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 25, 2009

Hooray, It's Saturday

Hooray, today is Saturday, and thus, the conclusion to one of the most hectic, hellacious weeks EVER.

Believe me, it was bad, I have had many, many hectic, hellacious weeks before and this one was up there.

Let’s recap: a week ago Weds. My neck starts to swell (lymphedema) much like cancer reoccurrences in years past, and I run to DHMC for a check-up with ANNA.

The fact I get to see Anna makes leaving my vacation last second, ditching the kids, and running around NH because of a nasty reoccurrence okay.

My PET scan is scheduled for Friday. I again have to plan for a day out excursion at the last minute, all with a driver, of course, because I am getting medicated to the max.

Let’s take a second and think, “Thank goodness for Liz,” who is a lifelong family friend and my new nanny.

I really didn’t realize how much help I needed. She has really taken the stress off so people can concentrate their energy where it should be.

Now, Let’s all stop and pray that she doesn’t run screaming in the other direction after having to participate in this week’s events, at a whim, with no preparation, because that is what our life is when a major health catastrophe happens.

This week is such a blur of events I don’t want to think about it: Lexi had basketball camp and Xander still had soccer, which we’re coaching but won’t be in the fall. I had my first major political meeting about Patients as Partners at the Department of Health, my house hadn’t been cleaned and grocery shopping hadn’t been done for 3 weeks, since I was on vacation, and all the clothes and packing for that vacation had to somehow be put away so my life at home could have some semblance of organization amidst the chaos.

Xander, also, had his two front teeth pulled at the beginning of the week.

How do you like them apples to kick off your Monday?

He amused all of us by asking, before Dr. Bob put the pliers in his mouth, if he “could do it himself?”

I thought the dentist was going to fall out of his chair on that one. I had to explain quickly that Dr. Maxfield had gone to extra, special school to get to use the pliers.

Really, though, how cool is my kid?

Then, because I am crazy, out of my mind and obsessive, each time I prepare for a biopsy I get this strong urge to paint, and not just on canvas, it needs to be a room.

In April 2006 I painted out half bathroom yellow.

In March 2008, I painted our master bath a refreshing green.

This week, X and I took the rollers to our mudroom, which still only had primer on it since our house’s construction five years ago.

Our life had a plan, and that plan was to build our house in segments as we could afford.

Luckily, the interior we were able to finish prior to my illness 18 months after settling in. The mudroom, which is probably 4”x6”, was supposed to be temporary. Try fitting four people with New England winter wear in there.

We were going to build a garage mudroom next.

I’ve heard the fastest way to get derailed is to make plans. I finally came to terms with the fact that mudroom is a fixture for now, and we have to work with it.

That room had to be painted. It also had to be fixed, since we had a dog previously who had doggie PICA and liked to eat drywall.

Kaiser passed away of an unrelated congenital liver defect over 4 years ago, but the holes in the mudroom still remained.

I painted it taupe, a color I never really appreciated before (it’s a mix of gray and brown, who would’ve thought to combine those?).

It’s a good color for a room I know will be beaten and kicked with shoes, mud, and whatever else.

Despite the stress doing this was supposed to relieve, it did add a little, but Jon picked up where I left off, and now we have a beautifully colored mudroom.

After I had finally gotten in the groove of painting though, I had to jet set off to Natick with Mom, because the weather called for torrential downpours and we weren’t waking up at 4am to get to the hospital driving I that.

At 8pm we made it to Heather and Allen’s house, where I did get to relax.

I did get to see Heather, who I haven't had a chance to see often, and who I miss alot.

Heather had some decadent chocolate pastries awaiting us (mostly me, the steroid queen) and our bed all laid out.

Everybody who needs a place to lay their head at a second home for a reasonable price should head straight to IKEA. I bought a loveseat that pulls out to a double bed for Heather and Allen’s townhouse last year as my sleep spot.

It is the most comfortable pull-out ever and it’s stylish.

A storage box that hides away conveniently underneath it for linens (our Pierce’s toys) can also be purchased.

I love it. I also love we have a home away from home.

On leaving early yesterday, I gave Pierce a little kiss on the cheek and headed out the door, but his almost two year old self wanted more.

He looked at Heather and Allen, confused, and said “Aunt Hillary? Big Hug?”

Yes, I did need a big hug from my nephew Pierce to start the day right. How lucky am I.

Then, finally, it was off to the hospital where I was in for some poking.

This is not the way I usually like to be “poked.”

I know some of you may have questioned whether I was a masochist or not because I keep running back for more painful procedures and I did convert to being a Red Sox fan, but S&M is not my thing.

I like to keep the “poking” at home, thank you.

I will say though, if this HAS to be taken to the hospital, I was lucky to be the patient of two very FINE doctors, both the fellow and the attending.

If I have to be sick and suffer, I should really receive some eye candy for the pain and suffering.

Luckily, having hot radiologists appears to be a trend in my care.

I remember the two from my very first procedure in May 2006 when I was getting my medi-port placed.

Awww, those were the days.

Unfortunately (or fortunately), I am given “conscious sedation” (a combination of Versed and Fentanyl) when undergoing these procedures, which makes me very comfortable.

If you think I am a little too at ease with what I say now, WATCH OUT when I am combined with these medications. They are designed to make you feel wonderfully comfortable but still be able to talk.

Imagine what comes out of my mouth?

Dr. Hottie #1 and Dr. Hottie #2 received a little harassment back in 2006, because apparently, when a mediport is placed, an incision needs to be made over the breast and then the port needs to be eased into the incision to sit underneath the skin.

To accomplish this, the breast needs to be handled in ways that I don’t allow random men to do.

From behind the surgical curtain, from what they thought was a sleeping patient, the whole OR room hears, “WHOA, Somebody over there owes me dinner!”


I have been known to send what I call “eprazolam emails” after getting my versed.

These are naughty. I equate them to “drunken dialing.”

Other than this, at the hospital, at first, everything actually went really smoothly.

I was an emergent “fit in” for the early morning, aka “the first patient.”

I got into the prep/recovery room and everybody was ready to go.

I headed for the CT/Biopsy room at Brigham and Womens quickly, but once in there, the chaos continued.

The professionals in Boston had opted for a CT Guided needle biopsy of “retroperitoneal” nodes, which are accessed through my lower/middle back.

I also had the option of an “excisional biopsy,” which is what I have had twice before.

I think the needle was chosen for a couple reason: one, I have massive amounts of scar tissue in my neck from all the surgeries, lines, etc., that have been thrown in there which would make another surgery in the area difficult and two, I am now a post-transplant, prednisone popping cancer patient. As far as being immune compromised goes, I am a big mess. There is a huge risk that an incision may not heal, may become infected, and may lead to bigger problems down the road.

The needle used was only a 17 gauge anyway, unfortunately, the nodes being biopsied were not dense with cells.

They were “hypo-cellular” as the radiologist explained. Generally, pathologists like to see “hyper-cellular” specimens. These are the easiest to make a diagnosis.

He is confident, however, that they did receive enough cells in the specimens to make a definitive diagnosis.

To accomplish this it took eight different attempts and hours of “poking” (What can I say, I’m a marathon girl).

Due to the many attempts to get a good sample, I was out at 10 am, and I was in recovery until 2pm.

There is still a possibility that the biopsy did not yield cells that are definite for Hodgkins but are suspicious. I could have to do a repeat.

I made it home just in time to galavant off to Xander's soccer game, which I did not coach, but try explaining to a group of 5 and 6 year olds that Coach Hillary had surgery and just wants to relax.

At least the day ended with a brownie Sundae.


I’m saying this loud and clear, because I know it is the big question on everybody’s mind.

I will tell you the diagnosis, and hopefully a plan, when I know.

I am finally at a point where I don’t see the plan for treatment clearly.

With my biopsies, I have always known exactly what the next steps are and how I would progress.

This is extremely lucky for a patient, and now I am in the position so many others are when first diagnosed: I really have no idea what’s going on.

I keep getting asked what is next in treatment and what is the timeline and I snap, because I don’t know.

I need more information.

Suddenly, I have become EXTREMELY COMPLICATED.

I was difficult enough before, and people are looking to me for answers I don’t have.

I have always had a plan for everything, but I am finally running out.

Remember, the alternatives I was practicing on myself I had entitled “PLAN Y.”

For informational sake, what had been lost in the last weeks prior to my flare-up, was my anti-inflammatory measures. I had run-out of my berberis hommaccord (which is like Motrin or Celebrax without the side effects), I was on vacation and not eating the parsley and tumeric (which are known potent anti-inflammatories) I generally do, and I was also not undergoing any type of acupressure to keep myself in balance.

A preliminary blood test for cancer is a “Sedimentary rate” which measures the amount of inflammation in a person’s system and indicates the amount of cancer.

I was working to control inflammation, but I had stopped.

I am not even going to talk about how I plan to stay afloat financially.


I will say I have vague plans for both, but I am so happy this week is over.

I’m going to relax.


brynn said...

I do have to say that through my swollen jaw I was laughing in this blog "someone owes me dinner." That is why we all love you! You are witty at some difficult times! That is where X gets it from! "can i pull them myself." That is just wrong! Keep yourself busy! Lets get together soon I miss you! :)

Anonymous said...

I remember those 2 radiologists, also - as I accompanied you during the procedure. Yes, they were fine to look at...

Laura Z.

Anonymous said...

You are an amazing woman.

andyson said...

What you have gone through both amazes me and scares me. I will be DF next Thursday as well. Will you be in any condition to say hello?

Anonymous said...

I have no words ... this is so sad ... I've always thought we'd figure out the health care system long before this ... but of course, we haven't. My heart goes out to you Hillary ...