CarynRose

Well, I've had my chest exray, my acupuncture treatment, Reiki, and am now waiting for them to come get me and bring me to Temple University Hospital.

I feel like I've done all I can to prepare my body, mind, and spirit for this next step and so now I leave it in G-d's hands. I can feel all of your prayers and support.

I love you all.

Caryn

Well, as the PREGO sauce commercial says, it's in there. When Steven (brother -in -law) and I left the hospital, Caryn was resting comfortably (well as comfortable as possible), taking small sips of apple juice. I believe they're going to be giving her some morphine to take the edge off and then tomorrow she'll be returned to CTCA where, hopefully, we can start the chemo by Friday.

It's been a truly hectic day or so, with changes in surgical times, the move and surgery, the excitement over the election, and as an extra bonus.....I popped a crown and post right out of my mouth (where else would it have been?) last night. I will have it replaced, hopefully with real good cement, in the morning, before driving down to Philly.

Our thanks to all of you for your prayers, thoughts, e-mails, phone calls, flowers, with a special mention to my folks for driving up from Maryland to support me today and my brother-in-law for coming down to spend the afternoon in the surgery waiting room.

Steve

This morning Dr. Willis came into my room and told me that we would start treatment today. He really feels like the task at hand is to physically put chemotherapy (methotrexate) onto the cancer cells in the lining of my central nervous system. He wants to be aggressive about this and so we'll be doing the treatments once a week for at least 4 sessions.

He had his nurse practitioner Deb come to my bedside, gown up, and sterilize the area at the top of my head. Then, she withdrew about 5cc of CSF and put it into vials for it to be analyzed by the lab and cytology to measure amount of cancer cells and just give us a general starting point. Then, she replaced the 5 ccs with 5ccs of methotrexate, which I call 'liquid sunshine' because of its bright yellow color. As she added it to the resevoir at my head, I imagined fresh, cleansing sunshine pouring down through the top of my head, swishing through all the nooks and crannies, washing out all the little corners and linings, causing any cancer cells to stop growing and stop multiplying and washing them away, while allowing healthy nerve cells to grow and function. Sort of like 'weed and feed.'

While Deb was doing this, Carol, my Reiki nurse, stood by my side and applied gentle Reiki, while the CareChannel played soothing music. Then, both before and after, we were visited by various chaplins/pastors. Sister William shared water from Lourdes with me and prayed for my complete restoration of health.

And then, I sat and let it start to work. Had a bit of a headache for about 10 minutes afterwards. Got really tired for most of the afternoon, but was relieved to be starting the process of healing.

Next, Dr. Willis wants me to look into tomotherapy radiation as well as using an oral chemo called something like Tiperal? It's shown promise for improving the effectiveness of breast cancer treatments like radiation and other chemos. And so, I'm up for it.

We also discussed that in my case, we are going to be really proactive, acting on any indication of recurrence because my body shows it up relatively early and so we can use chemo to 'keep me chronic.' WOW! Can you imagine trying to treat Stage 4 triple negative breast cancer as CHRONIC??!! Will it be hard? Sure. Because all we have at this point for triple negative is chemo, but if you treat early and often, maybe that is workable until their next step.

Nice to see that Dr. Willis is thinking out of the box. The other day, he even mentioned toying with some Avastin in my head.

Sue F -- I wonder if there is any interest in shoving some PARP inhibitor up there. Do any of your contacts have data on that? Would you also please remind our Advocacy panel gentleman (I think from Sloan) that we are working chronically here and any help he wants to provide to keep me on schedule to attend my nephew's bar mitzvah in 11 years.

And, so tonight, there are still neurological deficits that we don't know whether they will or won't go away. And so, I sort of have a 'new normal' for life -- a new face; less ability to hear; eyesight slightly askew; difficulty speaking; slight paralysis from the waist down. There are physical, speech, and occupational therapy options for me and a strong, strong spirit to keep me going. And that spirit is buoyed my your support, love, and prayers.

But, it's all LIFE and that is good.

Much, much love,
Caryn

After a relatively peaceful night, I woke this morning to my, what appears to be, regular AM headache. Waiting for the nurse to bring the percocet. It will help. My plans today are simple. I just want to get out of bed, clean myself, and perhaps dress in street clothes.

I notice that my mind is working slower. Logical actions take longer to form and be acted upon. Normal reactions to situations take a while to make themselves apparent to me. I don't remember to eat, take my meds, etc. I pray that this will subside as the cancer subsides.

I do remember that with previous chemo, there was a jump in tumor marker measurement that seemed somewhat scary until we were reminded that it was my body's way of sloughing off the dead cancer. Let's hope the muddled-ness is just an indication of that.

Certainly, the spirit is still in there.

Love,
Caryn