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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Saturday, February 26, 2011

Treatment Deja Vu

I am having deja vu from five years ago.

 Yes, it's hard to believe I was officially diagnosed by biopsy with Hodgkin's on April 5 2006, five full years ago. 

I knew I had cancer in Jan. I had large, firm masses in my neck. I felt like I was choking when I swallowed and suffocating when I laid down. I had a constant low grade fevers with fatigue that forced me to take naps or chug caffeine. I was nauseas and would throw up on a whim. 

I'd tell this and show the masses to any doc walking by the ICU where I worked that would listen, but young cancers are rare, more rare than "second year syndrome," aka paranoia. 

Back then, I decided to wait until after a family vacation to FL to push for an official diagnosis. 

Why worry everyone?

So, that's what I did. 

There I knew something was wrong when at 2pm my Grandparents were playing bocci ball and drinking margaritas by the pool while I napped in the condo. My mom and grandma giggled and tried to keep me away from the alcohol, excited that the fatigue and nausea meant X was getting a sibling.

Whoa was that off.

Now, five years later, I'm in a similar situation. 

I met with Dr. G yesterday to review my PET scan results from Tues.

Last week, Dr. G canceled my chemo wondering if the extremely low dose was still effective and if it was worth the extreme side effects, such as bone marrow failure and septicemia, I had experienced. He also wondered if my symptoms, increased pain, fatigue and nausea, the same as 5 years ago, were attributed to increased disease. 

Good instincts Dr. G. It turned out it he was right.

When he didn't run in like a champion after winning a big game I knew the news wasn't great. 

My cancer has returned to an amount equal or greater than what I had in June. The velbam had almost eradicated all my disease in Nov. After this point I took a long treatment vacation for the holidays and resumed in January, but after two doses of a chemotherapy that shouldn't even alter my blood counts, I suffered from a severe infection.

The Hodgkin's now is located in my abdomen and pelvis, where in the beginning it was limited to my chest. My symptoms now include bloating, abdominal pain, flank pain, and urinary hesitancy.

Lymphadenopathy (swollen lymph nodes) is causing right-sided hydronephrosis, or kidney swelling from a back-up of urine. My kidney marker blood levels are normal, but again I'm threatened with the placement of a stent. 

My liver and spleen are normal. Everywhere else is not.

So what's the plan?

Luckily, I trust my main man Dr. G at DHMC and his team. I also know he's been stalked to the point of annoyance by his collegues suggestions on how to treat me.

We're Bendamustine (treanda) which has been used for CLL, non-hodgkins, and recently hodgkin's post transplant patients. It is "gentler" than ABVD or CHOP, but I could barely handle the "V" in ABVD therapy.
This is given over the course of two days and causes a blood count drop 10 days-2 weeks after treatment. 
I've canceled my Monday appointment with Dr. Alyea, who could offer me trial options in combating my disease, which I am not interested in at this point due to the inconvenience it would cause me and my family, such as moving to Boston to undergo treatment.
I did purchase my Moss Report and plan on consulting him. I will continue to manage my diet and use complementary therapy along with this chemotherapy treatment. 
I'm scheduled to start Mon. March 14, again, after our family trip to Florida.
We're going to Disney World!!


darlene said...

here's hoping you get good results with the bendamustine- it sure helped bekah!
bekah's mom

Loraine Ritchey said...

Oh Hilary there are times when words fail me - just know there are so many who folow your journey who are pulling for you Loraine