger that needs to be balanced out. Your experience could, ultimately, be used to help others see that. It’s definitely been an eye-opener for me, at least! I marvel at the strength it must take to go through the situation you’re in and can only hope that if Doug and I ever find ourselves in a similar scenario, we’ll handle it even half as well as you and Terri seem to be.

    * hugs! *