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


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.


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.

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

The Good News

I still have that damn virus, but it is under control… just not dormant like we want it to be. So they cultured it again and are testing it to see what strain it is. Apparently, there are several subtypes and only a certain type of medicine will finally “kill” it. Could they have done this earlier? Hell yes, but the insurance company would not pay for it unless we jumped through these hoops first. The right medications are more expensive… and we all know they want to save every dollar they can. I don’t get their economic sense, as it seems it would cost more to do it this way, instead of the “right” way that my doctors would have done it. Anyway…

plateletsOther good news! My counts are finally starting to make positive ground. My platelet count, the one we have been so concerned about has hit an all-time high, 88,000. So we are half way there. Hopefully! It will still take another year or longer for them to become truly “normal”. So it’s going to be a while before I actually am healthy and well again. Which leads to the “not so much” news part of this update.

The “Not so Much” News

While in St. Louis, they did a Bone Density test. Because of the steroids and chemo I have developed Osteoporosis in my spine and hips. Apparently, this is not just a “mild” case, like all the other complications that I have gone through over the past year +. My spine is so brittle (fragile) I have to go see a specialist and I will simply quote the report I received: “WHO Classification: Fracture Risk – High”.

SpineImagebigSo what was supposed to be a two hour appointment took 8 hours and I got my first treatment of some drug to pull Calcium and Vitamin D back into my bones. Unfortunately, it is not just one treatment and I’m back to new.

Just like Physical Therapy was going to take six month to get me back in shape, this is more like a one or two year process, if it works. My doc also said if it did not look like it was making progress they might have to use a “black box” drug. I don’t think I want to go down that road.

The “black box” is a familiar idea in physics, otherwise known as Shrodinger’s Cat. Where they put a cat in a black box and the question then becomes, “when they open the black box, will the cat be alive or dead.” You don’t know until you open the box. So the treatment drug could cure my spine or kill me. And there is no way for them to tell which it will be. That sounds like Fun! Let’s play Russian roulette with one bullet and the gun is a sawed off shotgun with two chambers.

I don’t know any more than that until I see the bone specialist. I don’t have an appointment yet, so everything is up in the air. My doc said two things very sternly, “Be very careful” and “Don’t Fall”. That tells me actually quite a bit. I do NOT want to become a quadriplegic.

I may be “cured” of MDS, but these complications from the transplant are a serious pain in the ass. And remember, I still have GVHD and will for the rest of my life. This only adds another large, and serious, and unpleasant side-dish to my plate. I’d like to say I can see a silver-lining in this new complication, but I don’t think there is one.

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.


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



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.


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.”


For Starters

There is no obligation… no guilt trip… to help us out. Please only help us if you really want to.

Mental Health Day task

If you are willing, and able for a Terri mental health day is to offer to check in on the kids and me when Terri is at a local hotel or no further than Kansas City. All that is involved is to be available just in case I get a spontaneous illness with a fever above 101.5 degrees. If that was to occur, then I would need to go to the emergency room and have you call Terri to pick up and be with the kids. We don’t want to leave them alone under those circumstances. We’ve done this twice before and it went over smoothly, if you can call such a thing. We would give you a couple of weekend dates and you can choose what works for you. If Terri does not go on her scheduled break, then you are free. This is what we need the most. One weekend a month, a different person each month. I hope that clarifies this task.

Help with lawn and Garage

The lawn is done… the trees could use some trimming so they do not rub against the roof, that is pretty much all we needed for the yard. The Garage just needs to be straightened up and a small bit of organization. With a couple/few people it would be done in a couple of hours. We promise to feed you, and provide drinks for you. Plus we could catch up.

Social Contact… being alone sucks!

Truly, all I need is someone to talk to via email. I really can’t talk as most of you already know because of my vocal cord polyps. I am the same person you knew before, aside from being bald, which I hate, but that is life. No need to shy away… I have no plans on dying, I have too much to live for. I still think pretty well even through all the meds and chemo. I’d rather email than FB because FB warned me that I was improperly using the IM feature and they would cut me off. So screw FB! Soon Physical Therapy will make me strong enough to go out to lunch for those of you in Columbia, otherwise its still an email. I really tried to IM a couple people who are good friends, but I cannot be online all day to chat. Perhaps it is self-centered of me, but I’m being realistic about my limitations. I think that covers it… I hope the clarifications help.

Thank you all very much… for those sharing positive vibes, prayers, pixie dust and knocks on wood. They do give me strength to carry on and fight through the complications.

~ Mark

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


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


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


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.


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


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