My very first hospital stay

I was admitted to the hospital for my first round of chemotherapy on March 2, 2011.

Can I just say, what an introduction to a hospital stay. Prior to this time, I had never spent time in a hospital. So, I had no idea what to expect.

I received a phone call at 630am that day and was told to arrive at the hospital at 700am for check in, so I would be able to start procedures at 730am. I'm half awake when this conversation is going on so I say, ok, I'll be there.

So the day went like this:
Arrive at the hospital with only my purse in hand
Get checked in
- insert hospital food -
Get blood drawn, weighed and blood pressure checked
- call Dave and ask him to bring me a laptop and some clothes -
Get a PICC line (courtesy of a radiology nurse)
Get a chest x-ray
Get another blood test
- insert yummy hospital food -
- call Dave again and ask him to bring me crossword puzzles and a really little toothbrush -
Get a primer bag of saline (1L over 2 hours)
Get anther bag of saline and a primer bag of ifosamide (saline 1L over 10 hours and ifosamide 1L over 4 hours)
- insert yummy hospital food -
Get 24 hour bag of ifosamide (aka ifex)

It was a long day.

Yuck. So what is the treatment plan again?

When you find out about cancer, there are several questions you find yourself asking.

What is the treatment going to be?
Is it going to hurt?
When will it start?
Am I going to be sick as a dog and bald?

You never wonder, "Will I have to stay in the hospital for a week?"

Of course, I had the "stay in the hospital for a week (or so)" version.

Two rounds of Ifosamide (and Mensa to protect my kidneys) which is delivered via IV for 7 days / 24 hours a day (During that time frame you are treated to an extended stay in the hospital). The regimen is 7 to 8 days in the hospital (depending on the time of day when they hang the chemical bag and how long it takes for the bag to empty - approx 24 hours each), followed by 3 weeks at home recovering from the drugs. Then you do it again.

Round one was from March 2, 2011 to March 9, 2011. Round two was from March 29, 2011 to April 5, 2011.  I'll tell you about my hospital stays later.

After the Ifosamide, I received several weeks of Doxorubicin (5 weeks / 4 days a week / 24 hours a day) in conjunction with radiation (28 days = 6 weeks). I started the Doxorubicin on May 2, 2011 and finished on June 10, 2011.

3 to 4 weeks after completing treatment, another MRI

4 to 6 weeks after completing the Doxorubicin and radiation, more surgery to remove the rest of the tumor.

Yes, I did lose my hair and have only been feeling sick since finishing the chemo and radiation.

So exactly how do you tell someone you've been diagnosed with cancer?

I suppose telling someone about a cancer diagnosis is like ripping off a band-aid. Get it over quickly, let the shock settle in and then everything is all better (pending the questions).

From my own experience, when I said "I have cancer." Peoples faces run the gamut of expressions ... shock, fear, shock, fear, surprise, guilt (in the case of my mother, is it something I did while I was pregnant?). Let's break the reactions down:

Shock - what on earth could you have done?
Fear - what is the prognosis?
Shock - It must be something in the water.
Fear - Is it contagious?
Surprise - You? But, you don't smoke, drink, do drugs, and exercise regularly????
Guilt - Is it my (insert parent of choice you're talking to) fault?

Incidentally, the reactions are much the same when you are the one being told of the cancer diagnosis.

The Good, the Bad and the ridiculous.

It's been said, when faced with making a difficult decision, you should make a checklist of the pros and cons of each option. As such, I've made a bad news  / good news list (some of which has shown up in email)


The bad news ... I've lost my hair and I won't be working on my tan this season. Due to the radiation treatments, I'll have to keep my arm protected from exposure to the sun.


The good news ... we believe the tumor was found early enough so the standard courses of treatment (chemo, radiation, surgery) should be able to make me cancer free and able to torture people for a significant number of years.

The bad news ... I'll have additional surgery in around 10 - 11 weeks (Mid - Late July) to remove the rest of the tumor


The good news ... I've finished two rounds of chemo and have another 4 weeks of chemo and 5 weeks (actually 23 treatments) of radiation and I'll be done with that phase of treatment (my first round of in-patient chemo was March 2 - 9, 
2011, second round was March 30 - April 5, 2011). The hospital food was pretty good. UPDATE:  I've been done with chemo and radiation since June 10, 2011. Let the dance of joy commence!

The bad news ... Dang! It gets hot under those hats all day long, and we're heading into the warm weather.


The good news ... I apparently have a good head / facial structure for hats (I've also been told I have an attractive skull)

The bad news ... my mother's driving is something dreadful (she's out right now to help me with getting about)


The good news ... I have someone who comes to clean my house every few weeks, besides my mother being here to help

The bad news ... No sushi (or anything else that is not properly cooked)

The good news ... Dave told me to now worry too much about what I'm eating,  what's important is to not lose too much weight during treatment

The bad news ... I keep wondering if I'm going to have any nausea or vomiting


The good news ... no nausea or vomiting

The bad news ... I have a pump for my drugs (that I get to take with me everywhere for about 5 days 24 hours per day)


The good news ... for my current round of treatment, it's outpatient and I'm not hospitalized

The bad news ... I don't think I'd make it quickly through the airline screening process (gotta lova a portacath)


The good news ... Technology for drug delivery is pretty darn cool (gotta love a portacath)

The good news ... We are so going on vacation this year

Sometimes you just have to whine about something

Today was one of those days when the boredom hit like a rock.

The boredom is from the lack of creative expression. I used to regularly ad-lib choreography for my group exercise classes or training clients. Now, not so much. I sit behind a desk and get to be nice to people when the phone rings.

Have I mentioned how much I don't like answering the phone?

In any case, sometimes you just have to whine about something.

Sometimes all you need is a really good haircut

Cancer = Bald and sick as a dog

Maybe I'm strange but, those are the first things that went through my mind with my diagnosis. Not the side effects of the drugs (aside from bald and sick). Not the amount of time for treatments. Not the logistics of getting treated. Just bald and sick as a dog.

Bald. Four letters that instill fear in the stoutest of hearts. How was I going to feel when my hair started to fall out? Was I going to freak out? So I made a plan. I was going to have my hair cut shorter than usual to get used to having less, and when it started to think about falling out, I was going to have it cut even shorter. I was also thinking about getting an eyebrow template since I have no idea how to draw them in.

The first haircut was expensive. The second significantly cheaper (supercuts cheap). The third free.

The third haircut was at the salon where I usually get my hair done. I walked in and asked the owner to shave my head. He looked at me and asked if it could just be cut really short? I demonstrated why that wasn't feasible (all I had to do was run my fingers through my hair and it was falling out) and he said I'll get the trimmers. As I was sitting there it was remarkably calming, it was one less thing to worry about.

One more thing, there is no way to truly appreciate the stories of people shaving their head in support of someone with cancer. My husband surprised me at dinner with a shaved head. It was amazing.

How not to tell your mother something of relative importance

Back in December 2010, I told my Mother about my "tumor" and how I was going back for more surgery, her only concern was "As long as it isn't cancer."

Oops.

The surgical procedure went well, some of the tumor was removed (it was described as looking a bit like an over-ripe pear) and sent off for biopsy. Care to guess how often Mom asked if the results of the biopsy were back? Every darn day! Every darn day, she'd ask, "do you have the pathology report?"

Well, I never did have the pathology report, but, I did know what the preliminary test results were. So technically I wasn't lying.

Back to my point today ... How not to tell your mother something of relative importance ...

You should never ask your mother to go to an oncologist appointment when she's walking through a store. Apparently she almost walked into a display when I asked if she'd be interested in going with me. I don't know how long that was after she hung up on me before announcing to the store "It's Cancer."

So a patient walks into their doctors office ...

... and the doctor very firmly closes the door behind him.

Now like in most stories you know that isn't a good omen. That feeling in your gut that he's going to tell you something ... good? bad? who knows. He's just going to tell you something.

This was Jan 14, 2011.

He had the initial biopsy results from the portion of the tumor he removed on December 30th. The results? The mass looked like synovial sarcoma, but, was going to be sent out for further testing. Ok. No problem. Later the day got a little weirder. I got a call from the Doctors office saying I'd been scheduled for a CT Scan later in the week. Again, Ok. CT Scan, I can handle this. Just more exploratory testing. But, at the same time, this new test is making the cancer diagnosis more tangible.

That night, I talked to Mikey W., and told him about the initial results and swore him to secrecy until I knew more. There really is no point in scaring Mom before we really knew anything tangible. I also told my Brother what was going on and swore him to secrecy as well. So, why did I tell them? I told them on the odd chance that my Mother would hear (Dave told his Mom earlier in the day and I asked her not to say anything, especially to my Mother, but, you know how in-laws talk) about what was going on and nobody being able to explain to her what was going on.

That afternoon, I had the first of a few instances of "woe is me."

What a long strange year it's been

No, I'm not paraphrasing for the fun of it, and it's technically not quite correct. It's been a long strange 6 months (+/- a few days).

About 6 months ago is when I received my diagnosis of a rare form of cancer, synovial sarcoma. A sarcoma diagnosis accounts for approximately 1% of all new cancers diagnosed annually. Let's add that there are something like 20 types of sarcomas (synovial being one of them) and it ups the rare factor ... now let's add the placement of my particular sarcoma, the ulnar nerve sheath (the nerve that controls your pinky and ring fingers), which makes my sarcoma even rarer. According to my hand surgeon, there have been 12 documented cases. If one were to do the math, it just adds up to rare.

I've been asked by friends of mine if I had intention of blogging about the experience or if I had been writing in general and I think during the course of this adventure, I've been writing about it, mostly for myself, but, I think, now I'm going to share it with the cyberworld. So enjoy and I hope you can find the adventure as interesting (but far less painful) than I have.

Kelly