A day with the doctors (a big fat update!)Posted: September 27, 2013
The person that discharged me from my brief stint at the hospital last week kindly made my hematology follow up visit for me. She made it for this past Wednesday because I had another appointment with my surgeon and it will be “convenient” to have both on the same day.
She scheduled me for 9:30 am to see the hematologist (which means being there by 8:30 am to get my labs drawn).
My surgeon’s appointment was scheduled for 4pm.
Convenient my ass.
Mom and I got up at dark o’clock and started off to the city at 6:30am. Stopping, of course, at Del Taco for an iced tea because positively NO ONE should be awake that early in the morning without their favorite form of caffeine.
We made it to USC Norris at 8:40 am. The trip did sucketh. I don’t recall there being any accidents just too many people on the road. It’s times like these that I really miss living in Pasadena. 30 minutes on surface streets to the hospital. But I digress.
I got my labs drawn and the results looked pretty good:
Hemoglobin: 10.6 – the week before had been in the 8s
White Cells: 1.1 – week prior was 0.7 (still 1.1 is not high enough)
ANC: 0.4 – the previous week was 0.1 (Neutrophils are the things that power up white cells. The ANC is the indicator of how powered up they are. Anything under 0.3 is critical/life threatening)
Platelets: 26k – about the same as last week.
My blood sugars are REALLY GOOD!!! Nothing else jumped off the chart as superbad.
My hematologist and NP checked me out and told me to keep doing what I’m doing. I got the normal talking to about not taking the medicine that reduces my iron levels (it’s super gross) and I promised to start it up…on Sunday…at half the dose. It makes me sick to my stomach so I figured I’d ramp up to the full dose. She then started asking me about the cancer drug I’m taking and how it was going and did I like my oncologist?
Hmmm… I didn’t know I had an oncologist and I certainly didn’t know that I was taking medicine. Somewhere wires got crossed and I figured I’d straighten things out with my surgeon that afternoon. Anyhoo – I see her again on 11/13.
That ended at 10:30am. So we make our way to the Breast Center and
beg ask if I could be seen earlier than 4pm. Nancy, the fine scheduling person, said Dr. M was booked but to come back a little early and perhaps they could get me in sooner. So mom & I went to the food place on campus and settled in for the day. Mom watching her movies on Netflix and me trying to get some work done. (I won’t go into how the wi-fi at USC decided to throttle my connection and kick me off around 1:30pm – SUCK!)
Once there, I had to get some Iced Tea and went to Starbucks. As I’m waiting for my tea (Trenta Black Iced Tea, 3 Splenda, Extra Ice, thank you very much) I noticed a young woman with a cart load of documents and a rolled up thingy in her arms trying to get through the doors. As I was wavering between “Ha! Let’s see her try to get in!” and “Wow, someone needs to help her”, she yells my name. WTF??? I took a better look at her and it turns out that it was my work-study student from USC Advancement that I haven’t seen since 2001! So we got caught up. Turns out she works for USC and is getting married in a a few months. We are linkedin so we parted ways with a a promise to message each other. Ah, loverly technology.
Later on, after lunch, mom and I were in our same seats by one of the two outlets in the place (seriously?) when mom said “isn’t that so-n-so?” and I looked and it WAS so-n-so!!! I have been friends with this person since 7th grade and we went through jr. high, high school and USC together. We keep in touch through Facebook but I hadn’t seen him since my wedding in 2002. We got to chat for a minute and hopefully we can get together sometime in the next 11 years 🙂
It ended up being kind of cool that I was stuck in the dining area all day.
Just before 3pm, we decided to head back to Norris and the breast center. As soon as we walked up, the nurse came out and called my name. So strange – especially as we were an hour early.
I had expected at this meeting with the surgeon that some resolution would have taken place with the kind of surgery I needed, medicine, etc..
I should learn, NEVER have expectations.
The Good: The MRI showed that the calcifications in my breast are non-cancerous. So we are still looking at only dealing with the one tumor. (It hurts like a bitch, by the way.)
The rest is not bad or good news, it’s just news….
Like I thought, the neutropenic fever I had last week really didn’t help my cause. I need to be stable (HA!) or at least my white counts do. If I go into surgery with my white counts as low as they are, I could develop a life threatening infection. Fun.
So. The first thing I need to do is meet with my new oncologist, Dr. T, and he is going to put me on the hormone therapy. It is not usual to start with this therapy but it is being done with me to give me some time to get my white cells higher. I see him next Wednesday the 2nd.
The next item is for all of my docs: Hematologist, Oncologist, Surgeon, Radiologist and Radiation Oncologist to get together at a “Tumor Board” to discuss my case and make a plan. These happen every Thursday and my case will be discussed in the next two weeks. These, as I understand it, are the topics for discussion:
First off, Radiation
If I CAN have radiation, then they will do a lumpectomy and sentinel node extraction. The sentinel node is the lymph node that is the first one affected by cancer. They will remove this and probably a few around it and see how much cancer is in them.
If I CAN”T have radiation, then they will do a left breast mastectomy and sentinel node extraction.
The case being that if I can have radiation – they will do the more simple surgery and blast the area with the rads to zap anything left over. If I can’t have it, then we do the bigger surgery and take out anything that might be coming up.
I don’t think any of them are wanting me to do radiation, especially my hematologist. Apparently in those with Aplastic Anemia, radiation can cause a different type of cancer unrelated to the breast cancer. Great.
Once they figure out which surgery to have, they have to wait until my white cells are at a satisfactory level. The trick is, how long do they wait? The hormone treatment is being used to hopefully, shrink the tumor, and protect the rest of my body from this cancer spreading. There is no good way to increase white blood cells. NONE! I am wearing my mask all the time, eating the correct diet (about 85% of the time), starting to exercise, getting a lot of sleep, etc… This will all help, but mainly there is a shot I have to get called Neupogen. I’ve had it twice before (about 6 months – year apart) and it didn’t do anything. This time they are talking daily shots for a week or so. I may have it sooner to get things started. On this fact I’m not clear.
Here are the two outcomes from the information I have now:
1. The neupogen works and I have some sort of surgery, maybe radiation and take the hormone therapy (a pill) for the next 5 – 10 years.
2. The neupogen doesn’t work and I can’t have surgery or radiation. So I take the hormone therapy forever and just live with cancer that is contained.
My surgeon and I aren’t interested in outcome #2 and are working towards outcome #1. Either way, I have faith that I’ll be ok.
Sorry for the late update. This has been a lot to process.
Please let me tell you again how grateful and honored I am to be in your thoughts and prayers. Thank you so much!
As Always, FIGHT ON!!!
USC! Beat the Sun Devils!!!