Wednesday, October 28, 2009


Well it's the night before chemo is to start--at about 9 or 9:30 tomorrow morning and run for 6-8 hours--chemo infusions will take about 3 and the rest will be filled with IV fluids to protect the kidneys, as they are at risk of damage from the cisplatin. The other common side effects include:

* hair loss
* feeling tired or weak
* nausea and vomiting (this is the big one)
* hearing damage in the higher ranges

Less common side effects include:

* low blood cell counts starting 2-4 weeks after your infusion (the nurse navigator said it would be more like a downward spiral for ten days but more on that later)
* numbness, tingling, and reduced feeling in fingers and toes
* sweating, difficulty breathing and rapid heartbeat (which are very rare)

The other chemotherapeutic agent, pemetrexed, also shares some of these side effects but also can cause:

* red or painful rash on the face and chest
* sores in the mouth, throat or lip
* chest pain

That's quite a concantenation of side effects, and the cure is not guaranteed, in fact it's less than 50%. Nothing like bringing out the risk taker in me!

According to Ms. F, my nurse navigator at Group Health, who met with me today after

a) my scheduled appointment with the Speech Language Pathologist for my swallowing and speech difficulties (where I learned a lot), and

b) an unscheduled visit to xray for a chest exam and quick meet with my oncologist (because I had difficulty breathing while sleeping Monday night--chest xray showed no pneumonia and oxygenation of the blood continues to be good);

the path that my treatment will take is that once I have the chemo, my blood counts (white cells, red cells and platelets) will fall for ten days after the chemo. For the first few days, I may not notice this because I will be taking the dexamethasone for 2 days following. But eventually, I will hit bottom 10 days from the chemo, then the blood levels will begin climbing back up for the next 10 days, reaching normal levels. A blood test will be done the day before the next chemotherapy treatment to confirm this, then chemo will be administered a second, and then a third time after, again a 20 day wait. My nurse navigator did not pull any punches: she expects this to be a brutal treatment regimen. And I have to learn to say "No" to people, to put myself first in this and not to try to take care of others. I have a bottle of hand wipe by the front door for all visitors to use upon entering and one in the kitchen and my car and purse. I am hoping that no one who has as much as a sniffle will come by because they can't visit during this time.

My nurse navigator also said to be careful about flowers. They cause more problems when I am immuno-compromised than they are worth. And gardeining, a real love but for which I have small talent, is out for the most part--can't get dirt under my fingernails unless I double glove and take it very easy. So funny cards and emails are the best therapy for me, right now. Humor can heal, I've believed for a long time.

The other news from the transvaginal ultrasound was disquieting but not to focus on right now. I have two, not one, ovarian cysts. The first cyst is on the right ovary and is a .9cm cyst and then there is a 9.1 cm cyst with "minimal debris." There is also a 1.4 anterior body fibroid. My friend, L, the gyn surgeon wrote to me tonight that they should be removed after the chemotherapy treatment is ended. Because neither the blood test nor the PET scan showed that they were cancerous, we will just assume they aren't for now. Fine. As my friend, D, who very kindly chauffeured me to all my appointments today, and asked very good questions, when she was not out in the waiting room having telephone scheduling conferences with judges and the other side said: "You get to be a professional patient, now!" I will give them a run for their money, as always.

On to the meeting with the speech therapist, which was actually the most interesting part of my day because I learned so much. Hence the picture at the beginning of this post. And I hope I am remembering all of this correctly, courtesy of Ms. K.

Our larnyx is a tube located in the front of our neck, while the esophagus is located in the back of our neck. When not in operation, our esophagus is closed up quite tightly. It's only when we swallow that it opens up to take food. But these two different tubes, one leading to the lungs, the other the stomach, have unique arrangement in humans, the only arrangement that is seen in mammals where the tubes cross, which can lead to problems, like those that I have.

When you chew food and.swallow it, your epiglottis serves as the first lid, closing off the larnyx so the food is not aspirated, or swallowed into the lungs. The vocal cords serve as the second barrier to this. Think of the vocal cords as a "V" in shape, with the narrow part of the "V" in the front part of your neck, and the open part of the "V" in the back, next to the esophagus. When the vocal cords can't close, like mine, there is an opening in the back where the "V" is open, and sometimes food and water can be aspirated when the epiglottis, the first door, somehow fails to do close and thus, do its job.

So I have to take precautions. I cannot eat things like steak and pork chops anymore or sharp foods like (damn) chips and nuts and popcorn and uncooked vegetables. Etc. etc. etc. But I can soak croutons in soup, and perhaps even chips in dip might make it. Yay!! But no cookies or cake. Although cheesecake is still good. Phew. And I have to remember to turn my head when I swallow to help artificially close off entry to the larynx from the mouth. Because breathing is the most important function that the body does, that comes first. And, given our human physiology, sometimes that can cause problems. End of lesson for tonight.

Just one personal observation here. When I was very, very young my family took a trip to Coldwater Lake in Michigan and stayed with the Reeves family who had a cottage there. I remember being on the wooden float out in a deeper part of the lake, having been helped there by my father. It was wonderful to be with my dad, who as a pediatrician in a small town, I did not see very much. He wanted to teach me to dive from the wooden float. And I froze up. Perhaps it was fear of failure in front of someone I idolized, but I was also afraid of not diving and instead smacking into the water and the pain it would cause me. What I remember is having an total meltdown tantrum on the float in front my father and the other family as I absolutely REFUSED to even attempt to dive in the water. Fear of the unknown and fear of pain has been, at times, almost paralyzing to me. It's the dread the freezes me up. I hope I can overcome that dread tomorrow and acquit myself with integrity. It is one of the guiding principles of Reiki as told to me by my friend S, who gave me a third Reiki treatment this evening in preparation for the morning. A profound and moving session.

I owe many thanks to many people, from my online women attorney friends; to my friends at daily kos who commissioned a healing quilt for me; to my friends at work who are bringing me dinners; to my friends at church who will be doing dog walking and other chores for me; as needed, in the near future, to S, my Reiki practitioner and friend; to my friends A and D who have been my eager taxi drivers and participants in my meetings; to my mom, my sister B, and my daughter, S, who have been there every step of the way; to my friends and ob/gyns Drs. D and M who have shared meals, and their fonts of caring and perceptive advice with me; to my college friends who have been there for me in so many ways, particularly J and F who I have called on for their medical expertise and they have responded unstintingly; to my childhood friend, J, who is now a dentist in Cleveland; to T in Honolulu; and to all who have provided blankets, knit hats and shawls, and sent presents, cards or emails, or offered up prayers. If I am not throwing a tantrum tomorrow or breaking down, it will be in no small part due to all of your kindnesses along this very long way.

Thank you, all of you.


blue girl said...

Thinking of you, Moe. Good luck today.

Just one more thing. I went to a "chemo class" before a family member started treatment. And the instructor said that you should NOT have to suffer from nausea from chemo because they have drugs to combat it.

I'm not sure if anyone's mentioned that to you, but that instructor was adamant about it.

Something to ask about if no one's mentioned it to you?

Again, good luck. Warm and healing thoughts coming your way.

Dorothy & Michael said...

Oh moe. What a sobering, lovely and sometimes frightening post this is. It puts things into perspective for me, and I hope many others, about the daily crap we all complain about. It's nothing compared to what you will be going through. I'll be thinking of you often and hoping you are holding up.

Much love, Dorothy

moe99 said...

I woke up this morning thinking I'd forgotten to mention that they would be giving me 3 anti nausea drugs in the IV fluids: Emend or appretitant, the steroid I'm taking orally--dexamethosone, and ondavsetron (I hope I'm reading her handwriting correctly). My oncologist and my nurse navigator have both stressed that I should call if the nausea and/or vomiting does not go away. And I should also call about any fever over 100 degrees, changes in hearing or ringing in ears, yellowing of skin or eyes, and any allergic reactions among other things. Good thing I will have friends and family with me to observe as well.

4dbirds said...

I'm sending positive thoughts your way. I nursed both my toddler daughter and my sister during their courses of chemo. Lean on your friends and family because they want to help even if they're not exactly sure what to do. Peace.

Rana said...

*sending positive thoughts*

And, if you want it, here's a hug: *HUG*

Jolene said...

By the time you see this, you'll be at the end of a long challenging day. I hope it was not too trying and that you'll have a restful evening.

Like the rest of the folks, I'm sending good thoughts your way.

Deborah said...

I've been thinking about you off and on all day. Hope it went as well as it could.

moe99 said...

I misspelled two of the anti nausea drugs: Aprepitant and Ondansetron. Right now they are helping me keep things down.