Chemoland, part 1

Chemotherapy and baby sister, the beginning of treatment

My hair started falling out in clumps just over 2 weeks after my first chemo infusion. These photos were taken just before it became noticeable and the first of many transitional haircuts.

11/6/15, Countdown to baby!

It has been almost two weeks since my first round of chemo and I am feeling surprisingly well. The side effects have been minimal and/or difficult to separate from just being super pregnant. I am definitely much more fatigued, but haven’t needed to take any of my nausea meds. I have gotten used to the Picc line (except for the showering/not getting it wet part) and it is not painful anymore, although now I sometimes forget it is there and that can be bad. I did have a dental issue come up with my wisdom teeth and swelling/soreness in my mouth, but I was evaluated and it has since resolved, at least for now. No oral surgery in the immediate future, thank goodness. We did a trip to Seattle last Wednesday-Friday and did a round of blood work, met with the OB, visited the Center for Birth and met with a midwife, and a naturopath. We are feeling encouraged and confident in our current decision to try for a natural induction and birth at a stand alone birth center (with a giant tub!) near the hospital. We do one more Seattle run this week for prenatal care and blood work and then the doctors say Baby needs to come the week of 11/16. So we head back next Monday and will be staying in Seattle for up to ten days for appointments, labor/delivery and post-partum care. I am hoping to be home for Thanksgiving, but it just depends on exactly when baby comes and how things go. I  will have another round of chemo after baby is born and I have some time to recover, but as of now our focus is almost entirely on preparing for baby time. I am very curious what additional diagnostic testing will show and how my body will respond to all of this once I am not pregnant.

We are getting lots of things done around the house as we countdown to the transition to baby number two on the outside. I have been in serious nesting/organizing mode and am at a place where I am finally letting go of my overly large ball jar and glass bottle collection, among many other treasures that have been shifted around from box to box or closet to closet. This is big for me, and it has been funny having my mom questioning the things i am finally ready to just put in the trash. I am letting go of a lot of stuff that is old, halfway useful and taking up space to make room for more. Which is funny, I know, but the generosity of family and friends and Amazon prime share the blame. I am finally  moving forward with acquiring and purchasing fully functional and more useful things like a dehumidifier, chest freezer, extra bed, house phone, blender, etc…I am embracing the drive to just go for it in any way that could set us up to make it through newborn times during treatment with as much comfort and ease as possible. This means actually purchasing some new baby things and goodies for myself that I normally would spend months researching, debating or searching out second hand or at the thrift store.  And asking for and accepting food, stuff and help from all directions. Laurel has graduated to bunk beds and we set up another small sleeping space in what was a storage space downstairs. Our attic is finally accessible and useable and I have another load of stuff to give away. The cars are both in good running order. Oh, and Matt and I both have working brainy cell phones now, which have proven useful as we navigate to and from and around the big city. I have failed to mention that Matt has been on leave with reduced pay since my diagnosis. What a blessing to have my partner by my side through every moment of this challenging time. We are both trying to actually get him to work for a few days before baby comes. He has exhausted himself as full-time dad, driver, handyman, secretary and husband extraordinaire this last month. And my mom and sister both have been jumping in whenever, wherever, however they can help. We, our critters and our home are being fed and cared for and I am so very thankful.

Trying to prepare for NOT nursing is way more involved than I anticipated, especially with gathering and managing all the necessary gear that was not part of our experience the first time around. Lots of bottles and cooler bags and ice packs. We have some amazing mamas on Orcas organizing a milk bank and are working on getting donated milk while we are in Seattle. And then there is the complication of transporting it back and forth during treatment, which as of now, will be every two weeks for a couple months. We are receiving much appreciated support in this department and I am undeniably sad and anxious about giving birth and having my milk come in and then having to tell myself I can’t nurse my baby. Sigh. As of this moment, I hope to pump enough to maintain some sort of supply so that I can potentially breastfeed after I am done with chemo (3 months down the line) and before surgery and/or radiation.

I hope this update finds you and your family well. I appreciate your updates, photos, videos, links, resources and kind words and thoughts. Keep them coming.

12/10/15, Family of Four!

Baby Daphne is here and Round two of A/C chemo is done! It has been a crazy month. I keep thinking I will get to write out a full message, but there is a newborn and toddler in the house, so this is the best I can do, weeks later.

Daphne is 3 weeks old today (born 11/20/15 at 38 weeks). She is healthy, starting to chunk up and pretty alert for a newborn. She came into the world naturally after 10 minutes of pushing at UW Medical Center in Seattle. It was less than an hour after we transferred from the Center for Birth, where I labored for about 12 hours, after a couple days of “natural” induction techniques. Woo. It is still surreal that it all worked out. Much thanks to my midwife, doula and logistical support team for getting us through labor, delivery and transition to life with a new baby away from home. She is lucky to be living off of donated breastmilk from mamas in our community and we are so grateful. My left/bad breast was not able to express milk and my milk is essentially toxic during chemo, so we are hoping to keep her on donated milk as long as possible. Daphne is downing bottles every 2-3 hours and managing the bottle/frozen milk situation has been a major adjustment, but we have such capable help that it is going well. There was a worrisome period as she didn’t poop her entire second week alive, but thankfully it resolved as we figured out the right amounts to feed her. Mostly more, even though she was drinking what seemed like too much, based on guidelines we were given. It is really hard to know with the bottles and we were told to not overfeed her as it could stretch her stomach out and a breast fed brand newborn is only getting a little bit at a time. I certainly had no idea of the amount of milk Laurel was getting when I was nursing her, so it is a major adjustment to keeping track of ounces.

We stayed in Seattle until Wednesday 11/25 and made it home for Thanksgiving Day. It was a major resettling after a long time away, but good to be home. We went back to SCCA for another round of chemo on 11/30 and the journey with toddler, baba and newborn was quite an exhausting one. We have had a nice long stretch at home and will be returning for treatment Sunday 12/13-Tuesday 12/15. I have one more round of these chemo drugs on 12/28 then begin a 12 weeks/once per week course of a different drug.I began taking Turkey Tail mushroom supplement as recommended by my naturopath and oncologist to help my immune system during chemo and maybe even kill the cancer. We are in the process of transferring care closer to home so we won’t have to make the regular trek to Seattle for much longer.

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The time has flown by since baby came and while my body has adjusted surprisingly well to all that has happened this month, I have been on a major emotional rollercoaster. Losing my hair was a bit traumatic, especially in the cold, but easier to adjust to than I anticipated. I am actually coming to appreciate my nice bald head. When my milk came in it was painful and upsetting, straight through the several day process of suppressing it with ice packs, cabbage leaves, compression and medication. It is undeniably sad in moments the baby roots around my breasts looking for milk I don’t have, but I appreciate that others can help with all the feedings. Fatigue and moodiness are my new normal (thanks and sorry to those living with me), while the nausea has been minimal.

It will continue to be a strange but wonderful holiday season for us as more family will join us and we keep living every day as normally as possible. Laurel loves being a big sister, despite regressing a bit (diapers and pacifiers) and is super sweet with Daphne. She also loves having her Baba, Aunties and Uncle B around. She is sleeping in her bunk bed through most of the night and will spend her first couple days at home without Matt and I when we head to Seattle on Sunday. She did stay with Baba overnight without us for the first time in Seattle for a couple nights when the baby was born. It was a challenge, but she made it through. While she is riding the emotional rollercoaster along with me, she has also adapted very well to all that has happened and changed. I think we all could use a little more social time, in and out of the house, so don’t hesitate to call or stop by. I hope you and yours are warm and well. Keep us posted on your life.

*from 1/9/16

I just finished my fourth and last round of the first set of chemo drugs (A/C) on 12/28. I made the final journey to Seattle with two of my sisters and no one else, which was very strange. This whole thing is strange. Apparently I am doing well as it seems my breast is responding to the treatment and the side effects have been minimal and manageable. I finally had a staging PET scan and a Port put in, which were maybe worse than the chemo, mostly because I had to fast two nights in a row and broke out in a terrible rash. I have my ups and downs of feeling crappy, a lot of it emotional, but taking care of a newborn the second time around while undergoing cancer treatment is easier than I anticipated. And surreal, mostly in the sense that I am doing a lot less. I mean, we have live-in help. Baba has been here since October taking care of so much of our daily stuff around the house, now with baby duty on top of it all. Auntie Jess is still here, too, mostly helping manage the toddler lady and Bruno dog. And we just said farewell to a flock of Aunties and cousins after a long stay this holiday time. I am sleeping through the night sometimes. Anyone who can hold a bottle can feed my baby, and that is a good thing and a hard thing. But Daphne is healthy and growing so fast from a steady stream of donated milk. The bottom line is I am doing so well because of all the support we are receiving. I am resting and taking space almost whenever I need it, and that is such a blessing. I start my second round of chemo on Monday in Friday Harbor. Every Monday for 12 weeks we will make the refreshingly short commute. Many thanks, again and again, for all the gifts, support and good thoughts. Keep me posted on your life and know that I am thinking of you.

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The rash I developed after my Power Port was implanted under my skin on my chest. I had a similar rash on my arm before this, under and around the dressing covering my Picc line.

 

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