Wednesday, October 21, 2009

Z's Cancer Has Spread

It was on my birthday, June 12th, that we found out Z's diagnosis of small cell squamous lung cancer. It was not inside her lungs but still it was devastating. And it was a late diagnosis since Z doesn't trust or believe in Western medicine. She is a practitioner of alternate modalities (her words not mine). And yet after a while of thinking she could battle this cancer with juice fasts and magic water (my term not hers) the tumor was pressing on her superior vena cava, making it hard to swallow, breathe, talk. It was getting worse fast. Her daughter came and put so many things in order, and it was her influence and research that put Z in touch with the best pulmonary oncologist in Utah at Huntsman Cancer Institute. She got the best pulmonary radiation doctor in Utah. And Z hated every second of her care. I was never allowed to accompany her to any of her appointments despite asking. So I gave her rides to and from her early treatments which she reluctantly agreed to. I helped her put her clean her closets so Z's youngest son and his partner and her son and their son could move in and care for her. They were given the full house and Z was moved out of her bedroom and into the small basement room where it would be cool and quiet. Then I had to butt out, since her kids caring for her meant a great deal to her. I felt their care was not only inadequate, but worse, it created more work for her and very little nurturing care from them. She called me to bring my little French vacuum over to vacuum her bedroom in the basement, crowded with the washer and dryer, piles of dirty clothes, their vacuum and anything else the young woman partnered with Z's son didn't want in the upstairs. I cooked her favorite things and took her anything she craved but I got harder for her to swallow. And all the time I wondered what her son and his partner were doing to help her. The young woman did not work out of the home, but stayed home with her toddler and baby all day. But she never seemed to do much for Z. One day I called to find Z cleaning the fridge. I was seething with rage. She was too sick to be doing anything but getting waited on, fed things that sounded good to her, kept clean and quiet. But any critical comments about her son and his lazy (my word) girl friend and the lack of care, the absence of nurturing they exhibit towards Z makes her jump to their defense. They're sick, they're busy, they're tired. Frankly I don't give a shit what their excuses have been for not shopping, cooking, serving, cleaning up after and around Z. They live in her house rent free to make it easy on them to take care of Z. They have been awful at taking care of Z.

It was months before she told me what stage her cancer was. Stage three. Dire, but not yet matasticized. Her prognosis was 30% chance for a good outcome with aggressive chemo and radiation. She balked and tried to find a way around it. She hated her doctors and claimed the only reason they treated cancer was the big bucks. She said her treatment would buy a new set of golf clubs for her oncologist. I have a close friend who works as a researcher at Huntsman and asked her to check this doctor out. Her report to me was that he was a very good doctor. Not the best bedside manner, but top notch skills. He is the best pulmonary oncologist in this part of the country. But Z could not be convinced that he was not a charlatan.

In the time since June 12th she has had pulmonary embolisms, severe pain in her hips and shoulders, pneumonia, and the pain from radiation burns as they tried to get the tumor to shrink back from her vena cava so she could breathe and swallow. At every turn in this journey there wasn't a day she wasn't pissed off at the doctors and technicians who administered her radiation and chemo. She kept looking for a "natural" cure for her cancer. When her hair started falling out she wanted to stop chemo. She was sure they were going to kill her with the chemo. They didn't understand that she was too "pure" for this level of chemo. She'd been a vegetarian for over 30 years. Her system wasn't like other peoples, she kept insisting. She was furious that her oncologist didn't acknowledge her slight weight as a reason to back off the chemo. Z is 5'8" and weighed 115 when the treatment started. She's now probably 95lbs, if that.

Z got through the first round of radiation and chemo and had a couple of weeks to recover some strength. Then her doctor ordered another round of chemo. She had one treatment and then refused to continue until they did another PET scan to see how much the cancer had shrunk. She got the results yesterday. Her cancer is now in her liver, spleen, and lungs. The original tumor, which was "lung cancer" wasn't actually in her lungs. It was outside the lung and pressing on her airways. That tumor had shrunk some, but the cancer had matasticized. Now she's no longer willing to receive any more Western medical treatment. They offered to give her hospice care. And this offer of hospice is to her a confirmation that Western medicine has failed her.

Before she got the results from the PET scan, she'd found the cure she'd been looking for. It's hash oil. She found a site on the internet that promises to cure lung cancer with the use of hash oil. To my way of thinking anything that gives her hope or makes her feel better is a good thing. She says she's leaving Friday for Southern California where her two oldest sons live. I wanted to get her a first class ticket on a plane, but she wants to have her car with her. So her brother is driving her to Southern Utah where she'll spend the night. Then she plans to drive herself to Las Vegas to meet up with her middle son. He'll fly in to Las Vegas to drive her the rest of the way to San Diego. Her oldest son and his wife and twin daughters live close to the beach in San Diego.

Z is my oldest, closest friend. We met at seventeen as early admissions students at the U of Utah. We were the first early admissions students the University accepted and the only girls in that first group of six. We were as different as it's possible to be. But for some reason the friendship grew and though we have spent years living in different parts of the country, married, divorced, and out of touch, whenever we did see each other the old friendship was just like it always was. She is my Executor, has medical power of attorney for me. We never thought I would outlive her. I'm bipolar and have what used to be called Malignant Hypertension. The leading cause of death for people with severe bipolar disorder is suicide. I wasn't expected to live this long. Now it looks like I will survive her. How strange is the landscape of my life without her in it.


Jenn Jilks said...

I can hear your pain. I just stopped in.

My mother denied her cancer and pain to everyone.

When I wrote my book about it, I sent a copy to my mom's dearest living friend. Her best friend told me that she spent years sitting beside mom in choir and knew nothing about the radiation and chemo mom was taking.

It is difficult to respect the wishes of both friend and family as they deal with health issues. You cannot live it for them, and yet it is hard having them think about what you would like. My late mother's friends wanted a chance to say goodbye, and how much she meant to them.

All the best.

Laura said...

I'm so sorry. I can't even imagine how difficult this must be for "Z" and you....
I was hoping that her outcome would be better..


Gail said...

Hi Utah-

I am incredibly saddened by this news for "Z" and for you. Sometimes nothing makes sense.

Love to you and hope too

Utah Savage said...

Jenn, thank you for the kind words. Z had been sick for a long time before she saw a doctor. She refused tests at first because she wasn't on medicare and had no insurance. When she got medicare then she finally agreed so testing. The first test found the cancer. It was stage 3 by then.

Sunshine, thanks. It's nice to know you look in on me. I'm sorry I'm not making the rounds, but one of these days....

Gail, thank you. I know you are dealing with your own health challenges. I'm wishing you all the best.

Steve said...

My love goes to you both. Wish I had more to offer or say.

Mauigirl said...

So very sorry to hear this. Lung cancer is a horrible disease. I hope your nurturing will help her as her path gets more difficult. She is very lucky to have a friend like you. Both of you are in my thoughts.

Life As I Know It Now said...

I am so sorry to hear that your friend is dying. You prove your friendship and care for her by being with her through all of this but it is never easy. Take care of yourself too dear.

Fran said...

You know, I was thinking we had not heard an update about Z lately..... and then this post.

I have to say, I admire a person taking control of their own life. When you have a big bad disease, you literally have a medical team-- but the patient is THE head of the team.

Z knows her own body. She knows what she can tolerate, or not- even though this disease is spreading, she has the control to say no more of this intense treatment.
She knows she has had enough.

Rather than spend hours and days immersed with harsh medical treatments- and even if medical staffers do their best to make you comfortable, and are kind, that scene is surreal.

Perhaps the very best thing Z can do for herself is surround herself with the family she loves, and go enjoy watching the shimmering water & ocean waves. Take in the beauty of sunrises & sunsets, and enjoy sunshine at the beach.

No more IV's and meds so radical, they require a whole additional wave of meds to counteract the side effects of the first wave.

Z has chosen quality of life, and has liberated herself from the Western medical approach which she did not believe in.

Z has set herself free, and I hope she is able to savor the life & time she has remaining.

You have been a good & caring friend to her.
I hope you have a chance to have a get together before she goes to California.
Even if all she can drink is a green smoothie of juice.
Your friendship is close & something you both cherish. Life has been sweeter for the relationship you two have shared.

Sherry Pasquarello said...

i hope for the best. whatever that might be for the two of you.