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.

Its been a long ten years

I used to be a healthy person, really. Those of you who have known me for more than ten years know that. But for the rest of you I need to reassure you I was healthy at one point.

One of the big reasons we are selling our house is that we bought it when I was working full time in Boston. I needed the easy access to the city. I will never work full time again, nor will I ever work in Boston.

We bought this house in February 2005 and moved in. We got married in May and then my health went (I really do not believe that my marriage played any part in my body's decision to go to hell in a hand basket).

That August, I was home alone waiting for my husband to come home from work so we could leave for a long weekend when I started experiencing intense abdominal pain. So painful, it took me ten minutes to reach across the bed to get the phone. My husband had a new office phone which was saved in my cell phone which was far away - across the room - so I just called 911 for an ambulance.

It turned out I had fibroids and one had died off and caused a massive internal infection which put me in the hospital on IV antibiotics and ended up with a hysterectomy and home on medical leave for six weeks.

A year and a half later, I was diagnosed with breast cancer which lead to three surgeries, chemo and radiation. Then my gall bladder was removed. Then my back started hurting. And lymphedema, rheumatoid arthritis and fibromyalgia.

Now I am looking toward to retirement and a healthier body. If that is possible. Could I ever be healthy again?

Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!

Stress + anxiety = anxiety + stress

The past week has been filled with stress and anxiety, no matter how you look at it.

Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)

At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?

With Anna Gottlieb, founder and executive director of Gilda's Club Seattle

A gift from Mutual of Omaha - my very own clapboard

In the end I talked about my cancer, how long it had been in my life. Mostly I spoke about how my recent knowledge of the US government's lack of funding of all research into all metastatic cancers via the National Cancer Institute indicates how little the lives of our citizens seem to matter to our government. The interviewer didn't seem to care for this topic much, but I got very passionate about it. It was a bit of a stress-filled morning.

On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.

Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.

The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.

More stress, more anxiety.

On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.

On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less

Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.

I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.

Insomnia again

I haven't been sleeping well recently, but this takes the cake. It's 12:53 AM Saturday morning. I didn't sleep well last night and on Wednesday night I had terrible dreams. My naturopathic doctor has recommended a new (to me) homeopathic remedy which we bought today -- meaning Friday.  Have I slept? No. I couldn't even nap this afternoon.

I finally got out of bed in hope that at least Rik would sleep well. The dogs, of course, sleep through everything except their hunger. I'm ensconced on the sofa, with the iPad in my lap. I expect that I will eventually fall asleep. It may not be until six in the morning, which is usually what happens when I actually force myself out of bed to deal with sleeplessness. That's also the time those dogs get hungry.

Insomnia may seem like the least of my worries but it's very difficult. I find I can't turn off my mind when I get into bed. My feet hurt fiercely from the neuropathy. My skin may be more sensitive, because I itch on my head where it touches the pillow and randomly across my body, tonight around my throat. The open sore mets on my scalp and my chest itch and are painful, but must remain covered. My left arm is in the big blue lymphedema compression garment (I'm left handed) and it's tight. The ONJ spot in my mouth hurts on the right side of my jaw. I've slept on that side my whole life and it's a hard habit to change. The hydrocodone I took before bed doesn't begin to touch all these little things. Together they keep me from sleeping night after night. And when you have metastatic cancer, too many nights of not sleeping soon add up to not dealing well with anything. Especially cancer.

On top of all of this, I clearly had too much water to drink this evening, because I've been running to the toilet every hour since ten o'clock. I took some Uristat to help with that problem, but no dice. I just need to pee a lot.

I guess it's my turn to host the pity party.

The latest

What with the Jewish new year last week, chemo and a medical surprise, I haven't had time to write lately. Here is a recap of the latest.

Even though Rosh Hashanah came at the end of my weekly chemo cycle, I overdid it with baking and socializing on Sunday. By Monday morning I didn't have enough energy to go to services, even to see Rik receive the honor of being called to the Torah. (Evidently at 9:20 am I was moaning, "I'm getting up," even as Rik was getting ready to walk out the door.) We did manage to enjoy lunch with friends on Monday.

On Tuesday I actually made it to synagogue for the second day of the holiday, just in time to hear the shofar blown. There is also one part of the new year's service that I love. We bow before God, as in the daily prayer services, but on Rosh Hashanah one can choose to actually prostrate, getting down on the floor and kneeling. I have done this along with the cantorial soloist for many years, partly because I want to know that I can, and partly because this is the one moment in the year when I acknowledge that I don't have control over everything in life. By kneeling before God, I remind myself that it's not all about me. I believe God has a plan, even if I don't know it or can't understand it.

Okay, back to last week.

On Wednesday afternoon I had chemo. When I woke up in the morning, I did something rare and unusual. I called the Amazing and Wonderful Nurse Jacque to say that I felt awful, my feet were in terrible shape from the neuropathy, I'd had an indifferent holiday at best, and to please ask Dr G to consider dropping one of the two chemos. Dr G agreed to drop the Taxol and only give me the carboplatin.

I also complained about a possible urinary tract infection and later I gave a sample to be tested for infection. Dr G prescribed something to help with the frequent need to urinate, which actually hasn't helped much. I'm waiting for tomorrow to call Nurse Jacque about the final results of the urinalysis and hopefully get an antibiotic. Even if it's only a slight infection, something has been going on for ten days. And if it's not an infection, what is it?

While at chemo Dr G decided my red blood cell count was borderline and would likely dip further after that dose of carboplatin. He ordered a blood transfusion. Surprise!

Thursday I went to my support group as usual. The nurses at the wound center changed my chest bandage and decided it hadn't healed much in two weeks. My former port-a-cath site is almost completely healed. At last some good news! The doctor in the wound center said keep on with what we're doing and that he'd been in touch with Dr G about possible options. I see Dr G this week and will learn more then.

The blood transfusion took all of Friday, mostly because I couldn't get up early in the morning. A friend visited until I started to drowse from the IV Benadryl. I slept for more than an hour and missed my 1 pm visitor. Thankfully she came back, brought lunch, and we had a good talk. Good surprises in the making!

I'm still having insomnia, even with my naturopathic doctor's recommendation of WellMind. Last night I didn't fall asleep until almost 2 am. My feet still hurt tremendously. I'm now taking medication for high blood pressure likely caused by the chemo. This has been a rough time. I look forward to a week or so break from chemo.

As I said, I see Dr G later this week and hope to have a plan, even if it's another brain MRI. Let's hope the carboplatin lowers my tumor markers and has killed some brain mets!