Post-Chemo Update

Liz writes,

"Hi Everyone,
It's been awhile, but thought I'd post an update about what's been going on the last few weeks. I had a post-chemo MRI, which showed that the larger tumor shrunk from 3.5 x 2.1 cm down to 1.5 x 1.3 cm. The smaller tumor didn't shrink as dramatically; it went from 1.8 x 1.1 cm to 1.5 x 0.9 cm. They can't tell from the MRI if the tumors are still cancerous, or if they are basically dead...we'll find out from the post-surgery pathology report. The area of abnormal calcifications is still there, but smaller and more defined rather than diffused throughout the entire breast (this has nothing to do with the chemo, but is probably because I'm no longer lactating).

I also received the results from my genetic test, and found out that I am negative for the BRCA-1 and BRCA-2 genes (the 'breast cancer' genes). This is good news, because it means that my children (and brother, and mother) are not at risk for also having the gene. My daughters already have a higher risk for developing breast cancer, since their mother was diagnosed at an early-ish age...so it's a relief that the risk isn't even higher.

I had a recent appointment with a pancreas specialist, about that cyst that was discovered on my MRI. He wasn't overly concerned, as it looks benign to him; but he still wants to do more tests to make certain. He recommended an endoscopic ultrasound and biopsy, which can wait until I'm recovered from the surgery. He did say that the biopsy has a 10% chance of causing pancreatitis...my father-in-law had that, and had to have his pancreas removed which caused him to be diabetic. So I am nervous about that test, and want to do more research about options. The original recommendation was just to get another MRI after 6 months, so perhaps that will be the way I'll go.

In addition, I met with my radiation oncologist for the first time, Dr. Hong. He said I definitely need radiation. He has a very good reputation, and I trust his judgment. I am scheduled to go back to him mid-August for a CT simulation...I think that's when they set up where they will aim the radiation beam, by tattooing little dots on my skin to mark the right spots.

Yesterday I met with my surgeon, Dr. G. She thinks the MRI results are encouraging. We discussed the surgery, particularly whether it was possible to do nipple-sparing surgery. She consulted with one of the other surgeons, and both of them agreed that it is possible, but there is a chance that I'd have to go back and get the nipple removed if any cancer cells are found in the tissue right under it. I decided I want to take that risk. She has to take the level one and two lymph nodes, since my cancer is definitely in them. So I signed a consent form for a modified radical mastectomy with axillary lymph node dissection on the right side, and a simple mastectomy on the left side, both with nipple-sparing; and also for the removal of my port, which I am very much looking forward to. I also met with a nurse who walked me through everything I need to know about the surgery, before, during, and after. Later this week I go see the plastic surgeon so he can draw on me with a marker. He will be putting in the temporary expander implants at the time of the mastectomy, and later will be doing the complete reconstruction after radiation is over. It is very hard to believe that the surgery is just a week away. It seems surreal...this can't really be happening to me.

A bit about how I've been feeling since chemo ended...Physically, I feel pretty darn good. My energy levels are back up to nearly normal. The neuropathy never got beyond what I would consider mild, and is already getting better; I have been taking B-complex and L-carnitine for it, and maybe they helped keep it to a minimum. I have some lingering joint pain and stiffness in my hips...not sure if that is actually chemo-related, or due to carrying a heavy 14-mo-old around. Even as my head is starting to sprout tiny new wisps of hair (so far it looks white), I am suddenly losing other body hair...my eyebrows and lashes are thinning out, and the hair "down south" decided to fall out all at once two weeks ago (that has been the worst in my opinion...it's just weird). I am definitely very tired of having to wear scarves and hats...am really looking forward to the return of hair.
Emotionally, it has been very hard. After initially being so happy that chemo was over, I then seemed to return to a similar emotional state as in the beginning...trying to hold it together in front of people, especially my kids, but in private having frequent break-downs. Actually, not even doing such a good job of keeping it together in front of people; I started crying during an appointment when asked to fill out a questionnaire about my emotional state, and have been on the verge of losing it any time I talk to someone about the emotional part of it all. Lots of fear and apprehension about the surgery.

Some happy things that have happened lately: We celebrated India's 6th birthday with a successful Tangled party (she's all about Rapunzel these days). We had a very nice visit from Nathan's Mom and Pop, who drove all the way from Austin, Texas to see us. We had a very lovely week at Ocean City, NJ; a huge huge grateful THANK YOU to my parents for providing us with such a fun and healing vacation. And this coming weekend we will celebrate Lily's 10th birthday with an American Girl sleep-over party...our first large sleep-over party in this small house...hopefully we will survive. It has felt really good to have so many special things to focus on this month, to keep my mind off the whole cancer thing a bit.

I will post another update as soon as I can after surgery. Please keep me in your thoughts and prayers on Tuesday, July 5th...
Love you all,
Liz"

Update on Chemo #8

Liz writes:

"Hey there,
I missed last week, but here's an update on the LAST CHEMO!


This week was my LAST CHEMO treatment!  I am thrilled to be done with it.  I hope to never see the inside of the outpatient infusion center again!  This time I was lucky to have the company of my wonderful friend Sara, who pampered me with a lovely foot and hand massage before having to leave;  then Emma came, bringing yummy pad thai for lunch--it means a lot to me that Emma was with me for both my first and last treatments.  It feels like a lifetime since I was diagnosed...instead of just five months.

I have a lot of appointments coming up, including an MRI and follow-ups with the whole team...after that I'll know for sure whether I'll need radiation treatments (but it's highly likely that I will).  My surgery date for the double mastectomy is July 5th; I'm very nervous about that, but will try to enjoy this month of June and not think too much about the surgery.  We have India's and Lily's birthdays coming up, a week at the beach, and trips to the pool to take my mind off cancer-related things.

We have very good news on the financial front:  after receiving a bill from the hospital recently for $60,000 (!), we then finally got confirmation that we were approved for hospital financial aid through the month of June.  So that bill has been knocked down from $60,000 to $0!!!!  What a weight off of our shoulders.  We still have about $12,000 in bills from various doctors who are not hospital employees plus our insurance premiums, deductible and co-payments...and we haven't even gotten to the surgery or radiation...
The average cost of breast cancer treatment that is quoted in the corner of this blog doesn't seem very accurate, in my case at least!  But we are very very grateful for all the financial help the hospital has given us so far.  And very very grateful for all the generous donations that have helped us get through this time!

I don't know how many people have been actually reading this blog :)...but it has been tremendously helpful for me to have this outlet to write about my experience; I've never been much of a writer, but it has definitely been therapeutic for me.  I will keep posting this summer about the results of my scans and appointments, and about the surgery, radiation, and (later in the fall) the reconstruction surgery.

Love you all,
Liz"