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


Family-clip-art

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

20. January 2013 · 2 comments · Categories: Information · Tags:

…as Mark likes to say.

It is hard to decide where to start so I will just introduce the nitty-gritty.

Mark and I have lived with this so long (or so it feels) that I am not sure who I have or have not gone into details about it. Mark has been diagnosed with Myelodysplastic Syndrome (MDS) since 2005. For him it has been a slowly progressing disease (although it isn’t really a disease, it’s a cancer), and we have been dealing with symptoms as they arise and waiting for the doctors to tell us it is time to begin serious treatment. Well it is time.

In about 6 weeks, Mark will be having a Stem Cell Transplant (Bone Marrow Transplant). The specialist for this is in St. Louis at the Siteman Cancer Center (Barnes-Jewish Hospital) and we will be there for about two months. It involves chemo, the transplant, and up to two years of immunosuppressant drugs and more or less, quarantine. So yeah, fun times.

Now we are trying to get prepared for that. Mark is trying to keep a very zen attitude about the whole process, and I am extremely optimistic that as much of a pain in the ass this whole thing will be, ultimately every thing will turn out just fine. None the less, we need all the positive vibes you can send our way. And so that is what is going on in our lives now. When Mark was first diagnosed with this, we thought that transplant was imminent and started a blog then. You can read about the start of our journey there.

We have set up this blog so that we can keep everyone up to date with what is going on. I am also hoping by posting to this blog, someone else who is going through the same thing will have some idea what to expect, because it has been hard to find out info from the patient and family side of things.

There are some links on the sidebar to give you more information for now. But I will continue to update with whatever comes up and more details as they happen.

Love to everyone and consider being a blood marrow donor.

– Terri