It's about 5:30 in the morning as I sit down to write this, and raining hard.
I've been awake for a couple hours already I think, and have finally given up on the idea of sleeping (for now.) It's kind of a pattern lately, having a hard time staying asleep at night without drugs. Part stress I suppose, but also large part hormonal, as the hot flashes and night sweats do a number on me.
I thought I'd distract myself with a little writing exercise, one I'm calling "Just the Facts." The challenge is to simply write down some of the history of the last few months, going for capturing the facts, and not spending too much time explaining how I felt (or feel), or sidelining on some thoughts. My guess is that you'll get the emotional impact anyway... and those of you who haven't had the face to face with me in awhile will feel a little more caught up on the "what's been going down."
So let's roll on back to July shall we? Wait, let me go get my planner calendar so I can be factual.
Umm, found a cup of tea too. And damn, getting the planner was a brilliant idea, because, good gods, there's a lot I've forgotten already....
My stepmother Sam-Sam arrived the night of July 12th to help us once again for the week (that was her second visit.) July 13th was my last "chemo", which in my mind meant the Taxotere drip. That's the nasty one that caused most of the chemo side effects. The day after on the 14th was the day I went in to get my PET/CT scans done. Those were the ones that came back phenomenally good. That week was also Columbia County's Fair week, and it was awfully and even horribly hot. Sam took the kids to the Fair practically every day it was open Wednesday to Sunday, she kept them hydrated and indulged and hung out with all my friends (it is a small town kind of time!)
Thursday July 16 Bob and I met with the docs. First we got the amazing scan results. We met with the surgeon who would do the ovary removal, and she was AMAZING (Okay, right right, Just the facts!) Then we met with the breast surgeon, who we had consulted with way back when this all started. And things got confusing. Because the original plan was to do a lumpectomy and lymph node removal, and this is what Chui the oncologist still wanted, but the surgeon made it clear that it was really up to me to decide how much surgery I wanted done.
My answer at the time? "Uh, how about none?"
Because here's the deal: unlike other breast cancer cases surgery of the breast and removal of the lymph nodes is to prevent the spread of cancer throughout the body. In my case it had already spread, and we knew that. What was the point of surgery here?
The ovary removal (and it was JUST ovaries folks, all other plumbing remains intact!) is to eliminate as much estrogen and progesterone from my body as possible, because my cancer, (my sweet lovely cancer) feeds on those hormones.
But, what can be learned or what preventative action served now by going in to do breast surgery and remove lymph nodes? I was primarily concerned about the lymph node surgery--really worried about developing lymphedema (google it, I'm not explaining now, just the facts erin, damn this is difficult!)
Bob and I left that appointment with the breast surgeon scratching our heads. Later that afternoon, while at an appointment for Bob, the chemo treatment of Monday caught up with me and I had a near fainting and puking spell. I was dehydrated from the heat, and worn out from the day.
Sam went home the next week, while Bob's sister Lisa came into town. Bob and Lisa took all three kids to the beach while I got some rest and quiet. I also made an appointment with Chui to help figure out the surgery thing. In a brilliant move I asked my friend Diana to come with me to that meeting. Chui made a compelling case for the lymph node removal, and asked that I consider doing a sentinel node biopsy, followed by judicious removal of many but not all of the nodes. And a lumpectomy to remove the previous site of the original tumor, even though the tumor was now totally gone. I agreed. I told you, he was compelling, gave me the rationale and explanations I needed to agree. Surgery was scheduled for Aug 4th.
July 25th was Relay for Life here in Columbia County. The Sock Monkey team made me their goddess for the event, and the amazing Gene built a... palanquin (google that one too!) which they carried me around the track on, twice!! There was also a family reunion of sorts in Portland, where I got to reconnect with some aunts and uncles I never get to see anymore (you know who you are!)
The next week the planner reports that I took Emme and Luke in for their pediatrician annuals, went to Bunco, and that Lisa went home. Also, my grandfather, Clarence Odell, died that week. The funeral is set for Aug 5th in Sacramento: I will be the only first cousin of 21 who doesn't make it, but they send me the funniest video ever to make up for it.
Sam flies back to help us out again. August 3, I had a Herceptin infusion, or chemo without the chemo nastiness. Aug 4th, early, Bob and I go in to Portland for the surgery. Wow, what a day that was. Actually, I had a blast, really. I've never felt so popular, the amount of attention I got and the amount of people I had in attendance. Right, just the facts....
Okay, then I'll skip over most of surgery and say that it was it's own long story, with some comedic side trips, but it all went well. No drains put into my armpit so even the lymph node removal was relatively straight forward in terms of recovery.
The important facts are really not about recovery so much as pathology. None of the lymph nodes removed showed any traces of cancer. This breast tissue removed from around the site where the tumor had been came back with a light scatter shot of MICROSCOPIC cancer remaining. No clumps or clusters, just a random scattering of tiny cells.
If you ask here "What about that clear PET scan results??" the answer is that PET scans are only accurate for seeing cancer down to a size of 1cm, so microscopic doesn't show up.
So the lumpectomy gave us good information: the chemo regimen has definitely been working, and the largest mass has dissolved away, but yes, there are likely still microscopic bits of cancer lodged in there in places where it was concentrated in tumors before.
Recovery was relatively fast, though annoying as you can imagine. My mood plummets as my hot flashes increase in intensity and duration. Sam leaves, I have my followup appointments with my surgeons, my sister comes to visit with my nephew Thomas. I start getting the kids out and about on my own: to dentist appointments, birthday parties, haircuts and soccer practices. This is a big deal, our first year of doing soccer, and both boys are on teams. I learn to keep water bottles and a folding soccer-mom chair in the back of the minivan. I buy cleats and shin guards and the right size soccer balls.
The travel-trailers that have housed our "guest workers" and visitors over the last 6 months go away over the labor day weekend and then don't come back. We are figuring out the new normal. Bob and I leave the kids with grandma two weekends in a row and have overnights away from the farm by ourselves. We go to a friend's wedding where we don't know anyone, and I finally have enough hair that I "pass" and we have a great time not talking about cancer the whole evening.
September 9th we take Emme in for day surgery to remove her adenoids. This will solve her two year battle with constant snot and sinus infections. She is great, the pediatric surgery team is amazing and patient and considerate of her. Bob and I wait together in the waiting room during surgery. It is the same day Obama makes his big speech about health care. Bob gets an email while we are waiting telling us that the health insurance premiums for our business will be going up 24% in the next year. I am pretty sure that will finally make them more expensive than our mortgage, they are definitely the biggest single bit of overhead for our business. The surgeon comes out to tell us that surgery went fine, Emme's going into the recovery room, but by the way, there was a polyp in her nasal passage that is fairly unusual in children, so he's sent it off to pathology.
Bob and I decide to tell virtually no one about this polyp. It takes over a week for pathology to come back and tell us all that it is merely more adenoid tissue and not something scary like... cancer. Emme recovers from surgery in a matter of days, and now breathes easier and no longer snores in her sleep.
School starts for the boys. I have a Herceptin infusion their first day of school, and also have a first meeting with a psychologist I have decided to start seeing to help me work through the emotional space of dealing with this cancer. I am not there to pick up Jack after his first day at Kindergarten, but Bob is there, and this is the new normal, where mommy has to take care of herself first.
I am not the PTA (YAAPO!!) President this year, so I sit in the back of the room for the first time during a YAAPO meeting. Bob and I celebrate our 10 year wedding anniversary on the 18th by visiting a friend's restaurant in Portland for a sublime meal. We do Race for the Cure on the 20th of September, and a mix of friends from all aspects of life show up in yellow shirts with sunflowers on hats and in hand. My grandmother graciously hosts a lunch gathering afterward so we can gather away from the 30,000 other people at the walk, and actually make conversation.
By the end of September we take our last dinner delivery from the BRAS food committee, and as the planner turns to October we settle our family into a new rhythm. Jack settles into school, quits fighting the transition in the morning, and is able to narrate his time in class with a thoroughness of recall that is honestly surprising. Luke has slid back into the school routine with a happy grace and steady easiness, like the tumult of our summer never happened. After a rougher start adjusting back into preschool Emme now plans for her afternoons there, ready to go right after the boys head out the door in the morning.
Meanwhile, I have continued to go weekly to meet with my psychologist. Talking through the story of this journey, explaining to a stranger about who I think I am, how I have been dealing with the cancer, how it has affected my family, my relationships, my feelings about my life. Some surprising things have come out of these sessions so far, and in a great way they are serving my purpose for starting therapy. I needed a pro, an expert to help me figure out the tangle of physical and mental, someone objective who knows what good coping is, what depression is, what is healthy and unhealthy emotionally, socially, and... familial-ly in surviving this disease. I need a pro to get to know me NOW, know what my story is so that later on if I really, really, really need it I have someone I already trust to give it to me straight as I figure out how to continue best be myself, be Erin, despite and because of cancer.
Two weeks ago before my last Herceptin drip I met with Chui and asked him to consider a dosage increase in the anti-depressant I'd been taking at super low-dose since last May. I'd been on a 75mg dose of Effexor, in order to help deal with the worst of the menopausal side effects. And it had definitely helped take the edge off the hot flashes and mood swings. I'd been told that "therapeutic levels" for depression started at 150mg, so I started to wonder if my tendency to feel foggy, unmotivated, in hiding, and ... just not myself might all be helped by a boost of the drug. It took something said at a therapy session to get over my reluctance to increase the drug, to think of it as medicine. That and finding out from another young breast mets survivor that an increase in dosage would get me into a time release form of the drug which would probably even out some of my side effects and give me better "coverage" in only one daily dose.
Chui agreed with the dose increase, and I'm now up to 150mg daily. And yes, I feel so much more like Erin again. Feel like the cloud has lifted quite a bit, and that even on days when I am sad or troubled by some aspect of dealing with the new normal, I at least don't take it so... personally, permanently. I know it's just a sadness, not a forever identity. Wait...we've gotten off the "just the facts" train again, we can talk about what low level depression feels like some other time!
The most important thing factually to come out of my meeting with Chui two weeks ago was that we together reached some decisions about the next steps in my treatment. Because yes, there are next steps.
Last week I added a new drug to my repertoire, it's Femara, from the category of drugs called Aromitase Inhibitors. It will further block estrogen in my body, and probably send me back into cranky land a bit.
I will continue with my Herceptin schedule, doing three more sessions, until Dec 7th. On December 7th I'll have my last Herceptin, stop taking Femara, and start in on a new chemotherapy regimen. It's another two drug combination, and I'll tell you more about it in the weeks to come. The drugs will be oral pills, and the side effects while very toxic will be very different than what I've done already. The key thing for you to understand is that one of the drugs will again target the Her2+ cancer cells, like Herceptin has done, but this new drug, Tykerb, is what they call a small molecule drug. It is small enough to penetrate the blood-brain barrier. It has the potential to get in and zap any of those nomadic microscopic cancer cells that we know had already set up permanent camps in my lungs and liver and lymph nodes.
We're going to try and protect my precious noggin, protect the part of me that sees and thinks and loves and writes.
In my mind (!!) that makes it worth six months of discomfort. I'm good with it, and I think the facts ('mam,) support it.
It's 7am now, and I can hear Emme and Bob in the kitchen. I'll get the day started, the kids off to school and maybe later today I can edit this and post it. Happy Monday.
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