hipgrandma's Cancer Blog

October 27, 2006

the new normal

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Today, for a change, I want to start off with my gratitude journal, and then I’ll get to the bitchfest later.

The whole gratitude thing seems a little smarmy, well, a lot of stuff seems corny until your life is threatened and then you do whatever works. For me, counting the blessings is a REALLY important part of getting through each day.

First and foremost, of course, I am so grateful for my husband Dan. Oy vey, how would I get along without my soul mate? Not only would I not have the love of my life constantly by my side as I go through this process (the rad tech can’t believe he comes with me to radiation every single day), I also wouldn’t have a top-level health care provider on call 24/7. So it may be hell going through chemo and radiation at the same time, but my journey to the underworld is not alone.

My children, my children, my children—what would life be without them? Ariella is my best friend and, not only that, she gave me KAI! Ariella calls every morning to see how I’m doing and if I’m up to having some fun with my grandson. Whether I am (up to it) or not, I at least get to see the kid every single day, and that’s some great medicine. There is NO substitute for the power of the grandson.

Orion also calls me every day (even if I’m seeing him). He always asks if there is anything he can do, and he does plenty, from walking the dog to grocery shopping to car washing to the greatest gift of all, procuring, processing, and providing the herbs that I take. Best of all, though, are the hugs. I’m not kidding! Lately that boy (man) is giving me hugs the likes of which I haven’t had since he was about ten, and that nearly makes this cancer shit all worth it (laugh).

Hey, and who has in-law problems? Not me. For one thing, there is Jeff, my son-in-law, who does more for my care than could ever be believed. Jeff is an advanced acupuncture student, and his day job is working with Dan as acupuncture assistant. So he gives healthcare to a lot of people, and does so really beautifully, but no one gets the amount of care from Jeff that I do. Good work again, Ariella, on bringing wonderful new people to our family.

Furthermore on the in-law thing, there’s my sil Donna, another of my best friends. Boo hoo, I was an only child, and always dreamed of having a sister. Well now I do. Donna supports me from afar and it’s sad that she’s in New York and I’m in (beautiful sunny) Miami, but she writes emails more than daily, sends flowers, gives sage advice (this sucks—she’s a cancer survivor, too), and arranges visits as often as possible. She also has provided wonderful new family members that are equally adored—her husband Alan, and kids Abby, Alex, and Emma (our super-beloved nieces and nephew).

Other helpful friends who are part of my cancer support: Leslie McKnight, who sent me a box of nine headscarves in anticipation of my soon-to-be-baldness, and who writes me supportive emails on a very regular basis.

Susan G. who also writes me a lot and gives the kind of support that cancer survivors can give. Both these friends write and write and tell me not to write back till I feel up to it. That’s a big help.

Brigitte who comes over and does moxa, and let me tell you what she did after one of my surgeries. I was worried that my little cat was going to get prego because I hadn’t been able to get her to the vet for spaying. Brigitte picked her up from my house, took her across county lines to the best veterinary surgeon around, picked her back up and brought her home, and even paid for the whole thing. That’s a kindness that will be long remembered! It was a little annoying that Bastet ended up with a better hysterectomy scar than I did, but why should she have to share my suffering? I shoulda gone to the vet instead of my “famous” gyn/onc, Dr. Manuel Penalver, who screwed me so royally (whoops, not time for the bitchfest yet).

Ellen Gray, who visited me in the hospital, during chemo, and always seems to be there during these fun, fun times, providing whatever it is that is exactly right in that moment. It’s not easy to visit the very ill—what do you say? But Ellen always knows what to say and what to bring.

And my health care providers—I want to express gratitude to them, too. My gynecologic oncologist Jacob Tangir seems honestly kind hearted and caring and I have to say those are unusual qualities in a doctor. He’s kind of hard to reach by phone, so now, at his suggestion, I’m sending him text messages. Whatever works! The best thing about Dr. Tangir is that he’s ivy league, no, seriously, that he will ALWAYS answer all my questions and never makes me feel rushed during visits. Also unusual, or maybe unheard of, in a doctor.

Mia Glick is my yoga teacher. She comes to my house and does restorative yoga with me. This is a style of yoga that is accessible even to the very ill, and Mia, who teaches pre-natal yoga, can do sessions with me even when I’m at my worst. This is a HUGE help and, yes, I am so grateful. I couldn’t recommend this style of yoga more to other cancer patients or anyone who needs special care.

Our family doctor is Martin Dayton. He’s always been our doctor even though I sometimes go 10 years or more between visits. Not anymore! Last year, when this all started, Marty was there to meet us at the ER when I nearly bled to death, and he’s been very attentive ever since. Now he’s become the provider of my medical CAM treatments for cancer. What good fortune to have access to someone like this who treats us like family.

Speaking of family members, Dan’s cousin Steve Unger, a general surgeon, has now operated on me twice. This is going to be graphic, so skip to the next paragraph if you don’t want to read about my vagina. After my hysterectomy I had a horrendous vaginal discharge. When Dr. Toonkel, my radiation oncologist, examined me, he said he was worried that this could be a fistula, and sent me packing for an exam by Dr. Penalver, who stated emphatically that everything was normal. This was my last visit to Penalver. During my second surgery, cousin Steve discovered that there was a HOLE in my vaginal cuff where there was an adhesion with the omentum. So I’m grateful to Steve (amongst other things) for giving me back a working vagina.

My cousin, Charlie Johnson, is also undergoing radiation treatments right now. He’s another very supportive emailer, and he just so happens to be a GREAT writer. I told him it’s because we are both oh-so-distantly related to Ralph Waldo Emerson (ha, it’s true, I’m a closet genealogy buff). Charlie is also so far away—Sacramento, CA. Wish we were closer, but I’m so GRATEFUL for the internet. It might not seem like such a coincidence to have cancer at the same time as your cousin, but there’s only four of us, total. Not like Dan, who has 21 first cousins. Charlie has prostate cancer so we can talk about the unpolite things that characterize having cancer involving sexual organs. What a screwy culture we have that can’t talk about illness at all, but esp not when it comes to things “down there.” Kind of direct talk for people descended from the Puritans (OK, now I’ve publicly admitted that, too, and “outed” my cousin).

I am feeling much better from last week’s chemo, just in time to start experiencing the side effects of the radiation! It’s the end of week two of radiation, and that is usually when the shit hits the fan (if you’ll pardon the pun). It’s going to be a ton of fun differentiating between chemo sick and radiation sick. Did I agree to this voluntarily?

Radiation side effects so far: nausea, dizziness, and FATIGUE after the treatments.

The outrageously bad chemo neuropathies have subsided to just plain old numbness in the fingers and feet. Hey, speaking of gratitude, at least I don’t have to go through this in a frozen climate where people with neuropathies can get frostbite without even realizing it. There are lots of other injuries you can sustain without knowing, though, so I bought an electric razor (cutting oneself gets dangerous as red and white blood cells go down). Cooking is hard, and I’m not exactly in good balance these days, tripping over my own feet, and hopefully not falling down and getting injured. The good news about the neuropathies is that Tangir agrees with Dan—this is unusually early onset and quite severe, but this type doesn’t normally lead to permanent nerve damage, as some people get from chemo.

The other big issue that persists is my sore neck. It started with the uncomfortable position for radiation and while it’s constantly getting treated, it’s still a daily issue.

To coin a phrase, TGIF, since after today I’ll get two days off from radiation.

Thanks for reading!

Posted on October 27, 2006 at 7:19:46 AM by jane ( the new normal, 1 comment)