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

Friday, June 12, 2009

The Bowel Blog

While everybody else was busy living their life yesterday, my stomach decided to rule mine and sent me packing to the hospital.
This was all after getting my mother to watch Xander for me, of course.
It is extremely complicated trying to take care of myself (especially when I wake up doubling over from abdominal pain) and take care of a poor child who just had his tonsils out two days ago.
Despite the extreme pain, he is my priority, but try to tell him that when I’m hobbling around, crunched over in the fetal position, trying to get him dressed, fed, and happy while simulataneously praying that my pain control medications will kick in, at least a little bit.
They didn’t. My oxycontin and morphine didn’t touch the pain at all.
I knew I was in trouble and that I would be headed to the hospital for something that day.
While Xander was bathing I made an early morning phone call to my providers at Dana Farber. Both were still in their cars on the way in, one with the kids in tow, but they were able to guide me as far as care.
I just saw my Primary Care Physician in Claremont on Tuesday. It has been great having him “officially” in the loop. He also receives my medical record updates for my chart via email.
I now feel safer having episodes like this in my hometown.
It is incredibly scary and anxiety producing to know you are incredibly sick and also know that local providers do not feel they have the specialty or capacity to care for you.
What, exactly, am I supposed to do in an emergency then? Cross my fingers and pray the emergency can wait hours to get to Boston? Or do I risk my life knowing there will be no collaboration of care between facilities that openly state I am beyond their specialities and the one that cares for me?In a true emergency, I’ll take the closest facility and pray for the best. I have the pager numbers of my care providers at Dana Farber and someone is available to me, fr consult, every day, every hour, all the time. If I am uncomfortable with recommendations, I’ll page those people myself, even if I can barely talk, I’m slurring my words, and the ceiling looks like it is on the floor.
I’m stil grounded in knowing I need the very best care to survive. I am in all out survival mode during these periods. Don’t get in the way of my attempts to live. I’m going to be surviving.
I went to the Emergency Department at Valley Regional. You would think the hospital is was my favorite place with all my previous stays.
This time searching for treatment was uneventful. I had been taking to the team at Dana Farber (Dr. A and melissa) all week regarding some severe abdominal pain.
It was so miserable I had been "knocking myself out" at night. After a day chalk full of caretaking for my poor son who has just had his tonsils out, I am overextended.
I am really excited that I at least have the opportunity and ability to mother x towards recovery.
I am sorry I am missing out on today. Any day that I can't be with him due to my health status really pulls at the heart strings.
There is a lot of survivors guilt regarding how my illnesses have effected those I love, specifically x. He is a primary focus of my life. He brings me joy, but is incredibly hurtful that I can't provide the unconditional love, structure, balance, and safety I always dreamt of giving a child.
There is a lot of personal guilt about having to make choices for treatment, especially to leave your family behind to relocate for treatment.
Despite the fact these are “life or death” decisions and the major motivator behind my choices has always been that I would like to survive to see Xander grow into a man, it is impossible to explain the pain and agony in these decisions regarding how far I will have to travel to prolong my life, especially how long I will have to be away from my family, altering their schedule and causing them anxiety, ultimately interfering with the life they would have had I never been diagnosed.
It is extremely hard to know that I have, albeit unwittingly, brought this stress into our family. Alongside these guilt riddled decisions I make between bad and worse options often comes the issue of gossip and judgment.
I am a hot topic. I am open with the ups and downs of cancer treatment and trying to live, happily, while surviving. I understand not everybody will agree with the decisions I make, but I also understand I am making my decisions to the best of my ability with the information I have. That is the best I can do.
I think this is the best anybody can do with their situation, but that doesn’t condone the hurt that can be experienced when people decide to use my life and experiences to judge, especially my capacity as a mother, in a hateful way.
I did predict upon writing this that people could be harsh in their judgments of my decisions, very personal decisions regarding my families’ best interests during the (hopefully) most fragile times in our life.
However, Xander enjoys our creative escapades. He loves to make videos, sometimes it is an webisode (ala icarly on Disney). Our latest was “Xan Can the Science Man” where he directed a SCIENCE (!!!) discussion about a fallen birds nest and the unhatched babies. He also dissected an eggshell to expose the developing baby bird.
Awwww, my little boy, all ready participating in anatomy and physiology lessons, I am so proud.
Despite my best attempts, judgments regarding parenting choices will always exist. It’s a touchy hot topic. Those judgments, in my experience, are always hurtful.
However, more important than any emotional hurt and judgment that I may suffer, I want to give the information I have learned from my experiences to others, the good, the bad, and the down-right ugly, so those who must experience cancer with children will have more information, more resources, and less fear regarding their journey.
Luckily, despite the hurt and judgments that exist regarding my choice of how to cope with my disease within our family structure and publicly on this blog through my writing, I have experienced much more support that I ever have harsh judgments,.
I look forward every morning to my therapy, coffee and writing, which I try to get out as the sun is rising, in the twilight of morning, when the birds are chirping, and the house is still quite.
I’m loving having my routine back. I’m loving having my life back, somewhat.
The abdominal pain from yesterday turned out to be a massive blockage of poop.
How embarrassing, but also how very relieving.
I had been suffering since Sunday, ignoring symptoms to take care of the house and Xander, eating box upon box of dried apricots, and thinking I’m managing my bowels. I was having daily “regular” bowel movements, but the pain wouldn’t quit.
I knew I was gassy. I knew I had hyperactive bowel sounds.
I did not know I was “FOS” again.
I certainly liked that better than the obstruction I was concerned about or the bile duct that could have been misbehaving.
My stomach had become quite extended. I was walking around rubbing it like it was holding my second born. The bloating was comparable to my stomach at 4 months along, and it was all due to a need to poop!
The ER Doctor on staff, Dr. Rogers, is notorious for his holistic remedies, which certainly made me happy. I was discharged with 2 oz. of mineral oil and a bottle of mag. Citrate and told to drink one ounce of the mineral oil and repeat two hours later and then drink the bottle of magnesium citrate while hanging out beside a bathroom.
That’s what I did and it worked, far better than my munching on dried apricots all week. My stomach pain has subsided to my baseline pain today.
I was given instruction to continue with the mineral oil for contipation, but I generally take the supplement “Triphala,” 2 pills at bedtime, which is a fruit extract.
I had stopped this because I had gastro-enteritis.
I actually have a whole box labeled “bowels” in my mini-pharmacy since they are constantly a point of contention and finding balance in the context of my graft vs host disease has been a challenge.
I’m just going to take yesterdays hospital visit and file it under the “live and learn” category.
At least I got tot see the old stomping ground and some favorite people. I miss you guys.


Anonymous said...

Just sent Dr. A-Rog (I'll have to share that new nickname with him) your blog site so he can bask in the glory of being posted. Glad you're feeling better.
Laura Z.

brynn said...

Okay when I first saw this I was like...she can't go in the hospital we are going on vacation in a week and a half!!!! I am glad it was just you being "fos!" I'll talk to you soon...this weekend probably! :)

Shannpn said...

Hill glad your home and feeling better!! Damn apricots :)Hope X is feeling well after his tonsils.
Happy Birthday to mom!!