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, August 5, 2009

Pre-Therapy Freaking Out

I am trying to keep this positive.

I am trying to keep myself focused.

I am just having a little trouble.

I almost killed myself yesterday.

It would have been death by car, suicide unknown.

It would have been suicide unknown because what I did was so stupid I must have been trying to take my life. I decided to drive myself to my appointment when my blood draw was scheduled for 8am.

It was only at Dartmouth!

This is part of the perk of being treated locally, my appointments should no longer be a burden. I can drive myself.

I was so excited I was again being treated close to home.

I wanted to prove I could be independent in my care.

I had also just driven to Manhattan and back with no problem, but that was two days ago.

My cancer has been slowly but surely kicking my ass over the past three weeks, first with my swollen abdomen, then with increased pain, and hen with emergency appointments, scans, and a biopsy that tried to rule my life only to be coupled with a few personal tragedies, like losing my monthly income, being robbed, and having Jon be worked up for Colon Cancer.

There is an extreme amount of stress I our household. We do the best we can with it.

What do I do when I hit this level of anxiety?!


No, just kidding.

I do projects, projects after projects after projects. I organize things.

I try to coordinate my life, putting everything in sequential order so when the day does come that the chemotherapy does lay me flat on my ass my family wil be prepared, my house will be prepared, I will be prepared.

Projects, such as organizing the house, give me a sense of control. I need to know I can access my needs, such as food, when I am alone.

I set up my bedside table just so: with a fan and a bedside lamp, a few key medications by my side always, a glass of water, a glass of juice, and some ritz crackers.

I’m trying to create an overall schedule for life, specifically childcare, housecleaning, and grocery shopping.

Jon is taking classes two night a week, Monday and Weds. We need daycare. We have two people who have offered to possibly do it but not committed.

We also have a person who may or may not do afterschool care, but won’t commit.

This whole school care is making me very anxious. I don’t want to leave him with someone I deem unsafe, and being unreliable makes me crazy.

I have talked to his teacher next year, Brenda, and we’re going to hang out and have some pool dates with our kids so when Xander enters the classroom he sees someone he knows well.

We all ready hang out a couple times a week a games, but no we’re making it officially.

I am also now worried about who will care for me since, from yesterday’s events, I clearly can’t drive.

I think the nasty sequence of events started the evening before.

I am anxious.

I am declining quickly.

Soon I am going to again be punished into watching reality tv, and home improvement shows.

I only pray I’ll have the ability and strength to read and write.

I took some ativan to calm my nerves, but I was really nervous and one didn't work.

I took 2 mg to help me rest.

When it was time to sleep, I took my ten mg of ambien, as usual.

I woke up at 5am to x choking and blood pouring from his nose.

I definitely woke up for THAT. I was awake when I stuck him in the tub and stuck gauze in his nose, but somewhere along the line I fell back asleep only to find X had stopped his nosebleed and wasnow up and dressed to go to Meme’s.

Meme has been taking care of him recently, and X is loving every second of it. If he thinks he is heading to meme’s the countdown will begin days in advance.

HE certainly loves her, and we’re lucky to have a family that will help.

I got him to meme’s house, just 3 miles down the road just fine. I had my coffee and my two smoothies, but I just couldn’t keep my eyes open.

I stopped in Windsor before I hit the highway for a coffee coollata.

I took as many large chugs as I could, hoping he influx of caffeine would help open my eyes.

It didn’t.

When I saw I couldn’t keep my eyes open, I am not take about boring Mr. D’s science class in high school where you at least poked one eye out due solely to intimidation.

No, I was falling asleep! There was nothing I could do about it.

Ambien specifically warns that trouble waking may occur and participating in events but having trouble remembering is also a problem (this sounds like sleep walking or sleep partying, sleep something anyway when translated into common language).

You are told not to operate heavy machinery.

Ativan also says these things, but it had been 12 hours since taking the two.

I think they just rose up together to kick my ass and thankfully I survived.

I will either not be combining those meds anymore or certainly not driving on the combo.

When I got to the hospital I immediately fell asleep on my favorite love seat in the waiting area, and then I fell asleep on the exam table.

I was so out-of-it I wasn’t able to jump from the table to tell Marc and Anna how Hugely excited I was that I was in their care again.

They actually both, cautiously helped me off the table, which is a sign they thought I looked SICK.

I am sick. I have declined so rapidly in the past 3 weeks, breathing is difficult, I break into cold sweats eaisly, I get the shakes, I have night sweats that leave lasting “hillary spots,” and I tire to the point of exhaustion by two. These could also be symptoms many woman can relate to (see carton below), but mine are not, they are cancer.

Does anybody understand why I am freaking out?

I am running out of time to prepare.

Who will do the grocery shopping?

Ideally, I think Jon should every week. But will he remember, or be willing to pay,for the food I eat, like magoes, papayas, yogurt, refried beans, rice, carrots, etc.?

Hopefully we can make a schedule so our lives may be easier.

Right now, I’m freaking out, and I’m trying not to.

I want to be positive. I want to bring you great news.

I want to focus back on the great fact that I know have Anna as my nurse practitioner and Dr. M. Gautier as my new go-to guy, and I love these providers. They have seen me through a lot. They worked very hard to gain my trust during the initial transplant. I didn’t tell them I missed them, but there will be plenty of time for that.

They will also work closely with Dana Farber to consult on my needs and my Primary Care Physician, Dr. Paul Matzkin, so all three or on the same page regarding pain control.

I am excited that these health professionals are all willing andable to colabrate on a patient extensively for my needs.

This makes me feel comfortable.

But this also makes me excited that I am one step closer to starting my Patients as partners network.

I have the people. I think if I build it, they will come.

I hope to have the grant outline from the Federal Stimulus Money for online medical communication information by August 15 (happy Birthday to me).

After this point, I will start writing, answering and researching whatever I can to bring this project to fruition.



Emilee said...

If you ever need anything don't hesitate to ask.


Marci Cooke said...

I read you everyday, like my newspaper and am so sad to see you deteriorating so quickly. My 80 year old Uncle wrote to me to say he is so tired of fighting is 20 year battle with cancer. I wrote back telling him that it was ok to stop fighting. I'm not sure I would tell that to someone as young as yourself and with small kids. You do have this one last chance with Dr. A that can keep you going for a bit longer. You are waning. You are not the same Hillary as you were 6 months ago. I've read every entry. I want to keep reading more. Stop the driving and stop the Ambien. Ambien is not a good drug for anyone. You will sleep when you get tired enough. You don't need to sleep at nigh because you can sleep during the day. Please try to fight for a little longer for the sake of the kids and trust your husband to bring you the foods you needs. Give him a specific list. My husband sometimes bring me the wrong brands, than what I wanted but I learned to be extremely specific with him and never complain about what he brings back from the store because I know he is trying really hard. also, pallative care is not necessary end of life care. End of life care is called hospice. There is a difference. I do wish I lived closer to you because I can help. I live near Keene but I would like to come up one day and bring you a load of foods - how far are you from Keene? - Love Marci - don't write me at gmail. Please write me at

Anonymous said...

Hillary I am praying for you, so so very many people are. You are the strongest fighter i know. You are going to beat this, I know you are. Keep fighting!

linda keenan said...

marci, are you completely, utterly crackers? where do you get off telling hillary or anyone, frankly, to stop taking ambien?
and what in the world goes through your head when you tell her "you are waning"? YOU need medication, for lack of tact and restraint.

Marci Cooke said...

Linda, sorry I offended. Honestly I was trying to be encouraging in my own way and certainly did not mean my comments in the manner in which you understood. In case you are interested I am getting ready for a bone marrow transplant for an advanced case of leukemia. So sorry Hillary if you took my comments the wrong way. I am certainly thinking of you all the time.

Anonymous said...

Hillary, stay strong. We all love you and are praying for your full recovery. Remember that miracles are possible. You are already a miracle. Keep on fighting.

If I lived closer or had the ability to retire early, I would come take care of X...I have a pretty good track record with kids. But unfortunately, neither of those scenarious is possible. But don't give up on finding a good caretaker for your son. There are so many good people out there, and I am sure that someone wonderful will be coming your way very soon.


Anonymous said...

I'm sure you are aware of this Dartmouth grant? Check it out - it sounds like it's right up your alley. You're in my prayers.


Anonymous said...

Just a quick note to tell you that I'm thinking of you Hill ... I carry my healing fetish every day & think of you when I handle it ... I wish I could say or do something to make the pain go away. But I know I can't. However, I can tell you that I'm just a short phone call away ... & if there is anything I can do to help, you have but to give me a jingle or an Email.

I hope the thought of spending a little time at the beach is a positive for you.

Take care sweetie ... we're all pulling for you.


Anonymous said...

Hillary, I had some exposure to in-depth grantwriting - particularly for federal stimulus funds - with my last job. I would be happy to look over whatever you have. Love you!


Sunil said...

Nice therapy for such things. I am always there to help you.


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