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, October 15, 2008

Ring the Alarm

I’m in the clinic right now. It’s a little difficult to type with my gloves on, and apparently, I’m having trouble moving, since I just shuffled around to get comfortable and pulled the emergency chord, bringing a whole crew of nurses running.
If I ever get bored, at least I have the option of pulling the emergency chord.
I’m getting labs, again. I’m also seeing my PA to discuss some problems I’ve been having.
I might be getting a transfusion, and I’m definitely getting my methotrexate.
I have my favorite nurse taking care of me again today. Her name is Kelly. She reminds me of who I was and who I can be. She also reminds me of Anna, my NP from DHMC, who I love.
They have the same big, genuine smile.
Alyea mentioned, in passing, that maybe, I could be returned to Dr. G and Anna when I’m done here. I’m trying not to get my hopes up, but I would be really excited to have them again.
Don’t get me wrong, other people are perfectly capable are taking care of me. It’s just I’m a loyal person and I’d like to stay with the team I know and trust. They make me laugh, and yes, I enjoy seeing them. It’s a rarity to find a group of health care providers you can actually enjoy seeing even if they are giving me bad news.
We’ve started going over my schedule for the next couple weeks. I’ll have a minimum of 2 appointments next week. Further appointments will be determined based upon my blood levels tomorrow.
Right now, I’m scheduled for the bare minimum of the protocol, visits once a week on Mondays, but my counts will drop. It’s inevitable, and I’ll probably be scheduled for more. I’ve tentatively scheduled the hotel through Nov.
Once I’m a “once a week girl” as Alyea puts it, I can go home and be seen at DHMC again. DF better hurry up and slide some appointments in next week. I’m all ready planning my escape back home.
I also received the good news that the Mepron I’m taking for PCP prophylaxis (to prevent pneumonia), will soon be changed to Bactrim. Mepron is a thick, yellow liquid antibiotic that makes me feel like I’m drinking paint whenever I take it. It tastes gross. I have to swish with water after I take it, spit it out, and wipe my tongue on a towel.
My labs are looking great today. No transfusion for me. H&H are 11.4 and 32.9. White count is normal. RBCs are minimally low. Platalets are at 82.
I’m starting to get excited that this procedure may go without a hitch and I’ll be able to return home quickly. I’ve started making the plans to have my house professionally cleaned. I wrote down what is necessary to make my home a safe environment and some friends are willing to come over and help with the deep cleaning.
These decisions are all made under suspicion, with the idea in the back of my head that something could go very, very wrong and derail the plans for months. My tendency to make long term plans has been beaten out of me. On the upside, I am very flexible when it comes to scheduling now. I let problems roll off my back and don’t take them too seriously. I am, in general, a very scheduled person. I’m a planner. It took years of being beaten down by cancer to concede that maybe not having a set schedule is okay.
It’s kind of liberating that I get to expand my traits, but if this small positive fails to sustain me, at least I have my survival button (thanks Jen).

2 comments:

Anonymous said...

Just to let you know, your favorite receptionists are following your blog and thinking about you....yes the ones at DHMC!!!!

sarab said...

It's great to see your labs are good! Keep up the good work--I know living in a hotel room with your parents and being isolated from the outside world (not to mention the fact that you can't take part in all the shopping outside your door in b-town!) must be hard but it's obviously paying off! I lit a candle for you in a church up on top of a hill just outside the entrance to the Acropolis in Greece for you. Hopefully the Gods are listening to my prayers for you! Keep smiling, it looks good on you! Sara :>