Chemoland, part 2

2/16/16

I am half way done with my second round of Chemo (6 out of 12). This drug Taxol has been easier on me than the AC (Adrimiacyn and Cytoxan) as it is administered in smaller doses more frequently. The side effects are cumulative though, and 6 weekly treatments have given me neuropathy and fatigue that will likely increase. Monday is Chemo day in Friday Harbor. It is almost like a date or getaway as Laurel stays home with Auntie and Papa and I have a somewhat relaxing day on another island with the baby. We leave on a 10:30 boat after grabbing sandwiches at the Orcas store and have a 45 minute ferry ride and a 5 minute drive to a nice, new rural hospital where everyone knows us and argues over who gets to hold Daphne. I hang out in the most comfortable recliner for 3-4 hours during my treatment routine. My chest port is numbed and accessed. A needle attached to tubing is inserted into a catheter under my skin that is connected directly into a vein. I have some blood work done and then the pre-meds are ordered. A steroid and antihistamine that get me all woozy. Actually, they reduced me to the “kitty” dose but it still messes me up. My line gets flushed with saline in between all these steps and I can taste it in my throat. It takes a bit for the Taxol to be brought down from the pharmacist and my identity is double checked. I have repeated my name and birthdate countless times since I began treatment. Once it is started it takes about an hour to be pumped in. I often pass out for part or all of this time. When we finish we have a bit of time to spend around Friday Harbor while we wait for the boat. Sometimes we visit the thrift store, sometimes the grocery, sometimes a restaurant. The baby usually sleeps a good part of the day and we get home before 7. A long day, but an easy day relative to the journey we were doing back and forth to Seattle Cancer Care Alliance. Our new oncologist Jennie Crews is based out of Bellingham and is experienced and kind. We have begun discussing hormone therapy that involves daily pills and monthly shots to suppress my ovaries and making plans for surgery at the end of April. My bad breast seems to have improved since beginning treatment, but it is hard to know anything for sure as my breasts and hormones have gone through so many changes in transitioning to “normal” postpartum. I will have an MRI done in preparation for surgery and we will know that status of the cancer then. In the meantime, I am about as hairy as most newborn babies. I think I have hit my hair loss low and while I am quite used to this side effect by now, it still feels strange and I know it makes it hard for others not to think about me as a sick person. I guess I don’t feel so much like a sick person as this all has just become my normal. The last 5 months have gone by in a blink and passed in slow motion at the same time. I don’t sleep very much the night after chemo. I usually end up binge-watching some shows and thinking about doing dishes or laundry, and/or looking at photos and watches videos of my sleeping children. So that’s where I’m at. I would love to hear about how life is going for you.

3/15/16

Our oncologist wasn’t on site for my last treatment (infusion # 10) but the other oncologist went over the MRI results with us and said they were expected and positive. He didn’t go into a lot of detail, but said even though I can still feel a large mass that doesn’t mean the chemo isn’t working. The mass and breast in general is much less dense and dimply. Dr. Crews had previously used the analogy of Swiss cheese as the cancer cells are broken up/die off within the tumor but expand as they do so. Or something like that. We also talked about the soreness I have been feeling again in my breast regularly and there isn’t much to do about it and it does not correlate to the cancer getting worse, as I can’t help thinking. We are on track with finishing 2 more weekly rounds of chemo and consulting with surgeons in mid-April, anticipating surgery in Bellingham or Seattle at the beginning of May. In the meantime, I am feeling more fatigued and grumpy/crappy and the numbness in my fingers and toes is now accompanied by serious soreness in the tips of my fingers. My nail beds have become discolored and my nails are becoming deformed and may fall off. This has been difficult and causes regular frustration as obviously I use my hands all the time and this makes it a challenge to actually do things, especially without discomfort. My appetite has returned with lots of unhealthy cravings for sugary and salty treats and I have begun gaining weight, so I am just sticking with maternity clothes and my newly designated uniform of tunics and stretch pants. I am sleeping better in general, but am usually restless the night after treatment and feeling crappiest the next day. The pre-meds (Benadryl and a steroid) seem to take their toll more than the chemo, but who really knows.

The paradox of chemotherapy has been on my mind lately. Bad medicine. Medicine that is toxic and makes you feel sick. Medicine that makes all of your hair fall out. It just doesn’t make sense. I haven’t really had a hard time with this until recently, despite the fact that my hair is now growing back. The process and experience of getting treatment has become surprisingly smooth and easy and almost pleasant. It has become a routine. My normal. I haven’t really been bothered by the hair thing beyond having to rely on hats to regulate my temperature. But as the other side effects have become worse with time, it is hard to overlook what medicine is being pumped into my body for hours on end every week. It is not good for me and then they say it is, supposedly. But I can’t see and feel the positive effects from day to day, or even from November until now. I just know from day to day I am tired and often grumpy and sometimes just feel like total crap. As much as I have great support and am taking it easy, I also crave the sense of accomplishment that comes with doing my part to take care of the little people and the house. Some mornings I wake up and all I want to do is some dishes and laundry. I just wanna sit down and feed the baby and read stories and snuggle with Laurel. I wanna take walks and run errands and change diapers. I wanna talk about baby poop over coffee with my husband. I wanna just live my life. I don’t wanna know my weight and temperature and blood pressure and blood counts this week. I don’t wanna put that annoying numbing cream on my port site on the ferry over and keep it from rubbing off while holding a baby. I don’t wanna commit an entire day to traveling to the hospital for treatment. I don’t wanna be poked in the chest by a needle and be attached to a pole full of pumps and meters and drugs for 3 hours. As nice of a place as it is and as pleasant as the nurses are, I cannot overlook the reason we are there anymore. And as much as everyone is glad to see baby Daphne, it is an ordeal to be gone all day with her and the breastmilk/bottle situation. And as much as Auntie Jess and Laurel have settled into their own special groove, it is a bit sad to be away from our older girl all these Monday’s.

Despite all this, there is a bit of sadness that also comes with the anticipation of this phase of treatment coming to an end. With my hair growing back. With the end of our weekly trips to Friday Harbor. With the routine that has become our normal. As much as many say chemo is the worst, trying to plan and prepare for surgery and radiation is much more daunting. We have to travel to the mainland for these things and that is automatically harder. Major surgery seems much more daunting. 6 weeks of Monday-Friday radiation treatments seem really daunting. Then again, I am ready for them to cut this nasty stuff out of me. Truly. And maybe it will be fun to fly off every day for a short and sweet radiation treatment or just live in Bellingham for a month and a half. Sorting out the logistics is a challenge but we will figure it out. Life on Orcas is mostly sweet, but cancer treatment beats out childbirth as one of the trickiest things to deal with while living here.

Speaking of childbirth, Daphne is almost four months old now and goes with flow pretty well. She is interactive and talkative and smiley and wiggly. She is a good sleeper at night, better than Laurel these days. Laurel is a silly, smart, articulate, sassy sweet and snuggly small person. She loves her baby sister still but is even more attached to her papa. These days she will not go to sleep without him and won’t even let me console her when she is upset. This makes me a little sad, but is probably for the best right now as I don’t have the patience and energy to give her these days. It is all Papa. He has also been doing night duty with the baby almost every night since the first month. Papa is the best, basically, and we are so blessed that his employers have given him extended leave at reduced pay since my treatment began. Truly, I can’t imagine having to go through all this without him by my side. He has literally been there by my side through it all. Every appointment. (Almost) every treatment. And is taking care of our girls when he is not helping take care of me. Auntie Jess helps out with both kiddos a bunch and we are so excited to have Baba coming back tomorrow after 6 weeks away. I have not been keeping house to her standards, that’s for sure.

Last bit of news is that we are taking a celebratory Birthday/Post-chemo trip to Zion Mountain Ranch in Utah from 3/30-4/7. It is super exciting but also anxiety-inducing. Traveling with two small children, one of which requires refrigerated/Frozen breastmilk is quite an ordeal under normal circumstances. And then I am not anywhere near my best. But I know it will be worth it and it will be so good to get away into a whole new scene for FUN! Jess will be joining us and Liz and Steph will be meeting us there.

3/23/16

I m lucky to change my clothes every few days and get a shower once a week! The chemo fog mixed with little ones is a lot to take sometimes, although often I feel my kids are the real therapy keeping me focused on each moment and letting go of the rest. These days, it changes from hour to hour and day to day. I struggle with making plans and follow through. I have immediate support and can sleep and take space when I need it, but I haven’t talked much with anyone about the really hard stuff, in fact I have kept pretty distracted and distanced from it most of the time. It is a hard thing to have a casual conversation about, so that has been my strategy. And my schedule is all over the place, just like my mind, so writing is much easier than the phone in that regard. I do most of the documenting in our family and am technologically challenged. I have been writing monthly email updates as a way to journal and share with people near and far. But it is a lot of complaining/venting and I am a grumpster half the time at this point. But you got to let all that out, right? Move through it. And be grateful for all the good.

The little people I made, they are amazing, aren’t they? Funny, ridiculous, intense, beautiful creatures. I still can’t believe they are mine. Having a baby in the midst of this is a blessing and curse. I am certainly not the best mother right now. There are days I find myself not able to remember when I held one of my children last. But I am doing my best, and sometimes the better thing is for me to be alone and rest, instead of losing my patience with them.

Chemo is just the first stage for me. I have consultations with surgeons scheduled the middle of next month. I am preparing to lose my breasts. Radiation after that, then…? Our daughter Laurel is 2 1/2 now. And Daphne is 4 months old. Both are wrapped around their papa’s fingers. I turn 36 just after I finish chemo next week. Next Monday we go to the hospital/hotel in Friday Harbor one last time. It has been a breeze compared to the back and forth to SCCA in Seattle before and right after baby was born. We have transferred care several times and the logistics going to and from Orcas make things difficult.

I had chemo today and I usually don’t sleep the night after. And I actually took a nap today. And my house is quiet. My mom just came back to live with us after 6 weeks away. And the baby and I are just getting over a cold. But my hair is growing back, so there’s that.