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, July 18, 2009

Feelings

I'm sad. I'm feeling the cancer squeeze again.
I'm getting the tunnel vision, seeing my world and opportunities getting smaller and smaller.
I am seeing the time I have to spend with my family and loved ones dissipate and become finit before my eyes.
I did get in to see Anna, my previous and well loved NP on the day I sought help.
She found a centimeter oblong hardened node which was not present the previous thursday.
I saw her on Tuesday.
It only took this bugger four days to cause me significant pain and worry.
Luckily, Anna was there to hold my hand.
She is one of the best hand holder, shoulder criers ever, and dare I say, one of the COOLEST WOMAN I have ever met.
It's not a glorious job in the trenches, but she raises up smelling like a rose. I miss her partner in crime too, dr. G. I felt safe and reassured under their care. I think they knew how to omit information, change the subject, and make me laugh the best.
I was sent away with a carte blanche script for morphine and a " try to enjoy your vacation. We're getting you an emergent pet."

This was written a couple days ago.
We all now know how that emergent PET went. I hadn't felt like posting, but I have felt like writing. I have been writing.
I am focusing on the completion of my book.

I have a book! It is almost complete. I am even enjoying rereading it as I put events in the proper timelines. I hope you all plan on reading too.

I have a sudden overwhelming sense to prepare for the significant, longlasting future and preservation of my family. I have a strong urge to live in the now and do only things that ease my anxiety.
I know feel the need o "get my affairs in order" even though I do not feel that my death is imminent. I do think this setback is a clear sign that I should prepare for the possibility of dying.

I have a will, but I have been avoiding signing it.
It's magical thinking, like if I sign the will, the deed will be done. I will be free to die. My husband will be free to push me out and refuse to support my treatments.

If I sign the will it's a concession that I think I will die.
I have finally gotten through the barrier of those magical thoughts. I'm signing the damn will. I hope it's still good. I had it written about a year ago.

Everybody with assets and a family should have a will. It's a basic responsibility of adulthood.

It is something I, myself, would preach to all of you that you need to have, but since I haven't signed mine, I can't.

Luckily, My anxiety has begun to ease. I'm focusing on things that bring me joy, as well as a sense of accomplishment and usefulness hoping these will alleviate the stress of my diagnosis.

I am feeling more relaxed this morning. I am starting to wrap my head around the events of this past week. This has happened more quickly than in times past.
I am home and can now start on some projects I have been wanting to do. Projects make me feel better.
One starch, contributing factor to the fact that I need to remain calm and patient: Dr. Ursual Jacob stated that as a new, incoming patient to the Klinik Im Wesserberg I will be able to be seen, at earliest, Late September.
DAMN! That is a long time, especially with the sudden rapid progression of my tumors which I know feel in my throat.
Judging from my symptoms, the pain and the swelling mainly, I have tumors trying to take over pivotal space.
I think I will begin treatment prior to September, but at least the sense of extreme urgency is gone that I will be leaving the country entirely.Maybe I will be making an appointment just to consult the famed Dr. O'Connor if Dr. Alyea thinks this is wise.
Dr. O'Connor is a renowned hematologist at Columbia University known among us young twenty-somethings as the last resort trial guru.
He has tricks up his sleeves.
Dr. Jacob, however, did give some advisement.
I know I do have options to progres with treatment at Dana Farber or Columbia if necessary. I just hope those treatments can work in accordance with a global treatment plans that includes the goals of the Klinik in germany.
I don't want to lose ground on the war against my disease, but being unable to move to Europe has freed some time.
For this I am thankful for. It is like a stay of execution. It is a sabbatical from care because I certainly need more time to accomplish my goals.

6 comments:

Kara said...

Dr. O'Connor is not a last resort. You can be on a trial anywhere. He just happens to have the most drugs to try. I did NOT pick Dr. O'Connor because I needed a last resort. I had plenty of doctor options. He is famed for his expertise. But, Im glad your feeling better.

Bekah said...

Just to echo Kara's statement Hil, Dr. O is NOT a last resort, he is very well known just because he knows of all the clinical trials that are across the country. Just as Kara, I did not specifically pick his trial -- because, it did not fit into my life at that point in time.

But he is always a good resource to check in with, as he usually has the pull, communication, and know-how, on treatments for lymphoma -- specifically hodgkins.

And, in my eyes, everyone can use a 'pep talk' from Dr. O -- he will tell you, that you STILL have a lot of options to 'manage' our cancer. Which you do!

Don't lose hope yet.
We're all behind you,

Bek

Lisa Sweet said...

Hi Hillary,
I am so sad to hear your news. Please know that my family is remembering you continually in our prayers.
God bless you all.

P.S. I have asked for prayer for you on my blog. Hope that is OK.

Valerie said...

Hil- I've been pretty quiet, but I wanted you to know that you are on my mind! Just wanted you to know...
I'll do the Jewish prayers. It's good to cover all your bases. :)
xoxoxoxo
Valerie

Anonymous said...

It's great to have the spunky, spirited Hillary back! And, I can't wait to attend your book signing event! Keep on doing whatever it is that makes you happy. Speaking of happy, it has been a long time since I last heard the "Be Happy" song...what a nice surprise...thanks!

Daria said...

Keep up the fight girl.

Thinking of you.