Taking the Scenic Route

Resolved: Today's Chemo Treatment & the CT Scan Results

My sister Kate is here again from the bay area.  She arrived Saturday evening, and is a blessing with her presence.  She is so fun with the kids (she brought them a slip-n-slide!) and has been eager to help with any necessary farm chores.  Helped me plant sweet potatoes yesterday.

And she took me to my 8:15 am check in for today's treatment.

We got the scan news pretty early.  And it was great!  Bob wasn't there yet so I asked Nurse Sandy if she would have Dr. Chui come see Bob when he arrived, and tell him his interpretation of the results.  As always, Chui pulled no punches, but made things even more dramatic.

The tumor in my breast is basically gone.  It is so gone that the radiologist assumed it was a post lumpectomy scan.  The lymph nodes in my chest and armpits are all "resolved" or back to normal size except for one, which is smaller, but still too big.  In my lungs a diffused "glassine" area of budding cancer cells has disappeared.  There remains only two distinct lumps in my lungs, one of which is smaller, one of which is stable.  In my liver there are four areas they are watching: one they suspect is not metastatic but a fatty deposit, one is smaller than before, two are stable.

The important thing is: nothing new is growing, everything is mostly shrinking, disappearing, or at worst a few stubborn spots are the same size.

Dr Chui's comment to Bob: "I think most of those spots are just scar tissue now: you kill the cancer cells and something stays behind."

All this is just at the halfway point of treatment.  The treatment plan works: as does the acupuncture, the Qigong, the energy work and meditations, and most of all: YOUR support and prayers.  This is how blessings and miracles occur.

I thank you thank you thank you!!

The next nine weeks I expect to be much harder for me physically (and mentally) than anything that has come yet.  With the help of family and Stacey and the BRAS team we are lining up our household help and help for while the kids are out of school.  I am going to need even more down time to recover, more help with basic needs, so I can focus on keeping my body strong and meditating on the shrinkage of those remaining spots.

I really need to avoid exposure to any new cold or flu viruses too.  This last one while mild is still about more than my body can handle... but more thoughts on that for another blog.

What great news, eh??

My new favorite word is "resolved."

I should post some verbatims from the report, the medical-ese is classic.

The chemo treatment went groovy good, pretty easy with the high of the good news, and Kate there to keep me company.  I feel young and strong and lucky while I'm there (ahem: steroids!!).  Afterward we ran by my favorite feed store in Portland for the organic chicken feed for the girls, and then stopped at the tile store to price out the new bathroom tile we'll get tomorrow or Wednesday.

Tomorrow Stacey takes me back in for my white blood cell boosting shot of Nuelasta, and then I get three weeks at home until chemo #5 on June 22nd.

Blessings to all of you!  What a great June it will be!

CT Scan this Friday

So, not a PET scan, just the CT scan (I don't know why,) Friday morning.

This will be the much anticipated scan to see how my body is responding to chemo.

I have a couple fantasies about this scan and the results I hope for.

The first fantasy, which I have since rejected, is that they would send me through and I would be so miraculously clean and clear that they would all be shocked and puzzled and would insist on sending me through again, just because they wouldn't believe I could be so healed after only three rounds of chemo.

But as I said, I've rejected this fantasy, because I came up with a better one.

In this version they send me through and I am so clean and clear that the technicians and my oncologist and all the doctors give each other knowing looks and high fives, but then they say they've seen it before, occasionally, in fact it's been "documented in some scientific findings" as a possible outcome, and then they give me a reprieve and say I don't need to do any more Taxotere, I'm done with chemo, just Herceptin for the rest of the year.

Because here's the deal, I know they wouldn't just let me stop chemo unless there's some data to back that up as a solid move.  And because I am so mentally tired of the side effects of the chemo, I'd happily trade in my planned miracle for a reprieve from the drugs.  Yeah, I'd love to have the chemo just stop.

I'd love to get the feeling and strength back in my fingertips.  I'd love to avoid the three more rounds of nausea and constipation and lack of taste buds and fatigue and worry about white cell counts and fevers.  I'd enjoy it if my hair maybe grew in a little thicker, though I am shamelessly accepting of my baldness (I forget about it often, yes, even in public.)  I'd love to know that I could spend the next ten weeks of summer doing something else, even if it's recovering from a surgery or two.  I would really love to have the strength to truly enjoy the summer with my kids and garden.

Wouldn't you?

So that's my fantasy: don't any of you actual nurses and oncologists burst my bubble on it okay?  That's what I'm going into the scanner thinking about Friday morning.

Fourth chemo treatment happens next Monday, June 1st.

How I didn't have a heart attack Wednesday night, and the case for small plates.

My friend Tricia is a nurse practitioner.  "Just like a doctor!" says Emme, who is enamored of all things Tricia.  Tricia and I have joke-stories about many things, but a favorite is one about my pain tolerance that goes back several years.

In spring 2003, when Luke was about 10 months, I woke up one night in intense pain, massive pain that seemed to be centered under my ribcage.  We'd all had colds, and somehow I decided that I must have pneumonia, that my ribs and lungs were clearly on fire with illness.  I spent some time trying to suck it up, then by six or seven in the morning was writhing on the floor in agony.  Of course, it was Sunday, no options for treatment except an ER.  I had Bob call Trish.

He explained the situation as he understood it from me.

"Yeah, Erin is in a lot of pain.  She thinks she might have pneumonia.  It hurts in her ribs."

Tricia: "What's she doing right now?"

Bob: "She's rolling on the floor moaning."

When Tricia tells the story she says that fact alone made her know something was REALLY serious.  She knew that I had done super fast childbirth with Luke, all natural, no pain meds, no anesthesia or epidural.  She knew that post childbirth I'd mostly shunned the vicoden and even ibuprofen they'd prescribed.  She did her magic symptoms evaluation and said quickly,

"Bob, it's her gall bladder.  She's the right age, she just had a baby, the pain is weird like that, but it's her gall bladder.  GO IMMEDIATELY to the Emergency Room, no fooling around."

When I did get to the hospital, after fooling around with driving myself while leaving Luke with Bob, they wouldn't let me leave.  Turned out I had acute pancreatitis as well as total gall bladder blockage, and they were actually concerned for my safety.  Can you imagine! I tried to explain about having a ten month old at home, but the doc insisted I stay, and I got booked into a bed and a sweet experience with all night nursing care and morphine drips.  Thank god Luke was already taking a bottle, and was mostly on solid food, so I didn't have to totally worry about weaning him!

I had laproscopic gall bladder surgery on Tuesday I think, and was walking the halls on Wednesday, finally home Thursday morning.

In retrospect I realize that I had signs that could have pointed me to the gall bladder issue: signs that I confused with heartburn because my pain threshold is pretty high.

So that's my joke with Tricia about my pain tolerance: "Remember that time you had pneumonia that made you roll on the floor in agony??" And we bust up laughing.

Wednesday Night

So, last night we had a spontaneous little evening with friends.  Lance and Katie and Lil' Jack and Katie's Mom all came out to the farm in the afternoon.  Lance helped me with some chicken chores: we got the chicken kindergarten cleaned up and mostly ready for the mamas-to-be (YES! I wore my new surgical face masks!).  Katie and her mom put together an amazing dinner from the food my Aunt Laurie had sent out to the farm for our dinner.  We all finally sat down to a great meal, juggling various cranky children of various ages, but really just enjoying the easy comfort we share with Lance and Katie.

And we had delicious green kale!! A yummy, yummy dish of kale, cooked to perfection with some caramelized onions.  It was a delicious counterpoint to to the red sauced organic tortellinis.  And then we finished out the meal with blueberry pie.  I had two helpings of kale, lots of tortellini, and definitely some pie.

The problems started after our guests left, about an hour after we'd finished dinner, while I was laying in bed with Jack to sing "cowboy song".

The Heart Attack

I got a big nasty pain under my diaphragm, just under my rib cage.  Then my face got really hot and flushed.  I figured I might just be in trouble.  I got Jack placated, then went downstairs for my new thermometer I bought just for chemo-induced fever emergencies.

I made Bob feel my forehead and then used the thermometer.  The thermometer said I was at 98.9.  So far so good, but I felt awful.  I drank some water.  I took an antacid.  I paced around.  I started thinking that my heart was beating irregularly.  I started thinking about who would know if I was having a heart attack or a blood clot from the surgery Monday.  I was pretty sure my left arm had a pain in it.  That's a sign of a heart attack right?  Or is it the right arm?  I tried to sit on the toilet.  I drank more water.

I seriously told Bob that he needed to know my current symptoms just in case I became unresponsive in the night.  I managed a belch and felt slightly better.  I took two more antacids and called Tricia with my latest medical emergency.

The case for small plates

Yeah, those of you who have done chemotherapy have already figured it out.  In fact, I broke a pretty basic rule of "feeling good" during treatments.  Small meals more frequently.  Somebody I'm sure has a catchy phrase or acronym for it, but the honest truth is that it's just a lot simpler to say than to actually do.

I love sitting down for dinner with friends, love long drawn out meals with good food and great conversation.  I am also horrible about making sure I get enough meals during the day--I am always one of those moms who feeds the kids but forgets to feed herself!  So this is actually a very real life-change challenge for me.  I need to reset my habits, I need to re-figure the hunger/nausea/full cues I may be getting, because they are seriously whacked right now.

So, Tricia's advice: Not a heart attack, not a blood clot, it's heartburn: have smaller more frequent meals.  Another good belch and I had to agree with her.

"Remember that time you had the heart attack that you cured with Tums?"  And we bust up laughing.

Home from Chemo, or as we're now calling it "the Adjustment"

Not bad guys, not bad.

Today went well, very well considering.

Considering I was awake ALL NIGHT last night, speeding around and amped up by the steroid-type "pre-meds" they had me take twice yesterday.  No one told me about that potential side effect, and by the time I realized what was going on at 2am it was way too late to take any of my new "sleep aids".

"Better living through pharmacy", my foot!!

So, yes, I really was awake all night last night.  I lay in bed for at least 2 hours, then got my ipod and listened to my favorite go to sleep music.  Then gave up at 5am and started a fire and had a great meditation session again.  Much more focused than the other day, and more powerful, grounding.  Then I made oatmeal, fed the chickens while it was still dark outside, made sure Bob was up and getting ready, took a hot tub and a shower, dressed and we were out the door just before seven am.

The nurses and nurses aids at the medical oncology dept at OHSU are great: so positive, upbeat and funny.  The view is amazing: big windows looking out on the river and the new South Waterfront development.  Even on such a gray day it was a treat.

I got into my suh-weet leather recliner about 8:15, then received a stream of nurses and personal collecting vitals and blood and urine samples, and going over every little thing to make sure I knew what was going on and that ALL my questions were answered. 

Got a much better run down on the "pre-med" issues, and how to deal with it.  The good news is that it will only be something I take for the three days surrounding each chemo treatment.  And now I know which of my new prescriptions is the "mother's helper" that will slide me off into anxiety-less dreams even when I am on the Dexamethazone (sp?).

So, all the prelims finally over I finally got hooked up to my IV machine and got my first bag of saline, followed by the Herceptin.  They had me take some precautionary benedryll and ibuprofin I think before they started the Herceptin, worried that I might have a potential reaction to the chemo drugs this first time through.  After the sleepless night, and with my comfy chair the benadryll knocked me into fuzzy la-la land.  Then a hospital volunteer, Gladys, came around to give me a lovely hand massage, tell me about her grandchildren and great grandchildren, and advised me of how she cured her melanoma last year and avoided chemo by changing to a lower ph diet.  But my thought process was getting a little fuzzy at that point, especially after she gave me one of those toasty hot hospital blankets, so I may have been making up that part of the conversation.

The good news was that I had my lawyer/body guard/jokester husband there for me: his job was to take notes about what people were actually telling me, set up my medical records notebook (not dissimilar from a trial notebook he says) and generally charm the other patients and all my nurses.  The downside for him was that he couldn't acheive a wi-fi connection, so my guess is that he'll be happy to let my girlfriends take me to future sessions.

The Herceptin drip took about 2 hours.  And, I think I actually felt the beginnings of it working--funny heat and tickles warmth in my armpits and all across the front of my chest.

After the Herceptin they started the high dose Taxotere drip.  That took about an hour and a half I think.  We had a nice surprise visit from my Aunt Anne Skelton, who was sweet to drop in and visit us.  This is Anne, and here's me in my recliner with the kozy blanket, nursing a cup of yummy chicken noodle soup.
 
Then Bob and I played two games of backgammon--I took amazing risks and he won both games, but I blame the drugs.

The Taxotere WAS a little more intense, I felt spacey, and my face got flushed and warm, as it has continued to do off and on this evening.  I got a dry mouth and while hungry, did feel the faintest beginnings of stomach gurgles that might spell trouble later.

I did take some anti-nausea meds after we left.

And we did leave.  I think we were out of there and eating lunch by 1pm.

Then back to OHSU for a first ever for me appointment with a dermatologist.  This was an appointment I asked my ever amazing Nurse Martha to arrange for me for purely psychological reasons.  I have felt for years that I needed a baseline exam to go over all my numerous moles, and with this cancer stuff up in the air, my grandma Lily's battle with melanoma has clearly been on my mind.  SO, I decided to get it off my mind.  And I met an amazing young doctor, who got it all off my mind, and gave me some excellent advice about surviving and protecting my skin during chemo treatments.

All said, it was a long day.  We finally made it back to the car about 4:30, heading back to home at the farm.  I did remember that out payroll was due and called my amazing payroll god Tim and managed to get it done via cell phone so that we can actually have paychecks this month.

We got home and I took a 2 hour nap, then made Bob come outside and do farm chores with me in the gathering dark.  We had to walk the chicken fence and get it fixed: Neighbor Carl had interrupted a dog attack on the flock at mid-day.  They did kill two hens.  Why they can't kill the extra roosters first is beside me.  We're pretty sure it was the same two dogs responsible for the huge massacre two springs ago.  Bob and I got the grounding wire finally set on the electric netting, and the charger and wires all hooked up, but I think that either my tester is broken or their is a power problem with the charger or continuity on the fence... either way, too much to do in the dark.  But the flock is locked up tonight, and I will leave them locked up if I can't get the fence "on" in the morning.

Meanwhile, we will head back into town tomorrow because I need a post chemo injection to help me deal with the high dose Taxatere I had today.  This will be a drug called Nuelasta, and it is specifically to boost the production of white blood cells back up after the big kill off that happened today.

Honestly guys, I'm tired, feel a little cranky, but don't feel too bad.  We'll see how tomorrow and the next couple days go.  But it's not as bad as the flu or recovery from childbirth, so we'll have to see.  The mental fog is the one thing that I hope will lift with a good night's sleep.

More tomorrow.  We're planning some fun stuff for next week, I'll keep you posted.

Love, and wishing you all deep sleep, Erin