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."

Get a playlist! Standalone player Get Ringtones

Tuesday, June 15, 2010

If you can't beat 'em. . . .

I just got done with the gurus in Boston. 
That'd be Dr. Weinhouse, my pulmonologist at Brigham and Women's, and Dr. Alyea, my transplant specialist.
I went prepared with my own questions, thoughts, and ideas. I also brought along my parents who are like two other patients themselves, in a good way.
We made sure all the bases were covered. 
I've gotten the green light to wean myself from prednisone. 
According to Weinhouse, There is no longer any benefit to my lungs, and hopefully, decreasing this will allow more graft activity to fight my growing cancer.
I'll start alternating doses daily between 10 and 5 mg a week from Weds., then decrease to 5mg a day for a week after that. I'll watch my symptoms and see how my body adjusts to the decreased dosage to determine when I will completely remove myself from the prednisone, but BOO-RA I will no longer be taking steroids.
I'll continue with the photopheresis and will decrease the frequency to once a week starting this week, week twelve, which follows B&G's protocol.
Good news, that I'd forgotten, is that towards the end of therapy, the frequency can be extended to once every two weeks or once a month.
Hoo-raw for that too.
Dr. Alyea and I spoke at length before he made any recommendations.
I am certainly at a cross-roads in treatment.
I think anytime there is a recurrence or even an occurrence of cancer there is a cross roads.
I'm lucky I have the information and the confidence in the information I have to make educated, guided decisions with confidence.
I follow my heart and gut if I'm having trouble receiving an answer from my prayers and dreams.
I have decided to try a gentle course of chemotherapy that will not be as toxic as previous regimens in hopes that it will produce the same results that previous regimens have without the near fatal side effects.
What I've had going for me all these years is that my cancer goes into remission easily.
It just never stays in remission.
Now we need to take into consideration the sensitivity of my lungs and ask ourselves if what I've been experiencing is really "bronchiolitis obliterans" or if it was some sort of pulmonary toxicity from the chemotherapy or even "radiation recall," a syndrome that can happen during chemotherapy whereby side effects of previous radiation therapy can be recalled with a vengeance.
I didn't know this existed.
The primary site of my pain, my fibrosis, my pneumothorax was in the area of my lung that had been radiated several times previously.
I love seeing Alyea.
He comes up with all these ideas and diagnosis I've never even heard of but certainly fit my patient picture. 
I wish I could just hard wire into his brain and bring his thinking everywhere with me.
He seemed almost relieved by my choice to take the route I'm taking.
I know we both have very real doubts about my ability to survive another transplant, a chord blood transplant, or even harsh chemo regimens.
He was incredibly supportive of my choice, which makes me wonder why this possibility of treatment is not proposed sooner or more often.
The only reason I started to consider it was because I had heard of man other patients who had taken this route via the blogosphere.
Before as a provider, I thought treatment was all or nothing, in it to win it, do or die. There was no if you can't beat 'em, join 'em mentality.
He kept telling me how many options I had with this route. We  talked about LDH, SGN-35, and something else.... Imatropins?
What I'm leaning towards is anything that can be administered locally at Norris Cotton.
Alyea recommended starting a single therapy chemo SOON, as did Dr. G and my mother.
They all think I will feel better once this cancer has been kicked in the ass.
I think I don't feel that bad.
Yes, I am tired.  I am in pain. I'm bloated and I have trouble bending over or turning around, but that's no reason to rush into chemo is it?
I've always had a fear of chemo.
When I was first diagnosed I let staging drag on for four weeks to postpone chemo.
I knew then, like I know now, the cure kills as easily as the cancer.
But chemo SOON it is.
Alyea's #1 choice is vinblastine. I took this before in May 2006 as part of the original ABVD therapy that puts 75% of Hodgkin's patients into remission.
I remember this therapy.
It wasn't bad at all. I felt like a had a mild hang over for a week after receiving my infusion.
His #2. Is doxil. I took this chemo this past fall. If vinblastine proves to be too weak this could be added alongside.
I'm not a big doxil fan. It has the side effect of "mouth and hand disease." That's sloughing, painful ulcers forming in your mouth and hand.
I can confidently say, joining the big girl's club for a while was fun. Learning to accept and love myself and my body as it is was an important life lesson, but I think with the lack of steroids, the death of the large tumor in my epigastric region that is making me bloated, distended, and pregnant looking along with the addition of nausea, vomiting, and ulcers I won't have much of a problem dropping some poundage.
What a roller coaster.
But life still goes on, we're having our first soccer practice tonight after having to cancel our first two due to rain.
Tomorrow J, X and I are off for a family vacation to Washington DC, mooching off my momma's success and staying at a posh hotel while she toiles away in conferences.
We can't wait, it's coming at the perfect time.


1 comment:

Anonymous said...

I hope you all have a wonderful mini vacation. You certainly deserve some 'down time.'