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.”

 

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