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

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

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

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

Please read this article.

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

 

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

Help!?!

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

Social Invitation

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

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

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

A Physical Invitation

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

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

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

With much love and hope,

Mark and Terri

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21. February 2013 · 3 comments · Categories: Stuff to do · Tags:

We all know what chemo does to you. So why not make the most of it. As a young ‘un, I went through phases as we all do. Hippie, punker, (cough) professional. Through all of these phases, I’ve always liked my hair. Vane as that is. I really hate the “professional” look, and once I land a job I let my hair grow out.  I’m a redhead and damn proud of it.

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When I hit 30ish it started to go white… heredity, my mom did as well… at least I was not going bald. As I said, I like long hair, so those punker days with short hair were short lived. I tried a “mohawk” then, but it was pathetic. I couldn’t shave my head… that would just feel wrong.

Knowing a month ago I was going to once I began chemo, I had to do something DIFFERENT.

When we told our kids I was going to become bald for a while, it shocked them, but I lightened the blow by telling them we would have a shaving party and give me a mohawk. This time I was going to shave my head. I totally empathize with women going through chemo. I just don’t want my hair to come out in chunks. I’m sure all my fellow males are shaking their heads. But most of you are bald anyway… so shut up! LMAO. Anyway…

IMG_0165Kai thought it was a cool idea, he has long hair too (that is UNUSUAL in the midwest, he’s in 4th grade). When it came time to shave my head he kinda backed away. Bummer… I think it is becoming real to him, Terri has other opinions. Caitie joined in as our videographer. She helped me spike my hair. It was fun for her. I’m really glad, cuz this has been hard on her. She understands.

So we are going to make the mohawk really fun, spike it right… add some colors… We’ll add links as the week goes along.

You can view several more pictures from this day on my Flickr account.

On Saturday we took it up a notch… See the Flickr set Punked.

 

As Mark and the family gear up for the 27 Feb procedure, we’re setting up a calendar where you can volunteer to help with various activities: from giving Terri or my parents a break to playing laser tag with Mark. Okay, maybe not so much the latter. But you get the idea.

The page will be going live in a week or so through CaringBridge.com where we’ll outline all the things you can help out with.

To prep for this, we’re asking anyone and everyone to please sign-up today at:

http://supportplanner.caringbridge.org/planners/helpingmark

Once you do, you’ll be able to volunteer for the activities once we create the calendar. But if you can do it now, it’ll save you a lot of time in the near future. Please also check out the Ask Jeff page for future updates and announcements.

As always, the entire family thanks you in advance!

-Jefflogo-caringbridge-large

laser

As many of you know I have a rather horse voice, Neaaa… that should be hoarse. Anyway… one of the many problems with having MDS for me is that my immune system is shot. MDS is a weird cancer, it affects each individual differently (perhaps why they call it a Syndrome). So for me it impacts my white cells and platelets greatly, while my red cell count is just below normal. For example, you probably have a range between 4.3 – 10.8 white cells on a lab report, where my white cell count is about 1.5 and my platelet count is around 50 (you’re homework is to look up the range of normal for that yourself).

Anyway, back to the horse. In 2005 I got Scarlet Fever (yep! how weird is that) and the doc looked down my throat and said I had growths on my vocal cords. Wonderful! He said lets see what those are… cus they don’t belong there. Long story short. I have a virus, most of you probably have it to but your immune system fights it off. Mine can’t. This virus grows like a wart and this is a good analogy. When you have a wart, say on your hand, you put some medicine on it and it slowly goes away. Perhaps, you go to a doctor and they freeze it off. Well that is what they do to me.

Except it’s on my vocal cords… mmmm yeah. So every 18 months or so, I go in and they use a CO2 laser to burn them off. This requires a platelet transfusion, general anesthesia, placing a tube down my throat, burning the growths away, and who knows what else; cuz I’m not awake at the time. Fun times! I can’t speak for a week, and well… it leaves behind scar tissue as it heals. So much for singing!  No big deal… This will be the 4th time.

I do have to do it now, because during the transplant I won’t have an immune system at all for a period of time and they will grow like weeds. That would not be good. Get the Round-Up. I also need to heal for 3 – 4 weeks before the transplant so the open sores don’t cause an infection.

I’m not really different from other people with MDS. They have their problems too, most are just different, many are worse than what I have to go through. This is just my wonderful variation. Oh well… but if you have a minute on Thursday, send some good vibes my way. ;P

Love ya all!

– Mark


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Step whatever out of whatever.

This step – tell the kids. The kiddos, they are 9 and 11, have known that daddy has been ill. That he has a “sickness”. That he catches bugs easily and sometimes gets really sick from them. Recently we have had a couple of hospital visits for two different viruses, because they knocked Mark on his ass so bad. But they saw what it was like in the hospital, and that the doctors and nurses gave him medicine and took care of him, and he got better. And most importantly, he came home.

So Thursday night we sat them down to tell them what is going on. Different conversations with each child, since their personalities are so different and the way they react to things is so different. The 11-year old girl child wants and gets more details. The boy, not so many. You give him too much information, he starts to tune out. So they got a brief explanation of what MDS is and why it is a problem, and what a stem cell transplant involves.

But they both got the same information. It is time for the doctors to start trying to cure daddy’s sickness. And the basics of what that will involve. The hardest part for them is the fact that we will be separated for 2 months. The boy was very accepting of what was going to take place. The girl, a little scared. And we told her that was alright to be scared. But we assured both kids that although this was going to be hard, it was going to be okay. Everything was going to be alright. Keeping on the positive side… Daddy was going to be better and healthier than he is now.

There were some tears, lots of hugs, and snuggling. They are already familiar with using Skype and video chats. So they would be able to “see” us every day. I promised that I would come home for visits when friends of daddy’s came to see him and that I would occasionally kidnap them for a weekend to take them to St. Louis so they could visit daddy in person.

We also sent an email to their teachers and their principal, letting them know what is and will be going on. Asking them to be understanding and supportive, and to provide comfort if needed. We heard back them and it has been very positive.

-Terri