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."

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Wednesday, December 15, 2010

Me and My Disease

My Hodgkin's Lymphoma and I have a special, love-hate relationship that I doubt anybody but myself truly understands, and that's if I really understand it at all.
I'm not quite sure I do, but I'll try to explain it to you.
Hodgkin's Lymphoma has gained a reputation as "the good cancer," or even in some instances, it is not even considered a cancer and is dubbed "Hodgkin's Disease."
Early on, when I was considering myself lucky to have this diagnosis, I was blessed with my almost all-knowing (he is human), but at the very least all-caring Dr. G, who explained to me that I was not "lucky" and I certainly did have cancer.
Now, anybody who has been following my postings knows that Hodgkin's is certainly a cancer and it definitely has not been good to me.
Through the 4.5 years since my diagnosis in April 2006, I've come to realize that the 90% cure rate is for those who were diagnosed in Stage I or II of their process.
Sufferers, such as me, who were diagnosed in Stage III or IV, have closer to a 65% survival rate.
Unfortunately, this information came after years of suffering and not in time for me to throw a hissy fit to expedite my diagnosis and treatment. In fact, I was reassured that postponing treatment and allowing for some growth would not affect my overall outcome.

With this considered, I'm relatively confident that this finding occurred in the past four years or so after it would have benefitted me. 
So how did I get HERE?!!
For those of you who may be new and do not know where "here" is, it is a nasty place where I've received so much treatment that every treatment is harsh and is accompanied by SEVERE side effects.
For this reason, I  decided this past summer to treat my cancer like a chronic survivable disease. The goal is to gently control my cancer with the lowest dose chemotherapy possible with the least amount of side effects.
Ironically, my decision coincided with a great article in "The New England Journal of Medicine" entitled "Less Intense Hodgkin's Therapy Matches Standard."
For those of you who don't know, now you do, "The New England Journal of Medicine" is the alpha publication for the best, most current innovative findings in medicine. Please take time to see the article, if only to familiarize yourself with standard treatment here (You'll get why I'm going into this in a second):
I received the standard treatment starting in May 2006.
This was 4 cycles of ABVD therapy. ABVD is an acronym for four different chemotherapy agents given together. These agents are: doxorubicin, vinblastine, bleomycin and dacarbazine.
At the time I received the ABVD therapy, I was a otherwise healthy 23 year old, athletic, non-smoking, social drinking, Registered Nurse. I ran and played soccer for fun.
The side effects were minimal.
It did not cause issues with my electrolytes or my "counts." I was never once hospitalized during my entire ABVD therapy.
I described it as a "five day hang over with better med control." I didn't even lose my hair, and one study found 30% of chemotherapy patients lose their hair as part of a "placebo effect."
I was not one of those people. I was honest with myself about my disease, my prognosis, and the possible side effects of the chemotherapy I was receiving.
I would take it on Monday and be out partying on Friday. I was able to pick up my son from day care every day. I required one long nap per day. I could still cook dinner daily. I would clean my house top to bottom weekly. My biggest complaint was mild nausea (hence the hang over people and it was a wine hangover not a tequila bender hangover).
In the years since I've received some of these chemo agents in different regimens in an attempt to kill off my disease.
I want everybody to be very clear on this.
I am taking one medication of the four I started with in 2006.
I am confident and well cared for at Dartmouth. Over the years I've formed a great relationship with so many of the providers there.
Dr. G stated yesterday that he is given advice "almost daily" from other well meaning Doctors who want to see me happy, alive and thriving.
I am receiving the smallest dose of therapy possible as decided by both Dr. G at Dartmouth and Dr. A at Dana Farber.
What I assume has happened is the cumulative effects of all the chemotherapy in the past four years has taken it's toll.
It is not the choice of chemo.
I have very little disease currently.
And, EVEN BETTER NEWS, I will not be receiving anymore therapy until January.
I have the whole holiday season to enjoy.
I hope this clarifies things for those of you out there who love, care, and worry about me.
I'm still in good hands.
I am working on how to supplement my immune system to regain some of its strength, but I highly doubt the chemotherapy is the sole source of my trials.
Thanks so much for all the love, prayers, and concern. Keep it coming.


stonepost said...

Hillary, I read your post and still don't quite understand our differences. I had stage 3 and 1/2
(nice dr. did not want to depress me) and was given 60%or a little less. I opted for 12 sessions of the ABVD chemo-from-WWI-mustard-gas. The cure almost killed me. Yes I lost my hair and fifty pounds with it. I became quickly a 90 year old man. But it killed the cancer and now I am getting stronger every day. Collateral damage, I have a lot of neuropathy in my hands, but I am still laughing.

Loraine Ritchey said...

Hi Hillary yeah I think HL is a picky picky disease my Chris got it early started treatment right away- through the Cleveland Clinic.... he too got through 8 sessions of the ABVD - 2 months later it was back then the ICE - they said there was no cancer left he had the treatments every 10 days .the double stem cell transplant March and then May - it was back July 9th and then back this damned obscenity came August 29th confirmed - then to Texas for SGN 35 started treatment Sept 11th but although they say it was H1N1 - that got him - it was his lungs turning to leather that did the damamge- he had had so much chemo in such a short time bless him...... they never did really get a conclusive diagnosis of H1N1 --------- I believe there is a sub HL and I as varient of the "curable cancer" But bless you for fighting and staying the course I admire you every day Loraine

squkypigs said...

hey hillary so glad to hear u r doing better.. I think of you all the time :)