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