When You Realize That You're Less Awesome Than You Thought

At least my toes look awesome

So, I normally feel pretty good about myself because I think that I'm doing all of these awesome things and that I'm vigilantly healing my body.  This last week, was not about that at all. This last week was rough.

Although I was super pleased that my most recent CT results showed my tumors shrinking, I had not realized that Dr. Webster had me on the lightest dose of this Red Devil chemo that exists. It turns out that he was so worried about the extreme side effects that he had me on the same dose that you'd give kittens or butterflies. Because I'm a foolish girl, I gamely told him to ramp it up and that I could take more. Up until now I had taken whatever was thrown at me so you could forgive my ignorance. Well, I'm so tough when I'm on whiffs of chemotheraphy but what happened when I was on the real dosage?

I became a dehydrated, sad zombie-like girl. I thought that no one could help me and that I would never enjoy the feel of liquids running down my throat again. I lived in fear of the dry heave (which was stupid because I still did it all of the time.) Side note: my abs are looking awesome from the heaving....one solace is that I can search bathing suit websites for ways to show them off even if the effect will be ruined when I barf while sun bathing.
 I would like to sincerely apologize to anyone who has ever read this blog and thought that I was tougher than them because I'm actually not tough at all. I'm sure that you're way cleverer than me and that you don't alienate all of your loved ones because you'd like them to leave you alone while you self destruct. I am especially sorry that I used the last 2 days to snark at my best friend.

Because blogs shouldn't focus on complaining, please know that I have a plan.

1. Borrow my mums juicer for next round and drink fresh juice so that I have some hydration. This will work because water tastes flat and stale but juice tastes good so long as it doesn't have preservatives or sugar because those things now taste disgusting to me.
2. Sequester myself in a room with a bed and sleep for 5 days after chemo. Speak to no one and then I'll be so grateful when I get to back amongst the regulars.
3. Go to the library and take out 12 books. Finish books while alone in my room.
4. Buy wet wipes so that I maintain passable personal hygiene during sequestering period.
5. Make a pile of 5 pairs of pajamas next to my bed for previously discussed hygiene.
6. Create a stack of enveloped notes for Kill and leave them where he is. That way he can have evidence that I was sweet, once, before the chemo. Include gifts with the notes.
7. Use Q tips to create a sweet smelling biosphere in my nose. You can accomplish this by Q-tipping a small amount of scented lotion up your nose twice a day. It really works, I used to do it when I coached Junior High wrestling.
8. Pre-write peppy blogs, set to post while I'm in sequestering room. That way I can seem way more "together" than I actually am.

The Key is preparation and that was my error this time. I fell apart because I wasn't anticipating the longevity or intensity of the chemo effects. I will not make this mistake again.

Love,

Foolish Cailey

Coping With Chemo Delays

Delaying chemo is a very normal thing but it may drive you crazy as a friend, family member or patient because yet another thing is out of your control. I usually make all these plans (rides, magazines, movies that I plan on watching) only to have them completely changed due to my blood counts and the like. See, before each session of intravenous chemotherapy I go to the hospital on Thursday, get my blood taken and analysed, see my oncology team and confer on my health as to proceed with chemotheraphy.

The problem with chemo in the 1990's was that they hadn't yet figured out how to give the medicine without killing the patient due to side effects. Doctors have been refining this delicate balance ever since, by avoiding chemo when white blood cell count is too low because we need some infection fighters, hemoglobin is low (which clots our blood in case of cuts, keeps us warm and affects dizzyness or shortness of breath) or we have side effects which are too extreme such as constant vomiting or diarrhoea. If chemo was to proceed as usual then we might just get infected, become skeletors or have to be bubble people, no offence to the beautiful bubble people of the world.

This is why I've had to delay my chemotherapy infusions about 4 times in the last 2 years. Usually, white blood cell count reigns supreme as there is potential sickness every where and becoming a septic chemie is just not a good life choice :). I was delayed last week but I'll probably have a session this coming Friday (Friday is my day because of Dr. Webster's clinic schedule.) I was extremely flattered by my father last week because he told me that I handle these delays very well and that he knows some very tough people who he thinks would crack up in my situation. Thanks dad, I wouldn't have thought that I was going to be so good at rolling with it but I'm glad that I am.

Breast cancer and surgery

This is Dr Webster posted by another patient, Heather.

So my lovely oncologist Dr. Marc Webster referred me to a surgeon for a consultation this week. Her name is Dr. Daphne Mew (like a cat, awesome) and although the appointment wasn't perfect, it wasn't the worst either. I wanted to go in and have her say "you are a candidate for a mastectomy and I think it will prolong your life. Also, your reconstruction will look amazing!" Instead she said " you are a healthy candidate for a mastectomy and you're ideal scenario is to get radiation afterward. This means that reconstruction options aren't great and that your results will be cosmetically detrimental. Also, I don't think that surgery will prolong your survival." Overall, I liked her but she was honest.

Dr. Mew

It felt bad afterward because I'm a high achiever but it also felt bad because she wasn't telling us the information exactly as it stands. Stage IV cancer patients were ignored by curative research prior to 1995 which is why this stage of cancer is statistically untapped and they just don't know what will happen with certain treatments. I think that Dr. Mew is well informed and that doctors aren't sure how much their patients know or want to know. Luckily, Kill and I are wildly well read. Here's what we know based on medication trials, studies and papers published about metastatic breast cancer patients:

1. Lumpectomies and mastectomies are surgical options that stage IV's can choose and if the tumor breaks through the skin then surgery is better than the risk of infection (that info is straight from Dr. Mew herself.)
2. Women who have mastectomies either live the same amount of time as those who didn't or longer.
3. The worst part of a mastectomy is actually undergoing the surgery itself and coping with your changed appearance.
4. Radiation after surgery may increase the chance of disease-free periods however it also makes your skin less healthy, springy and stretchy for reconstruction.
5. Lumpectomies are equivalent to having no surgery at all as far as survival goes for metastatic patients.
6. Recent studies have begun to show that surgery is more beneficial for those under 50, who have had  a response to chemotherapy, have less tumors in fewer organs, whose organs function even when impaired and have long disease-free intervals (Cheng et Ueno, Vol 19 No 3, 2012.)
7.  Ultimately, the results are still inconclusive as to survivorship, which means that doctors have no statistical proof that surgery is better and will make you live longer. However, it doesn't seem to hurt except for the psychological difficulty of seeing yourself with a new shape, scars and the pain of surgery.

I've got some thinking to do.... mastectomy or no mastectomy?