GOOD NEWS OR BAD NEWS FIRST?

Which do you want to hear first, the good news or bad news?

Now that I’ve learned definitively that I have a recurrence of cancer in my liver, that I am not “in remission” anymore, that I’m facing a new episode including surgery, chemotherapy, tests, hospitals, nurses, complications, recoveries… setbacks.

“Oh my God – What the FUCK?… I mean… what the FUCK!!?” Chris, my brother-in-law, echoed the disbelief already in Matt’s and my minds when we told him over the phone of the new diagnosis. We saw him and his daughters off to the airport just yesterday, after a weekend of sunshine and great sunset meals and river playing. Everyone one was healthy and fine yesterday. Today is grim business for just us two.

Matt and I have been through this once before. Getting the diagnosis, calling doctors, family, insurance, researching everything the doctors told us for hours and worrying about what’s ahead. The difference is that this time I have WAY better insurance (thank you Obamacare!), being more familiar with the process, we are better at putting the dysfuctional worry aside. Still, at bedtime the worry and unknown inevitably come back in the dark and worms around in our minds for hours.

I always take THE BAD NEWS first:

So the back story is, per doctor’s orders, I maintain quarterly blood tests, coordinating with my oncologist in Santa Monica whom I have worked with for 2 ½ years. I saw him last in January 2014. I also maintain annual colonoscopies and CT (Computed Tomography) scans per my new gastroenterologist’s orders. All have shown good results, and to my knowledge I have been in remission for over two years. Back with the original 2012 diagnosis for colorectal cancer, I had a CT scan reveal two liver cysts which concerned the doctors that they could be metastases from the rectal tumor, yet they could also be innocuous, a normal liver cysts that lots of people have, a reaction to birth control pills or some other chemical, which are unlikely to become threatening. The 2012 PET scan showed that these spots were of no concern.

*Positron Emission Tomography (PET) is a test where a radioactive isotope introduced in the blood stream shows thermal “hot spots” where active cells appear illuminated in the results, whereas CT, or CAT, scans use a large number of 2-D radiographic images to create a 3-D image of the inside of the body.

Last week, during my second annual colonoscopy check-up, I had a precancerous polyp removed from my colon. Nothing unusual or concerning, these are common and easily removed with no further action needed. The CT scan, a few days later, showed two “nodules”, or solid masses, which were new since last year. This result combined with the most recent blood test revealed elevated CEA levels (a cancer marker), caused my GI concern. He ordered a PET scan and recommended an oncologist appointment to discuss the results. Anxiety!

The scan was on Friday afternoon. When Matt and I showed up for the exam, we were surprised to find that it was a full-body scan. Was this a mistake? The spots were on my liver, after all. But it made sense even before it was explained; of course, if the cancer could spread to my liver, then it could also spread to the lungs, the brain, the bones, anywhere. I happily did the PET, then went home thinking, this is all a big joke and they’ll see that it’s nothing! Just the same old cysts, maybe they haven’t looked at this year’s and last year’s scans side by side? I’m healthy and happy in my life now.

Then there was a bleeping holiday weekend and most offices were closed on Friday, and all offices were closed on Monday, and it was hard to get a hold of any doctors or staff to ask questions, even to make appointments. Ok, so I got an appointment with the oncologist for Tuesday, thank goodness. All we wanted to know now was what the PET results were.

liver

The PET showed very clearly hot spots where the two liver nodules were (meaning activity, meaning cancer!!). Do you know how big a liver is? I really had no idea. It’s pretty huge! Anyway, there’s one nodule on the left and one on the right. The one on the left (or my right) is 3x3x4 cm, and the other is 2.5cm.

Holy lordy lord! That sounds really big to me. Considering we are talking one year ago that there was nothing but the cysts, and the CEA level in the blood was not alarming until now, either, these nodules sound really unreasonably large. Listening to what the doctor was telling me, all the worries I’d had during the night over the past weekend were coming back, and as I tried to focus on his words, I was intensely aware of my heart rate and how sharp my awareness was. Especially for Matt, who I knew was sitting next to me sweating outwardly and panicking inwardly.

THE GOOD NEWS IS:

frowny-face-high-blood-sugarThe nodules are compact and “localized” meaning they will be easily removed with surgery, and I will “still have a lot of liver left”, said the doctor. “Oh good!” I thought, although I like my whole liver, ayayay… frowny face.

There are no other occurrences than the two liver nodules.

The cancer has not proliferated throughout the liver, in which case they wouldn’t even attempt surgery, just attack with lots and lots of chemo.

So, I guess for a bad scenario, it could be worse! The recommendation of Dr. Look, the oncologist is to operate immediately to get the cancer out, and then they will know exactly what kind of cancer they are dealing with and will design a chemotherapy for it. This one will likely be systemic rather than targeted, so I’ll be shopping for wigs and warm headwear.

Now, I do have a second opinion with another oncologist scheduled for later this week, so, more to come.

Oh, my poor Matt. When we met I was the perfect picture of health and vitality. I had few needs, was a great friend, partner, lover, playmate, I added value to his life by being his foundation, loving unconditionally and taking care of anything he needed the best way I could. Now I feel like a real bummer! A disappointment. I expected that I would be healthy and strong into old age, take care of my darling husband, my parents, anyone else who needed me, and I’m being taken care of, now, in my 40s. Although I am staying positive, it’s hard not to not go to the dark places.

What the heck is my body doing? This is completely out of the plan! Not that there was a “plan” per se. I feel alienated from my body, like it’s letting me down, mysteriously letting illnesses get in, getting weak. But it’s my body. It’s life. And just when I was getting everything back in sync, seeing a NP, a Naturopathic Physician, who is helping me reestablish an equilibrium with diet and lifestyle, peace of mind, etc. Sometimes, she said during a recent appointment, these diseases are not caused by immediate environment, or just the previous generation or two. These diseases can go back 3-4 generations to the conditions our ancestors experienced and telegraphed through the generations. Also, as was brought to my attention,that the ancient Egyptian remains show evidence of cancer.

Makes sense to me, because how could some of the healthiest people still get terminal illnesses? The answer is, it’s beyond them. This notion, at least, allows me to believe I really didn’t do anything “wrong”, and I can blame my ancestors. Hee hee. Small comfort.

Good news and bad news aside, ONWARD! A new chapter begins.

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3-DAY COUNTDOWN TO COLORECTAL SURGERY

Hello! Well, it’s 3 days away that I’m expecting surgery to remove a cancerous tumor from my rectal tissue,

And life has never been better than right now.

Last week Matt & I met my surgeon, Dr Tracey Childs. We went over questions and examined the results of the chemo/radiation. We were encouraged by the long-term success rate for this procedure. The tumor has shrunk down to a flat ulcer, which has given me incredible relief from symptoms. The surgery is this Wednesday May 23rd, and I am confidently on track for preparation and even feeling easier about the procedure. Matt will be staying in the hospital room with me. Having Matt here with me is something I am extraordinarily thankful for; he has made the most anxious of tasks easier to cope with. This time has been transformative for us as we realize we need and trust each other in a whole new way.

There will be 3 incisions made, local anesthesia used (I assume I’ll be out-cold, too). The tumor tissue and total mesorectal envelope will be removed and studied for lymph metasteses. My intestine will be crimped and temporary iliostomy bag attached to a port in my abdominal wall. We went over pain management, Dilaudid PCA + Toridol basal drip post-op. Due to acetaminophen allergy, vicodin and norco were ruled out, and Oxycodone was prescribed for home use.

I will be up and walking around by the first night. My stay at the hospital 3-7 days (I’m guessing by Monday or Tuesday May 28 or 29). Once home, I will have home health visits each day as I learn to handle the iliostomy. I will be able to eat whatever I feel like by modifying, ie cooked rather than raw vegetables. A second surgery is to happen in 1 1/2 months (about early July) to remove the ostomy bag and reattach the intestine to my new, improved colon.

I have ordered a neutraceutical alternative med (Capsol-T) which we learned about through Matt’s ex-wife/my guardian angel, Olivia. This is OK with Dr Childs, as long as it will not interfere with the post-op treatments and healing, but she will discuss with the medical oncologist, and doesn’t foresee any problem. It is a derivative of green tea and capsicum (chili pepper) which synergistically works to destroy the protein layer which forms over normal cells and turns off the normal death mechanism of the cells causing them to grow out of control (fascinating, no?). It’s touted as a stand-alone cancer cure. I will use it as a just-in-case treatment after the operation is over.

I am working out daily, creating art projects and going on nice dates with my darling Matt. My hospital stay will be private and quiet to concentrate on healing my way out of there. Your thoughts and encouragement are genuinely appreciated. I am quite scared of what my precious body is about to endure, but my gaze is ahead on the light at the end of the tunnel.

Michelle_&_Matt

Photo by Audrey Rader

Love,
Michelle
Starting Weds: St John’s Hospital (310) 829-5511
2121 Santa Monica Blvd.
Santa Monica, CA 90404-2091

PARTNER PROTECTIVENESS

My dear fiance Matt has taken to protecting me like a mother bear protects its baby bear.

When he sees strain in my face, he is on task fixing my discomfort. I don’t have to ask, he is there. He’s heard me moan, cuss, sob, and suffer in stoic silence. He has seen me crumble and break down during movies with parent and child interactions, causing me sorrow over my infertility due to internal damage from the cancer radiation treatments. I have finally found a man who would take on the journey with me, and was looking forward to it, until we learned that through saving myself from cancer, I would lose my fertility. The experience of raising my own kids is something I will miss out on, and long to have.

eggs_colorectal_radiation

Eggs before colorectal radiation

scrambled_eggs_after_colorectal_radiation

Eggs after colorectal radiation

So when my parent friends tell their proud stories and observations of their kids to me, one might think I would feel sad and mournful over my unfulfillable desire to have children. On the contrary, I do not. I’m not sure exactly why, except I live vicariously. My imagination allows me to feel what my friends are feeling for their children without bringing in my own sorrows. I am quietly studying their relationship with their kids as a psychologist would, and learning more about both the depths of my friend and their child as whole individuals.

Matt understandably wants to see that my friends are aware of my silent struggle and be sensitive about how they share their stories around me. I am proud to have a man who is so in tune with not only my feelings, but with other peoples’;  a very, very rare quality in a mate, and I happen to have one of those rare mates.

Upon recently observing a long conversation with a dear childhood friend about her kids, Matt felt strongly that with me, this friend should frame her discussion to include what qualities my life has without children, to protect me from my own mixed feelings. So he confronted her while I wasn’t listening.

Now, a guy would do this for me??? Never before have I experienced this act of compassion from a mate, except maybe my own dad.

The next conversation with this friend, she had done some thinking and she described beautifully how her life and my life have criss-crossed over the years. At times she has looked at my life and questioned her own circumstances, and was certain that I had looked at her life and questioned mine. She sees my life without children as an opportunity to experience things that parents with children want to, but have difficulty doing because of the constraints of parenthood.

The next day Matt confided that he had approached my friend, and then it became clear what inspired her discussion with me. Well, it turns out both my friend and Matt were showing integrity, both taking care of me.

Now, I have a number of girlfriends who at my age, 39, have not had children either by decision or by circumstance, so I am in good company, and definitely do not feel, “poor me, I am the only one…” Matt and I will continue to build our foundations and experience travel and adventures as we love to do together. And we will be role models and influence the kids around us who need us.

When Matt and I get married, I will have a stepdaughter, Chloe, who has accepted me as ‘Mom2′. Now, there’s somethin’!

Matt_Chloe_partner

2nd WEEKEND, 1st FULL WEEK

3/17/12 Fri.

Today was lo-key.

I finished the first full week of treatment, and today I just felt like kickin’ it in bed! So that’s what I did. Matt, too. I think he wants to go through my whole experience as much as he can with me. It’s sweet he’s so devoted. We eat a lot together, take supplements together, watch movies together – but – he doesn’t have to give up any beer. He’s got a pretty good deal, no? 😉 Really, I’m pretty wiped out. Tomorrow should be easy, but today was a boneless chicken kind of day.

WAKING UP FROM A DREAM

I still think, every once in a while, how disbelieving I am of having cancer.

I’m following the therapy routine best I can, taking the pills, driving to the city for radiation treatments, taking notes, updating friends, etc. I’ve adjusted to the routine pretty successfully. Everybody recognizes that I’m ill. But it still it seems like I’m going to wake up back in my normal life, before all this started. I wonder when the ‘freak out’ moment will come, when I ultimately realize – it’s not a dream! This is rhetorical, as I know no one has an answer.

CALORIES: GOOD

I NEVER thought I’d be happy about gaining 4 lb!

Went for radiation, then met with my oncology dr, all’s well, but feel like I did a hard workout and I could eat an entire roast without help. At least my apetite is good.

 

Standing Ready for Diagnosis

Standing Ready for Diagnosis

Ok, February 28 I began posting cancer updates to my Facebook timeline. If one person gets a life-saving colon check-up because of my experience, then I’ve made a difference.

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