Intro

Terri and I feel it is time to put the blog Just Flow on the shelf and for now call an end to Our Journey Through MDS. At this point, the stem cell transplant was successful in treating and stopping the MDS. I survived! I am at present 100% donor in my bone marrow and peripheral blood. I am not a half empty or half full kind of person, I lean towards optimism but am also a realist. So I will continue to believe that the MDS is gone until the medical lab results say otherwise.

Update

Right now my medical team is reducing the steroids that kept the donor cells from attacking my body. So far so good, the GVHD is not flaring back up, but neither has it gone completely away. On the other hand some very good news is that my platelet count is responding! Over the past month they have gone from bouncing around the mid 40s to mid 50s to 100K, on my last lab results. They have not been that high in 5 years!

I know I still have GVHD in my gut, and limitedly in my skin (fingernails mostly) and in my eyes. In all three cases it is “mild” and if I use common sense and what I have learned over the past 6 months, I am optimistic that we will reduce the rest of the steroids and end them by the end of the year. I will still have GVHD for the rest of my life, all transplant survivors do. It is just a part of our life… so be it.

Ending the use of steroids is a very important step. I learned a couple of weeks ago they caused severe Osteoporosis in my spine. Its not mild like the GVHD. Right now I am going through physical therapy to build up my muscles, which is going to help me deal with this new health issue. During my last visit to see my transplant team they gave me a drug to halt (or slow) the damage and bone loss caused by the long-term use of steroids.

A Time of Transition

A week ago Terri and I saw a bone oncologist who specializes in osteoporosis in transplant survivors. She is very good and very thorough. There is a drug that might be able to regrow some of the bone in my spine and hips (and the rest of my bones). There are risks associated with this treatment and I will have to learn to become as knowledgeable about Osteoporosis as I had become with MDS and stem-cell transplants.

I won’t play the blame game and cry over spilled milk. Could my transplant team seen what the steroids were doing to my bones? Yes. Could they have stopped giving me steroids? No. Would giving me that drug earlier have help slow the development of the osteoporosis? Maybe. And getting the GVHD under control was their first priority. In situations like this you have to prioritize. The GVHD would have killed me if they did not get it under control. I knew that the two greatest risks following a stem-cell transplant was viral infections and GVHD. I got both… I survived both.

Now I am on a different journey. Just Flow is still just as important in dealing with the osteoporosis and GVHD as it was in surviving MDS and a bone marrow transplant. The GVHD and osteoporosis are chronic long-term health illnesses. Both will require me to adapt and move along the wave with a different set of rules. I am now considered “disabled” for life. How much will be up to me to a certain extent. And there are quite a few great role models for me to follow. People who have been told they will never walk again… or the Soul Surfer girl who lost her arm and is now surfing competitively. Will I be one of those people who climb Mt Everest or sky dive with the risk of breaking my spine. Hell no! But that was not me before all of this happened, and I certainly do not need to prove anything by doing that kind of extreme activity.

I do expect I will strive for walking 5 miles in an hour, or swim and scuba dive in the ocean, or live a “normal” life. Of course I will have to be careful, but who doesn’t have to adjust to just growing older. I think that is just being as realistic and optimistic as I have always lived my life. Yeah, I have to adjust that timeline again. Being optimistic I think I can recover in a year or two. And being realistic there will continue to being good days and bad days, which will eventually lead to more and more good days until I am healthy once again.

– Mark

I want to give an extra shout out to all of you who supported me while Mark was going through his transplant and in the hospital, while I was blogging solo. Your comments and emails helped me feel not quite so alone when I would go back to my little house at the end of the day. Although our regular blogging journey ends, the adventure of life continues. Keep us in your thoughts and prayers. Send us an email. Maybe occasionally throw some pixie dust our way.
Mahalo
~terri

So Terri and I both feel it is a celebration to be able to put the blog Just Flow – Our MDS Journey on a shelf and sprinkle the top with pixie dust to grow. If we have to pull it off the shelf again, with sadness we will let you know. But we want to thank all of you for your love and support through the most difficult time in our lives. We know your positive vibes, thoughts, prayers, knocking on wood and sprinkling of pixie dust helped us emotionally, physically and financially, and I believe strongly it kept me alive. With all of our heart we thank you.

To my donor, I literally love you and the gift you have given to me.  Your gift of life is inside me, coursing through my veins and has given me a second chance at life. Words will never be able to express my deepest gratitude, I hope a humble Thank you will do for now.

Love Mark and Terri

A couple of days ago reported in The Hill, a news organisation that has a “Congress Blog”. In the opening lines of the article by John Kerr, he writes:

Why would federal health officials want to make felons out of those trying to save the lives of thousands of Americans suffering from leukemia and other deadly blood diseases?

That’s a question many doctors, patients and their families are asking as the U.S. Department of Health and Human Services (HHS) seeks to re-criminalize compensation for bone marrow donors.

I would not be alive today without my Donor. Please, Please, Please… This is a must read for people following this blog and anyone who is going to have a Stem Cell (bone marrow) Transplant or is thinking about becoming a donor.

Please read this article.

Why do they make this so hard for us to receive treatments to live?! Thank you for all your support! I will research what we can do to stop this craziness by the HHS and post on this later.brazil_movie_posterEditSize

 

Close-up of human hands clasped together in unity against white backdropI always did like that Beatles song. I’m hoping its still true.

Help!?!

I have always prided myself as being independent, self-sufficient, and I focus primarily on my little family unit: Terri, Caitie, and Kai. That makes it difficult for me to be the social animal that I am. I no longer have that interaction because I do not work anymore. It also makes me a bit stubborn when it comes to asking for help, socially and physically. And this does not help. Terri’s parents and my acupuncturist, Lynn (who I do view as a good friend) have been the only people I see on a regular basis. Two other friends in Columbia have come by to visit… thank you, it was a joy to see you.

Social Invitation

I would like to send out an open invitation to all of you to come by and visit us. I think Terri and I have become recluses and some companionship would be wonderful. If I’ve given you the impression I’m deathly ill… I’m not. But do ask that you are not ill or recovering from an illness I might catch. I do have to be careful in public places and for the time being really am physically weak because I lost 25 lbs of muscle over the last 4 months. I started physical therapy (YEAAA!) so I can gain my strength back and not hurt myself.

A short story… last weekend feeling confident that I was actually stronger than I am, lifted a door we want to install in our computer room/museum (all the Apple toys Terri and I have collected over 25 years of being Apple geeks). So I pulled a muscle in my back. Ouch! To be honest the pain is incredible and hurts just to breath deeply. This morning I took Kai to school. I parked in our driveway and couldn’t get out of the truck. So I took some emergency pain killers I keep on hand and waited 40 min so I could walk 30 feet to the door and go sit up in bed. I certainly was not going to call someone to get me out of the car, while they were at work. It was then that I realized we needed help. Not to help me out of the truck, but 40 min. gives you time to think about life. I went onto Facebook and found out one of my friends (not living in Columbia) got married in March… I had no idea.

But let’s face it, March was a difficult month for me and our family. If you didn’t know… start with post: Linda Mason, My Mom, through the Year 1 – Day 50 (skip the “soapbox section and the post: “Stop the Secrecy”). It seems we are just surviving, not living life. We are tired and feeling lonely. I’m certainly not guilting or blaming anyone. Terri and I miss you and are reaching out. Call and stop by, or email us. We know most of you live way outside Columbia and would never expect you to come visit, but an email would be awesome.

A Physical Invitation

As you may know, a transplant patient needs a caregiver. Someone he or she can rely on to be there and help out how and when and whatever is needed. Terri has been my only caregiver for a year. Gwen really stepped up when we needed her the most (twice) and took me to the hospital and took our kids when I was transported to Saint Louis. Thank you very much, Gwen!

We are kinda in a bind right now, because of the shape my body is in. And I am stubborn cuz I hate to ask for help. It makes me feel uncomfortable. That is my problem I need to get over. So I am asking for some low level help. A hand or two. Terri needs a weekend off once a month to regain some “sanity”, sometimes she will want to go hang out with friends, sometimes she just needs to unwind and be alone. She is tired and exhausted all the time. I can take care of the kids during these weekends, I just need someone to call or come by to make sure me and the kids are alright.

Ugh… the hard part. We also need help with our yard and garage. Its spring and they both need a bit of spring cleaning and some love and care. Perhaps it is too much to ask, I’ve never had to before. But we really do need help. Lunch, beer and/or wine (or sodas) will be there for you. Terri and I just cannot do it… her parents are in their 70s and help out all the time watching the kids, but I will not ask for more from them. They have been great! And the best part, it will give us time to visit with you and reconnect. We do miss you. And those of you who live outside Missouri go with the Social Invitation, and email or just saying Hi on Facebook would brighten our day.

With much love and hope,

Mark and Terri

hands

25. April 2014 · Comments Off on Year 1 – Day 50 · Categories: Information, News and Updates, Thoughts

Intro

We are just one tired family. It really seems like we just can’t catch a break. Just when we think we have a handle on the everyday things and the medical things, something new creeps up. I would really like life to just slow down so we can catch up. ~ Terri

It would be nice to have a vacation from my life. I know Terri feels the same. We are just coming out of a very challenging period of life. From a physical and emotional standpoint. The core of us is the same, We are still positive looking forward. There are still good and bad days. We still have a lot to be thankful for; e.g., I can see out of my right eye now and the pain is minor compared to what it was a month ago. The worry and fear is slowly fading into the blurry unknown. Deep breath… its going to be alright.  ~ Mark

Linda Gagnon Mason

Soon I will be creating a new page dedicated to my Mom, who lost her battle with Acute Lymphocyte Leukemia (ALL) on February 25th. There will be pictures and articles, videos and poems to Celebrate her life. The page will take on a life of its own as more people contribute to it. Linda Gagnon Mason lived a long and rewarding life. God bless her, may she rest in peace.

Soapbox

This is a soapbox moment, one I am passionate about. Skip it if you want to, I won’t know ;P

Soapbox = hopeKeeping the internet open and “free”. When I say free, I do not mean everyone should have no cost access to the internet. Instead, I mean that the internet should NOT be censored or manipulated by any government, special interest group who can buy the votes they need to pass laws, or certain corporations. We do need laws to protect individuals and groups from predators, but for the most part those laws have been written. That is not what “Stop the Secrecy” wants to stop. There has been a continued campaign by some in our government, special interest groups who buy votes (like the music and entertainment industries, among others who have something to gain; whether it is monetary, political, or religious. BTW it is illegal for politicians to take bribes, but that is what happens, more now since the US Supreme Court overruled a law established in the 1970s, because of Nixon, to prevent corruption in the US government).

All these groups had their chance in the open forum where laws are supposed to be made for those of us living in the United States. It is called the US Congress. They lost!  But over the past 6 months they have been meeting in secret once again, trying to broker deals through the Trans-Pacific Strategic Economic Partnership (TPP). They tried to “Fast Track” it 3 months ago, and that was stopped by the will of the people, in the US and other parts of the world. They are at it again, this time in Asia. To quote from the OpenMedia campaign, which is supported by individuals, corporations, and politician who actually represent us:

The TPP is huge: It covers 40% of the global economy and will overwrite national laws affecting people around the world.3 

The worst of the TPP threatens everything we care about: democracy, jobs, health, the environment, and the Internet.  That’s why decision-makers are meeting in Asia under extreme secrecy and pushing ‘Fast Track’ laws to cement the plan into place. 

This is no way to make decisions in the 21st century. We need to raise a loud global call to expose this dangerous secrecy now. 

With every voice that is added to our call, a donor will contribute to make the Stop The Secrecy projection on buildings in Washington D.C. bigger and brighter. We need to make this as big as possible when Obama returns to Washington on April 30th.

Please note: In no way am I supportive of donating money to OpenMedia. If you want to fine. I think writing to my political leaders to be far more effective. For more information see the previous post I placed yesterday.

End of Soapbox and onto what is happening in our world.

Health Update

Terri and I went to StL to see my Doc and the dermatology oncologist for our monthly visit. We saw the dermatologist first, which was really fortunate. The HSV infection on my lip is slowly getting better, as it is in my right eye. BUT system wide it is still there and active. The dermatologist did a thorough swab and yesterday I got the news that despite the high dosage antivirals the virus is still there. So they decided to change the treatment plan and I am on a stronger anti-viral medication. We are seriously hoping this medication does the trick. Not to be a downer, but I did a lot of research on HSV and how it affects transplant patients. So far we have it under “control” and I have been lucky. If it continues to wander around in my body, it will eventually find my lungs. We do not want that to happen 🙁  It would be very bad mojo. So let’s all pray and think positively and throw pixie dust my way that this new medication kicks butt and the HSV goes into its dormant stage.

The dermatologist

The dermatologist also confirmed what he sees as GVHD and potentially other things.

Let’s just start with my one true vanity. I love my hair. Well, I guess I am going to have to adapt to not having it. I do have fuzz up there and some truly pathetic whips of hair. Thank you Chemo! If it was GVHD it might have grown back. But this condition is permanent, “although nothing is certain”.

 my vanity               nohair

I also appear to have GVHD in my mouth and throat. The dermatologist said I should get the ulcers in my mouth and throat biopsied when I get my vocal cords done (laryngeal papillomas removed), so we know for sure. I had been complaining to all my doctors for 2 months now that I had a sore throat and a mild ear ache. None of them thought it was GVHD or a problem to deal with. Eating is now painful, so those of you going through a transplant don’t let your medical team just wave off “minor” stuff. Without treatment minor stuff becomes bigger issues. I have learned this twice now from experience. I have had that lip sore for over 5 months and it went into my eye (and could have blinded me). The mouth sores, sore throat, and ear ache now makes me have to take a pain pill to eat.

Bottom line: Be persistent and advocate your rights to proper medical treatment. You don’t have to suffer while you are going through this. Each of those doctors that looked at my throat, looked for less than 10 seconds. The dermatologist spent several minutes looking at the sores and checking me out. The purple bruises on my arms, legs, and chest are NOT GVHD of the skin, but are because of my low platelet count. My finger and toe nails unfortunately are GVHD. They are wavy and peaky and thin. And I probably have it in my eyes as well. Not much to do about that except to stay out of the sun.

My Doc

Being one of the best in your specialized field is great, but you also have to look at the body as a whole, not just what the blood is doing. My doc does look me over, but its quick and not very thorough. The man is brilliant, there is no doubt about that. But be advised that its up to you to bring up large and minor issues to them. Right now I am “stable”, which basically means I am not getting worse, and I’m not getting better. I told him that I was to start Physical Therapy the next day. He said that was a good idea and then looked at my arms and chest to see the muscle loss that had occurred over the past 3 months. Then he said that we need to continue to reduce the steroids in my body. Long-term steroids are bad for your body. I am now on 10mg/day Prednizone, compared to 60mg/day 3 months ago. We tapered down much slower this time and my body is adapting much better. So we are going to slowly reduce the steroids controlling the GVHD in my gut, one medication at a time. And we are waiting to see what happens over the next month. The biggest issue now is my platelet count. It bounces around and between 30 and 50. Life goes on and its far from being fun, but most certainly beats the alternative.

The picture in post Year 1 – Day 35 was very appropriate for that post. Today, all four of us are standing together holding each other and gazing into the sunrise. Its a new day and there is a bright spot to keep us going,.. sometimes you have to search for it.

Terri here. I am not sure what to say. I feel like a broken record. I thought we would do the transplant, the transplant would kick his ass and then there would be a slow recovery. A slow and steady recovery. It’s the steady part that we are having a problem with. The recovery process jigs and jags and seems to be more of a horizontal graph than a vertical one. At one visit NP Stephanie told us that some patients are struggling and then for no good reason just turn a corner and then start getting better. Less problems, better blood counts. I have been really holding out for that and I have my eyes open looking for that corner.

Some days it is all we can do to just feed and clothe ourselves. I say, “I will just do _____ tomorrow. I don’t have the time or energy to do it today.” And sometimes tomorrow strings out for a few days. Some things are still waiting for tomorrow to come. One thing that I make sure I do, is have clean clothes for everyone. Last week, the dryer decided to retire. I pushed the button and nothing. I opened the door and no light came on. I was ready to cry. Not only could I not do one of the few tasks I make sure gets done. It was just another thing on the never-ending list of things that need to be taken care of. But Saturday we went to a local appliance store and found a nice used dryer for a good price**. So check that off the list. In the midst of last month, we came to terms with the fact that my cat, who we have had as long as we have been together, was sick, dying, and in pain. And she needed our help to ease her passage out of this life.

But that is how it seems to go. There is always something. And I am including what we deal with, with Mark’s health issues as well. Whether it is medical or just regular life, there always seems to be something. Okay, I will stop whining now. I need to go make dinner. One of the other things on my must do list. Keep my family fed. Fed and clothed, those are the two biggies. And always, always make sure they know they are loved.

Through all of this and being tired as hell, we are thankful and very grateful because when a magical moment pops up, it really makes our day.***

** Thank you Davo very, much! ~ mj & tl

*** Thank you James and Family for that magical moment! ~ mj & tl

24. April 2014 · Comments Off on Stop the Secrecy · Categories: Information, News and Updates, Thoughts

StopTheSecrecy

StopTheSecrecy Infographic

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

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

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