I'm not sure what to call this post.
It's been quite a while since I've even logged on, I have to admit it took several tries, even cutting & pasting my login & posting password.
I'm posting this mostly to get it out of my head.
I had actually gone back to work and was very busy.
It was exciting to feel useful and needed again.
We were beginning to dig our way out of the financial hole that we had found ourselves in.
We had health insurance again so I convinced my wife to finally get that mole removed from her left forearm; it had been annoying her for a while now. It was in an inconvenient spot that she kept bumping against her desk.
We weren't concerned about it, it didn't appear like any of the images we found online of skin cancer.
Life changes so quickly.
She called me at work a little over a year ago, barely able to get the words out.
It was cancer, melanoma.
We were referred to a local plastic surgeon for a follow-up, the tumor was too deep for the dermatologist to get it all.
He removed the rest of it right there in his treatment room and scheduled surgery to remove a 2 cm margin around the tumor to make sure they got it all and to do a sentinel lymph node biopsy to see if it had spread.
Our hopes were running high after the surgery, he finished an hour faster than he had planned and while he was still cautious about it & said to wait for the biopsy, he told me he was hopeful.
That's the amazing thing about cancer, you keep hoping for the best, and it keeps kicking you in the balls.
The biopsy of the lymph node discovered a 3 mm tumor, not really very big.
We were referred to the Rogal Cancer Center at the University of Michigan because they're supposedly one of the top melanoma research centers in the country.
We made the 2-1/2 hour drive and met with an internist, a resident doctor, a physician's assistant, and an oncological surgeon who scheduled a full set of scans. A CT scan of her abdomen, one of her chest and an MRI of her skull.
It seems melanoma has this habit of seeking out all of the worst places to go and hide.
The purgatory between scans and follow-ups with the doctors is the worst time.
But, lo and behold, her scans came back clear!
Nothing but 2 nodules on her lungs that weren't a concern.
According to the person on the phone, about 85% of the people who have scans done of their lungs have some kind of nodule.
We were ecstatic!
The surgeon said that the plan would be to "monitor closely" and set a follow-up appointment 4 months out.
We asked the surgeon about a medical oncologist because they had said at our 1st meeting that we'd meet with one and develop a treatment plan based on the results of the scans.
The response was, "we can set that up if you want."
We didn't see the need because:
Her scans were clear and
as far as we knew, there weren't any effective treatments for melanoma anyway.
But we weren't concerned.
We beat cancer!
Not so fast hotshot.
The lump under her arm where the sentinel lymph node had been removed started growing about 3-1/2 months out.
At first, we thought it might be lymphedema, a condition that occurs when lymphatic fluid doesn't drain properly because lymph nodes have been damaged or removed.
By the time we got back to U of M, it was the size of a grapefruit and she couldn't put her arm down.
The ultrasound didn't indicate lymphedema, there was a mass there.
They took Amy to a treatment room and did 2 needle biopsies and evaluated them while we were sitting there.
If you've never seen a needle biopsy, be glad.
It's a brutal procedure that seems more medieval than a 21st century "medical" procedure.
Non-typical melanoma was the immediate identification.
PET scans were scheduled, and surgery.
The internet can be a good thing and a curse.
We both studied up as much as we could about melanoma and every type of treatment we could find, both traditional and alternative.
I won't name all of the web sites or organizations.
But people have survived melanoma for decades using alternative treatments.
We got her a medical marijuana prescription and started the Rick Simpson protocol.
We found a clinic nearby (20 minutes from home) that offered IV Vitamin C treatments and Ozone therapy and scheduled a visit as soon as we could (this clinic IS NOT where we got the medical marijuana prescription).
On our way home from that 1st meeting was when we got the call from The U of M cancer clinic with the latest scan results.
The cancer had spread, her body was virtually riddled with it, spots on her liver, spleen and one in her skull all lit up in the PET scan.
The surgeon called us to personally let us know that he was canceling the surgery and offered to set up an appointment with a local oncologist.
We felt like we were on our own.
We paid for IV Vitamin C and Ozone treatments out of pocket, because insurance only covers conventional treatments.
We bought a medical grade ozone generator and Amy began doing green coffee enemas.
It was agony for Amy, her liver was taking the brunt of it, both from the cancer & from the coffee enemas.
It was agony for me as I tried to comfort her, and could only hold her and say, "I'm sorry."
Amy went to our kids' fall concert and on the way out of the performing arts center, she was knocked down from behind by a woman who had lost her balance and fell on her.
We didn't think much of it at the time, just some soreness and a little bruising on her back.
On a trip to the clinic for an IV, she was in a lot of pain and the PA at the clinic said we should go straight to the emergency room and find out what it was.
It turned out to be 3 vertebrae with compression fractures. The CAT scans they did on that first ER visit said the cancer had spread all over now.
All they could offer was "palliative care" (i.e. pain meds).
Amy's sister came up for a month to help.
When she took Amy to the clinic for a vitamin C IV, she noticed Amy's eyes were jaundiced, so a week after the 1st trip to the ER, back to the ER she went.
She was admitted and given IV fluids, painkillers, scans, bloodwork; the whole nine yards.
Each day as I passed the chapel on my way to her room in the oncology ward I paused.
One day, I finally went in and prayed.
I prayed for her to be healed.
The next day, I prayed for her to not have to suffer for my arrogance.
On the third day, I gave it all over to whatever higher power exists.
I admitted there was nothing I could do, I was weak, powerless.
That was the day when the hospital asked if we wanted to see an oncologist.
At that point, we had nothing to lose.
The oncologist told us that there's a specific mutation of melanoma (BRAF) that a drug had recently been approved to fight.
They had seen tumor shrinkage as much as 40% in as little as 14 days and it was a pill.
But the test for the mutation takes 5-7 days for the results.
We mentioned that we had been working with the U of M cancer center and gave her the contact number there.
Turns out, U of M had done the test and had the results for almost 3 weeks before they sent a registered letter saying that she tested POSITIVE for that mutation.
I got the letter on the 3rd or 4th day she was in the hospital and after the local oncologist had already called to find out.
The oncologist said she could have the drugs there by Monday.
I wondered whether I was watching her die in front of me.
I asked the nurses if I could bring her a smoothie from home, all healthy ingredients.
They said it was a great idea.
I brought it back with our 14-year-old daughter, she hadn't seen her Mom in a few days.
She got to watch Amy almost choke on the smoothie I brought her as it came back up and she was too weak to even sit up.
I still feel like I almost killed my wife and emotionally scarred our daughter.
On Friday, Amy called me at work (we still have bills to pay & my health insurance isn't free) and she told me they were transferring her to Spectrum Butterworth Hospital in Grand Rapids.
There was a doctor there who had a sample bottle of Braftovi in his desk and she could start on it right away.
Amy later told me that when she first met with Dr. Chen, he told her that if the drugs didn't work, she had about a week to live.
Luckily they did work, even better than anyone expected.
The mass under her arm began to soften within 24 hours and was visibly smaller within a few days.
Yay, we were beating the cancer!
Amy underwent vertebroplasty to repair 2 or 3 of the 6 or 7 fractured vertebrae (not just 3) and came home a little over a week after being admitted to the hospital.
Dr. Chen said they would use the Braftovi & Mektovi to shrink the tumor as far as it would go and then surgically remove the rest.
On her next set of scans a few months later, we were all astonished to hear that the cancer was literally gone from everywhere except Amy's liver & spleen. There was no need to operate because the only thing left under her arm where the huge mass had been was scar tissue.
She started working again, she has her own solo law practice.
Monthly visits to the oncologist in Grand Rapids, bloodwork all moving in the right direction.
In fact in the previous 2 months, all of her bloodwork was in the normal range, liver function was NORMAL.
She was getting a Zometa IV after every visit with Dr. Chen to help rebuild the bone that the cancer had eaten away.
3 weeks ago now, her bloodwork had 3 readings slightly elevated and Dr. Chen pulled the next set of scans forward a few weeks. He said sometimes a viral infection can cause those elevated readings and our son had been home sick from school for 3 days that week and Amy had run a fever for a couple of days so we were sure that's what it was.
3 days after the scans (and before we had the results) Amy had a coughing spasm, threw up, got the dry heaves and I came in from walking our dogs to find her hunched over our bed in pain. After 5 hours at the emergency room again, (X-ray, CAT scan & bloodwork yet again) it was determined that she had probably torn the intercostal ligaments in her ribs and pulled the muscles in her neck & shoulder.
She was sent home with a prescription for Percocet.
The silver lining was that the ER doctor said that there was still only cancer on the liver & spleen.
He remarked how much better her bloodwork was compared to her stay there in January.
We were sure we had finally had a trip to the ER that didn't show her cancer getting worse.
But melanoma just doesn't give up.
We went in for our appointment with Dr. Chen, hoping for the best.
But the cancer in her liver & spleen is growing.
Dr. Chen prescribed immunotherapy with Yervoy & Opdivo IVs, one every 3 weeks.
Of course, our insurance company denied it 2 or 3 times.
But the oncology center is persistent and on the 3rd appeal, Priority Health finally approved it.
Amy has had her 1st of 4 IVs, one every 3 weeks.
God this stuff is awful.
Muscle pain, stomach pain, nausea, fatigue, she can't get comfortable, has a hard time sleeping.
It seems to come in waves, letting you think it's easing up before coming back again, sometimes in a different way.
But it's only been 2 days since the IV so hopefully, it'll ease up a bit.
I've read user experiences that say reactions don't usually last more than a week.
And we're starting Salicinium IVs at the clinic next week, Amy has already started the oral Salicinium protocol.
We're not giving up.
Our kids left this afternoon on a school music group trip to New York.
We simply told them that the Braftovi had shrunk the tumors as much as they were going to and that we're starting the immunotherapy to try and get rid of the rest.
They deserve to enjoy this trip.
Every step along the way, I've told Amy and our kids, that we'll get her through this.
It's become a simple 3-word phrase I tell her, "I promise you."
Some days I believe it more than others.
There have been a million little details that I've skipped over during the last year's journey.
Maybe I'll be able to sleep better tonight?
Maybe my next post will deal with Survivor's Guilt?
Our journey isn't done.
But I'm so very tired.
But that's all I can write for now.