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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Friday, March 13, 2009

Bi-Weekly Health Update

I was woken up this morning to the GOOD NEWS that I made the paper (Check the pic down two posts, me with my favorite accessories, my mask and gloves).
Good news, FOR ME, on Friday the 13th?
Maybe my luck has changed.
I’ve spent today getting some much needed rest .
When I wasn’t doing this, I was planning an even more necessary BBQ.
Jon and I decided, if we couldn’t go to spring and warmth, we’d bring it to us.
Spring is officially here in our house. We’re kicking it off with a BBQ, whether the weather cooperates or not.
I cook in large portions now so I can prepare my food ONCE then freeze it for quick cooking later (Take note of this if you’re sick or even if you’re just a working parent, it works like a charm).
This, apparently, also helps if you decide to throw a BBQ 5 hours before it happens.
I think this would be more accepted by my providers than packing up my family and driving them a couple hundred miles to another friend’s house somewhere warmer.
As you can see from the public picture, however, exceptions to the “no going into crowded places” rule can be made for EXTREME occasions.
I could fly immediately if it was to get to Germany to see Dr. Jacob for a reoccurrence.
I assume speaking to the NH House Finance Committee and the Ways and Means Committee would have been one of these aforementioned “special circumstances,” but I don’t know.
I didn’t ask. Alyea says “meetings” unless held via conference call or computer conference are banned until later.
I do know exactly when “later” is, but I’m not telling.
I did not see Dr. Alyea yesterday at Dana Farber. I didn’t get to see Melissa, my NP either.
I did get to see Grant Hou for my acupuncture. We discussed the changes in my body that have occurred in the past two weeks, such as my increased low grade fevers, fatigue, and abdominal pain.
I told him about my local Chiropractor and the acupressure I receive here directly to my liver to help facilitate detox and lymphatic drainage.
He made me reassure him my providers would be made aware of my increased pain, fatigue, and fevers the proceeded to work his magic: instant relaxation, alongside some extra pokes this time, which I assume were for my misbehaving liver.
I am incredibly thin. I have always been able to feel my liver.
In college, I would lie on the exam table and students would line up to do abdominal assessments on me with the teacher guiding them.
I got volunteered for this since you could feel many major organs in my abdomen even then.
Take my word for it: I have an angry, irritated liver. I’ve been treating this organ as nicely as possible, but after three years of having to detox cancer treatments, it’s a little angry.
I am still open to lining up students and allowing their teacher to show them how to poke and prod a patient properly. They have to learn somehow. I’d prefer it be on me, a knowing, accepting participant in a controlled environment.
During my acupuncture my cell went off. When I finally checked my message, it was my practitioner saying she had a fever, Alyea was out of the office, and I didn’t even have to be in Boston!
I all ready was though, and thank goodness, Pat, the transplant nurse, could see me.
Everything I wanted to accomplish still was. My labs were drawn. My CBC is NORMAL, as is my Chem7. I am stopping my prograf. My immune system is now going to start running on its own.
My liver function tests did show that my liver was angry. My ALT has been steadily rising, which is common in graft v. host disease, but the rest had risen to abnormally high levels too (see for a quick lesson).
I decided I would cut the dose of one of my homeopathic medication, Bio 93, which stimulates lymphatic drainage, in half. I had started this medication a week before my blood tests realizing the side effects and interactions were unknown.
My providers were aware that I decided to take this medication despite not knowing the possible consequences.
I told them what I was doing.
Transparency is important. Even homeopathic pills can have side effects too. All providers can do is give you information and suggestions. If a patient, like myself, decides to try alternatives despite possible unknown consequences, the ultimate goal on their part is patient safety within their realm.
My doctors want to know if I’m taking a pill that could hurt my liver. I warn them before I incorporate new medications into my regimens.
Good thing I do. My LFTs were not so great.
I also decided to go to the pharmacy at Dana Farber to fill my pain management prescription.
There is a nationwide shortage of oxycodone, my short acting narcotic pain pill. I take oxycodone because it does not contain acetaminophen, which would hurt my liver, or ibuprofen, which would hurt my kidneys.
Since there is a shortage, I’ve been taking Percocet, which has acetaminophen. My liver may not be happy with this either.
Not to be selfish, but I vote cancer patients get the oxycodone first, specifically ones in my position, which have “suspicious” nodes on their livers. I think the manufacturing company thinks this too, since DF could fill my prescription.
Then, after a 6 months search to find a psychiatrist, I was off to meet MINE for the first time.
The only problem was I had left the paper with directions to her office at home. When the directions were read to me over the phone some important information was omitted, like the name of the street that intersects with Longwood where the office is located.
Oops. I didn’t make the appointment. I couldn’t even call to tell her I would make it. I still haven’t since I don’t have the office number either.
I hope she forgives me and lets me schedule another appointment.
Everything does happen for a reason though. I was able to leave Ben Town at 2:30pm, an hour earlier than planned, which landed me at the Tech college later than six, bit prepared with speech in hands.
Cheers to letting the cards fall where they may, even if it’s not by choice, and drives a wanna-be control freak like me crazy.

1 comment:

Annie - Steven's mom said...

Keep fighting, keep writing, keep smiling........ You have a wonderful knack of getting your feelings and your message across through your words.
love and light
Steven's mom