Real Summer

Every few years the Pacific Northwest delivers a real summer, and it has been a fantastic one. We did some traveling to see family in June and July. Now it is August and family and friends are coming to see us. In between, lots of wading pool splashing for Isaac and swimming in Lake Washington and Greenlake.

We took Isaac on his first camping trip at Fort Flagler on the east side of the peninsula and he loved it. By the end of the weekend he was covered head to toe in dirt, sand, pine needles, and baby food. He is not quite walking and not quite talking but it is exciting to see him get closer every day to both of those milestones. If you could take a toddler’s energy and bottle it, we would all get so much done. As it is, I spend my days keeping Isaac from hurting himself and reassembling the house in his wake.  The beach is one of the few places where he can tear around and mostly stay out of trouble.

I’ve also been working for an environmental consulting company analyzing artifacts several hours each week. It feels good to get back into my career, even if it’s a much smaller part of my life than I’d envisioned. Despite weekly chemo treatments, I’ve been feeling pretty good much of the time. Ran all the way around Greenlake for the first time in a long long time! The best strategy seems to be to ignore what symptoms I can, ignore unsolicited advice, sleep as much as possible, and avoid germy people. Isaac’s strategy is to ignore my protests if I seem tired and to play with me as much as possible. Matt is doing well--working hard, keeping up his running.

 I don’t really have a medical update. We just don’t know if the chemo is working and there isn’t a way to tell unless cancer shows up in the next set of scans (and we’ll know it didn’t work, which of course we all hope never happens, but that’s the reality). Radiation is still up ahead but I don’t yet know the details. These next few weeks feel difficult because we are reliving the stress of my diagnosis just a few days before Isaac was born.  Of course I’m excited that he is turning one, but the days leading up to his birth and the days afterwards when we were assessing the degree to which the cancer had spread were terrible. a year hasn’t dulled the memory much, perhaps because my prognosis is still uncertain and Matt is dealing with health challenges. And we’re tired of doctors and worrying and navigating. Isaac is probably up to the challenge of making us laugh right through the weekend anyway. 

Boston!

It was over eighty degrees in Seattle last week, and Isaac got his first dip in the kiddie pool. I thought he might be intimidated but he just threw his little body over the inflatable plastic wall and splashed around like a little duck. 

He is growing so fast and trying hard to crawl. He’s got the legs part figured out, but not the arms so he ends up in a downward dog yoga pose and then slams down onto his belly. Sleeping has become more of a challenge as he becomes more aware that if he yells at night he gets a nice snuggle with mom. This week we’re giving Ferber a serious shot. If you are passing by the house, don’t be alarmed if you can hear Isaac baby-swearing at us from his crib. 

We’ve been busy lately with some fun trips, one to Virginia for Isaac’s Great-Granddad’s 90^th birthday, and another to Boston to watch Matt run the marathon. Matt running and Isaac and me cheering in Boston was a victory for the whole family. Maybe partly this year’s race just felt like light over darkness or pick your cheesy metaphor, but also we have been surviving more adventures in modern medicine. Over the past several months, Matt had been enjoying training for the race, a bright spot during a difficult winter. He has an amazingly athletic and supportive group of friends who he runs with. With whom he runs. Whatever. While we were still reeling from the news that I would need a lot more treatment after surgery, he began feeling exhausted and having some weird symptoms. I said, “It’s probably just stress.” He began to look like an emaciated bubonic plague victim. As it turns out, he has Type 1 diabetes. Yes, really. I’ll fast forward through the FAQ (Adults can get this, it is an autoimmune thing, not the kind that is linked to diet and weight, can still eat sugar and drink alcohol, can still run,  getting over his needle phobia with amazing speed)—watching Matt run Boston was so exciting and uplifting. He felt great and had awesome day. Isaac also got to hang out with his east coast people—grandparents, friends, and relatives—and see the sights of Boston. 

I’ve been hanging in there with my new drug protocol—Navalbine, Methotrexate, and Xeloda. Xeloda! That one sounds fun—like a hipster cocktail. Often I feel pretty good, usually tired, sometimes I feel really terrible. Intense fatigue is no joke, but Isaac doesn’t care and it helps in some ways to be forced to get out of bed, warm a bottle, and take care of a tiny human. My bone marrow is unhappy with being put through more drugs and my white blood cell counts are not rebounding well lately so we’re still being super careful about germs. The more months of treatment I can get my body to handle, the better the chance that it will work to prevent my cancer from recurring. On the other hand, sometimes it is nice to have a week off and feel more like myself for a bit. And my hair is growing back! It is too thin, fine, straight, and quite gray but I’ll take it—just in time to ditch the scarves and hats for the warm weather. Over the weekend I planted strawberries and lilacs in the pouring rain.

First Bananas

2/19/14

Isaac will try his first banana tonight. It is the sweetest thing he has tasted since the sugar water and Manischewitz at his bris and it is going to blow his mind. The first time he tries foods he makes a face like we are feeding him a pureed rotting whale carcass, but a few days in, he cries between spoonfulls because we are not transporting it from bowl to mouth fast enough. Then he gags and coughs and cries harder. We switch to the bottle of formula and wipe the snot, tears, food, and spit up off everyone.

I am recovering from surgery just fine and it went relatively smoothly. There was a big discussion beforehand about whether I needed to take a pregnancy test despite completely shut down ovaries from the chemo but ultimately, they made me pee in a cup. Then a nurse accidentally gave me three Aspirin instead of Tylenol so the surgeon had to use some kind of spray to stop the bleeding during the procedure. Apparently, that worked. It is incredibly difficult not to be able to lift Isaac but the pain is manageable. My range of motion is terrible. It may take a long time to get back to the medium lane at the Meadowbrook community pool. Three drains still in. They need to be stripped and squeezed out every few hours, a kind of a watery pinkish liquid with chunks of goo. Matt faints like the goat in the face of certain medical procedures (try talking with him about kidney transplants, the genetics of blood types, blood donation, stitches, epidurals and see what happens but please use a helmet) so I have been in charge of the draining and measuring, and he is making a mean Excel figure to chart my progress.

Regarding the cancer, the news from pathology was not good. I did not have a complete response to the chemotherapy. There were still cancer cells in my breast and two lymph nodes despite the five months of chemo and nice looking MRIs. Perfect, my tumor had a cloaking device. This means that there is likely cancer left in my blood and it is more likely than not to metastasize. No amount of positive thinking and pink ribbons and strength of character can change that reality. My oncologist recommends that along with radiation we try 4-6 more months of chemo and maybe some experimental drugs and treatments to try to stop this from coming back as a terminal cancer. It is hard to say how well that will work because sample sizes for my age group/cancer type/drug regime etc. are pretty small. Some research suggests that this will just not work and if the cancer is going to win, it will win, more drugs or no. Other research suggests more chemo could make a difference. So on we go. There won't be a way to tell if the next set of treatments worked other than that I'll continue to be alive in three or five or ten years, or I won't. Of course Matt and I are sad and sort of angry at the universe. We miss planning our whole lives together. Waking up for surgery, I hoped for a whole evening that I would get my old life back sometime soon. But we're getting better at planning whole weekends together and there's a new life to figure out. We continue to be in awe of the incredible love and support of our family and friends. Flowers! Pies! Good tv series! Meals! Housecleaning gift certificates!  Isaac says to tell you that he doesn't like that last item because his greatest joy is to feast on dust bunnies and foreign objects from the floor.  

Woah, it is January.

January 17, 2014

Hey. Thought I’d check in and give some updates while Isaac grabs a nap. As he gets more fun and interactive (and mobile) it gets more and more difficult to steal time to do paperwork, work, clean, do laundry, and do anything that involves a screen. He loves screens. His entire generation will be emotionally if not physically attached to the internet so on the one hand, it seems like a losing battle. On the other hand, researchers are just beginning to look into the effects of screen time on infant brain development so we’re trying to keep it in check. And if this kid doesn’t stop taking 1-2 hours to go to sleep at night, I think we’ll probably never watch television again. We had a fantastic trip to New York over Matt’s holiday break and Isaac got to meet his Bubbe (Great Grandma!) and many other adoring relatives. He was mostly good with travel until the very end of the trip when he tried to stink out the entire back of the plane, not realizing that everyone was trapped together in a big tin can with the fasten seatbelt signs turned on.

 

Update on me—the tumors are responding well to the abraxane at least macroscopically (as seen on an MRI). My body is holding up pretty well other than some minor symptoms like fatigue, body aches, and falling out fingernails. It’s awesome to have fewer issues with my digestive system and I even get a run or a swim in now and again. My white blood cell counts (immune system) were holding up for a while, but they seem to be dropping again so we’ll be more cautious about going out for the next few weeks. Just as well, I’m looking pretty bizarre at this point.

So what’s next: a few more treatments to go on the abraxane, then some recovery weeks to build back up before surgery. And stop reading here if you’d prefer not to know the details. Surgery will consist of a double mastectomy as well as the removal of my right axial lymph nodes. Pathology will analyze the removed tissue to see how much cancer is left. If the chemo has not completely eradicated the cancer (this is known as a complete pathological response), my overall prognosis is not super, statistically speaking, due to the type of breast cancer that I have (“triple negative”), its aggressiveness, and the number of lymph nodes that have already been invaded. My oncologist assures me that anecdotally, that’s not necessarily the ball game, although it would mean more treatment to do whatever we can to prevent the cancer from metastasizing (recurring as a Stage IV terminal cancer). Either way, I’ll be getting a bunch of radiation in the months after surgery.  Psychologically, my fear of recurrence is much more difficult to deal with than losing a part of my body that I’m pretty pissed off at. I’m actually looking forward to getting that over with despite…not looking forward to dealing with pain, diminished strength and range of motion, and being disfigured. Due to the amount of radiation I will be getting and my distribution of body fat, breast reconstruction options are not quick or straightforward but eventually (in the next year or two), that will get sorted out and I will spare you the details. As someone who has never contemplated cosmetic surgery, that whole issue is fascinating. Logistically, I won’t be able to lift my kiddo and take care of too much around the house for about a month after surgery. That is frustrating. I’ve been so grateful that I could take care of Isaac mostly on my own this fall, but we have family coming into town to help out and Matt is taking some time off from work. I’m not sure if I’ll feel like reaching out or hibernating and catching up on whatever it is you can catch up on without the full use of your arms, but I’ll do my best to get an update out. I hope things are going well out there in everyone’s lives and I’ll be thinking about you even if I’m not in touch.