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 28, 2009

Appointment Adventures

On Thursday J and I decided to make a “road trip” out of our excursion to Dana Farber. We decided to take a different route than usual to have the experience.
I really wanted to feel like a tourist in Boston.
The fun thing about Boston is that from one block to the next, one street to the next, or even one building from the next, there may be a huge difference in environment.
If it’s a Red Sox game day, watch out, the fans are all in and everywhere.
I wanted to see what else I had been missing while I was on the inside.
I had been missing some gorgeous landscapes, but J had to force me into putting my camera down and "stop acting like a tourist" so we could actually find where we were going. The garmin kept saying things like, “in ¼ mile take the second exit off rotary” and we’d look up to see we were in a residential district.
But the directions did work and we got their safe, sound, and on time.
I was really excited to inform Alyea that my low grade fevers had subsided, but when vital signs were done, that bubble really burst, my temp was 99.2. I was also weighing in at 107 lbs.
KeKe said it could be the mint in my gum attributing to the raise in temperature. Alyea says it could just be a virus, even a virus that has lasted since October.
I think I was just getting hot flashes. Whenever I get nervous, I get hot flashes. This often makes it more difficult for me to handle whatever situation is making me anxious since I am now flushed, sweating, and stripping off layers of clothes, often down to my tank top underneath.
I think that may be a little distracting to everyone involved. However, it does stop fights between my husband and I quickly.
It’s difficult for him to be angry while I am simultaneously arguing and stripping off my clothes.
Anyway, my labs all looked great. My eosinophils are a little elevated as well as a liver enzyme, which both indicate an underlying graft vs. host disease. This is not required to be treated, just watched, as I am not having liquid bowel movements, abdominal pain, severely scratchy eyes or rashes.
On exam my abdomen felt soft despite the constant pain it has been sending me.

I was found to be, wait for it. . . . DOING WELL.
We discussed some homeopathic medications I was unsure of, neither of which he could recommend since he had never seen him before. I explained the rationale for both, but chose only to use one that stimulates drainage within the lymphatic system and contributes to spleen health. I will start this on March 4th, a week before my next appointment so we will know if it interferes with my other medications.
The other medication got the ax since neither one of us were comfortable with knowingly adding viruses into an immature immune system.
I got my prescription for acyclovir written and I was TAKEN OFF magnesium! YAY! One drug down, 20 more to go.
At our next meeting, I will be completely removed from my prograf (or tacrolimus) and my immune system will begin functioning on its very own with out chemical assistance!
I’m excited. I think this marks quite the milestone in my treatment. Now, I’m anxiously waiting for my PET scan in mid April.
It wasn’t all about seeing Alyea that day, no way. I had finally gotten an appointment with Grant Hou, a very well loved and highly in demand acupuncturist that practices in the Zakim Center at Dana Farber.
The beauty of the Zakim center is that it provides scientifically proven complementary therapies to assist in fighting cancer for a SET FEE of $55. Insurance companies often do not cover massage, reiki, or acupuncture for cancer patients though they have long been known to assist in healing. The Zakim Center makes these therapies convenient and affordable.
I had no idea what I was in for with the acupuncture. I had heard the needles didn’t hurt and that it worked like a drug. The people I asked also said they feel into a trance like state.
Sounds good enough to me.
As it turned out, all those things were very true. Grant started placing needles, quickly, through my scalp without pain, and when the fourth needle was placed, I immediately felt a rush and an overwhelming comfort blanketing me.
The only comparable feeling I have ever had is when I am in pain and the nurse comes to give me an IV push of medication. The effects began that quickly with acupuncture and without adding anymore unnecessary toxins to my body.
Then I was told to lay still, relax, and listen to the music. I chose to do deep breathing exercise alongside the acupuncture and picture the characters from X’s spiderman video game fighting and obliterating any tumor that may be in my body. Then I also thought about my lymphatic system being squeezed and stripped so cells can seamlessly run through the system.
I’ve never really been one for visualization, but in the hospital I certainly did. For a nap I could sit quietly, close my eyes, and think of the beach and be there in my mind with the wind, the sun, and the blanket.
Mind traveling is the only kind permitted for me right now.
As far as acupuncture, I like it. I’d recommend it. I’ll be going back for more. I am all ready scheduled to do it again in two weeks when I go back to Bean Town and even if it does not have the exact effect I’m seeking at least it makes me feel healthy, vibrant, and free


Anonymous said...

I'm so happy you had such a good appt. the other day and I'm happy that you really enjoyed the acupuncture, I have never tried it always wanted to but am scared to death of needles, and I have to pick my self everyday, every 1 1/2 and still , but hey good for you and we can't wait to see you tomorrow.

Kristin said...

Great job tonight. Keep up the good work.