Posted on March 18, 2017
Posted on March 18, 20173/18/17 Update
My first chemo treatment on Friday the 13th of January went as well as could be expected. Surprisingly, I had lots of energy for the first couple of days after treatment due to the steroids that get included in my cocktail of drugs! Then the tiredness came and I feel like I was in bed for nearly a week! But being that I was anticipating/dreading/preparing for lots of nausea, I was pleasantly surprised to find that my worst symptom was being very tired. Hey, I'll take it! :) There were some other mild side effects like mild acne around my mouth, dry mouth, dry nose, sores on the corners of my mouth that lingered for a long time. When the inside of my mouth started feeling rough, which seemed to be the beginning of the mouth sores I was warned about, I began a regimen of daily oil pulling (just swishing organic coconut oil around my mouth for 20 minutes) and within a couple of days my mouth was smooth as ever and I never developed any sores - hooray! Coconut oil became the salve for all kinds of things...I would slather it all over my face, shove it up my nose and all over my dry hands before bed. It seemed to do the trick! Not only did I not experience any nausea, but I actually had quite an appetite and my mom would gladly make me my daily breakfast of a huge ketogenic pancake (made with almond flour), eggs and bacon.
I had been told at the first treatment that I could expect to lose my hair within 2 weeks. I had a haircut scheduled for Tuesday, 1/24, but opted out because the weather was so cold (for SoCal, that is!) and I hadn't lost any hair yet. What d'ya know, the very next morning, my hair started coming out by the handfuls! My amazing friend and beautician once again lovingly gave of her time and talents to give me a funky cut as I began the transition to bald, once again. However, that haircut didn't last long as the hair that remained continue to come out like crazy. Many of you saw the video I posted on Facebook of my girls helping me to cut off the remaining hair and then I shaved the rest. Later that day I was able to go to the American Cancer Society (ACS) and select a cute wig for free! After just a couple weeks of wearing it, I had a wig mishap! I was taking pizza out of the oven for the girls and the next time I checked myself in the mirror, something did not look right! The front pieces of the wig had gotten singed by the heat from the oven; my heart sank!! I was able to pin it in such a way that it was not super obvious and wore it that way for weeks, but the ACS graciously allowed me to come back and select a new wig. It turned out that the one that worked best was the exact same cut as my first wig, but they only had it in red tones. After consulting with my brother, I decided to go for it and have been living as a red head for the last couple of weeks - it's been fun! :)
As for alternative, supportive protocols, I began receiving weekly Vitamin C infusions as well as injecting Mistletoe into my stomach subcutaneously. At first Paul was giving me the injections (3 times/week) but one night I forgot about the shot until he was already sleeping and managed to do it myself - this was a huge breakthrough for me! Since then I have continued giving myself the shots. There is lots of research out there on using Mistletoe alongside traditional chemo treatment with more effective results and Johns Hopkins has begun clinical trials using mistletoe! People report that the chemo's effectiveness is increased and the side effects are decreased - a win/win!! In addition, fasting for a couple of days prior to treatment as well as the day of is also reported to decrease symptoms. I've been doing this and I must say my symptoms are minimal, so something is working!
My second treatment went as planned on 2/3/17. I was slated to receive a shot of Neulastin, which boosts white blood cell (WBC) production in bone marrow, but when I inquired about my WBC count, it was actually very high, so I did not receive the Neulastin. Post-treatment, I had a similar experience as the first time with a couple of days of high energy (picture me cleaning the grout out of my kitchen tiles!) and then I crashed for several days (picture me in bed alternating between sleeping and binge watching episodes of The Good Wife ;)). I didn't stay in bed for as many days this time around and began waking up earlier in the mornings and having more sustained energy throughout the day. So I was very surprised to find out the day before my scheduled chemo on 2/24 (#3 = halfway done!) that my WBC counts were precariously low and my treatment was being postponed by 3 weeks in order to protect me from infection with such a diminished immune system. So weird how our bodies work! I did go in on 2/24 and received a couple of drugs (Herceptin and Perjeta for those in the know :)) as well as the Neulasta shot to boost those WBC's!
In spite of the postponed chemo (specifically the Taxotere and Carboplatin), my tumor continued to respond positively to all the various treatments I was receiving. Here are the tumor stats:
1/5/17: 11 cm x 12 cm with palpable lymph node in my armpit (Honestly, it had taken over my entire breast and was nearly hard as a rock!)
2/1/17: 8 cm x 9 cm with flatter lymph node
2/15/16: 7 cm x 8 cm; lymph node not palpable!
3/15/16: Softened and mostly diffused. "Hardness" is just a few centimeters.
My third chemo treatment was yesterday, 3/17/17, and all went well. I have a cool little "on boarding" device attached to my arm that will deliver the Neulasta shot to me 26 hours after it was attached. I woke up to go the bathroom early this morning (4 a.m.) and couldn't figure out why there was a flashing light in our bedroom. After blurting out, "What is that flashing light?" Paul responded, "It's that thing on your arm!" Thanks to the steroids and the flashing light, I was up for the day soon after that. I should get another high energy day tomorrow as well and then will begin my hibernation for a few days. ;). My lovely mother-in-love is coming to take care of us this time around, so we are looking forward to having her, especially since it's been awhile since she has been able to visit.
I have an appointment scheduled with the surgeon at the end of March and the oncologist says that I should be able to schedule a surgery date, which will likely be toward the end of June; my last chemo treatment is scheduled for 5/24 - my mom's birthday! 4-5 weeks after surgery I will undergo radiation and anticipate being done with all of that by mid-August. Paul and I will be celebrating our 15th anniversary on 8/10/17 so we are in the midst of planning a trip to celebrate - our last big vacation was nearly 10 years ago when we went to Thailand! We will likely wait until October or so to give me time to heal.
I am so looking forward to getting to the finish line of this treatment plan, but I must say that this time around I am really leaning into the this time differently and trying to glean as much out of it as possible. I am certainly more gentle with myself and am able to devote much more time to being with people and verbally processing. The therapy that Paul and I are doing together and apart is so necessary and life-giving. The love that we receive from meals delivered, children picked up from school and shuttled to sports events, free childcare for date nights and play dates scheduled so that I can get to appointments are such a tangible gift of God's love through people. Life is so not easy in many ways, but I feel so much more connected to it all than I ever have and I know that is a gift that will serve me for the rest of my life - which I expect to be long! Regardless of how long I live, I really want to suck the marrow out of each day and be kind and loving and generous and forgiving and curious about myself and each person I come in contact with. I am learning so much and am really so thankful for the gift that cancer has become. I have met some of the most unconditionally supportive and loving people and they are those who have suffered much and in response are so full of love and life. The biggest gift has been getting in touch with my humanity...it sounds so small but has been so huge for me.
Thank you for all who continue to pray and inquire and give in all of the different ways that you do to me and my family. We are feeling the embrace!
Posted on May 27, 2016
Posted on May 27, 2016Health Update - 5/27/16
Wow - it's been nearly 4 months since my last update! Overall, it has seemed like there isn't much to report - "no news is good news" - but I have run into a few people recently who have mentioned the lack of an update and that they had been wondering how we were doing. I think it is easy for me to forget just how many people have been involved on this journey and that you are all so invested. It is a gift, but overwhelming to think about at times. So, highlights since early February:
- Four of my friends joined me on a really quick trip to Phoenix on Valentine's Day/President's Day. It was a fun, whirlwind trip, but I did end up getting a cold soon afterward that had me down for at least a week. It was obviously not fun, but what was worse was the downward emotional spiral it started me on. I think being back in bed and relying on Paul and my mom to take care of everything was so reminiscent of the summer and everything that it brought up (shock, loss, sickness, helplessness, nausea, stress, etc.). Honestly, it took me to a really dark place. It was sad and scary, plus I was sick. Then I would find myself going on rampages around the house trying to clean things up, yelling at my kids about what a wreck it looked like, and feeling so out of control. It was horrible! It was a reminder of my frailty, my neediness, my reliance on other people, my need to take extra good care of myself. Reminders that I typically tried to ignore. But now there is no ignoring them. I am learning to notice and lean into these things now, to see what can be gleaned from all of it. What I've found is that most of what I've learned thus far is an ability to relate with other people. Which person is more relatable, someone who has it all together, or someone who doesn't? I think we all know the answer, but for some reason I think my need to have it all together trumped my need to be relatable. But I am realizing (I knew it in my head before, but I mean realizing by experience now) that the main thing in this life is the willingness to be with people, especially in their pain, in their loss, in their confusion. And my own honesty about my pain my loss, my confusion is an open invitation to others. Just learning that is a huge gift to me in this process.
- Another bummer about getting sick when I did was that I had been gearing up to run a 10k in early March and I basically lost the last 3 weeks of training. However, I had paid for the race and I felt decent, so I ran it! Making it happen was a community event, though: Paul worked the night before and Ellie had to be at her softball game at 8 am, so my neighbor took the 3 girls in the morning, another friend took Ellie to her game, and another friend (Christi - from my December trip to Phoenix) drove me to the race so that I wouldn't have to worry about parking. Christi also ran the last 1/2 mile of the race in with me and was so encouraging, even though I almost puked trying to keep up with her! :) Unfortunately I made a rookie mistake (by not re-hydrating properly) and after the race just showered and went about my normal business (picked up the little ones from the neighbor, went to Ellie's softball game, etc.). By late afternoon I had a terrible headache and nausea and because Paul was working again that night, he sent an emergency text out to some friends and the next thing I knew my friend Marcy was at my house putting the girls to bed. Honestly, I am so blessed! And thankfully, I was fine after a few cups of water with electrolyte powder (thank you Debbie and Arbonne!) and some ibuprofen.
- The next few months were less eventful, filled with softball games for Ellie and just the usual "fullness" of school activities for the girls, homework, meals, church, etc. I did go to EuroMed in Phoenix in mid-March, mid-April, and mid-May, just for one day each time. Each of those times I went alone and they were great opportunities to get some "me" time. I typically make phone calls, listen to podcasts (I binge-listened to all 35 episodes of the The Liturgists Podcast in less than a week!), enjoy the scenery, and just get a "break" from normal life. Unfortunately, the other side of the break usually includes some nausea and fatigue, but even that is becoming less each time. One thing I was able to start noticing after my trips to Phoenix was that in addition to the nausea and fatigue, there was also a very heightened sense of anxiety. The most obvious way it manifested itself was that I would come home and feel the need to clean, purge, organize, etc., but with less energy it would take longer to just get caught up with the usual maintenance, much less make any sort of additional impact. So I started talking to my mom and Paul about it, kind of to warn them, and I also started to try simplifying things (cleaning, purging, organizing) before I would leave, i.e. When I was feeling good. I think all of it helped. In the past, I have been so even keeled, that I pretty much trained people (and myself) to think that things didn't bother me so you know, don't worry about me. But then I found myself in this space of needing to make it clear that I was in need of help in order to keep a peaceful mind and spirit. I have to continually remind myself (because I forget like every day), "you are still healing".
- In the last few months my baby girl turned 4, my big girls' softball team won the playoffs for her league, I have met new friends as I have more consistently volunteered with Sofia's preschool, I have worked with Josie on her homework daily and seen the pride on her face as she learns to read, I have made lots of new recipes that my family has (mostly) enjoyed, I have spoken to several women with recent breast cancer diagnoses. I try to get to the gym 3 days/week and have been increasing my pace for my 3-4 mile runs. The mornings when the girls are at school go fast, but I am learning the rhythms of my home and enjoy going grocery shopping, occasionally getting time with friends, cleaning, etc. As so many of you know, being at home full-time with 3 children is no walk in the park. Some days feel centered, on-rhythm, healing and enriching; other days feel hectic, disjointed, off-beat, painful and ugly. But again, it is a chance for my humanity to be released. When I complain to Paul about the hard days, his response is usually, "I'm so glad it's not just me!", because he used to watch the girls 2 days/week when I went into the office and while he did a great job, it was difficult for him and he was often frustrated with himself and them. He has always been much better about being in touch with his humanity, which is one of the most inviting and wonderful things about him. Why do I resist this so much?
- I think I forgot to mention that I am no longer employed. After nearly 13 years of employment at ECCU, it has come to an end. I left feeling honored, loved and valued. I have so many wonderful friends from the past 13 years and I am so thankful for the time spent there. However, on an emotional level, it really threw me for a loop! I hadn't realized how much of my identity was wrapped up in having supported our family with that job for so long. Poor Paul, he had to put up with a bit of an emotional roller coaster for a few days!
- Last night was Open House for Josie and Ellie's school. Last year it was on 5/28, and it was on that afternoon that I got a call from my doctor and she informed me that I had breast cancer. What?! I can still hardly believe it. Paul had just started a brand new Emergency Room job and I called him a dozen times before he picked up and all I could say (through tears) was, "I have breast cancer." He said, "I'm coming home", and that was it. He came home, we ate dinner with my mom and the girls and then I said, "Okay, it's time to go to Open House." He didn't think we should go but I insisted. I mean, I was just told I had cancer and the last two people that I knew with cancer were no longer alive. Although I never felt like I had a death sentence, I certainly knew that as long as I was alive and able to attend something like Open House for my girls, I was going! Let's say, it was pretty rough, filled with tears and texts to family. Wow - one year. As you can imagine, it feels like just yesterday in some ways and in other ways it feels like a decade. I know that I am not the same person that I was one year ago. One year ago, I knew that the experience of breast cancer would change me but I didn't know how and I was so scared. The idea of chemotherapy and losing my hair and being sick, especially when I didn't feel sick at all, was so overwhelming. I remember evenings full of tears, deep, full-body weeping that didn't seem to have a bottom to it. There was so much sadness and fear and shock.
- I am often asked if I am in remission. Well, I guess it kind of depends who you ask! As I mentioned in my January update, my PET scan in January was basically clean. My doctors in Phoenix have a philosophy of cancer that is relatable to how we typically deal with diabetes - you are able to live by learning to manage it. As such, my new diet and supplements will be lifelong commitments, and my IPT treatments will continue, just with less and less frequency. I will continue to have regular blood work done and periodic scans to confirm that the cancer has not returned, grown, or relocated. My regular oncologist continues to tell me that there is no "cure" without having surgery, which I have declined. This is the same person that told me a year ago that if I did everything she recommended (standard protocol/traditional treatment), my chance of recurrence would still be 50% - 60%. Funny, that doesn't sound like a cure to me! So basically neither of my doctors would say I am in remission, though for different reasons. However, since I have no detectable cancer, that sounds a lot like remission to me!
- Well, that was a long update! Much has happened and continues to happen. The main thing is that I am thankful to be alive. I hope to make a difference in people's lives, even if that is just being someone willing to hear their story and say, "you are not alone". I have come to realize the importance of that so much in the last year. I feel God inviting me into the MYSTERY of knowing Him and of being part of bringing His kingdom (His love, peace, joy, kindness, etc.) here on earth. Thank you for being a part of my story and for carrying me and my family over the last year. I will do my best to update now and then, especially if there are any new scans done or anything to report.
Grace and peace,