So Terri and I went to StL last Monday to see my Docs for check ups and I got thrown in the Hospital for a week. We’re home now… not sure I’m feeling any better. They put in a new catheter, so I could do this new treatment.  Anyway… My transplant doc thinks my chronic GVHD is having an Acute flare-up. Which might be treatable using photopheresis.

We are going back to StL for another two days of treatment on Tuesday but won’t get home until Thursday afternoon. Based on how I felt after the last set I ‘d say Friday won’t be much fun. It doest hurt or anything during the treatment, I just seem to be one of the lucky ones and feel like crap afterwards. It’s suppose to take several treatments to have an effect. I’m suppose to get a set of treatments once a week, so we’ll know if it is working in mid-October.

Still dealing with all the other stuff in our last post and a blood clot which is now four weeks old. Adding the acute gvhd on top of all of this is pushing things to their limits. So please send some positive vibes, a prayer, pixie dust my way, and Terri too. Not much else I can think of to say. As always, thank you for your support.  🙂

~ mark &Terri, Caitie and Kai

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

Wow… yesterday went as smoothly as a surgery can go. Got to the hospital at 5:30 am, registered and they had my paperwork. Went upstairs checked in… got called into the back. The new Ellis Fischel Cancer wing of the hospital and surgery ward is quite impressive. The had my paperwork on the bed and an order for my platlet infusion. Spoke to all the doctors and nurses that were taking part in this event. They had to rush things a bit to get the platelets in and me in the surgery room at 7am, and they pushed me in at 7:03. I took 3 deep breaths and was out.

Usually Terri is there when I wake up, but for some reason they wouldn’t let her, or something like that (the only snafu of the day). But the ENT doc filled her in about what happened and how it all went. A day later my throat still hurt like hell, but I guess it always did in the past. I really don’t remember. Anyway, they kept me in an “Observation” room overnight and Terri picked me up in the morning. More or less went home and slept for most of the day. Looking forward to talking again and should be up to full volume in a week or two. 🙂

– Mark

4:30 in the frackin’ a.m. we had to get up – Be at the hospital at 5:30 for surgery to start at 7am. I would love to know why they think that is a good idea. I think 10 a.m. surgery sounds just dandy! Anyway, we (unfortunately) have to repeat this surgery every 2 years-ish. But his ENT guy is great and it went really well. He came and talked to me and described exactly what he found down in Mark’s throat and what he did. (He found bumps [soo not the technical term], he removed said bumps.) Said everything went super-duper. Then I wait for someone to call me back to recovery. I asked and was told, “Oh, someone will come and get you.” Which never happened. That is my only grrrr about this. An hour and a half after I talked to doctor, I went and asked again, I get told, “Oh, he is getting moved to a room. You can meet him up there.” Okay, fine. Which I did. Got there and M is sitting up in bed wondering where the hell I was. First 6 hours, there was LOTS of pain (of course), but they have great pain killers which also took care of the pain in his back as well. So, score! He spent the night in the hospital (usually and outpatient surgery) just in case. Low platelets plus surgery makes for a cautious situation. But no issues other not being able to sleep well. (Does anyone sleep through the night in a hospital?) And was actually able to eat dinner (eggs, rice, jello). He tried out talking and there was a voice there. It was raspy, but it had some volume. Yay! So here’s to hoping the voice returns to normal (whatever that is these days) and we don’t have to do this again for 2 years, or maybe not at all.

-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

 

Update

Its been well over a year since I had throat surgery to get rid of the viral polyps growing on my vocal cords and the throat area above. But it is time and my platelet count is now steadily above 40,000. It bounces a lot between 45K and the high 50Ks, and even reached 62K yesterday when I went in to have my monthly IGG treatment. While there, my oncologist also said that I just pulled a muscle (and I am hoping he is right) and it would take up to a month to heal. Well its been two weeks, so by the time my throat is healed up, my back should be as well. All good things!

Throat surgery is set for May 19th at 7am… lol… clearly the person making up the schedule is unclear on how long it takes to get a platelet transfusion. My Doc (transplant doctor) said I could probably go without, but my ENT (throat) doctor doesn’t want to risk it and is keeping in the hospital overnight for observation. Caution is always a good thing, especially in my condition. I have gained 10lbs over the past month, although it is probably just fat. But I will take fat right now. Everyone needs some fat in their bodies, as it cushions joints and certain tissues and organs. And I had none left, which is why my body started burning up my muscle tissue.

photo 2 photo 1
(The red and purple splotches are bruises due to low platelets. And you can see how thin due to muscle loss.)

I am looking forward to talking again, even if it is for a couple of months. But who knows… between the new antiviral medication (to fight the HSV infection) and lowering my steroid meds, my donor cells just might kick the throat virus’ ass and send it into dormancy. My ENT doc thinks its a possibility. We’ll have to wait and see…  lol… everything about my post transplant is wait and see.

Bottom Line

I am no longer at ground zero, and it will be a while before I get back in the water. Physical therapy is helping, but is a slow process. The HSV infection is still active, but the new med is helping. My right eye is almost clear of it and my lip area is much better. So we will wait and see what happens until I see my Doc and the dermatology doctor on June 2nd. I will still have to fight off viruses and deal with the symptoms of GVHD, but I feel like my body is ready to make some positive gains. We’ll have to wait and see.

wait-and-see

The Truth is…

Sometimes I feel like something I read the other day by Elana Miller:

I’m lonely. It’s not so exciting anymore that I have cancer.I see people around me returning to their normal lives, and I don’t get to. I wonder if maybe I have to walk this path alone. If I didn’t feel so sick, and therefore emotionally hypersensitive, I probably wouldn’t care as much as I do.

I can’t explain it much more than that. I know everyone still cares. But sometimes it feels like people are getting tired of hearing our stories. It was all very exciting in the beginning and everyone was GO, GO, GO and Fight, FIght, FIght! And now it is just Meh. And I think that if people do think about us, they don’t know what to do or say; so they say and do nothing, and it feels like we are floating around through this alone. It just isn’t interesting anymore. And I might agree. I know most people think this, cuz I do, I wish I could just say, “Let’s get well already, okay? We had the adventure and I am ready for this ride to be over.”

P.S. The “I” in this is really “we.”

 

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

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

 

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