Mom & Caitie

Mom & Caitie

Last night my mother passed on to whatever comes next. She is in Heaven now, because that is what she believed in. She had been fighting leukemia, (ALL). May she rest in peace.

A few pictures to celebrate her life with my family:

Gathering up

Gathering up

In front of the fire

In front of the fire

Mom and the Gagnon boys

Mom and the Gagnon boys

Gingerbread house

Gingerbread house

Mom and Caitie waiting for the fireworks show

Mom and Caitie waiting for the fireworks show

Mom and loving Grandmother, We will miss you and always love you.

Mark, Terri, Caitie and Kai

 

 

frustrationYou won’t believe this! The insurance company will not pay for the additional infusion of donor stem cells… YET…

Why? Because I am NOT transfusion dependent at this time. So they want me to almost die again instead of being proactive and/or preventative of my condition. WTF!!!!!! Yes, I am angry.

I got the rejection letter a week ago. So I started doing my research. I know what my Doc was going to do… what the outcomes are from the medical studies (and it’s all positive… like 2 to 3 times the long term survival rates. And the medical studies pretty much say to do it earlier than later). But in the rejection letter it actually states there is no evidence for positive results from the NIH or other reputable government agency. Does the procedure have the seal of approval yet from the NIH? Why? Because these medical studies are still in Clinical 1 and 2 trials and were published in 2011 – 2013. My insurance says, as “defined” by the University (through which we get our insurance and which has a huge Medical School), says that 1 and 2 clinical trials are “experimental”. Technically, they are. Experimental procedures are not covered by insurance.

Did the University just buy a plan (a package they could afford) from the insurance company and the insurance rep and director of making these decisions just bold face lied to me? (Automatic denial for “experimental” procedure) or… Did the University decision-makers actually decide purposefully to exclude 1 and 2 clinical trials? If so, how short sighted can a Research 1 university (supposedly equal to Harvard and MIT), which the University is classified as, and how hypocritical can they be? Yes, this university is a RESEARCH 1 university and very proud of it!

So the rug has been pulled from under my feet, once again. Good thing I can surf. I’m just trying to figure out where I should stand.

Luckily, I’m not transfusion dependent, except during surgeries. We have to schedule my vocal cord surgery (to remove the viral growths that are exasperated by my lowered immune system) in April, after spring break, so I can at least enjoy the kids and no complications arise. Lastly, I need to finish the IGG-IV treatments to see what impact they really are having. Those IGG treatments are fucking expensive… and we can keep doing those for a year or two. I would not think they would want to keep paying that.

But personally, I’m getting tired of the change in plans, the surprises, the stress, that I have to fight so fucking hard to get proper treatment. The irony is that my family and I have paid into the insurance system for over the past 49 years of my life. I was always covered by insurance. I have the right to proper treatment for my condition. And if need be, I’ll sue them for my rights and my life. Insurance companies and employers should not get a say in the treatment of a patient. They buy plans (basic, medium, or high), and I do see the hole in excluding procedures as part of a plan.

But that is NOT what the Affordable Health Care Act (“Obama care” and I hate that term.) says and I’m 99% certain about that. ** Sidenote: If the Republican party really cared about the middle class they should have done something about this issue years ago, instead look at what they did a few months ago… sorry soapbox. ** It has always been and should always be the doctor’s job to decide on treatment and timing, as well as the Hospital’s.They are the experts, not some insurance penny saver reading a clause in their contracts.

Damn it! I just want to get well and go back to work.

~ Mark

Intro

Not quite my birthday yet, the day I began my new life. 10 days of intensive chemo, two days to rest and let that shit partially clear from my body. Then when most of my own blood making cells were dead, they gave me life. It was all in a bag and we celebrated my new birthday with song, pixie dust, good vibrations and a whole lot of prayer. There is a lot to celebrate today, my bone marrow biopsy results were in… I’m 100% Donor!!!! Those lines on that sheet of paper were the best thing I have ever read. The transplant worked and I no longer have MDS! That is such a good feeling.

And that is not the end of the story…

As you know I have had complications from the transplant, Infections and GVHD. The Graft (Donor stem cells) are fighting me (The Host), mainly in my gut (from stomach and all the way down). And they are fighting each other too. Why are they waging a civil war?! No-one knows, medical science doesn’t. God certainly does, but is not sharing that information with us (for now?).

My Doc, Terri, and I had a pretty frank discussion about this. There are still a lot of unknowns. But the Donor cells in me are not enough. (Brief pause – To my Donor, my Angel, I love you, and thank you and hope with all my heart and soul you will share part of your life with me, again). I need another infusion of stem cells.

The drugs to calm down the battle are working, but it is a temporary solution. The IGG-IV treatments seem to be helping, but that is also a temporary solution. These are the medical solutions, from my Doc (and medical team). The stem cell infusion from my Donor is our best hope to kick my body in the rear and start to take off. Or it might be temporary and that will be that. Bummer…

The Set

But now its my turn too. Since the GVHD came around, I was relatively healthy, despite the infections. Its hard to get into a routine, when you are doped up on pain killers. My tool box just sat there, and I lost 30 lbs. (not fat, I lost that in the hospital, and when you run out of fat you start to use muscles to fuel your body). Shit! But I said its my turn to live. There is a new set off in the distance and approaching fast. There are no decisions to make, I’m riding one of those waves.

So baby steps… What about Bob?! Bill Murry?!  I truly love that man… and you too Davo! CA inside joke (sorry everyone else). I just cannot jump up and open my tool box and a magic genie will pop out and make me strong and healthy again. I have to work for this, I have too much to lose. And I might need some help. I cannot live on temporary medicines like I had thought. Unless you have a magic genie you are willing to give to me.

During those six years I stabilized my MDS. I was dropping down the face of a wave and wiping out. Then, I took control. Tai chi (Taiji), Acupuncture, Chi gong (Qigong), Chi Walking and Meditation. I went totally organic, whole foods, and supplemented it with Super greens and a variety of other natural vitamins and minerals obtained by using probiotics. I saw the dietitian that handles oncology right after my appt. with my Doc. She said quite simply, “You better start eating”.

My blood counts stopped dropping (not exactly true, but the rate of drop was really slow). I stabilized! That is my tool box (thank you Mary and Lynn!), my Doc put a lock on one drawer… NO probiotics! Probiotics are the good bacteria that live in the gut and help you absorb nutrients. How they can hurt me is a mystery to me, Few medical studies have focused on probiotics and survival rates or what they do to transplanters, like me.

I need to work through the pain (baby stepping it). It does not matter why I suddenly spiraled down where I had to do the transplant. That is the past. This is the now, and I need to start healing NOW. This is the control I have and work around the locked drawer. Food restrictions, because of the GVHD, I will have to work around and find alternatives. I need updated medical articles to read and study to help guide me, flowing with the wave to avoid wiping out. Plus, I’m a scientist, but science cannot and does not solve problems. People do… science just gives us the knowledge of what direction to go (right Dr. Debbi).

Side Note/soapbox: Our Education fails in Math and science because administrators and politicians think that memorizing facts is more important than learning how to solve problems *(computing a math equation is NOT solving a problem, it is computing an equation or whatever). End side note.

The bottom line is, and deep down, Hope comes from what I believe and how I use my toolbox. Only I can do this, but could always use a helping hand. Party Wave!!!

~ Mark

sunrise

I’m back! Did you miss me? Don’t answer that. It’s snowing. Grateful it’s snowing today and yesterday was blue skies for our trip to St. Louis. Because it is snowing enough that they closed the kids schools and the university where I work. And that almost never happens. Also, especially after the ice storm Friday night/Saturday. Life happens, but we really didn’t want to reschedule yesterday’s doctor’s visit.

Yesterday when we got to the doctor’s office, we were a little early, so we asked for a printout of the biopsy results to look over before we met with Dr. D. While they were taking M’s vitals-everything about standard, and still losing a couple of pounds every visit-NP Stephanie came hurrying over and handed me the biopsy result printout. I will admit it, I don’t understand most of the jargon, but I try to get a grasp of the important stuff. And there it was on the first page: 100% donor cells. I had to be patent while Mark and the nurse went over his extensive med list to make sure it was up to date, before I could tell him. When he realized what I was telling him, he was ecstatic. We high-5ed. We hugged. It was a good moment.

So while we are with Dr. D and we have all absorbed the good news…we try to decide, so now what? What do we do about the other stuff. The weight loss, the low platelets, the GVHD. Dr. D. basically says Mark needs to get stronger, so moving around more. A little at a time and little more each day. We carry on with the treatment already underway for the GVHD and hope it starts to resolve itself. The platelets…well, we need more donor cells. So, we cross our fingers and say our prayers that out donor-angel still wants to help a complete stranger and give us some more of herself.

I think we left the appointment and yesterday, with some determination that Mark is going to get back to his lifestyle he had before complications started kicking his butt and he slipped into treating things moment by moment and saying he would get back to routine “tomorrow”. Well, it’s tomorrow. He is going to start meditating again and practicing TaiChi, getting back in tune with his body and getting it to heal itself. He is going to start taking control back. As he said baby steps, starting slow on the physical activity and adding a little more each day. He is going to make a concerted effort with his nutrition to up his protein and calories with the limited items his insides can tolerate.

And I am going to be here with him, reminding, nagging, and double checking – encouraging him onwards. The fight isn’t over, but we are still in it and pushing onward.

~terri