Pain update

I spent a long, quiet week filled with discomfort and pain. Sunday's sunshine made it easier to get out, but I had noted the wrong date for my lunch. I ate anyway (I was hungry! steroids....) and then ran into a friend of a friend I hadn't seen in a long while. We had a lovely catch-up.

On Monday The Amazing & Wonderful Nurse Jacque flushed my PICC line (remember my PICC line and the old port-a-cath?). A nurse at the Swedish Wound Healing Center changed the dressing over my old port site. She also taught me how to remove and insert the special stuff they use to promote internal healing. That is really one deep hole but I think it's coming along nicely.

On Tuesday The Amazing & Wonderful Nurse Jacque gave me a shot of Neulasta. Dr G increased my fentanyl from 25 mcg to 50, then to 75, and yesterday to 100 mcg. I felt a bit woozy all day ling until I realized that not only didn't I eat breakfast, I forgot to take my morning meds, including the Cymbalta. That can really mess with you if you miss a dose. Their website says to "take the missed dose as soon as you remember. Skip the missed dose if it is almost time for your next scheduled dose. Do not take extra medicine to make up the missed dose." So I took my morning dose at 2 PM instead of 10 AM. That would surely explain my woozy feeling, on top of 100 mcg fentanyl. I did remember to take today's AM steroids in my taper-down package.

Later today I spoke to the GelClair pharmacy tech. The Amazing & Wonderful Nurse Jacque ordered it for me and the tech called to arrange delivery. They will FedEx it to my hotel in DC. Such wonderful customer service!

On Sunday, when I spoke to both Dr G and on-call oncologist Dr Z, they both seemed to think I might have thrush, so Dr Z prescribed Nystatin, an oral rinse taken four times a day (after each meal and at bedtime). The Amazing & Wonderful Nurse Jacque told me today that's not as likely given my other side effects and recommended I stop the Nystatin now. She also suggested buying some Orajel to apply on the mouth sores with a Q-tip. Rik went to the pharmacy for me and I just tried it. AMAZING! I finally have some relief from pain in my mouth. I don't know how long it will last but this is such an improvement over five minutes ago....

Why am I calling The Amazing & Wonderful Nurse Jacque so AMAZING and WONDERFUL? Because she gave me her direct line, so I could call her if I really needed her. When I didn't understand why I was both hungry and nauseous an hour ago, I called her. She re-affirmed that the steroids made me very hungry. I wasn't eating a lot anyway, because of the painful mouth sores. And that hunger can indeed cause nausea. Then I carefully held the phone away from my head and vomited a small mess of everything I'd eaten during the past hour straight into the sink: ice cream and a cheese stick. The Amazing & Wonderful Nurse Jacque first asked me if I felt better (I did) and then told me not to eat ice cream. Dairy can contribute to nausea. Who knew?

So Jacque is now officially The Amazing & Wonderful Nurse. I tell her this all the time, Now it's official.

Sore skin

After the third of three doses of Abraxane (one cycle) on Monday, the port removal site hurt very seriously and so did my throat. Maybe a six on my personal one to ten scale?

Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.

Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.

We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!

In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.

As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.