Saturday, March 25, 2006

is it time for bed yet?

I have a fear of going to bed, because of the pain-filled sleepless nights I've been having, so I'm post-poning going.

My visit with the doctor today was stressful, because everything ran late, and I was very, very anxious to begin with because I was starting the new treatment protocol. It went just fine, the IV didn't hurt, I had a great nurse, the infusion (fancy way of identifying way they hang the plastic bags of meds on the poles and dripping it into your body through an IV) I had the usual bone strengthening Zometa, which takes 1/2 an hour to drip, then a few minutes of a flush with saline, then they hang the other bag of the new Alimta, which takes 15 minutes to drip, another flush.....and then another flush, because after 30 oz of liquid in you the closest open door to a bathroom is what you head for)

I was given a beautiful scarf by a very special new friend. It belonged to her mom, and she and she sent it to me for comfort. I wore that around my neck today, under a jacket, and felt less alone, loved, and got many compliments. Thanks Lis.

UM Cancer Center is a bit overwhelming, because it is large (by compariosn to Traverse City anyway) The center itself is laid out very well, and everything in there is very convenient, but they do see hundreds of patients daily, so there is waiting.
The layout is great, the lab and xray depts are on the first floor, off to either side of the entrance, and the flow there is very good. Then up a floor are the doctor offices and infusion (treatment) areas.

As a routine when seeing your oncologist, you get bloodwork done. They need to know that your your organs are all functioning properly, and that there is nothing to contrindicate the treatment going forward. Then you see the oncologist, for an exam and talk to again make sure you are doing well before proceeding. (well, if you were getting an infusion a few times a week, you'd not be evaluated by your doctor each time) I will get my drug only once every 3 weeks, so I just see him each time I come. There was a delay today simply because they were running late, (only an hour, nothing horrible) but I was so anxious and had a splitting headache from the tension. My blood pressure was 159/? when it usually runs 115/?. It was anxiety. Last time I was in that office I received the bad news about the disease progression, so my body remembered that and was worried. (SEE HOW YOUR THOUGHTS AFFECT THE ACTUAL ACTION OF YOUR BODY?)

We had a long discussion about the pain issues with my right leg. As you may know if you've been reading my notes, the steroid I was given in prep for radiation dramatically reduced the pain due to inflammation. The problem is, that being on this steroid long term can have serious negative complications, so they don't like to use this a pain reliever, even though it acts as one. Some side-effects are stomach problems (ulcers), bone loss (which I sure don't need since I have cancer in my bones), and a much higher risk of infection (a serious problem for a cancer patient due to their already suppressed immune system, and due to the lowered white count they often have due to chemo). So, the trick will be to find the right pain relief for me, and to get me off the steroid if at all possible. I want to be wise and not create problems I don't have now, and sure the heck don't want to have complicate things. Roids also cause problems with mood and anxiety and general crankiness. (roid rage, right? .... though this isn't THAT kind of steroid)
I can't bear it if 2 people are talking at the same time, I just can't process it all, and I get annoyed at the dumbest things. (for example my neighboring apt has a sign on the door that says "I love elephants" . sheesh)

So, the plan is to make adjustments to the pain meds, and then slowly step down the steroid.

My doctor said "you look great". (medically speaking, people) I said that I feel good....and that one of the most frustrating and difficult things about being disabled by the pain is that I'm sitting in a chair, in an apartment, just wasting the time I have left (we all have limited time, y'all). I don't want to sit and waste it. And otherwise I feel GOOD.

I was also told that my fracture just might not ever heal because the bone is compromised by the cancer, and that the pain is caused by the inflammation brought on by the fracture to areas of muscle, tissue, nerve, tendons, and whatever else there is.
My right ankle is swollen, and I feel like I'm about 90 sometimes. You should see me shuffle around when the pain is bad.

And today, since the appts all ran late, I missed my afternoon dose of pain meds, so by the time I got home at 8, I was in extreme pain, and was literally crying with each step from the car to the lobby of the building where I left my Go Cart. Josh took me today, and was a great help, but I know this is hard for him to bear, he felt so bad when he saw how much I was hurting. But I got settled in and felt better, and Jill came over and shared a coffee with me, and I whimpered and cried on her shoulder for a while and we watched Nanny 911 and made fun of people. Sometimes there's just nothing better than making fun of others. (if done nicely, ha ha) And when I saw my right ankle was fatly swollen, and how my calf has shrunken somewhat from underuse.... I just cried again or more. I used to be perfectly healthy, walking, hiking, kayaking, biking, and now I use an old-lady footed cane and drive a frickin' Amigo. I hate it hate it hate it. DARE me to smile and be chipper about these changes.

So I'll be again adjusting medications, and pray I'm getting it right. I have one of those granny pill holders that holds a week's worth of medications, compartmentalized into times of the day. I have a pharmacy in my kitchen cupboard. All legal.

I should go to sleep.

hope the people who need to read this most are reading


At 3:10 PM, Blogger Lynda (Laurianne's Sister) said...

It sounds like you have a good support network. I am glad that Jill was there to cry on your shoulder. And I occasionally enjoy making fun of people on TV. They put themselves in the position. Sometimes as bad as you feel, you can find someone that you still can say, "I am glad I am not like that!"

I hope one day you can get back to all the things you once enjoyed doing. It is amazing how well we can adapt.

At 5:58 PM, Anonymous Sister M said...

Thanks for the update, best wishes, Marsha


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