Daisypath Anniversary tickers

Daisypath Anniversary tickers

Thursday, May 7, 2009

Introduction and Diagnosis

This is just meant as an information blog, to keep friends and family updated on general progress and goings-ons. It will probably evolve over time but its main purpose is to provide information about how I'm doing, especially for those times when I'm way behind on email and don't have time/energy to keep up with everyone the way I'd like.

Background on Diagnosis and Initial Treatment

Many of you know all this already. Don't ever feel obligated to read anything I post! It's only for your convenience. This first post is long and possibly TMI for some, but there's nothing gruesome in it, I promise!
  • Wed., March 25, diagnostic mammogram: An "I'm-God" radiologist told me I had cancer, period. According to her, I would have to have a biopsy because it would be required, but she didn't feel I really needed one because she already knew the results. I don't care how sure she was, she could have phrased it softer. No matter what her experience told her, she was rude and arrogant about the whole thing. I was so shaken (literally and figuratively -- my body was trembling and my insides were mush) I immediately went to mom's oncologist's office to meet with the counselor on staff, who wasn't in... I ended up meeting with the oncologist instead, and he was terrific. He immediately offered to help if I wanted, admitted me, and examined me that afternoon. He wasn't optimistic about the diagnosis but managed to phrase it in a kind and soft way. Totally different manner than the blankety-blank radiologist, and much more acceptable. Some doctors should not deal with people.
  • Wed., April 1, biopsy: April Fool's! but of course it wasn't. Not horrible but not pain-free, either. Had the same "I'm-God" radiologist tell me the results wouldn't be available for 3 or 4 days, "not that I need to see them to know you have cancer." I won't use her again, ever. And my oncologist knows it and knows why.
  • Mon., April 6, met with my oncologist: biopsy results, discussion and decision on treatment plan. Good news: highly treatable, localized, long term prognosis, very good. Treatment: adriamycin and cytoxin, once every 3 weeks for a total of 4 treatments over 12 weeks, along with a Neulasta shot the day after each treatment (to promote white blood cell production destroyed by the chemo). A/C to be followed by 12 weekly treatments of taxol and herceptin. The herceptin will go on for a year. Surgery, after the chemo, I believe (that includes the A/C and taxol only -- herceptin is biological, not chemical). Radiation possible after the chemo; again, not sure of all the details yet, some of it will be as-things-go, and of course things may be adjusted.
  • Thurs., April 9, implantable port installed for chemo infusions: out-patient surgery went fine. Thanks, Richard, for holding my hand through that. I knew my little brother would be useful one day :) The anticipation, as with most things, was worse than the procedure. There was some significant tenderness around the port for a couple of weeks and stiffness of my neck for about a week but nothing I couldn't live with.
  • Friday, April 10, Mugascan: to check my heart, since A/C is hard on your heart. Because chemo isn't nasty enough already :) Results of scan, fine.
  • Friday, April 10, first chemo teaching: the information was fine -- nothing I didn't expect -- but they told me I'd have my first infusion at the hospital because it would be cheaper than having it at the oncologist (I was waiting on insurance confirmation). I have to admit, I freaked and started crying. I know the staff and the oncologist well because I've been taking mom there for over a year. I trust the staff at Harb's office, am comfortable with them, and part of what was making that first overwhelming period bearable was that I was going to be with people I knew and trusted, and not with unknown staff to whom I would be "just another patient." I explained all this to the nurse, told her if cost was an issue I would find a way to make it up, and the oncologist himself came in and assured me that all my treatments would be in their office and I was not to worry about any of it. I felt like a big whiny baby to be so upset over the hospital thing but emotionally I knew I needed to be with people I trusted. One thing I know about medical care is that you have to be your own advocate and ask for what you need (and make sure you get it), because no one else is tracking it the way you are.
  • Wed., April 15, first chemo: this consisted of Emend, an anti-nausea pill, followed by an infusion of steroids (for nausea) combined with another anti-nausea med, followed by a huge needle of adriamycin injected directly into my tubes slowly, then the cytoxin infusion. Went fine. The staff was incredible, as they always are, and it made a world of difference to be with them. Thanks especially to Susan, who did my first infusion, and to all who stopped by my chair to check on me and just chat. That evening and all day Thursday I was exhausted. I take Emend and steroid pills for the two days after each A/C treatment. In case you don't know, steroids can pump up your energy a bit! Woke up around midnight Thursday, wired from the steroids, had about 20 hours of energy, then I crashed for the next 8 days. The aches and pains from the Neulasta kicked in about 4 days after the shot and lasted about that long, maybe a day or two longer. That bothered me more than the fatigue but I figured out a control plan: generic Claritin (not the d-type) and acetaminophen. The Claritin seemed to help the most. Also, some really good news this day: got medicaid approval. It's a program for women with breast and ovarian cancer, I was hooked up to it through the local YW (thank you, Sue!) and although I cringe at accepting public money, I'm not abusing it -- I need it and I'm using it. Not having health insurance for the first time in my life initially caused some panic (no insurance -- who would treat me? I figured they'd just let me die if I had cancer) (I did snap out of that train of thought quickly, but it did cause some real anxiety at first). I'm grateful that this program is in place.
  • Saturday, April 25, energy returns: after 10 days of gradually subsiding fatigue, woke up full of energy. Hurrah! Lasted until my next chemo -- 10 days later. I was really happy to have that spurt and feel like a real person, in spite of the two following interruptions in energy: the first, emotional; the second, physical -- they were:
  • Wed., April 29, hair loss: my hair started falling out, a week earlier than I expected, but someone has told me her hair fell out at two weeks after her first treatment, so I wasn't caught totally off guard. Decided I would better off getting rid of it than dealing with the emotional impact of handfuls and clumps of hair falling out, having to clean them off the pillow, out of the drain, etc., so I had my head shaved that same day. I had had it cut short in anticipation of the fall-out so that helped. As I expected, it was good to just get it shaved and over with. I don't much care for the bald look but it's not so awful, either. Good news: hair on legs and underarms is no longer growing, so no shaving all summer! Won't miss that! I'm currently the queen of scarves -- glad I've been buying them for so many years! Wigs are on order... Thanks, Deena and Dave.
  • Saturday, May 2, sprained ankle: missed a bottom step and sprained my ankle, but good. There went my Sunday hiking and photography plans. Oh well! Made me mad, but what could I do but laugh and cry. At least I didn't break anything -- the nurse practitioner I saw before my second chemo told me the most common way for women to break their pelvis is to miss a bottom step. Be forewarned! and less clumsy than I.

At some point fairly early on in all this I was put on blood pressure meds. My blood pressure normally runs in the 100/60 to 120/70 range, but it was registering 150/100 to 177/117, which everyone, including me, attributed to nerves. But the doctor didn't let it go on long -- he said he didn't want to see me get past the cancer and die of a stroke. I couldn't argue that, so I'm on a low-dose, mild med, and am well back within my normal range. Still, it's strange, as someone who hasn't been on prescription meds, and avoids most OTC meds, to suddenly be looking at all these bottles of meds, anti-nausea mostly. But I know they're there for a good reason and cause and I have no problem doing what I need to do! Since many herbal supplements and some vitamin supplements, especially anti-oxidants, can interfere with some chemos, I'm being very careful about using even such seemingly-innocuous things.

That's the initial round. All in all, the first couple of weeks were really overwhelming, but I got through it, and I appreciate all the support I got and am still getting. It made, and continues to make, more difference than you can probably know.

I still have moments of anxiety (over the treatment, not the cancer -- I am the Queen of Cancer Kick-Ass!) because well-meaning, thoughtless, ignorant, or stupid people keep telling me how "awful" the A/C treatment is and "how sick" I'm going to get. Funny, since most of the people who feel obliged to share this haven't had cancer. Well, folks, I know the possibilities -- and I also know not everyone has a horrible time with it -- and I also know I'm well-armed and well-medicated for nausea -- AND I also know my body is doing OK so far -- so please, keep your negative comments to yourselves. I don't need the negative! (No friends or family have said such things to me, so thank you for that! I'm just venting frustration at the ignoramuses out there...).

But this is a good time to bring up the fact that I am focusing on the positive. I'm aware of the negatives and the possibilities and implications -- most of you know I'm no stranger to cancer and its impact -- but I don't see any point in focusing on the negative. I'll deal with what I have to deal with and get through this. And in the process, I chose to put my energy into positive channels. I know you all will respect that, as you already have. Doesn't mean I won't have my down days; this is a roller coaster and I know that and am experiencing it often. But my focus is into positive channels, even when I'm crying.

Future posts won't be so long, this is just to catch everyone up.

Thanks to all for the calls (even when it goes to voice mail because I'm sleeping!) and emails (even when I'm slow replying!) and support and love and energy and prayers and everything positive you send my way. Everything, even the calls and emails I don't answer right away, are very meaningful and helpful to me. Thank you for being there. Special hugs to you all.

1 comment:

  1. Hi Carol,

    I'm Sandy. The one holding your picture in the WOW photo M.A. sent you. I believe every one is put in my life for a specific time frame. Tag your it. I am not a very good writer. I am ................just me. I have been following along with your story and it's the side notes,. poems to be exact that are perfect for me right now. They are GOD talking........to me. I always talk about the small voice within. It's not small when you listen to it.It is your intuition, it is God or Spirit that is talking. I started listening...... I told them that if they couldn't get me to listen to them one way PLEASE try another. It was through your choice in poems that they made me listen this time. In the past it was radio stations that just seemed to say the right thing at the right time. Then it was things I was shown ..............and I smile. I'm not sure you know what I'm saying but all your poems, however new or old they are, were meant for me to read. They pertain to my life and what I am dealing with. No where near what you are., but they are specific. So I am thanking you and telling you not to stop. You are helping other people by writing. Ultimitly I hope you are helping your self. If there is anything I can do to help you ....Please let me know. I'm here ....right here, reading and trying to understand all that you are going through. Notice I didn't say feeling what your going through........cause I can't feel your pain....I can only try to understand what it's like. So with that I will say thank you, God Bless and keep writing.

    just me,