Wednesday, July 29, 2009

Long Sobering Day

My husband and I arrived for our appointment with the radiation specialist at 10 am. I will be receiving 14 greys (units) of radiation over 4 days. All areas of my body will be zapped except for my lungs, for which they made a shield. The laundry list of possible side effects, short and long-term, overwhelmed my husband and me. Basically, any and every organ can be affected, although they assured me that patients with solid tumors receive many times more radiation and do just fine. I held back the tears until we were alone. I don't like to display emotion in front of doctors.

Next, it was onto the lab where they drained me of 30 vials of blood. This was an all-time high for me, and made me a tad woozy. Time for lunch! We met with Michelle, a friend of our daughter's from our Costa Rica days who's now at Tufts. Eating helped restore some bodily fluids and gave me an energy boost. Just in time to meet with my transplant nurse, who gave us an outline of what to expect once I'm admitted to the hospital. The highlights are as follows:

Enter Brigham and Women's July 31 for catheter placement and room assignment, which will be in the intensive-care transplant pod. Can't wait.

Two days of Cytoxin which can be, you guessed it, toxic to a number of organs, specifically the bladder. To ward this off, I get pumped with fluids and spend 2 days tethered to the toilet.

TBI the next 4 days. Watch me glow.

While I stoically undergo this draconian process, a 44-year old man in Europe, possibly German, will be receiving stem cell stimulating injections for 5 days, and then spend hours tethered to an apherisis machine which will collect the stem cells that will potentially save my life. This is what I plan to focus on during my preparation. My nurse misted up; I was strangely calm, thinking about the altruism of this stranger.

We had to wait an hour to see my transplant doctor, not easy. I tried to read, with no luck, my anxiety scraping the ceiling tiles.

Finally, we saw the doctor, who gave us the skinny on all the risks (quite serious), the statistical realities, the rough course I was about to endure. My emotions had apparently been drained along with all my blood, because I calmly signed the consent forms, talked my way out of a bone marrow biopsy, and referred to the many notes I had taken two years prior, quoting the doctor and generally commandeering the session. At which point my doctor referred to me as as a cockroach who just keeps surviving whatever evil clones and toxins are thrown my way. These three years have certainly been Kafkaesque.

One more meeting, with the social worker; more tears but not mine. Lest you think I'm a zombie or worse, merely devoid of feeling, or worst, suppressing my emotions and in danger of serious psychic injury, let me reassure you I am none of the above. At dinner with old friends visiting from New York, I broke down when dinner wasn't served in a timely fashion, blubbering like a baby in the restaurant.

Today was much better. I had a good night's sleep, ran with my friend Dianne (she biked), relaxed, chatted, accomplished a few things, ate well, and kept my thoughts off the month ahead. I plan on getting a good night's sleep, and spending tomorrow at home doing not too much, except the necessary packing and final arrangements. We'll go out for a family dinner, and I'll eat all the things I won't be able to have for the next month/3months/year.

Then I harden my shell, go without food for days on end, metamorphasize into a young(er) male-blooded European and with luck, love and medical know-how, survive a long long time.


CollinsParents said...

PJ - my wife and I pray for you.

Anonymous said...

Stay strong. Chant. Pray. Be optimistic. The more positive you are, the quicker you will get!

Anonymous said...

God speed. I will be thinking of you.

Sue L said...

Not just ANY cockroach but a Madagascar Hissing Cockroach! These are actually non-disease carrying and are kind of pretty. Nicer than the ones here.
I'm praying for you and want you to be able to do Arts in the Dark w/us thru a videoed presentation! So, get better soon, put on your armor, gather your swords and fight the good fight!!!

Ronni Gordon said...

Yuk to the cockroach. Couldn't he come up with something else, like a cat with nine lives? Then you could have put a cute kittie up there.

Sounds like you have a lot to face, but you're strong and you can do it!

Don't worry about the "intensive care transplant pod." As I said before, I loved it over there. You get a lot of attention and the nurses are terrific. Plus if you have an appetite they have a lot of good snacks that other pods don't have.

Ann said...

I'll be thinking of you and sending you lots of healing thoughts. Don't forget to pack plenty of dangly earrings.

Jamie said...

PJ - Thinking about you...


Anonymous said...

PJ since John had his auto at Brigham and Women's and Dr.Friedman was his doc and I visited the allo pod, I know exactly where you will be and am going to pick a room (first on the left) to focus on and picture you there and send you wonderful thoughts. It doesn't matter which room you are actually in, this will make my visiualizations easier. The Cytoxan isn't as bad as you'd think; they have great drugs for the side effects. They have drugs for everything. So just keep up your great attitude and know how many of us from LLS are pulling for you. Love and hugs, Julindy

Diane said...

God speed, my friend. You have done it once, you can do it again!

EGlencross said...

I'll be sending thoughts of strength and encouragement to that mystery european "possibly german" man out there to pump out only the best and the brightest for you. When things are bad try and visualize all of us out here grinning foolishly thinking of you, with all our finger and toes crossed.

ree210 said...

Hi, my name is Maria, and i live in RI. I was reading your blog and saw that you go to Dana Farber and Brigham and Womans. My mother, 56, got diagnosed with AML last March. What a horrible thing to hear about my mom. I couldnt stop crying. She had a stem cell transplant in August 2008. She was up at Brigham and Womans. what a wonderful hospital. In dec my mother realized a lump on her leg. Another biopsy and we found out she relapsed. Here we go again. She had to get more chemo in Jan. BACK IN REMISSION! and the lump on her leg came back as sarcoma. A rare cancer. She had the lump removed in March. She had to wait until her leg healed before 6 weeks of radiation. My mother is up at Dana Farber today for a check up with Dr Rout because she has blisters from the radiation.
I pray you get through this. I am my mothers primary caregiver. My brother works alot, I'm a stay at home mom so i have the time to take her to her appointments. She was living with us, but she wants to be independant again and she is trying to live back at home. Even though my son never wants her to leave!
Hang in there, and if you ever need to talk. my email is

God bless

Jim said...

A lot of wonderful people are pulling for you, PJ. You have a strong choir that's starting to sing and pray.

Anonymous said...

Big hugs- glow baby glow- its getting rid of the yuckies!

Thank you for your honest, open, and personal posts.

Keep on, keepin on! YOu are amazing.