Where Have I Been? September 27, 2010

Hi Everyone,

Actually, I didn't mean to be a non-blogger for these past couple of weeks...during my last chemo (September 20), I was on my iPad giving you a blow-by-blow description of what happens from IV stick to lab draw to chemo.  I discovered, however, that the iPad isn't completely compatible with this blog program and I was unable to save a portion, return to it, and still have all the tools available to me to continue writing.  I thought I saved what I had written, but it isn't posted on the site today so I think that effort was totally lost.  Oh well!

My first round of Taxol was really lousy. Several medication changes were made for the last one which helped a lot.  A new stomach medicine so I have less upset and can eat some.  More steroids so the really achy, flu part of things is reduced in the first week.  The result was that I did feel better last week - in fact I was able to WORK on Tuesday, Wednesday and Thursday!  I actually got something done! 

Unfortunately, the slide started on Friday (which was still an OK day, just not a working day) and continued through the weekend.  Not as bad, however, as the first round...tired, bone achy and quite dizzy.  I spent much of the weekend on the couch watching college and NFL football - ask me who won out of our state teams...not many!  Nebraska won, though!

Time is going by quickly.  Hard to believe it's the end of September!  I have two more chemo treatments and then I'm done!  After the chemo is rest for about a month or six weeks.  I'm really hoping to get back on my feet then.  Am starting to make decisions about where to get radiation - San Mateo through the same program or Sacramento.  I'm lucky enough to have family/friends with homes in both locations - it helps a lot as I'll be able to consult with both doc groups and get a sense of who will be best to work with.

Sorry for the break in communication!  I hope you are all doing well, enjoying apple pie and other wonderful fall goodies.  BTW: for those of you who live up north as we do, did you know that Michelle at Vita Cucina makes the BEST blackberry pie ever!  It was my birthday "cake" earlier this month and I've never had pie so good!  Try other kinds too...I'm sure they're fabulous!

Book Titles- Septermber 3, 2010

Hello Everyone!

One of the games that Jim and I like to play is about made up titles for books we "plan" to write.  For example, the last couple of years we've been thinking about a book called Presumed Republican.  If you are the middle-aged/senior-aged, chief financial officer in the local hospital who is a member of Rotary, you are ...presumed Republican.  Since just about everybody knows exactly where we live, imagine the surprise and confusion when Obama and No on Prop 8 signs appeared on our "Republican" (not) lawn a year ago.  It got most interesting when we received feedback from the K  - 8 school down the street from us that teachers were concerned about the effect of the Prop 8 sign on the children. 

Anyhow, my latest book title is Chemo Sucks (Or 50 Things to Remember Even After Chemo Fog Does Its Best).  This week's top entry for the list of 50 is "don't believe everything you're told."  Yes folks, it's been one lousy week since the Taxol.  Very close to as bad as the first round of A/C.

Remember when I asked "easier than what?" when my docs said that "most women" do better with Taxol?  Less nausea, more energy, generally feeling better I was told. "In my experience, if you had a hard time with A/C, the Taxol will be easier."  (a quote from my doc).  "My friend was jogging on the 6th day after her infusion." (a quote from infusion RN).  Hah!

In the rush to be optimistic, it is important to remember one really key thing - Taxol is chemotherapy, poison to cells.  How much fun can it be? Bottomline for me this past week...it hasn't been any fun at all! 

I was infused on Tuesday last, got home Tuesday night, felt good until Wednesday at about noon.  From then on, you name the symptom and I've had it - bone aches all over (a Taxol specialty- you feel like your bones want to crawl out of your skin and no position is comfortable except asleep), low grade nausea which of course eliminates the appetite, dizziness, no energy, diarrhea, and more.  Am at my computer for the first time in almost a week. Actually went for a ride in the car yesterday to get out of the house for a little while.  Thank goodness the trial was cancelled; I was supposed to show up for jury duty this morning!  I totally forgot to get my medical excuse taken care of and I slept til almost 10:00 this morning.  Don't think the judge would have been too excited by my disregard of the legal system.

That's the news from Crescent City today.  BTW: if you'd like to contribute to the list for Chemo Sucks, send me your items.  We can probably come up with some fun stuff!

Have a great week, you all!  Much love!

Heading to San Mateo - Again September 6, 2010

Happy Labor Day Everyone!  I hope you've all had relaxing, fun weekends...maybe with a little sun and outdoor time involved?!

Here in Crescent City, we've been lucky enough to have sun and relatively warm weather (60s - which is really nice here).  Jim went crazy yesterday in his garden and brought in handfuls of tomatoes (yellow babies, various red heirlooms - so good!) and actually canned five quarts of pickled beets.  He just loves having those veggies from his childhood in the pantry for winter-time surprises.  For me, the pickling brine smelled good, but frankly, I couldn't imagine actually eating the final product.  Maybe later.

So we're about to join the traffic as we head to San Mateo for my chemo (#5) tomorrow.  Again, not looking forward to it...though it will be a new drug and a new experience.  The AC kicked my butt again this time during the first week - but relented a bit last week.  I was able to be up and about for some hours everyday Monday - Friday...got some work done, saw some friends.  Yeah!  Have been a couch potato for Saturday/Sunday, but the US Open Tennis tournament is on...

The big news for me was getting in an airplane and flying to the Bay Area for my doctor's appointment on Friday.  I haven't been in the air since before the first surgery in April - a long time, given my business - but finally saw a physical therapist about potential lymphedema in my right arm and was told what to do.  Turns out that every mastectomy patients has about a 2% chance of getting lymphedema (swelling) in the arm/s where the lymph nodes have been removed.  That risk continues, apparently, into the future and prevention activities help to avoid it. 

I don't have lymphedema now and have a pressure sleeve for my arm which I wear, especially when flying.  Turns out that the pressure gradients while in an airplane can drive lymph fluid into the arm cells and make things worse.  The long and short for this trip?  No problems...except for getting diverted from Arcata Airport to Redding because of fog (first time for me since living up here), staying overnight there and then being bussed back on Saturday.  Nothing related to my wonderful medical issues...just another adventure!  Thank goodness our friend Rick drove Jim to Arcata to pick me up and drive me home on Saturday afternoon - I would have made it, but I was tired!

You can tell, I'm sure, that I feel better this week.  I am anxious about tomorrow, but trying hard to use my semi-Zen breathing and meditation techniquest to calm down and stay focused on good things.  Thanks to everyone for all your support and for letting me be a princess-sized whiner!  Randy, am thinking of you everyday - hope your first week has gone well.

Cross your fingers for chemo tomorrow and the week afterward!  Should have less/no nausea and an "easier" time - that's how it's advertised.  Love to you all!

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!

The Roller Coaster -August 22, 2010

Sunday before my fourth chemo round. We're at Joy's, just relaxing. It's a gorgeous day...not too hot in the valley for us northern California coastal folks. We spent a little time with Damian and Sarah yesterday at the Davis Farmer's Market, followed by lunch. It's been really nice to be able to see everyone more frequently - even though the reason for it isn't great.

So this chemo cycle has been pretty lousy. I had a couple of good days initially, then pretty much slipped off the radar for last weekend. That much has been the usual for the first week. However, this second week has been very up and down, complicated by dizziness, exhaustion, some exertional shortness of breath, etc. While I've been able to do some work, it also took me 30 minutes to change the sheets and duvet cover on the bed and when Scout ran down the hill into the garden...well, it was quite an adventure to get her back to the house by myself.

Told all this to my oncologist who said it was unusual to be so fatigued. Got some blood drawn and my hemoglobin (the cells in the blood that carry oxygen around the body) was 9.5. This number is 2.5 grams below normal...so I'm anemic. Explains a lot, but having the explanation doesn't actually help me feel better. When we went to the Farmers' Market and lunch on Saturday, I was pretty much done energy-wise after a couple of hours. Laid down at Joy's and slept for five hours. Went to bed and slept through the night - another nine hours!

Another weird thing: I've been having very hot and sore soles of feet. A burning sensation combined with soreness in heels, balls of feet and toes. Turns out Adriamycin sometimes causes "hands and feet" syndrome...just what I described. Who knew? Prescription is lots of lotion on hands and feet. I can do that.

So tomorrow is the fourth and last cycle of the AC - thank goodness! The doses are going to be reduced a bit so that my bone marrow will recover better (hopefully). Next comes the Taxol, which is supposed to be easier. Fingers are crossed! I can now fly again, so we're going to try to figure out how to shorten these long treatment weekends. I love seeing kids and family, but I miss being at home and miss our pets too!

Sorry to be grumpy today, but I am pretty crabby about being tired all the time. My gardens haven't seen me once this summer. The weeds in the backyard areas that i usually maintain are out of control.I have interest in knitting for only a few days of the cycle - and I can hardly count the patterns some days. Cooking, cleaning the house? Ha! Thank God for Jim!

Oh well. Enough complaining. I hope you all are enjoying this wonderful weather. Send a little more sunshine to Crescent City, please...Jim's tomatoes need it. And, if you want to pick wild blackberries, schedule a trip to see us. They're just about ripe!

Couldn't Resist! August 16, 2010

Many of you have written and called requesting this picture...so had to bother your email boxes with this.  It actually took Jim several days longer than usual to get someone to take a pic he liked (or I think he likes it since he sent it to me), but here it is, hot off the presses.  Jim No Hair!

Actually, it's not fair.  He got shaved on Thursday last and his hair is already visibly growing back.  I got shaved a month or more ago and, while I still have little fuzzes that haven't fallen out (not sure why), there is definately no re-growth.  None!  To keep his bald look, Jim's going to have to go to the barber shop every other week.  And I thought we'd be saving on hair supplies.

So that's it from this end.  Thank goodness, I feel better today.  Went to movie yesterday - Eat, Pray, Love - highly recommend.  If you haven't read the book, it's better of course! 

And Jeff - stop falling and getting your head hurt!  Enough!

Another Cycle August 15, 2010

Three down and five to go.

The good news is that I have one more round of AC (Adriamycin/Cytoxan) and then I start on Taxol. Why good news? Finishing the AC means I'm halfway through the chemo - and my doc says that Taxol is "easier." I think this means less nausea/appetite issues, less exhaustion. It comes with its own set of wonderfulness, however, including, for some, peripheral neuropathy. Peripheral neuropathy is numbness and tingling of toes/fingers, etc. I'll be happy to pass on this side effect, thank you. Its other main side effect is hair loss...been there, done that.

Speaking of hair loss, there are two new events this week. First - and in spite of my pleas not to do it - Jim shaved his head in support of my baldness. He hasn't yet given me a picture, though we'll hopefully have one soon to show the world. You know Jim...it's all about him! (This is actually a joke reference to his facebook page, where he says this cancer is all about me! Go figure!). Suffice it to say, we both look much better with feathers - and Jim has not only shaved his head, but his mustache too. I put in an immediate request for both back...to no avail so far. This is the first time I've seen him bald and mustache-less...ever!

And, I've actually put my wig on. Am determined to wear it when I go out in public, as I'm told it looks better than scarves or hats. Around the house (where I've been most of this past week), it's too hard to wear it. Just try napping all day with a wig on! Light weight buffs/scarves are much easier to deal with. However, the wig is a new look and maybe the folks that do a big double take when I'm actually out in the world will not give me a second glance with it on.

Our huge thanks to Joy (one of my fabulous sisters (in-law)). She volunteered to drive me home from chemo last week - and if something could go wrong, it did. She had an accident in her newish car ($7,700 damage to car, none to Joy) on her way to San Mateo, had all flights cancelled out of Crescent City due to San Francisco fog when she was supposed to head home, couldn't rent a car here (everyone else wanted to drive away too after their flights were cancelled), had to coordinate all insurance/rental car/body work/etc. details remotely and more! Do I feel bad? Yes! Do I feel guilty? Oh yes! But, many thanks Joy! It was great to spend time with you...we do talk, don't we?

Next week, Jim's up for driving and we're going to take the birds for their semi annual feathers/nails trimming. They will like the ride, though not the boarding at the vets. I'll be happy to have them with, but not the extra driving to get them to the vet (another hour beyond San Mateo). We live a crazy life, I know.

Sending puppy thoughts to Jazmin.