Chemo sucks

Hi everyone,

I started the Vidaza treatment January 16 for the MDS. This is supposed to raise my blood counts, in the long run, and reduce my dependence on blood transfusions. Of course, in the short run, it reduces my blood counts even more. (?) and has a whole host of other fun side effects.

I, with the help of my doctors at UNC, arranged to get the Vidaza administered here in Leland by Dr. Arb since the treatment is supposed to be M-F one week and M-Tues the following week. I won't go into the difficulty of doing that (can you say red tape!), since I used to see Dr. Kotz at Hanover Medical in Wilmington, but anyway..... I am now a patient of Dr. Arb for local treatments like this.

The doctors kind of minimized the side effects of Vidaza. Seems like that always happens.... I started with sub-cutaneous injection of this med. I have one arm and a belly to use as a pin cushion for this fun. Two shots per day. I got the shots in my left arm (can't use the right b/c of lymph node removal in 2007) and then did 2 days in my belly, for a total of 4 shots there. My belly turned black and blue, with red circles around it; it was disgusting!!!! Anyway, after that I decided to go to the infused Vidaza that goes through my port. Of course, that causes more nausea (I already had a lot of nausea). So, I made it 5 days and then asked Dr. Foster if we could call it done. He said yes, thank God! I felt just as bad as I did after the Adriamycin that caused this blood problem in the first place. Did I mention I hate chemo?!

I am supposed to do the Vidaza 3-4 cycles to make sure it works. But life goes on, right? Geoff and I got tickets to see Elton John at the RBC center March 16 and I will NOT be doing Vidaza that week even though I am currently scheduled to do so. I'd be puking the whole ride up to Raleigh otherwise! So we may have to be a little bit flexible with the Vidaza scheduling. I have mixed feelings about bothering with this to begin with.....no treatment has worked for me yet, you know?

So, I went to get my blood checked last Friday the 27th. Geoff and the girls were in the car headed for Maryland for Hope's rhythmic gymnastics meet. Of course, I needed a blood and platelet transfusion. My platelet count was 7!!!! It's supposed to be around 140 but has lately been 25 ish. At 7, I was at risk of bleeding to death internally, around the brain, or in the gums. Thank goodness, the only SE I saw was red dots all over my legs.

Anyhoo, I drove myself to the hospital for a transfusion, thinking I'd be home that night. Instead, I got admitted overnight and they didn't finish the transfusion until after 3 am!!! I can't say it was restful, because every hour or so they had to change bags or check vitals or whatever. Anyway, I got a platelet as well as a blood transfusion. Unfortunately, the platelets only last 3-4 days, but I should be good to go despite that for a couple of weeks (fingers crossed!)

So, my life has become fairly slow. I spend a lot of time in our new (awesome) Tempur Pedic bed with the adjustable mattress!!! (I was so uncomfortable at the hospitable in the lousy bed it wasn't even funny). Now, I can raise the mattress to read or watch tv, or whatever and my back has been loving it.

I walk the dog about a mile most days. I try to do yoga or pilates for about 30 minutes a few times a week. But I am out of breath a lot. I have not gone to the pilates studio in weeks because I don't drive very much and I don't think I could make it through a 60 minute class. I am very tired and don't cook at all (hint, hint, we need meals please!!) I am glad we went to Paris when we did because the Lord blessed me with stamina for that trip and 2012 ushered in a new phase of health for me. I am ok with whatever he has in store for me though.

The girls, on the other hand, are not ok with this. They had a bit of a "breakthrough" in their grief therapy the other day with both of them crying.... I knew they were holding their emotions in. I think they've noticed how slow I've gotten and they realize that they may lose their mom. Very sad.... all I can do is talk to them about it and let them attach themselves to me. Hope in particular wants to be with me all the time when we are home. Ugghh. Prayers please for our girls to find God in all of this mess. I fear 2012 may be a tough year for the Hosfords.

So that's what is going on with us... hope you all are well!

Love,
Sofie

Hello 2012!!!!

I hope that everyone had a wonderful Christmas. We certainly did. I am so grateful to my sister in law Amy for allowing me to sleep and/or rest in her guest room day after blissful day. I had a doctor's appointment at Dana Farber on Dec 22. I was supposed to have doc appointments in Chapel Hill on Dec 16, but since we just flew back from Paris on Dec 13, got in late and were seriously jet lagged, I just could not handle the 6 hour (round trip) drive. Anyhow, considering the 10 mile drive to Dana Farber and having seen Dr. Winer in the past, we chose that option. It was a good thing we did too-- my blood counts were horrific. Hemoglobin was below 8, platelets were 24 (having dropped from 45 on Dec 5) and my neutrophil and white blood cell counts remain low. Long story long, I received my first platelet transfusion, which lasts only 4-5 days, and a whopping 3 units of blood. Nevertheless, the anemia left me tired over the break. I am so thankful that (knock on wood) I have remained infection free with no immune system.

However, Paris was awesome!!! God blessed me with sufficient energy to survive long plane rides, hours in airports, and a husband who loves to use his feet as the sole means of transportation while on vacation. (truth be told, I didn't object). We saw: the Eiffel Tower at day and nighttime, Notre Dame, the Louvre, the Rodin museum, Sacre Coeur, the Church of Saint Louis, the church St. Eustache, the church St. Sulpice, the church St. Germaine de Pres, Versailles, as well as numerous cafes, restaurants, and stores. I must admit -- seeing Paris on foot allows you to appreciate the architecture and the beauty of EVERYTHING Paris. They don't even build ugly bridges!! The only sight we couldn't get in to see was the Catacombs (it closed literally in our faces).

Back to reality. I am hanging the carrot of further travel to keep me marching on. My dear friend Wendy, who watched our girls while we went to Paris, and I talked about a late spring trip back to Napa. Not too much for wine tasting (I barely drink wine these days) but for relaxation and spa treatments, and enjoying the Milliken Creek inn. We will see. First, I have to pay some bills. Oh yeah, and start that decitabine treatment for my new cancer. Oh yeah, that. It will involve 5 consecutive days out of every 28 days, for 3-4 months. I think I will get treated here but keep my docs in chapel hill. Do you know my oncologist and hematologist in chapel hill each spend about 30 minutes with me, per appointment? That's just talking time!! Those are some docs with good bedside manner! That's why we make the drive.

This is long. I will post photos later. God bless you all and I hope the post-holiday hangover doesn't hurt too much!

Love,
Sofie