Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Thursday, October 30, 2008
Hooray for Today
Weight-117Lbs (53 kg or 1 lb less than Heather, my base weight), Daily Meds-24, Pain meds-30 mg, Temp- 100.1, 98.9 & 99.6 liquid, 1 cp. Coffee, 1 cup of tea, 1 glass vitamin H2O (ok, I failed drinking today), Food- 2 honey buns (Again, we all have weaknesses), 2 pieces wheat toast, 2 choc. Chip cookies, one turkey, cheese and mustard sandwich on a bulkie roll, and spaghetti with meat sauce( I had a busy day and didn’t pack all that much food).
I‘m sitting at Dana Farber, waiting, again.
I’ve decided after my experience on Monday that I would take a preemptive strike against sitting among the sick masses who cough and hack and get a pager.
I required two pagers today, one for my labs to be drawn and one for the doctor. These pagers set me free from waiting in the overpopulated waiting room and sent me to the more informative library.
Aaaawwwww. So much more peaceful.
It also helps me maintain my drive to be isolated. It’s a little hard deciding I’m not going to the mall on the way home to buy a nice new pair of shoes, or to the basically empty bookstore across the street, when I’m being forced to sit among hundreds of sick people.
Do you get what I’m saying? It is a little hypocritical.
DF did send someone with a great contraption to clear the air (See case and point in the picture). I was really amused that the portable gadget existed so all the cancer patients don’t really have to breathe near each other.
Good news is, I’m getting my line out today!! Yes, that terrible appendage that tries to sneak and hide in my armpit every morning is gone. I don’t have to live in fear of septicemia or hold a grudge against the dumb dressing change nurse. I won’t have to take 10 minutes covering it with a gallon freezer bag then taping it to my chest before my shower. HOORAY, today is a good day.
I did mean to tell everybody the best method of protecting your line. I recommend big tegaderms with gauze pads, tissues, whatever over the dressing to protect it from getting wet. If you don’t have the hook-up for tegaderms, I seal the line in a plastic bag (it’s really not a big deal to keep your line dry), then I fold the bag over the dressing and tape around the outside of the bag with silk tape. DO NOT TAPE THE DRESSING.
Do not use stick and seal. It really doesn’t work.
I did have a little bit of a rough night. I’d spiked temperatures sporadically all day, but never over 100.2.
If the phone would ring across my bed I would look at it and try to decide if I had the energy to leap across the king size bed for whoever was on the other line. Generally, I didn’t and let the answering machine pick up.
X woke up with a croup cough at 2:45 am. I had to get up and sit with him in the shower, get him back in his PJs, and give him some cold medicine with mom’s special TLC.
I think the Mom TLC is really what does it.
I’ve just finished seeing my hot-shot Dr. Alyea. This is how he was first described to me when I was being referred. I remember pouting inside and thinking, “But I don’t want some hot shot doctor. I want a down home boy who will remember who I am.”
But I kept my mouth quiet. I’m told he’s very good.
He is, maybe the best. He’s grown on me and I genuinely like him, Melissa (NP) and Pat (RN transplant coordinator). I think I’m in good hands. At first, I thought A was a little cocky and cavalier, but I know the success of his patients is personal. He will obsess about any problem and find the best answer. I like that. I’ll take it. He is a good guy.
Any patient of his is being taken care of.
His professional opinion, with all his education backing it, is that “I look great.” My labs, again, are fabulous.
No, I didn’t get copies, but everything is normal except the white and red counts.
I’m feeling okay today. He ordered me a chest X-ray because of my exposure to my son.
Then I went to radiology at Brigham & Woman’s to get my line pulled. I wish I’d brought my camera to show you the simplicity of the procedure. I was given the “PA of the year” and Patrick got to be my nurse again (lucky #3, holler).
As far as having a line pulled, it doesn’t hurt. Take a deep breath, close your eyes, distract yourself. If you ask for local anesthesia, it will probably hurt more. It stings.
As far as the staff at the Shapiro Family Center and the Radiology Dept., they remembered me from my first trip when I left in tears because of my shingles.
They remembered my from my second trip when I was going in for my transplant.
And they remembered me and celebrated the end of my chemo with the removal of my line! Where are you going to find treatment like this? I like everybody I’ve ever met there.
I nominate the radiology dept. at B&W for Rock Star Staff of the Year. They’ll win, since I just made this award up.
They should post this on their wall to remember that their patients love them.
Bring it to your administrators people and ask for raises.
The three hour trip home was uneventful. X bought me Pictionary Man yesterday, which I’ve been wanting, and we were able to play it after dinner.
This is my life today.
One last thing everybody, My hair is on my way out it can take about 21 days to start to lose your hair. I had estimated 24. Please consider speaking to your children about this. I’m sure you have told them X’s mom is sick. Becoming a bald woman is a very concrete sign for a child that something is very wrong. This symptom correlates with the 4-6 year old age groups method and structure of thinking. Please talk to them in advance and answer questions.
I do not mind kids pointing, staring, and asking loud questions. Do not ignore the subject and get embarrassed. Speak with them or bring them to me. The next bald person they see could be a little girl with leukemia in their second grade class. I’d much rather their questions fall on me.