Caucasian mid-adult man standing alone on beach looking at ocean at sunrise.Intro
Today I am standing at the waterline on the shore looking out at the waves. I am at ground zero. I never expected to be here again, and yet here I am, battered and bruised, my board broken in pieces. The wave was just too damn big, I lost control and was sucked under to bounce against the reef and rock. Eventually I surfaced and someone grabbed my hand and the next thing I recall was riding into shore. Terri and the kids, the medical crew and many of you were there with your support and prayers. When I look in the mirror, I wonder who the hell is looking back at me. But I’m alive and still have the internal drive that will heal me in the end.

Update
I thought February and March of 2013 were tough, after all that was when I had my transplant, but then I was in the hospital 24/7 with nurses and doctors and Terri. This time it was mostly Terri and the kids. February and March 2014 were the hardest days I have experienced in my life. Partly because of pain killers and mostly because of the pain both physical and emotional. I do not think I will remember those two months. They are a blur to me, ironically, that is literally true.

I have been fighting GVHD of the gut since late October, with the med team trying to get it under control. We did so with new medications and a complete diet change that I am still trying to figure out, still experimenting what will make me nauseous and what I can do to gain the weight and muscle I had lost. I now weigh 170lbs (a year ago 220). The GVHD has now moved outward to my skin and eyes. I had read or heard that is relatively a good thing, but until I see my Doc in StL on the 21st I really don’t know.

We do know that the HSV infection (the cold sore virus) was never stomped back into hibernation by the high dose Acyclovir treatment. It continued to spread. So we went to a dermatology oncologist in February (not sure if I mentioned that) and we did the same treatment at a higher level. I was off the high dose for two day when my right eye began to become painful. That damn virus moved there and set up camp, right on top of the GVHD. Lesions on my cornea. Yes, it is as painful as it sounds. And that damn virus kept spreading across my lower lip. The treatment did not work. So they upped the dose some more (to 3 grams/day) and we started putting Zirgan (an acyclovir topical for the eyes). Again I could not drive, hell I could not even see out of my right eye.

pain_ladderSometimes pain killers are just pain reducers, unless you take one more than you should. I take oxycodone and after the second episode of being whacked out, I decided I would just have to live with the reduced pain. I could go on, but let’s just say I was still underwater bouncing against the reef. And the pain just continued to escalate. Then Mom passed away from Leukemia. I don’t know, but between all of that, March was both a literal and figurative blur I do not care to remember much of.

The beginning of April things began to change. Mom’s Memorial, her Celebration of Life, gave me some closure and several memories you do not want to know. My eye and lower lip are improving… knock on wood, throw some pixie dust and positive vibes my way. I am hoping this ordeal is finally resolving. The pain is now tolerable and I can see once again. The pain killers stay in the bottle until the end of the day. I still have good days and bad days, but it is wonderful to have good days once again.

I may not be standing in front of the ocean at the waterline, but I am at ground zero. On April 21st I see my Doc and the  dermatology onc. to see if the virus is dormant and what to do next, because I have a lot of work to do to get my body back in shape and healthier. Yes… healthier, because becoming well is way across the ocean.

Mark

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

I had hoped to reply sooner than this. It’s been a very busy and difficult two weeks for me and the Gagnon family in CoMo. My Mom is doing better (that is relative), but there are good days and bad days. If you have gone through what my Mom and I have, then you understand. If not, I hope you never have to. Mom I love you and your courage!

black_and_white_doctor_with_a_clipboard_talking_0521-1005-1111-0212_SMUMy doctors in St. Louis decided to put me back on the IGG-IV (guess I’ve been spelling that wrong) for another six months. I think this is a very positive treatment option, since my platelet counts had went up into the 60’s (that’s 60, 000 – with the normal range being 150K as a low to 400k – 500K as the high) but have been steadily declining as of late. Platelets jump up and down as they ride the waves of your veins, so the difference between 30 or 40K is big at my levels, they are not a danger sign. (Now imagine for those old enough to have seen the original “Lost in Space”, and I’ll just stop now.) But you hit 20K and they start to give you transfusions. Mine have dropped again into the 30s over the past month. Not worried about it, because we have a clear treatment plan – IGG-IV.

So this last week…

Monday, (1/20 or Day 319), I spent 4 hours at the treatment center getting my first dose of IGG-IV. Yeaaaa! 😀 I slept through most of it, it was a rough 4 hours of sleep the night before. Prednisone and I have a love hate relationship. It keeps me alive, but only getting 4 to 5 hours of sleep (side effect) each night for 6 weeks is getting tough. Napping is a luxury, and the Gagnon family is surfing the same board and trying not to wipe out. Good days and bad days.

Tuesday, the most positive thing in my life is my family. Caitie turned 12 and I talked her into playing hooky with me. We played together, went to lunch and watched a movie. She is an amazing person, truly an amazing person; AND she is a “tween” with all of her own shit to deal with. I just hope I don’t scar her for life.

Wednesday, saw my ENT doctor, more & larger growths on my vocal cords. Time to start planning that surgery. Right now is NOT the time for surgery but getting my BMT Doc and my ENT doc to actually talk IS. Holistic medicine has a long way to go. One would think two specialists at the top of their fields (I never, ever go second rate), could communicate for 10 – 15 minutes and talk about helping ME survive. So I play the middleman. One second soapbox – WHY NOT!!!!! You’ll see why the middleman is a bad idea in a minute. Just not my wave.

Thursday, Terri and I drive out to St. Louis, a small reprieve, but I’ll take anything at this point, and so will Terri. Exhaustion can be a positive, we found the hotel before dark, found a place to eat. My first venture in fast food. Two Taco Bell Bean Burritos. No sauce, or cheese; just beans and a tortilla. Sorry My Love, I have no idea what you got. We ate, and went to bed. Terri got some deserved sleep, not enough, but enough to get her and me through the day.

(Note from Terri-They scheduled 4 procedures in St. Louis for Mark on Friday, the first being at 7am. We didn’t think waking up at 4:30 and driving to St. Louis was a good idea; hence going the day before and getting a hotel room. What 4 procedures you ask? Blood draws (the usual), platelet infusion (not the usual), port/catheter/central line placement (definitely not the usual- if you remember from the last post, one of the valves on his previous catheter had cracked [Bad thing!] and the whole thing had to be replaced), and a bone marrow biopsy (semi-usual thing). Did you follow all that?)

Friday, wake around 3am – damn Prednisone – and zone out. Sleep – HAHAHAHA! We have to get up at 5:30 anyway to make my first appointment at 7am. Labs. Its been almost a year since I had to have blood taken from my arm. Wow, that’s a lot of tubes. Across the hall is where they will be giving me platelets. 30K is not enough, 50K is the minimum for surgery. Except at 8am my medical team decides NOT to go ahead with the “port” as previously discussed. I’m getting a new catheter, instead. HAHAHA!

(Again from Terri – I can not possibly explain the difference between a port and a catheter, except that a port sits under the skin and a catheter does not. If you need more clarification, click on the links above and you can read up on it.)

They ask, “Is that OK with you?” How the hell would I know! And the Jeopardy song plays on. Except I have no buzzer, no information, no way to tell what is a good or bad choice. Plus, they just gave me Benedryl and it’s kicking in. I went for the catheter, because at least I know what it is. So now they are busy discussing the amount of platelets needed to do the catheter placement. Well, Terri and I have been here before, we’ve surfed this sandbar a dozen times. Everything is off schedule, but putting in a new catheter pushed us another hour behind.

(Terri again-actually it was the platelets that pushed us behind schedule. The lovely lady who scheduled out day for us only allowed 1 hour for the platelet infusion. Let me tell you how this works. They type you (blood type, they have to match), then they order the platelets from the hospital blood bank. It is not like you see on TV where they get them to you STAT! Then they give you Benedryl and Tylenol, to counter any adverse reactions. FYI-Benedryl makes Mark very sleepy. When you finally get the platelets, they start the infusion with a very slow drip… just to make sure you aren’t going to have an allergic reaction or something… take all your vital signs… and then finally give them to you at a normal rate. This does NOT all happen in one hour. So now we are 1 and 1/2 hours late to getting the catheter placed. They were unfazed by us being late and gave Mark good drugs so that he has no recollection of the procedure. Next is off to get the Bone Marrow Biopsy. Onward!)

Then we met Barb, who goes by the book to do my BM Biopsy. She told us what she was going to do, how she plans to do the procedure, and I said, “No you aren’t. Not to be rude, but I have special instructions written into my file. You need to follow those.” I’ve done this dozens of times and I know my body and how it reacts to different methods. Barb, of course becomes unglued, and she will have to call to have the procedure orders changed. Plus, I’m still looped from surgery. Another hour ticks by, which is OK because we’ve been there so many times we know their names. That was a positive, because it cooled down Barb, we reintroduced ourselves, she had her new orders and she was pretty good. Efficient, at the very least.

(I’m back – So while we are trying to get the “orders” straightened out-the standard procedure vs. Mark’s protocol- they have NP Stephanie from the BMT office on the phone. Stephanie wants to talk to me. So I am standing in the hallway between the nurses’ station and the room they have Mark in, phone in hand, relaying the discussion between me, Stephanie, and Mark to make sure we are all on the same page and understand what is going to take place. I swear I could not make this stuff up!)

Now Saturday, Sunday, AND Monday are a blur. Pain killers work real well, but I don’t remember a lot. I don’t do Morphine, it makes me puke; however, there are many others that work just as well, if not better (at least for me). It wasn’t just having a BM Biopsy, it was also placing a new catheter. Today is Tuesday, I hurt like I should, just when I move quickly or someone tries to give me a big hug. Today, no pain killers so far, and its almost dinner time. Knock on wood that goes well, becuase, yes, there are still stomach issues. Caitie just gave me a good comforting hug, and so did Kai. With Terri, Caitie & Kai my soul is complete. With and because of all of you, it’s icing on the cake.

One last thought, life over the last year has taught me that everything can flow with you or you can try to force it. My life (and perhaps my Mom’s) are here before your eyes. Tomorrow could be a good day or a bad day. Finding a positive moment during a bad day can give you what you need to ride that wave through. It takes effort to find that moment (and there are days where you just don’t find it – I’m not delusional). But when it happens.

~ Mark

bad days(Final thoughts from Terri – What I am getting from this experience is that every patient is different and responds to a transplant differently. There is no standard treatment. They can’t really tell you what to expect or how long some certain complication is going to last. The best they can do is say, “Yep, that’s normal (we have had experience with that)” and then start trying out different treatment plans. Because naturally since everyone responds differently to the transplant, everyone is going to respond to treatment differently. There is not standard, cookie-cutter way to go about this. You have to take everything as it comes, the good, the bad, and the ugly [and trust me, we have had all three], deal with it and move on. You may have known or heard of people that have gone through a bone marrow transplant, or even had MDS. Don’t assume that our case is the same as theirs. Because it isn’t, they are all different. And although, we are taking things as they come and dealing with it [Trying our damnnedest to Go with the Flow] this is the hardest thing we have ever done and no one can tell us what to expect tomorrow, next week, next month, next year… damn that got real negative. Sorry, that wasn’t my point, and now I have forgot my point. But I think what I said is important to keep in mind, so I am going to leave it there. Mark and I are leaning on each other and drawing strength from everyone that is keeping a warm spot for us in your hearts. When things get hard, we tell each other that this is temporary and it WILL get better.  Much love, and thanks for hanging in there with us.)

The Flow

I’ve always been a big picture kind of person, I like to know the past and present, so I can see the likely outcome of the future. I can do detail stuff too, after all you need that basic knowledge to see the big picture. But it is not something I need to focus on. This applies to work, life, and right now my health. And right now I am in detail mode, cuz things did not go according to my plan. I was supposed to be healthy now. Some things you just cannot control, or choose to ignore. I hope I do not distort the “Flow” as I try to explain this, but I can control most of my body actions and my mind (…most of the time), that is the detail mode, where you have to be in the present and focused. It’s the “some things” you cannot control that cause the most challenges, because of how you perceive and interpret the world. Experience plays a big part of seeing the big picture. It’s why some old people are wise, they have seen a lot in their lives, and focused on the details when it was important to.

Kelly-Slater-barrel-ridingGreat surfers are like that… yes, back to the surfing analogy… Knowing the ocean, reef, weather, etc is part of the big picture, as is wave selection. Will the wave wall up or crumble in front of you? Will the foam ball push you out with the spit or eat you up? All big picture decisions. (Please do not misconstrue that I have ever been barreled before, but I watch a lot of surfing). The detail is in your body movements (too many to describe here). But the point is that the control you do have is a big part of the Flow. Will dragging your hand slow you just the right amount to ride the wave through?

Choosing the Right Wave

The last two months have not been fun. As I said before GVHD sucks. We (my doctor and medical team and myself) have changed meds, added a couple, and I have learned to be very careful about what I eat. I have a plan of action that I can choose to use. Pain and nausea meds work, but fuck you up. There was a time that would have been OK… not now. Wednesday, we went to see NP Stephanie. It was a good conversation, because big picture-wise I can see what my doctor and medical team are trying to do. It’s been a while since that has been the case.

Back to Wednesday, what (of course) was a routine visit of 2 hours became a whole day. And scheduled a not so minor surgery for Jan. 24th, as well as a BM Biopsy to see what is going on in the old bones. Because although we have my GVHD “under control” (right?!). But my platelet count has once again dropped from the mid 60s to the mid 30s. I’m not worried, I don’t think my Doc and medical team are worried… last biopsy I had 100% donor cells. But chromosome 7 mutations are a bitch to get rid of. We’ll find out a lot when we see my Doc on Feb. 3rd, and discuss the results of the biopsy. We have a couple of paths to choose from and I need to research them carefully. Unfortunately, this is a case where it is a matter of life, and/or the quality of my life for the next few years.

Note from Terri:

We have yet to have a normal, “get in and get out” doctor’s appointment. They all seem to turn into an all day affair. Each appointment runs longer than anyone expects and no one is on time. So Mark’s pulmonary function test went long and ran into his lab (blood work) appointment. The lab appointment started late and ran long because they noticed an issue with one of the valves on his chest catheter. So we get to the actual medical appointment with Stephanie late. I guess no worries, she is running late too. She sat down with us and we were able to have a nice long conversation (which is a good thing). She looked at Mark’s catheter and said it needed to be removed, that they couldn’t just “fix” the broken valve. So when we were done with her we went down to Intervention Radiology to have the catheter removed. So where we should have left St. Louis by 1pm, we actually left at 4pm. And that seems to be the way it usually goes. For the biopsy day appointment, it has different appointments scheduled for the entire day beginning at 7am. Maybe we will get out of there by midnight. It’s blood tests, platelet infusion, port or catheter replaced, biopsy. Party in St, Louis if anyone wants to join us. Mark and I decided a few weeks ago, that sometimes you just have to laugh at what life throws at you. Because what else are you going to do? It’s not always easy. But we try.

Update on the Present

So in a very related way, I mentioned a few months back my Mom has leukemia (ALL), at 73 she has chosen not to go down the chemo path (can you blame her?), and tried out a steroid approach. Steroids are a temporary solution (I know from personal experience, as well as the research I have done). Although I cannot go to California to be with her, I know she had a wonderful Thanksgiving, Birthday, and Christmas. She chose wisely, IMHO. She saw those waves on the horizon, selected the perfect wave and rode it magnificently. Her cancer has since spread and the family waits, holds her hand, and gives her the love she needs.

mother and sonMom, I love you and am there with you in spirit if not physically.

Aloha makuahine.

~ Mark

Intro

We’re going to try to use a similar format each month for consistency, “unless something important happens, or we get new information that really matters.” We are really trying to go with the flow during my post transplant life. It’s just going to be a series of good days and bad days, and I (or we) are learning to live with that. To say the least GVHD sucks!

Has anything changed?

microscopeYes and no… Last Wednesday I had biopsies taken from my gut, which involved an endoscopy and a colonoscopy. I’m still waiting for lab results to rule out any other possible viral, bacterial and/or fungal infections which take time to culture. But as we suspected forever… ok, since the transplant in March, I have GVHD of the gut (from stomach to all the way down to the other end). This only involves taking the cell samples from the biopsies and looking at them through a microscope. They did not take biopsies of my liver and now my pancreas, because that is truly invasive, involving cutting me open. Even small holes can be dangerous, because of infection. So my Acute GVHD has now turned into Chronic GVHD. It also appears that I have developed a mild case  of GVHD of the skin and eyes. C’est la vie

And all of this is “normal”, just like a bell shaped curve. I move around the median quite a lot.  Not what we had hoped for, hence as we have said before, we are learning to live with that. My Doc (and medical team) changed a couple of meds, some to replace others, some to treat recent symptoms. Which is good news, because it’s helping. Again, I’ll have this for the rest of my life, with good days and bad days… good months and bad months. I’m still building a routine to improve my overall health. Again, a stem cell transplant is NOT a cure, but it sure beats the alternative.

no there wasn't a sock monkey - I just thought it was funny :)

no there wasn’t a sock monkey – I just thought it was funny 🙂

Good news… November was free of infections. Yea! Not so good… November was four weeks of GVHD hell. I did have a great Thanksgiving turkey meal, which I am truly grateful for. It was fun, because I guided Terri, Caitie and Kai on how to make a Thanksgiving meal. I’ve cooked it for 28 years now (minus a couple of years when we went over to someone else’s house), it is time to pass on that knowledge and it was wonderful to have them in the kitchen with me. 28 years… It’s hard to believe that most of my childhood friends have turned 50 and being the youngest of the group, I will too. All I can say is WTF!

I don’t think it is necessary to go into detail of what November was like. For those of you who read this blog or will read this it to learn about MDS and a stem cell transplant, I still plan to write that up in a new tab. As positive as we are and have tried to convey, this has been one hell of a journey. But that is not what this website tab is for. I’d do it all again given the choice. That does not mean I am willing to do it a second time, but that outcome is very unlikely. AND one I won’t have to consider for some time to come, if ever!

I still have no idea what I want to do in life, aside from focusing on my health and loving my family. But Terri and I talked about it in pure hypothetical speculation. At the top of my list is becoming a Brew Master. Yep… that is right, what better job could there be than brewing up beer for a living. With my knowledge of organic and general chemistry, I think I could make some mighty tasty beer. 😎   No I can’t drink it, but a small taste is all it takes to know its a fine beer. Plus, I have plenty of friends who are beer snobs, and I’m sure they will have no hesitation about giving their impressions. I truly hate Belgium style beer, so would have to depend on their snobbiness to have one on the menu. Plus a small kitchen in for some fine food (Yes, I was a chef in a couple of good restaurants while I put myself through school) and we have the makings of a great pub. Microbrew is the “in thing” these days, but very few know how to make a great west coast beer. But I guess I should get myself healthy first…

one day at a time!

~ Mark

*********************

A little cheesy - but the truth

A little cheesy – but the truth

I will second the fact that Mark does make good beer, and I don’t really like beer. Hmmm… maybe we could turn our basement family room into a brewery. The irony is that he can’t drink beer right now because of the yeast in it. Anyway… there are a lot of options to explore.

I don’t have a lot to add. Having the biopsies done was a good thing, mostly because it rules out other things that would have different treatments. Hopefully, the new meds will help settle his stomach down so he can eat something besides homemade soup. For a foodie like him, this diet is really trying his patience.

People always ask me how Mark is doing.. and I never know how to answer. Do you want the generic “fine”? Do you want to know all the grisly details? There are good days (weeks) and bad days (weeks). There is always pain, there is always nausea, there is always Just not feeling good. It is just a matter of degree. But I know he likes that people ask and wish him well. Hopefully now that the docs are settling on treatment plans, I will be able to say, “it’s been a pretty good week (or whatever)” more often.

I am always busy. I think I have adjusted to working full-time again. Other than sometimes being surprised by the sudden remembering of I have to go to work again tomorrow. But, I am learning lots. And honestly, it is fun.(Easiest answer, I am building web pages for students to take online high school courses.) My bosses and co-workers have been very kind, compassionate, and understanding about needing a semi-flexible schedule to deal with things that come up and take me away from the office.

Before this starts to sound too much like a Christmas Card newsletter… I will wrap it up.

Aloha and Mahalo,
~terri

*updated and expanded some for clarity on 12/12/13

 

skipping-rocksIntro

Sorry folks, but Terri and I have decided to do monthly updates unless something important happens, or we get new information that really matters. If you want to read our day to day life you’ll have to go to Terri’s Facebook page, become a friend and well… that’s about it. My Facebook page is only on the topics of science, the internet (esp., NSA, PIPA, etc), education and stories of cancer survivors. Most people don’t respond, and I take no offense, but I like to keep those topics in the forefront of everybodies mind, if my friends ever really see them. I do like to read about what’s happening in your lives and try to respond.

Onward!

Yesterday was a long, long day. Got to the Hospital (Siteman in StL) at 11ish am and left at 5:30pm. Not a routine day after all. We pretty much know that I have GVHD in my gut because it has come raging back over the past two weeks (GVHD is technically highly suspected, and because the only way to 100% determine that is doing a biopsy, which is the next step and may happen in the next month or two). They bumped up my Prednizone again, to combat the GvHD and are reducing it slower this time. I guess now that my Donor immune system does not have to fight off viruses, its decided to fight me instead. If the steroids work or not I think they are going to have to take a look at my gut and see what kind of damage has been done. Oh well… if its not one thing then its another.

So the other “major” issue is that my voice has deteriorated to the point I can barely whisper, which is frustrating when I want to communicate. Perhaps my family should learn sign language. The ENT (ear-nose-throat) doctor says that the viral “polyps” are growing much faster than before… yep, no big surprise there. Surgery is looming in the future to remove them. I’ve done this 4 times in the past, last time was about a year ago, just before the transplant. Before that, having them removed was like clockwork but it was two years between each surgery (CO2 Laser).

What variable changed? I have almost no immune system. White cell count is in the normal range (Yeah!), but as mentioned before immune-suppressing drugs suppress the immune system (aka white blood cells).So the polyps are caused by a virus, immuno-supressent drugs make viruses have a party in my body, so polyps re-immerge and grow faster than before.

And since we are talking about blood, my Red blood count (hemoglobin level is slowly going up, not quite in the normal range but getting there) and my platelet count has stabilized in the mid – 50s (we have a long way to go there). But it is stable and I know we will do what needs to be done to get it to rise up and become normal again. And that is likely to take another year. We were warned platelets are the last to recover. I think we were all hoping I’d respond well and be back on my feet by now. But it has become obvious that that is just not going to happen.

I will always have to live with GVHD, but it has been “mild” and/or manageable. Such is life. I have my family and friends, hopefully soon I will be healthier and recovered from the series of viral infections. I’ll work on my health, the alternative way (you know, meditation, etc.) and go from there. Where to? Right now I have no idea.

thIts funny… sad… and wonderful that it takes something like this to make us really look hard at life and what is really important. It did for me, I did it twice, when I was first diagnosed and then 7 years later when I went in for the transplant. Once is really enough, but I guess I had to review what I had learned the first time. That reflection is still going on and it is giving me a deeper look at who/what I am and who/what I want to be. Yep… I’m going on 50 and I can still decide to change direction and ride that wave out. It will take longer, after all 49 years of habits are hard to break, but I made some good change with them the last time. Anyway… instead of riding the wave in a Go with the Flow attitude, I went back to trying to bend the wave to my will. That led to a lot of stress and my body responded.

Even though I was doing the job I had always dreamed about doing, it was just too much for one person to take on. Sometimes you have to let the wave go by or don’t and get pounded into the reef. Energy and matter may make a perfect wave, but there are other variables that impact that perfect wave (or any wave). I know stress will kill me… meditation, qigong, acupuncture, a healthy diet, and an awesome job which I loved, were not enough to transfer that positive energy into relieving my stress level. Not to mention my love for my family and friends, and their love for me. Or perhaps if I did not have my illness, that level of stress would not have been an issue. And I’ve seen too many people with a greater amount of stress. Spilled milk! But clearly, I don’t know how to relieve my stress level. So that is something I have to work on.

~ Mark

doctors-waiting-room-with-cobwebsI have to add a story about yesterday’s visit. Ninety-nine percent of the time our interactions and care from Barnes-Jewish/Siteman Cancer Center are top-notch. However, yesterday there was a question as to whether Mark’s catheter was still placed correctly or whether it had “migrated” to another location. (If you are scratching your head on that one, join the party.) The only way to be able to tell was to have a chest x-ray. So at the conclusion of our doctor’s appointment (which had already started 1 1/2 hours late) we were sent downstairs to have an x-ray done. After jumping through this department’s hoops, said x-ray was taken and we went back upstairs to the doctor’s office to find out the results. And we waited, and waited. Apparently x-ray gets “read” by another department and then results communicated to doctor. Well, department that is to read the x-ray is waiting to get x-ray, and waiting and waiting.

Doctors looking at chest x-rayNow the magical hour of 5pm is approaching where departments are closing and people are going home. They call down to the department that took said x-ray and were told that Mark never had the x-ray taken. They hadn’t seen him, hadn’t talked to him, hadn’t taken an x-ray. Apparently Mark made the whole thing up and lied about getting his x-ray taken. Are you following this? Stephanie (our Advanced Nurse Practitioner) gets on the phone with the supervisor of the x-ray department and basically says if anyone is lying it is the tech that took (but claims never to have seen Mark) the x-ray. And that they better figure it out pretty damn fast. Within minutes the x-ray magically appeared, but now the department that “reads” the x-rays has closed. So we can’t find out the results until the next day. All of this potentially going to cause the catheter to be removed and reinserted (not really a minor procedure). Steph tells us to go home and she will call the next day once everybody has come back to work. Although we can’t just go home, because there is one more procedure to be done, which I won’t go into right now because that is a whole other story. Bottom line, we head to St.L for what should be a basic 3-week checkup and leaving St.L by 2. Yeah right. I think we finally got home about 7:30 (we left the house at 10am).

Both Mark and I are kinda anal about stuff going according to plan. We need to know what to expect and things to follow the plan, otherwise we are thrown way off base. Hence, our striving to just “go with the flow.” We work at it a lot. But it is hard. Very little goes according to plan, when a plan can even get made. We both are trying to slip into some type of routine for how life is going to go now. Mark’s really wants to do all those things that will work at improving his health, the stuff in his toolbox. I am trying to just get a daily routine to take care of my family (and myself – I have my own set of problems, but that is a whole other Oprah.). We both are struggling, but tying to take deep breaths and just go with what life is throwing at us. Because, obviously, fighting it does no good. It just increases stress which does more harm then good. So while you are sending vibes for Mark to continue to improve healthwise, send us some wishes for being able to deal with all the rocks being thrown in our river, and being able to go with the flow.

-terri

 

(note: Mark wrote this on Tuesday, and I forgot to publish it. Oops, sorry. ~t)

Take what life gives you, use it to make you stronger and keep moving forward

Take what life gives you, use it to make you stronger and keep moving forward

Hey there,

Our St Louis Doc visit was not unexpected. Good and bad news. So lets start with the bad news first and see how it affects me. I am NOT one of the lucky ones, where the transplant will just work, that 25% where everything goes smoothly and at the end of 6 – 12 months I am what they like to refer as cured. Like I said this is NOT unexpected.The irony is that I am in remission, and the doc did use that word. I have 100% Donor cells, and the FISH test came back with NO chromosome 7 abnormalities. Sounds pretty damn good to me. But I also have Chronic GVHD, on my skin and in my gut and they basically told me I could be on immunosupressing drugs for the rest of my life.What does that actually mean to me? Exactly what has been happening to me for the past 3 months. I will continue to get infections… I will continue to have GVHD. The graft (my donor cells) is not “sticking to my bone marrow like it should. It’s producing just enough of the three blood types to keep me going. But the donor cells have not made peace with the host, which is the rest of me. Perhaps they will someday, perhaps not. The doctors sure as hell do not know.But like I said in my last post, my doctors can do their medical specialty and give me pills and treat the symptoms that come up. And from my perspective (supported by the research I’ve read), if this is my treatment plan… To be passive and just take my pills, an infection will eventually kill me, or I will relapse. And as much as I love my doc, he just can’t see holistically. So I’m going back to my health routine before I had the transplant, but with more effort. I have the time now to devote to it.
As you know I am not going to be passive about this. Using a Go with the Flow attitude will slowly “cure” me, or at the very least stabilize me. It did for over 6 years before the transplant. Go with the Flow is NOT passive, take a minute and please see our original blog (http://tealflow.wordpress.com/what-is-the-flow/), and read my piece, “What is the Flow?”  As you can see Going with the Flow is far from passive. And that is a huge positive, I finally have more control of my medical treatment and health.
Mark
PS: We live with this everyday and talk about it everyday. But I realize that when we throw out GvHD, it doesn’t always make sense. Graft vs. Host Disease is when the graft (that’s the donor cells) and the host (that’s Mark) and not in total harmony with each other. The donor cells are living and dividing and creating new cells, but they don’t feel at home yet and see the host as foreign and attacks host cells. And it hits certain areas hard, the digestive tract, the liver, the skin. Don’t ask me why these areas over other areas, it’s just what happens. And while the cells are fighting fitting in, the host (that’s Mark) suffers the consequences. Eventually the donor cells may settle in and decide that the host is not such a bad place to live, then again, they may be stubborn and continue to cause the host problems. A good site for more information and that explains all this is here. The GvHD is what is keeping Mark on the immunosuppresents that consequently put him at risk for infections (thus all the stupid viruses he keeps getting).
~terri

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