Hair loss

I am losing more hair than a few weeks ago. As I stand in the shower, it now comes out not quite in clumps, but certainly in the dozens instead of in the single hairs.

I'm not sure why this is the case. My last treatment was on May 30th, Abraxane and Avastin, when I had already started valacyclovir for shingles. At that point (dose four) my hair was still only slightly falling out. The next dose was scheduled for June 6, but was cancelled due to low counts from the shingles outbreak. Dr G told me that same day he'd recently read about a cancer patient who died after her bout with shingles conflicted with active chemotherapy treatment. Not for me, thank you!

I see the infectious disease specialist, Dr Martin Siegel, on June 13. I assume I won't have chemo that day, since my appointment is in the afternoon, but you never know. He is the doc who is supposed to clear me to get chemo again. Maybe he will clear me for treatment later that week, even though Mondays ae my preferred chemo days. On the next Monday, June 20, I am scheduled to have the gamma knife treatment. Can I guess no chemo that day, which starts at 7 AM?

That might mean a chemo break of about four weeks, which would certainly make me feel good. No word on how it will affect my hair loss, or what impact it will have on my cancer. But I think all the docs will agree that treating the brain mets is the top priority.

Shingles pain

I think I've finally found the right breakthrough pain combo -- two 5/500 Vicodin and up to 1 mg Ativan. A tiny 0.25 mg piece of Ativan helps remarkably and doesn't make me sleepy. 

But I had more serious night breakthrough pain again yesterday. I needed the full dose of both to get back to sleep. When the shingles pain hits me like that in the middle of the night, it's like my back and leg are on fire.

I complained of lower back pain for months and we thought it was mets on my sacrum, even had a scan to determine if there were more mets. I wonder if maybe this was early warnings of shingles? Every adult, unless immune suppressed, should get the shingles vaccination ASAP! See this article on why people don't get the vaccine.

Sounds of Dunava

Folklife recorded Dunava's set at the Festival's Slavic Choir Showcase in the Center House Theatre. You can listen to it here. The Dunava set appears about 2/3 of the way down the page.

I apologist that there were no really good pictures of our Folklife shows.

Here is a link to a home-made YouTube video of the Sunday performance with Radost and RTW. 

Here is another link to a YouTube video of our performance with Tzvetanka 

Varimezova.

And remember, our entire CD is on CD Baby! At CD Baby, you can preview individual tracks, download the CD, and order a real physical copy (or two). Click for the link to CD Baby.

Gamma knife a go

Today I met Dr Sandra Vermeulen, the "gamma knife gal." She knows a friend of mine well, and Dr V used my friend as as example of how well people can respond to brain mets radiation treatments. Dr V even explained about whole brain radiation (WBR) and why she felt gamma knife was best in this circumstance.

Together Dr V and I ruled out whole brain radiation at this time. The three lesions are very small and unless they have grown significantly since the MRI, they are good candidates to be zapped by gamma knife. Dr V's group has helped more than 3,000 people with gamma knife..

The prep includes inserting four pins, one each in the corners of my head. (This is done with Ativan for sedation and could include Versed, twilight sedation, if I prefer.) Then they send me to an MRI to be sure the mets haven't moved or grown since the last MRI. Next they check the plan to be sure the rads go in at the proper angles, then the actual treatment, and last, the removal of the frame and pins.. Last they de-access my power port and I go home. The whole thing takes about four hours and my only prep is nothing by mouth from midnight the night before.

I can't say I'm excited, but I am pleased to know that this is all done at one time. We scheduled a date, in the reasonable hope that the insurance company will approve it, and then a few days later, Rik and I can go to Toronto as planned.

I really liked Dr V. She drew pictures, answered all my questions, and spent about an hour with us. Her staff were also terrific, just what I'd expect of people working at the former Providence building. Plus any doc who introduces him or herself as FirstName LastName and can handle the same from me is a keeper.

Pain pain pain

I thought my shingles were under control and healing, when I got whammed by some serious breakthrough pain today.

After a day of pain misery, I have been told to switch back to Gabapentin from Lyrica. I had only taken four Lyrica pills (it was expensive!) but if it doesn't work, I need to find something that does.

I should still use the Fentanyl 50 mcg patch and the Lidocain 5% patch and have increased to two of three permitted three daily. I may try three tomorrow. I am to add two 5/500 Vicodin and 0.5 Ativan for breakthrough pain.

So far the Vicodin has helped a lot, enough to type at the computer.

I'm going to start the Valacyclovir again, on the theory that I may still have active shingles in my body.

My major concern? That all these narcotics will prevent me from driving or being focused enough to do the things I love. I have an appointment to see Dr Bufi the naturopath tomorrow and would like to make it there and back safely. I suppose this is what the Ritalin is for....

New plan

I saw Dr G today and he has come up with a new plan while I am still dealing with shingles. First he told me he'd read about a woman who developed shingles during her cancer treatment. She had chemo and the shingles spread and basically killed her. So our new plan takes things easy.

1) Increase the Fentanyl patch to 50 mcg to get better pain management.

2) Stop the Gabapentin and start taking Lyrica (pregabalin). Like Gabapentin, it's used to fight neurologic pain. As I heal from the shingles, I'm told I can expect to continue to have pain.

3) Use up to three lidocaine patches if I need more pain control.

4) Book an appointment to see Dr Martin Siegel, the infectious disease specialist who basically saved my life in 1999 by diagnosing Toxic Shock Syndrome after my original breast lumpectomy. He did the same again a couple of years ago when I was hospitalized with an unknown infection for 13 nights. He's part of my terrific care team and I look forward to seeing him next week. His job is to decide when the shingles has gone away and I can have chemo again.

Tomorrow morning we see Dr Sandra Vermeulen, the radiation oncologist who will talk about gamma knife vs. whole brain radiation vs. cyber knife to deal with my three brain mets. Bet you thought we'd forgotten about them! No, I'm sure they're still hanging out. More news tomorrow.

Unmanaged pain

Around 5 PM my pain began to creep up to unmanageable. I've been twitching in my seat for hours. I had to remove my lidocaine patch at 8 PM, took 2 5/500 Vicodin, and hope this will address it. If not, I give up on decreasing the Fentanyl and will put on another ~ 12 mcg patch.

Inventiveness

I realized last night that I couldn't find my remaining 12 mcg Fentanyl patch. I was so sure that I had three left: I used two for a total of 24 mcg to step down to from the 50 mcg, and then I'd planned to use the last 12 mcg as an intermediary step before stopping the Fentanyl completely.

You can imagine my distress. If I couldn't find the last Fentanyl patch, I was going to be without any pain management for 12 hours starting at 8 PM last night! The lidocaine patches stay on for only 12 hours, and I prefer to use them during the day, so that I have maximum pain management when I am out and about or at least up and not in bed.

Rik had the very creative idea to cut one of the 50 mcg patches into quarters, thus giving me about 12 mcg of drug. For some reason I simply couldn't follow this while I was distraught. We went to a shiva minyan for our friend who just lost her youngest brother quite unexpectedly, and I removed the two 24 mcg patches while at her house around 8 PM.

I began to feel a little twitchy -- every time I though I got a pain signal, I twitched just a bit. After we came home, and I'd changed into my pajamas and settled myself on the couch to watch some TV, I finally realized what a good idea Rik had had. I asked him to cut up a 50 mcg patch, and he did so pretty accurately. I began to fell some pain relief about 20 minutes after putting the patch ion my arm.

On the good side, I took 0.5 mg Ativan at bedtime and slept well for most of the night. Between the dog and some pain signals, I awoke at 5 AM, and then at 6 AM, finally getting out of bed just before 8 AM. I took 600 mg of Gabapentin immrdiately, and as soon as I take a shower, I'll put a new lidocaine patch on my hip and back.

It makes me wonder how I will tolerate losing all the Fentanyl in three more days. I will report everything to Dr G on Monday, and get his take on whether I might be healed enough from the shingles to go to 0 mcg Fentanyl, or if I should stay on my home-trimmed patches.

Fever

I've been running a low grade fever since Tuesday night. My nose runs constantly (but that could be due to the Avastin, which causes nose bleeds, and there is usually a little blood on my tissue). My temperature hovers around 99 degrees Fahrenheit, and has gone up to 100.5, the point at which I am supposed to call the doctor.

By the time I spoke to Nurse Jacque yesterday (when my temp hit 100.5 during the morning), it had already gone down more than a degree. She told me to take my temperature regularly, and if it should peak to 100.5 or higher and stay there for a couple of hours, I should call her. A steady temperature of 100.5 or higher is likely a sign of infection, and might occasion a hospital stay.

I think I probably picked up something while at Folklife. Two of the Dunavites are sick as well, but of course for me it's more serious than a spring cold. Being exposed to others, like walking in a crowd, puts me at a greater risk for catching something than the average person. But I went to Folklife because it was so important to me to sing with Dunava. I tried not to get too close to people, and if I picked up something, I hope I can manage it at home.

Meanwhile I am taking my temperature every hour or so.....

Back to that "new normal"

I actually felt so well on Tuesday that I was able to drive the car; attend a morning meeting and be focused and present for the discussion; run an errand to the dry cleaner and go grocery shopping. That represents a HUGE improvement over the past ten days, when I could barely move my sorry ass off the couch, and needed rides to everything. The shingles are showing a good response to the treatment, but their presence will prevent me from modeling at the Gilda's Club fashion show on Friday. It's too bad, but always better to protect the health of the other models who have compromised immune systems. The third time was not the charm, I'm afraid.

Still no word on whether the chemo combo is doing anything for the cancer. I anticipate getting my tumor markers checked again, maybe as soon as next Monday.

I was truly tired after all the running around yesterday, and noticed that my feet hurt. Not just hurt like I was tired of standing, but numb and tingly all around my toes on each foot. I think this is more neuropathy from the chemo combo. I reported it to Dr G's nurse and was told I could increase the gabapentin up to 900 mg three times a day, which is quite a bit more than I am taking now. It should help with the neuropathy pain.

I also ran some errands today. Went to Dr G's office for a shot of Neulasta to build my white blood cells, then drove north to exchange a pair of shoes (size 8.5 bought at Northgate Mall) to the size 8 (only at Alderwood Mall). I was fine with all that highway driving too.

My nose is a little runny, with a tendency to bleed (that's the Avastin), I am constipated (from the gabapentin), and I've run a very low grade fever of 99.2 degrees for the past the nights. I may be coming down with a something, and so plan to take it easy tomorrow and just go to my support group. They need to hear Jill's great shingles story.