One Down - 24 to Go! November 16, 2010

Hi Everyone!

Well, it's been a little while since I wrote last (am I supposed to say "blogged?") and I have the same excuse that most everyone else has...it's been a busy couple of weeks.  Oh, and I still have a few chemo effects charging around, too.

I have been lucky enough to be able to work between 2 - 6 hours most days, some days better than others.  My pattern has been to get up feeling pretty OK, to work in my office and be couch potato in the afternoon.  Weekend before last I slept a 13 hour night, napped twice during the day on Saturday and slept another 10 hours that night!  Didn't do that much better this last weekend.  Although I do love football, that much TV is just wasted time!  But, I think my body is sending clear messages...I'm not totally back on my feet yet.

Speaking of chemo changes:  I am much less dizzy than I was in the week that I managed to faint.  That fact likely means that my bone marrow is making more red and white cells, as it is supposed to do.  My low energy level tells me that I am probably still anemic, but not being dizzy is a start.  Yeah!

I still have peripheral neuropathy (numbness and tingling in my fingertips and toes), which is a side effect of the Taxol.  I'm told it may take months to go away - and, for some people, it doesn't.  I hope the latter isn't me: it's really weird to try to place your feet properly when walking or to hold on to something you really can't feel.  Folks who are diabetics and others who have heart disease or other issues, can have this problem.  Until now, I never knew what they were going through.  It doesn't hurt (at least for me), but it is so weird!

The title of this blog refers, of course, to the fact that I had my first radiation treatment today.  It was easy enough and weird enough, but I think it will quickly become routine.  Several minutes of positioning by the techs, recording of numbers (91.5, 87.5, etc.), techs leaving the room, the machine beeping and whirring, and presto-chango, all done.  Maybe 20 minutes total and this one was longer since it was the first.  No pain, no sensation whatsoever.  Just calm, steady position holding for a few minutes on my part - I asked if I could breathe while the radiation was being delivered and was told "we recommend it." Hah! 

I left you at last blog with the correct impression that I had some remaining questions about the radiation dosage prescribed for me at the Sacramento office.  I want to let you know that my medical oncologist coordinated a very nice second opinion for me with a radiation oncologist in San Mateo.  This doc reviewed my chart, read all my surgery notes, chemo details, looked at my pathology slides and talked to the pathologist.  Then, he called me and told me that what was prescribed was exactly what he would do in his shop.  He explained that the difference in dosage was due to the timing of the recommendation - the longer treatment period (and higher dosage) had been discussed before I had the mastectomy and all the tumor was removed (clean margins).

I feel comfortable now in my Sacramento radiation location - and am very grateful to the wonderful docs in San Mateo for helping me get my questions answered.  Sometimes the health system does work!

Jim and I loaded the car yesterday with two cats and one bird (Booker) and a bunch of my junk and moved me into Joy's house.  I've spent a little time today getting organized and settled here.  The cats are doing well, though they and Booker are still nervous.  Sneakers is under Joy's bed...apparently for the day today.  Isn't it amazing how cats learn about where their  litter box is and just go for it?

It was hard to leave Sal (our lovely Double Yellow-headed Amazon parrot) and the dogs at home. I'm not sure how they'll interpret it and I'm most worried about Sal since he's been so strange since I've been hairless and wearing hats/scarves the past several months.  

Jim is here until Friday morning and that's a real treat for me.  We get time together and I appreciate every second of it.  It will be hard and harder once he goes home and we start the long time apart!

BTW: we are thinking that something has crawled into the engine or vent system of my lovely Toyota and died.  I had a weird noise experience last week  when I started it - kind of a rattling, bumping sound from the front passenger side.  The noise went away without any obvious resulting problems... until the last couple of days.  Now we have a very foul odor, which seems to be getting worse and we both think we've got something really dead lurking somewhere.  Unfortunately, there is nothing obvious to be seen.  Do you have any ideas of what to do?

We will likely take the car to a dealer and have it disassembled to find what the issue may be.  In the mean time, don't ask for a ride with us unless you have a really bad cold or allergies!

With thanks for all your good thoughts and prayers and with hopes that you have a wonderful week! 

Half Way August 29, 2010

Don't read any further if you are tired up to here with complaining and whining! You've been warned.

The good news is I'm done with the Adriamycin and Cytoxan cycles (4) prescribed for breast cancer at Stage 3. Everyone - doc's, nurses, others who've done it before me - said "it's hard." That is such a tremendous understatement! OMG!!

The good news is I'm half way done with the chemo phase of this treatment. If this is the first half, what - oh what - will the second half be like? Everyone - this time, doc's and nurses - say that the Taxol is " easier.". Easier than what? The AC? What does that mean, exactly? I'll be less exhausted? My appetite and taste buds will be somewhat better and I'll be able to get more than 1,000 - 1,200 calories down every day? Thank goodness I have so little energy...my calorie use is just enough that I am continuing to lose a pound or three every cycle, but hey I still have weight to lose, right?

As of today, I'm one week into the last AC round and had another lousy day. Had hoped to be enough on my feet by now to go to a friend's house for a little out of house time. That whole idea went up in flames...too tired, stomach upset. Just keep saying "maybe tomorrow.". I can hardly stand the thought that in one week I'll be starting another cycle, with three more after that one to finish! Quitting isn't an option, I get that...

Originally, I planned to write this blog about my history with chemo as a nurse and how I know that it was so much harder for those women - and the results much less good. Maybe next time. Today, it's hard to be very positive and/or optimistic. The next two months are stretching ahead and it's hard to see the light at the end of the tunnel - influenced, i know, by feeling like crap at the moment.

To my friend and colleague who's just starting treatment tomorrow - ignore all this crap. You're on another path...it will be different for you and you won't whine like I do. To being "cancer free", you and me!

Here's to Mike, his family and everyone who's missing Toni at SCH...we were sorry to miss the "tea party" last weekend. Blessings to you all.

Here's to my love Jim! Continually, he amazes me. Today, he fixed bird perches, watered the garden, did laundry, went to the grocery store, made me food, supervised showering (so that our parrot Sal didn't go ballistic), AND canned sweet and sour cabbage as well as salsa (he promises it's take the skin- off-your-mouth hot, not counting a million other tiny, important and cool things he managed to squeeze in! I can't tell you how much he means to me.

I promise I'll be better tomorrow and with the next blog! Honest!

Off the Cliff July 18,2010

Hey All,

So here's the day-by-day after chemo...
Monday - chemo round one. A l
little headache, no appetite, nausea...all pretty much OK with meds.
Tuesday - Neulasta shot. Tired. Jim had to drive us all the way home. Little appetite, but OK overall.
Wednesday - able to work at home several hours. Tired but OK. Little appetite, but did eat light dinner! Friend visited overnight. Second short walk of the week!
Thursday - doing well. Attended two meetings, worked in my office. Ate pretty well...lightly. Tired at end of day.
Friday - crushed! So tired. No appetite. Slept all day. Achy. Low grade fever. Headache. Hard to even drink water. Feel awful! Not able to work as promised.
Saturday - better. Two naps, no walking outside, eating a little. Think yesterday was about the Neulasta. If so, hate it!
Sunday - better again. Can keep my head off pillow for a couple of hours at a time. Very limited appetite. Opened mail for the week...thank goodness nothing urgent. Weight down 6 lbs. this week. I called it the chemo diet - maybe so.

Was hopeful at the beginning of the week that this might be relatively OK to manage, but the end of the week changed my mind. Not looking forward to next round in 8 days. Jim is my stalwart...hard to think about this without him, not sure how I'd manage! From scrambling eggs to doing laundry, to taking me to appointments, so many things. I am soooo lucky!

Hope you are all having a great summer!

First Round Done - Seven to Go July 14, 2010

Hi Everyone!

We (and I always mean Jim and I, not just me) made it through the first round of chemo and Neulasta. It wasn't too bad all in all and so far. I'm on alert for changes for the next few days, as I get eased off of routine nausea med and steroids and back to regular drug effects. I do have lots of "as needed" meds if nausea pursues beyond these first few days...thank goodness.

The out-patient setting at the doc's office is relaxing, organized and very professional. First comes the IV insert (these nurses rock! No pain), then the Aloxi a new and wonderful anti-nausea med, along with a dose of steroid to make the whole thing work better. Then two big IV push syringes of Adriamyin - red punch color, terrible on veins, carefully given. Then a bag of Cytoxan for about an hour. I managed to knit, listen to a book, talk to Jim, rest. Total of about three hours in the office, then on our way. I actually ate lunch at Taco Bell - my favorite comfort food - and the last I've seen so far.

By about 3 pm, had a low-grade headache which Tylenol didn't cut. By 4 pm slightly nauseated. Ate a few graham crackers. Eventually went to watch Jim eat dinner. I managed a 1/2 cup of refried beans and a piece of bread with water. Where's my wine? Where's the fish I so love?

Took my evening cocktail - a mighty combination of Compazine, dexamethasone, ativan and Vicodin for headache. With the exception of the Vicodin for post-op pain, I've never taken any of the other drugs...but together they made for a good night's sleep.

Yesterday, to oncologist office again for Neulasta shot. This is a colony stimulating factor drug, pegylated to be long lasting. As the chemo wipes out my bone marrow's capability to make blood cells, the Neulasta kicks in with the message to get going again. This lets the docs give my chemo on a two-week rather than a three-week cycle.

Jim had to drive the whole way home (poor sweet baby!)as I was pretty much sleeping the entire trip. We're having to reconsider our plan that I do some of these on my own...may need to enlist one or two of you for drive/fly combos to get me through this mess. We have the next round figured out, though, as Jim has some work in the area when I need to be there for tretment.

Now that you know way more than you'd like about this mess, today is going OK. Still little appetite and tired. I think some of the tired is about effect of the Emend anti-nausea drug. Still hoping to do a little resting, a little working and some knitting today.

We have a beautiful sunny day here! I'm also going to sit on the front porch and watch it for a bit. Maybe take Scout for a walk - we're both supposed to be getting exercise.

Thank you for all your good wishes, cards, calls and more! Am loving hearing from you and thinking of you often. Love, xoxoxoxoxoxoxoMom/Susan

Home Again! 6/19/2010

Home again we are! And, so glad to be here! We have so missed being in our space and, even more, with all of our very special babies. Michelle, who takes care of house and pets, does a wonderful job...but it's our home and we have missed all of its nuances.

I'm doing well post-op. Little pain, mostly just tired. Path results were both OK and bad: mastectomy got all of cancer in breast, but axillary nodes were 23/24 cancerous. Still, chest xray, bone scan, CT of chest, abdomen and pelvis were negative...no distant metastasis. And, no other nodes were seen to have cancer.

My medical oncologist said I'm "cancer free" and that treatment should be aimed at full " cure.". The quotes are mine on her exact words...the surgery supposedly got all the cancer in my body and remaining circulating cells are supposed to be killed off by chemo, radiation, and long-term hormone therapy. Keep your fingers crossed!

We go back to doctors for more post-op follow-up on Thursday next week, for chemo education, some blood work and finally for starting chemo on Monday 6/28, if everything is OK. Chemo will be rough - every two weeks for four months. Then I'll get a month to rest and then 33 radiation treatments. If all goes well, the hard part will be done.

We're still working on logistics, but we think that we will start by going to San Mateo for about 5 days out of every 14...for chemo and other required medical follow-up. Once I'm in the routine and know more about how I will feel with the chemo, we're thinking that maybe Jim won't have to come every time. He is my rock, so it will be a big transition but we also need to try to have something a little normal in our lives right now. His boss is being absolutely wonderfully supportive so no pressure from that side at all. We really appreciate it - and still want to stay on track as much as we can on most life fronts. Trying to balance, as always.

That's it for now. We've been home an hour or so. Birds, dogs and cats are settling. Jim's in his garden checking for weather damage and hoping for tomatoes. Nap time for me! Love to all, Susan