Wednesday, October 27, 2010

Part Three - Coming Up October 27, 2010

Greetings Everyone!

Right now in Crescent City it's a beautiful, sunny, somewhat windy, fall day with rain projected at 70 - 90% today and maybe a total of one inch by the time the storm moves on.  Last week we had huge wind, lightning and rain storms that brought big tree limbs down, cut our power twice in 24 hours and filled our gutters (again) with all the tree debris that's been accumulating since the last storm.  One of Jim's big home owner jobs is to take my electric blower (yes, mine - and, it was a birthday gift, too!), get on the roof and blow all of the mess off of the roof and out of the gutters.  He's already been up there once this season, and it immediately stormed and clogged the gutters again.  I argue strongly against this dangerous little home chore when the roof is wet - which is pretty much all the time at the moment.  I don't always win.  Cross your fingers for dry days this weekend - that's usually when the urge to roof climb strikes.

So...the last chemo is doing its best to make me miserable, but beginning to fade.  I was able to work last week (Tuesday through Saturday - yahoo steroids!) with energy falling as the week went on.  By Sunday, I was a couch potato and slept most of the day.  Monday I actually managed to pass out - an unexpected event, since I am usually really able to monitor being dizzy and manage it to not actually faint.  Got surprised, but not injured.  A better day Tuesday and today, so far.  The good news is that I should be able to climb back up and out of this in a few more days - and the GREAT news is that I don't have a cycle to start again next Monday!!

However, the next part of this journey has begun...information, set-up, planning and scheduling of radiation.  I've really been re-immersed in the numbers that got us started on this journey again, which (lucky you) I've decided to share.  Here goes:
  1. In April, I was diagnosed with invasive lobular carcinoma of the right breast;
  2. In June - after two lumpectomies - I had a mastectomy and extensive axilary node dissection.  All cancer that was seen was removed.  The margins (edges) of the main tumor were "clean."  However, 23 of 24 nodes were positive for cancer.
  3. The extent of cancer that was found caused me to be "staged" at Stage 3.  There are four stages given, based on the size of the initial tumor and whether or not lymph nodes were found to contain cancer.  Because of the larger size of the tumor and the large number of positive lymph nodes, I moved right up to Stage 3.  (Stage 1 is very early and, of course, Stage 4 is a late catch.)  Stage 3 is considered "advanced" disease - but because I had no evidence of distant metastasis (as in bones, liver, etc.), I am not at Stage 4 or "late" disease.
  4. Statistically (based on data from 2001 and 2002), women in my situation have about a 49% five-year survival rate overall.  This means that, with treatment, its about a flip of a coin for me.  Not the best number, but still hopefull since I have no obvious mets.  And, survival rates are improving every year...
  5. Both Jennifer Brown, the medical/chemo oncologist, and Janice Ryu, the new radiation oncologist, confirm that survival is increased when chemotherapy, radiation and hormone therapy are given after mastectomy.  Dr. Brown told me she has gone for a "cure" with the chemo and has been very aggressive.  I believe her.
  6. Dr. Ryu has prescribed 5,000 rads total dose of radiation over 25 daily treatments.  This is a lower number of treatments than I've heard proposed before, so I'm still gathering information about how "aggressive" she's being.  I plan to ambush my oncologist on Friday with this somewhat sensitive question.  At this moment, I start radiation on November 16.
  7. Hormone therapy is given to women whose tumors test E2 and P2 positive, which mine did.  Dr. Brown says that the tumor type that I have is actually very responsive to hormone therapy and that this is one of the most important components of the total treatment plan.  For me it will be an aromatase inhibitor, which is a newer class of drugs designed to remove all the remaning estrogen from my body.  Like menopause didn't do enough, already!  I'll take hormone therapy for at least five years - so I'm told today.  Who knows what will change and/or be new in that amount of time.
  8. By December 22, I should be done with radiation, chemo and nicely adjusted to hormone therapy.  The side effects of all of this year will march on for a little longer after that.  But, as my friends said today, then normal life - real life - begins again at our house.
Why all the contemplation of numbers and statistics?  Probably partly because it takes a while for things to sink in and there's nothing like repetition to get the information actually lodged in my brain. Having finished chemo and in talking with the radiation doc, the numbers are once again fresh and in my thoughts.  This whole thing has really made Jim and me think about how we live our lives, how we want to continue living our lives and how lucky we've really been over the past 20+ years.  I believe that the numbers are actually going to be better than projected for me and that another 10 years or more is in my future - and we have plans for every one of those days!

But, I wrote in this vein today partly because this is how I'm dealing with stuff...and how I plan to keep dealing no matter what happens.  Radiation - big scary machines that do invisible things to kill cells - is another step on this journey and has me thinking again about this little trip Jim  and I (and you) are on.  I want to have all the information I can find that 's accurate and informative.  I wish I'd paid better attention in statistics those many years ago so I could really understand the statistics in some of the research I'm reading.  I wish I understood cellular biology and angiotensin growth factors and many other clinical/biological things that are being researched that may come to apply at some point.  None-the-less, my plan is to do the best I can with the cards dealt and to know about as many of the cards that are not yet face up...and sprinkle a little denial into the mix once in a while.  I will be a partner in my health care and I will be making the decisions about what happens to me.  This won't be happening "to" me - it's happening in me and with me and I'll be right there asking questions and trying to figure out the next best steps for me.  Right now, those steps involve a big scary machine and hormone therapy to get to a cure.

And, just so you know...Jim's giving me about another week to "get over" chemo and then he has a work-out, shape up plan that sounds grueling.  Studies do show that women with breast cancer who exercise and stay at the correct BMI (ahemmm), live longer than those who don't.  Any of you remember me when I worked out hard 6 - 7 days a week?  Well, Jim does and he's making plans for my re-addiction to the whole exercise thing.  Maybe whining will divert him for a little longer.

Thanks to Susan, Kelly and Karen for the great lunch today.  Happy Birthday, Susan!

BTW: It's raining! :)

Sunday, October 17, 2010

The Last One! October 17, 2010

Hi All You Sweeties!

I'm feeling pretty darn good - and pretty excited for two reasons: first, the last cycle of chemo was the "best" so far, and second, tomorrow will be the last of the chemo!

To be honest, I am sooo grateful to have had only a few 'down' days in this past cycle. I was able to work - not complete days but enough to contribute some to our local Building Healthy Communities project at an important time in it's life. And, I actually made soup last week - the first meal I've cooked in months! It felt good to have some energy coming back, to not be so dizzy all the time, etc.

Have to say, though, that I'm really relieved and happy to be knocking on the door of this last treatment. If it can be combined with the same sort of "easier" post-treatment cycle as this last it too much to hope for?

Next week I'll see a radiation oncologist to see if there's a match between her approach to treatment, what is offered in San Mateo, what I know about treatment, and her personality/communication style/etc. and mine. If so, there are going to be appointments to finish the expansion of the pre-reconstruction insert to get it stable prior to radiation, then appointments to get everything set up to reproduce radiation doses over six weeks or so of treatment. I'm hoping to know soon what the start and end dates will be.

That's it for today. Hoping you are all doing well and that you've had a great weekend. The 49ers won one! The Giants one their first playoff game in Phillie! Life is getting better as the end of chemo approaches. Fall is here! Things aren't so bad, right?

Love to you all!

Monday, October 4, 2010

A Post during Chemo? October 4, 2010

Hello Everyone,

I'm in the chemo room of California Cancer Center, getting ready for the next round. This will be 7 of 8 for the total treatment cycle and 3 of 4 for the Taxol. I'm gonna try to blog as it happens, tho I'm behind already. Technical difficulties with the iPad may get in the way - or I may fall asleep midway - but we'll give it the old college try.

Here's what's happened so far:

- in the chemo room, I chose a lounge chair with a great view of the outside. Tim, my registered nurse for the day found a vein, injected a little lidocaine and inserted the catheter, getting good blood flow return. He drew a CBC, hung a tiny bag of normal saline fluid and went to get the lab run.

Lab work is good to go...which means my hemoglobin and white counts are high enough to give me the Taxol. Now, Tim is here with the first of the IV pre-meds: Benedryl 25 mg and Zantac. The Benedryl is to prevent a possible hypersensitivity reaction, which Taxol occasionally causes. The Zantac is for nausea...also a possible side effect, though much less of an issue with Taxol than with the Adriamycin/Cytoxan cycles. This runs for about 20 minutes...the Benedryl is the one that may send me to nap time.

Last week was a tired one, with lots of dizzy/wobbly spells. Today I feel better again...eating well, no dizziness (other than my usual strange self) and feeling energetic. Started my prep for this round with dexamethasone yesterday and will get more IV today. Pretty much makes me "up" and wired.

Jim is here, making his Blackberry smoke. Once again, he's re-arranged his schedule to sit with me for these 4 hours. At the hospital, it's budget season and Jim is up to his eyebrows in getting the operating and capitol budgets done. And, it's time to get ready for year-end close, followed by audits. This week, he has Finance Committee and the Board meeting too! Busy and nerve wracking for Jim! Though I love having him here, it's a hard week for him to do it!

The next round of pre-meds are up and running. Zofran, another anti-nausea med and the steroids, dexamethasone. Another 20 minutes or so and it will be on to the Taxol. I got here at 10 am and it's now 10:50 am.

Now the Taxol. They start it slow to be sure I'm not going to have one of those hypersensitive reactions. I haven't so far, but they can be dangerous. Shortness of breath, swelling, etc. Reminds me that this stuff is poison! Total time for the Taxol will be a couple of hours.

So...a brief hair - or lack thereof - update. Taxol is also one that makes hair fall out, so not expecting any regrowth to happen. We buzzed my head two weeks after the first round of A/C. It fell out quickly and I now have a tiny halo of gray fuzz that remains. The fuzz hasn't fallen out nor has it regrown in one bit. I shaved my legs at about the same time and there's still no re-growth. Have lost most arm hair, but still have eyebrows! I'm altering between my wig and scarves. Don't really like wearing a wig...itchy, hot, strange. I wear it outside the house when I'm tired of being stared at...when I wear the scarves, strangers do double takes. You can almost hear them say " poor woman.". Ugh!

Thank you ALL for the wonderful cards, wishes, blog comments and support. I read them all and am continually amazed at how many friends and colleagues are out there taking this journey with me. Thank you, thank you!

So, all's finished. 2:00 pm. IV removed. Time for lunch - I feel good and then our long ride home with Jim at the wheel...he doesn't let me drive at all. Wishing you all a great week!