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.

Life with the new cats

Last April our 20 year old, much loved cat died, basically of old age. We were very sad and got new cats in late May, who have been settling in nicely, and us with them.

Boots is the very nice, if somewhat skittish, cat who needs a lot of attention. He is gray and white with 'boots'. He has warmed up to me, and after being gone for a week he really wants to snuggle. And have his ears scratched.

The other cat has had a variety of names. He came to us called Penguin, as he looked all black with a bit of white on his chest. But he had very thin fur and the white was his skin showing through. We started calling him Peanut because he was so small. And his fur grew in and he is really a black and dark brown tabby. Then my husband said he looked like a cat from his childhood which his mother had named Zdpot (which is what you take for the 'ackers'). He is a lot less cuddly and has a tendency to bite.

Our cat/house sitter didn't put up with his crap and smacks his nose when he tries to bite her. She also calls him TD for 'The Devil'.

Yes that is clean laundry he is sitting on. Can you see it in his eyes? He as a tendency to leave us little gifts and came with ear mites which he shared with Boots. Both came out of foster situations, but they show signs they will be friends, or frenemies, as cat are. They chase each other around an then smack each other and the sleep in a pile of paws and tails.

And they are a nice welcoming committee when we come through the door. What I need often.



Ibrance update

The first three days of Ibrance were full of mild nausea, moderate fatigue, and general ill-feeling. Thankfully by the Monday I felt like myself again. The fatigue has continued, but who doesn't appreciate an afternoon nap? The first two weeks were basically fine.

Today, the beginning of week three, started with more fatigue (i.e., I didn't get out of bed until after 1 PM), and then moved on to diarrhea. So I am still in my pajamas, even though it's lovely outside and I had planned to run errands and do some garden work. Thankfully Dr G gave me great meds to address the diarrhea.

I'll take the Ibrance for one more week (21 days total), then get a week off. Dr G wants me to have labs taken again in two weeks. I'll see him after Passover and hopefully start another Ibrance cycle if my white, red and platelet counts stay high enough.

So I'm taking today off and will nap again in between doing loads of laundry. And that's life on chemo!

I am a blogging queen

Today I received this message:

Nicole.lascurain@healthline.com has left a new comment on your post "There and back again":

Hi Jill, 

I am happy to inform you that your blog has made Healthline’s list of the Best Breast Cancer Blogs of 2015! Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/best-breast-cancer-blogs 

We created a badge to help you publicize your achievement: http://www.healthline.com/health/breast-cancer/best-blogs-badge-2015

We encourage you to embed this badge on your site and share your status with your followers. 

Thank you again for providing a great resource to the Breast Cancer community! I’m happy to answer any questions you may have. 

Best,
Nicole 

Nicole Lascurain • Assistant Marketing Manager
p: 415-281-3130 | e: nicole.lascurain@healthline.com
Healthline • The Power of Intelligent Health
660 Third Street, San Francisco, CA 94107
www.healthline.com | @Healthline | @HealthlineCorp
About Us: corp.healthline.com

Here is the Healthline link. I am number two on their slideshow, number one of the best breast cancer blogs of 2015! I am proud to be in the company of my new friend Mandi (Darn Good Lemonade, number 9 on the Healthline blog list)

Thank you Healthline for this recognition.