Radiation and Anticancer

Happy Friday People!

I started radiation yesterday. See the pictures below of the span of skin they need to radiate (as designated by the blue sharpie) which is QUITE LARGE running from a couple inches above my belly button on the left side, all the way up to my neck and around the side and armpit just until they get to my back. It's a lot bigger than I thought. The good news is that the people who work in radiation at Ridley Tree could not be nicer AND the sessions are REALLY FAST. You get to pick your music, light, and ceiling graphic for your sessions to help you be as comfortable as possible. For my mock run through on Wednesday we listened to Sofi Tukker with blue ambient lighting and an aquarium on the ceiling.  I sort of have to hold my head in a weird position to accommodate the radiation beam so I can't really see the aquarium, but still, it's very peaceful and calming. Yesterday they had classic rock on, dim white light and I think a river, which was fine. Today I'm thinking David Grey with yellow light and maybe a beach scene?  Let me know if you have any amazing combos for me to consider. (LOL) 

In total, I'll have 33 sessions, every Monday through Friday, through February 3rd. My first session yesterday legit felt about 3 minutes long. I have to hold my breath for most of it to avoid having them graze my lungs (and maybe ribs?), and if I did it right, I only counted about 7 breaths total so I think they're quite efficient.  While 33/February 3rd seems like SO MUCH TIME,  it's really only 7 weeks compared with 21 weeks of chemo, so I think it is going to go by quickly. I am also stocked up on VERY RICH, DENSE lotions and balms, so hopefully I can manage to avoid any adverse skin impacts and just motor through the days. Wish me luck!

Outside of radiation, I continue to focus on health and sustainable changes I can make to my diet, stress management and physical activity.  Which brings to me the book I am still reading called Anticancer. I've realized that reading books ABOUT cancer while I am being treated FOR cancer doesn't really work for me. When I dive into the cancer books, I stall out quickly, which is why I haven't made much progress on this one. (And I haven't finished Heal yet either, and I have How Not to Die and Eat to Beat Disease in my queu still so that may take me into 2025...we'll see.)  Anyway - back to Anticancer. The sections I have read have helped me understand that the lifestyle changes being forced encouraged are not about my having done anything wrong or caused my cancer.  They are about giving the cancer invading my body AS DIFFICULT A TIME as possible to come back again, grow or spread. The general premise of the book is that people have natural defenses that exist in their body, the defenses that help wounds heal or fight infection (white blood cells, blood vessels, etc), and that within people who have cancer, the cancer has figured out a way to use those processes to feed itself and grow. The idea behind "lifestyle changes" is to replenish those processes naturally (focused on preventing inflammation) to overcome the power of the cancer, or the inclination of the processes to be led/influenced or overcome by the cancer. It's like creating as powerful an environment internally to combat the power of the cancer, which unfortunately is powerful, aggressive and pretty smart. So these are lifestyle things that really everyone should consider, but especially people who have had cancer or are at high risk of developing cancer because of genetics because their bodies have already learned to grow the cancer. That said, even with everything I do to optimize my health, there are no gurantees it will work, and in fact the man who wrote the book ended up dying of his brain cancer, but where they thought he would only live months, maybe 2 years max, I think he ended up living for 20 or so years longer, and even overcame a recurrence. So these changes (plus the modern miracle of medical cancer treatment) give me the best chance of living as long as possible (and hopefully cancer-free from here on out).  So, that is what I'm what I'm focused on and so far I have found the changes to be pretty pleasant. (I realize many of you may already be doing these things, or even more, so good on you. I feel that I am pretty healthy generally, so I consider these mostly adds and subtle tweeks, not an overhaul,) There are like 20 other possible things/ideas which I had to table for now, so I guess there will always be room for improvement.

Diet:

1. Reduced grains, when enjoying grains, focus on multigrains, nuts, seeds to cut the wheat.
2. More beans (at least one serving a day)
3. More berries, wider variety of sesaonal fruit rather then the standby fruits I eat everyday.
4. At least two cups of green tea daily, increase this to 3-6 on a regular basis
5. A tbsp of ground flaxseeds most days (when I can remember). Add turmeric to my diet.
6. Front load meals with water (not just when I wake up in the morning, but every meal)

Physical Activity:

1. Increase physical activity to at least 60 mins daily, working toward 90 mins daily.  (Work on endurance/duration, physical activity involving the whole body, and BUILDING MUSCLE MASS.)

Psychology:

1. Finding and RELISHING the joy of the every day, continue to work on meaningful connections with people (which is really hard during Covid). The idea here is that immune cells are sensitive to our emotions and respond favorably to to emotional states characterized by a sense of well being and a feeling we are connected to those round us. The also mobilize better when in service of a life objectively worth living.
2. Continue work on stress and anxiety management, assume this will be a lifelong struggle.

On the themes of daily joy and a life worth living, my oncology therapist also challenged me to do an exercise where I talked through what I would do with my time if I had five years to live, one year to live, or three months to live. Sort of surprising to me was the fact that my answer was not super different regardless of the time left, but sadly it was centered on spending my time with my family traveling and having new experiences, which again are not available at this time. So...our latest dream is that following radiation we will take a month and go live somewhere else, preferably in the snow (This is how our summer dream started and then it shrunk to 5 days in Pismo, so we'll see how this plays out). Right now we are looking at Idaho. but are also interested in Utah, Montana or Colorado. We need a new view. And some new activities...We'll bring our cat. We'll make memories.  As dull and uneventful as our time in Pismo was, our kids talk every week about how it was the BEST VACATION EVER bc I think it meant so much for them to see new scenery and just chill away from all the stress.

It also triggered me to start thinking more intentionally about goals across several aspects of my life, which I haven't ever formalized in the past. For me, the major categories I tend to think about my life within are health, family/friends/connection, travel/adventure/experiences, work, giving back and home improvement. For 2021, this is how I am thinking about goal setting. Not sure what I will do intentionally on connection or giving back yet, but I'm thinking about it!

• Health - obvious. Everything I stated before plus continue to scan with No Evidene of Disease (NED)
• I know we want at least two travel experiences/adventures even if it's just us driving to some random place within the state. 
• We have to have our pool resurfaced so that plus some related work in the backyard will be the home improvement goal. (as much as we NEED our kitchen redone, gonna hve to wait til post-Covid, sadly.)
• On the work front, I will need to make my way back into Sonos at some point in early 2021, and I need to find a way to find new meaning in my work AND to find ways to work that don't require me to be sitting in meetings for SO MANY hours every day.  I don't think I can go back to the back-to-back meeting grind so that is going to be an interest challenge.

Hmmmm, what else do I have to share????  Not much. I feel like these blog entries have become more and more boring as time wears on, and less philosophical and insightful.  I'm really tired and short-sighted at the moment, trying to just GET THROUGH RADIATION and continue to have clean scans, maybe that's why...or maybe I am kind of boring and I just never had enough down time to realize it?  I hope that's not it. I'm not sure.

So I guess that's it then.  Happy Holidays if I'm not back with any sort of update before next week.  Thanks for reading and for the continued support.

Sherri

PS - After I finished writing this, I remembered a family goal template I had screen captured from Big Life Journal on Instagram. I am including it below. It falls into the same general categories I listed bove except work. So maybe that is actually what triggered my brain or at least created the connection between the therapy exercise and goal-setting...Regardless, enjoy, hope you find it useful. (And again, many of you may already be doing this and if so, kudos to your superiority. LOL.)

I'm Tired x Infinity + Phase 3: Radiation

My mood/emotions are pretty erratic these days. I'm sure most people's are, considering how long we've been in this shit position with Covid. Mine fluctuate depending on how physically good I feel and the most recent news and updates coming from my doctors. I've started to write this blog three times over the past week...starting with a very depressed version after my radiology consult, which a few days later was a pretty happy and upbeat version as I started to feel stronger after surgery (and not take 23 minutes to walk ONE MILE), and now today's version...which, unfortunately for you, is coming from more of a downer mood again after a call with my oncologist this morning. 

So let's just start with my general state of being which is that I'm really, really, really tired, like EXHAUSTED deep into my bones tired where sometimes I lose time in my day because I'm not exactly conscious or engaged in the day enough to be aware of what is happening or the time that is passing. I assume this is MOSTLY physical as my body continues to recover from chemo and surgery, but exacerbated by the ever-changing Covid status in Santa Barbara which ignites my fear and confusion, complexity of decision-making and SHEER BOREDOM as we continue to stay safer at home with the kids doing virtual school and not a lot of newness, excitement or adventure in our days. I am SO DAMN TIRED. And at the same time restless and antsy to be done with active treatment. (Oh, also, it's Monday and getting back in to virtual school after 5 days off has been ROUGH.)

On the physical recovery side, I think things are going pretty well. I had been struggling more than I thought I would with my very obviously explicit in-your-face misshapen body (meaning living with one boob), but now that I am feeling physically stronger and somewhat capable again, I haven't thought about it as intensely or consciously. I mean, I look weird. Clothes fit me weirdly. I'm sure when I'm out walking people are confused at the shape of me. But I think I've moved beyond my initial shock and depression at being deformed...likely with some help from the books I'm reading (your body is your biggest ally in health!) and my oncology therapist who suggested working to get back to being grateful to my body for getting me through everything it has been through during cancer 2.0. I will eventually need to decide if I want to get reconstruction (if it is determined that I am physically able to get it.)  Once you've had radiation, especially on such a large span of skin, implants are no longer an option so getting a second boob would require a 13-16 hour surgery to use my own tissue from my stomach to reform the shape of a breast, and then 3-6 months of physical recovery. I'm not sure I'm into doing that after a full year of cancer treatment...for the second time. So that will be the debate next Winter, I guess. Thankfully I don't have to think about that for many months, but I do need to find ways to feel good, comfortable, confident in my body again.

My hair has also started to grow back in so I've got like 1/4 inch of growth all around (although I still wear a hat bc I still look sick/bald/weird) and my eyebrows have mostly grown back (I assume thanks to this very expensive but I guess effective brow serum called Vegamour.) I am able to walk for exercise, and am working my way back up to a normal speed and distance (probably more aggressively than my doctors want) and started doing the post-surgery stretches for my arm and chest at the week three mark last week and can already see that I've made progress, although my left arm is less stretchy by about three inches than the right from almost every angle.. I start actual physical therapy tomorrow which I think will continue to correct that.

I feel pretty good, outside of being so damn tired, but for some reason my white blood cells took a dip with my last bloodwork since surgery so I am hopeful that's because of the effort of mending the skin, but I'd like them to get back to the normal range asap. My platelets also continue to be low. Maybe this is contributing to how tired I am. 

The call with my oncologist this morning was about "lifestyle changes" or in more direct terms how to lose weight. My oncologist is so nice, but he point blank told me "everything we're doing from this point forward seems to work better when you're smaller." So I have to figure out how to live my life from the point of view of optimal health...which is depressing considering I think I have been living my life pretty healthily. I started reading this book called Anticancer and have another one in the queu called How Not to Die that go deep into healing nutrition, physical activity and psychology. I'll need to cut down on grains and meat, and increase beans, berries and green tea. I need to insert more exercises into my routines to build muscle mass (which they tell me is going to be more difficult considering everything they're doing to shut down my hormones), and focus on mindfulness, connection and stress-reduction. It's overwhelming to even think about, so for December I'm focusing on reducing grains, eating berries every day (when I can) and starting to add in green tea and flaxseed to my diet. I renewed my Calm membership, which I had just cancelled earlier this month, and I'm starting to think about which exercise routines to adopt to add on to what I'm already doing. 

It also makes me feel super depressed, conflicted, scared, guilty, mad to be thinking about all these changes because I feel like it feeds into the idea that I have been doing something wrong and caused my cancer (and recurrence). That is the worst part of cancer and the worst part of humans and I try to avoid it - people trying to figure out what YOU did to cause your cancer which makes you different than them and reassures them that they won't get it. Sigh...For the record, I didn't do anything. And, if you're thinking this, you CAN get cancer. (Well, and if you are thinking this, maybe you should stop reading my blog...)

Phase 3/Radiation is also going to be its own mini-marathon. This week I have to get the right/non cancer expander which they put in and made smaller after they took out the old implant, shrunk even more than they did in surgery so that the radiation beam doesn't hit it. Next week I'l have my CT radiology mapping where they essentially make a holograph of my body in the radiation position to program the radiation machine to shoot the beam into the right area, and to shut off if my body moves position or changes shape. I'll have to practice holding my breath (which I'll do every session) so the radiation doesn't hit the heart or lungs. Then December 16th we'll have a dry run of a session (without radiation), and actual radiation starts December 17th. I'll have 33 rounds, 28 to the chest wall and armpit/lymph area, 5 to the incision scar, and with the December and January holidays, I believe this takes me to February 4th. Sessions will be every Monday-Friday starting at 45 minutes, but once we get the routine down they should be closer to 20 minutes. I guess about midway through I might start blistering like a bad sunburn...and of course there are all these long term side effects that sound terrible. Whatever. Again, I revert back to being grateful I have so many treatment steps to get rid of the cancer once and for all. But, also, it takes a lot of endurance to get through all the steps, and I AM TIRED. :(

What else is on my mind????? Hmmmm, well Christmas obviously. And the Supreme Court case on the ACA...wondering why we suck on healthcare access in this country....a little disappointed radiation is running into February because I had hoped to be able to do something amazing for my birthday in January. I feel like I've earned it. The Covid vaccine. Wondering why it's so GD hot in Santa Barbara this late in the year (especially when we had a week or two of delightfully brisk weather and were able to use our fireplaces...) Happy to have some TV back (shout out to Greys, This is Us, and a Million Little Things...)

I think that's about it. I don't have anything really inspirational to share, unfortunately, and realize this is a bunch of words about me that are probably boring and TMI.  If you made it this far, thanks for reading. Here is something I copied from the Barre3 page...it's true. Whatever state your body is in, give it a big old thank you for being your ally on this adventure and taking you this far, you never know when you are going to look back and miss the body you weren't thankful for. 💗 

Sherri

Surgery Success

 Just a quick post with all the updates and outcomes from surgery!

• They were able to close my skin without the lat flap!
• The plastic surgeon was able to find a vein to connect with the lymphatic system to reduce risk of lymphedema!
• They got clean margins meaning no sign of cancer in any of the skin margins removed during surgery!
• They removed 21 lymphnodes and only 2 had any sign of cancer...and the cancer they had was .24 mm or smaller!

I am also healing quite well from the surgery. They wanted me to work up to walking 30 minutes per day over the 4-6 week recovery period, and I already got there yesterday, albeit very slowly. The pain and nausea are being treated well with tylenol and motrin. I have found a comfortable way to sleep in my bed with a back wedge. I think my drains will be able to come out tomorrow and then I can be more confident showering!

So, short and sweet today to just say for now IT IS ALL GOOD. 💓

Be back either when I have more to say or when I know more about radiation.

Thanks,

Sherri

Tomorrow's the Big Day (and I don't mean the election)

I don't have much to share, but I was feeling anxious about tomorrow and thought I'd spend 10 minutes just clearing my head on here. Please understand my head is a bit of a messy thinking about tomorrow so I suspect this post is going to be a bit of a mess too.

If you're on Facebook or Instagram, you'll know we made it to Pismo for a relaxing five days between chemo and surgery. We kayaked, which was the highlight for me, and the kids mostly cooperated because I guilted them by telling them I won't be able to do it for a very long time, and maybe not very well depending on my surgery. We rode horses. We swam in a warm indoor saltwater pool, had lots of great meals and ice cream. It was nice to get away, to live in new walls, and not think about cancer. 

Since we came home, it's been appointment after appointment after appointment, starting with getting the stitches out from my many biopsies at noon on the Friday of our Pismo week so it was like, relaxation, relaxation and BAM - BACK TO MEDICAL REALITY!  This past week I had 6 pre-op appts. The good news and bad news is that my blood and heart and Covid status all meet the requirements for me to go into surgery tomorrow, so I guess we're a go! Ahhhhhhhhhhhhhhhhhhhhhh!

I'm ready, really, to walk out of surgery with all the cancer gone. Like for real, this time. I keep saying I think I'm about 90% ready, but still 10% scared. As I watch the clock get later, though, the ratio is maybe moving a little more toward the fear.

I don't feel ready for pain and drains and limited ability to move...although I lived through most of this once before so I feel like I can handle it.  Right? Maybe just text me or email me your belief in my ability. Please? Thanks.

I have been using another visualization my therapist created for me to prep for surgery so once again you all are in the surgery room with me in my imagination waiting for the outstanding outcome.  The recording also reminds me that my surgeons have been training their entire adult lives to do this work, that they are masters in their field and doing the work they excel at. It also goes through how my body knows exactly what to do to relax during the surgery and heal afterwards and that everyone will help me manage my pain...so it covers all the fear areas, and I have listened to it A LOT of times.

I also found this great mantra for surgery prep: “I am relaxed and calm. I trust my surgeon. I see a long life where I am strong and healthy.” I'd add to that - my surgery will be successful.  And I have this on repeat in my brain. But I'm still anxious!

My main worries are: 

• Removal of my lymphnodes...I mean honestly I couldn't tell you what they do, but I know they matter, and lymphatic drainage is a big health thing...so it sounds weird and scary to no longer have that system on one side.  My surgeon told me that part of the process is pretty painful...so...not sure how to reconcile the fear about that in my brain.
• The lat flap. It sounds AWFUL and GROSS. I mean stretching a muscle into a different part of the body...it's like something that would happen in Bugs Bunny...or like Jim Carey slaptick. Not to mention losing movement and strength. So I am hoping that I land on the 50% side of them being able to close me up, even if it means I live without any chance for reconstruction. 
• Pain and drains. I think I have a high threshold for pain, but I don't want to test it. The drains are just gross and inconvenient. I'm afraid I won't be able to sleep on my back or get in and out of bed. Or that something will come undone.
• That it won't work and the cancer will come back again.  But this one is easy enough to shelve while I get through the immediate next step. 

On a more positive note, I'm having the surgery done at a small surgical center close to my house and am the only overnight patient they will have.  They called and told me to pack my robe and slippers, and to remind the staff to have me order my lunch before I go under. So, Chris and I joke about me going to the spa for the night.  It does sound like I will get amazing care, so I'm grateful for that.

I also got SO MANY text messages today from people who remembered that the surgery was tomorrow and wanted to wish me well.  Those were an awesome surprise and much appreciated.

I don't think I have anything else to add. I guess send any healing, positive energy you have to spare my way tomorrow, especially if it helps distract you from the election.  Check on Chris as I am sure he will be a mess mostly due to election obsession but also bc of the surgery and solo parenting our crazy kids. As always, send any funny TV show, movie or book recommendations my way as I am in restricted movement mode for 4-6 weeks...

Thanks for reading this crazy rant!

Sherri

Phase 2: Surgery

As promised, I have more details on surgery and will be sharing them today. Surgery is scheduled for 11/3 (election day). When I let my oncologist know, he was like GREAT, I look forward to celebrating two amazing outcomes that night. I'm glad he is optimistic! My first thought was that Chris was going to die of a heart attack while I was at the hospital between stress about me and stress about the election. I know he is going to be watching all the live coverage and yelling at the TV and generally raising his blood pressure.  Who knows, though, maybe it will be a good distraction for him.  For me, it will be weird to sort of miss that moment with the rest of the world, but maybe good for me, too.

Since chemo, I have been BUSY with pre-surgery appointments. Because the cancer showed up on the skin, my surgeon had me come in this past Monday (10/12) so she could take skin samples and have them biopsied before surgery to ensure she was getting clean margins. She took four skin samples, gave me four sets of stitches, and from those initial samples, 3 were cancer-free. The one at the top of my chest (closest to the tumor, as well as my heart and lungs, eek!) was not. So I went back yesterday and had two more samples taken, two more sets of stiches, and those were both clean so she now has the line for the surgery, which is reassuring and amazing news! Also, how super smart to take the samples before surgery???? Usually they just do the surgery and do their best for clean margins, but if we had done that, I would have had to go back under for a second surgery because the original line of incision would not have been clean. I am so grateful to have such smart people on my care team, who are also really collaborative and open to learning and trying new things. I think it will result in overall better outcomes for me.

I've also had two consults with my plastic surgeon and a follow-up with the radiologist, so that we are all on the same page about the surgery.  Here is what will happen:

1. The Oncology Surgeon (Dr. Mitchell) will remove the skin, implant, and tissue leftover from my original surgery in 2014, as well as all the lymphnodes in the left armpit. Her job is to get out all the cancer.

2. The Plastic Surgeon (Dr. Soares) will be doing three different things, and his part of the surgery will take longer. 

• First, while Dr. Mitchell is working on the left side, he'll work on the right side, remove my implant and replace it with a small over-muscle tissue expander so that the radiologist doesn't hit my skin on the right hand side when I do radiation in December. 
• Second, he will be attempting a procedure that helps to overcome the risk of lymphedema that might result from all my lymphnodes being removed from my armpit. He'll be looking for a vein in my arm that can be re-routed to connect to the lymphatic system to pick up the drainage being impacted by the removed lymphnodes.  There is an actual medical name for this - I don't know it - and I may not even be describing it well, but it's effective in 85% of cases, so I am hopeful. This will help me continue to maintain as much mobility and activity throoughout the rest of my hopefully long life as possible.
• Last, he'll close me up and things get a little tricky. Dr. Mitchell will be trying to take as much skin as necessary to get the cancer out, but also not too much so that my skin can be sewn together to close me back up. If they are able to do that, then Dr. Soares will just close me up like he would any surgical incision. There is a 50% chance he'll be able to do that. If there isn't enough skin to close me up, then he will be performing a lat flap, meaning creating an incision around my side and taking my lat muscle and stretching it over the chest in order to provide skin to close the opening. There is a 50% chance that will be necessary.  If that is the procedure needed, word on the street is that I will premanently lose about 15-20% strength on my left side and may not be able to perform certain activities (push-ups, rowing, climbing...) which will be sad, so I am hopeful he can just close me up without the extra step...but I also want all the cancer out for good this time, so I am fine either way and will deal with whatever it does to my long-term mobility.

All of this stuff can apparently be done in about 4 hours, which is also quitre remarkable! I will stay in the hospital for one night, and then be on bed rest for about three days, and limited mobility for 4-6 weeks. I'll have multiple icky drains. I will be on lots of meds (might be the most mellow days of my life!). But I will be just healing before I move into Phase 3 Radiation.

So I think that's it. I hope I wrote that in a way that wasn't too gross but provided enough detail to explain why I am terrified.  Oh - also, I have to get a damn up-the-nose Covid test before surgery and that is also terrifying so MEGA BOO to stupid Covid!

What's making me happy:

• Next week, we are going to Pismo for 5 days for a change of scenery since we have taken ZERO vacations in 2020 and have diligently been sheltering in damn place since mid-March due to Covid. I can't remember if I shared here, but we thought I would have the whole month of October off and thought about traveling through several states and hitting up several National Parks on a one-month road tour. Then, I had the liver issue with the second stage of chemo, and chemo got delayed a week, so we stopped feeling confident about scheduling anything. Toward the end of chemo, we had reduced it to a 3-week trip to Utah to see their five National Parks, but then my surgeon mentioned pre-op appointments, and I have monthly shots of Lupron to shut down my ovaries and needed to be here on 10/27 for that, and they thought I might be able to have surgery in October, and Covid cases started spiking in Utah, so a long out-of-state trip stopped feeling realistic. Last week, we ended up booking the one house still available that looked nice in Pismo which was available for the five days remaining in October which we had free. I booked a private kayak tour since it might be my last time kayaking. We'll go see the monarchs, and hopefully have s'mores on the beach, and just feel normal for a few days. So, I'm excited for five days - which are of course not as amazing as a month-long road trip - but better than nothing!
• Peloton Outdoor Power Walks: When our hiking trails shut down because of high fire risk, and we'd hd bd air quality for days as well, I just stopped walking at all and it sucked. My sisters have been talking up Peloton for months, so I downloaded the app and have been doing these guided 45 minute power walks and I totally love them. I feel super self conscious about doing the dorky power walk arm swing, but the instructors tell me I have to, and so I do. The first few have made my butt sore, and I think it's been a good add to my workout regiment, especially since there have been several days when I can't do my normal workouts becuse of stitches and things.  (I am going to REALLY STRUGGLE to not workout after surgery! Eek!)
• My surgery "success" guided visualization: The cancer therapist I work with who gave me the great visualization for my scans, created a visualization for my surgery so I am listening to that every day and visulizing a great outcome~!
• The idea of becoming a Breast Cancer Advocate. I reached back out to the postpartum breast cancer specialist who I had the consult with (Dr. Borges) and asked her what needs their might be for a former recruiter with program management skills and a 16 year old MPH...and she suggested I look into getting the education and training to be a breast cancer advocate, and is looking for someone to join her team part-time. A breast cancer advocate is the voice of the patient in advocting for funding, research, legislation related to breast cancer. I think it sounds perfect so I plan to look into the courses necessary to do this. And, it's the kind of job you can work around your regular job, so we'll see if this helps me put all the pieces together of post-cancer 2.0 for my life. I can't imagine what that feels or looks like yet.
• I am back to reading and exploring new shows - let me know if you have recommendations for either. I am going to need things to fill my time after surgery!

I think that's all I have for tonight.  Thanks for reading!

Sherri

Phase 1: DONE!

Well, it's Tuesday, and guess what people?  I don't have chemo today because PHASE 1 IS DONE! 16 rounds over 21 weeks with bloodwork every Monday, chemo on Tuesday, and for the last 4 rounds, white blood cell booster shots every Wednesday, Thursday and Friday. This week my calendar is pretty much empty and I have the freedom to decide how to spend the next month before surgery, which feels awesome.

In EVEN BETTER NEWS, the post-chemo scans showed that the cancer was "very responsive" to the chemo, with the visible cancer in the armpit being completely resolved and the cancer in the chest being 90% resolved before the last chemo (so hopefully even more after the last chemo.)  Let me just say a SUPER LOUD AND ENTHUSIASTIC PHEW AND WAHOO! 16 rounds of chemo were a marathon. It felt long and like a massive hamster wheel. I was and am super tired. To know it was worth it and the cancer responded is a massive relief.  Thank you to my body for physically tolerating it so well!  I love you, body!

If you aren't already clapping and whooping it up in front of your phone or computer screen, why don't we pause for 20 seconds and give you a moment to appropriately celebrate with me...(pause for 20 seconds...) THANK YOU for feeling that victory dance with me!

 If I was listening to my cancer therapist I would stop the blog right there. She has been working with me on relishing the good moments in life - taking them in, making them last, REALLY noticing them, and I did not live up to this guidance on my last chemo day. My friend Kate sent me a lovely bouquet of flowers, my friend Yvette called to give me a live YAHOO when I texted her about the scans...and MANY other friends, my sisters and mom texted with their congratulations knowing it was my last chemo. It's wonderful to have other people remember the milestones I'm crossing and remind me to celebrate progress! But, the Cancer Center doesn't have a ritual for the last chemo, so no bell to ring or departure song or anything like that. I brought them a box of See's candy lollipops with a thank you card for "seeing" me as more than a cancer patient and expressing my hope to never see them again (for real!). (It was hard to think of something that met all the Covid restrictions, but these are individually wrapped in a cellophane box, so worked.) 

When I got home, the subacute center where my mom is being treated called me seven times with things they needed, Natasha had her basketball skills training, we had no dinner plan, and life just resumed as it always does which was sort of frantic and messy and needy. We got takeout of my choice for dinner which I ate alone in the backyard as Chris watched the Presidential debate and the kids zoomed and played video games with friends. I moved straight into GO MODE for Phase 2 - surgery...and honestly, could just feel the new wave of anxiety setting in about all the scary, complicated surgery details.

So...I'm trying to sort of slow my roll right now against my inclination to fast track into surgery mode and enjoy the month ahead. Yes, there are more medical appointments before surgery and the truly terrifying task of having the swab up the nose test to make sure I am Covid negative before surgery. But, I have about 30 days or so to relish the pause between phases and I am really trying against every natural instinct in my body to relish this time and not spend it agonizing over surgery details and what-if scenarios.  It's hard. It doesn't come naturally for me...but I am REALLY TRYING.

The details of my surgery are still being sorted out because the cancer on the skin is unusual and tricky. I will likely need what they call a lat flap, which is using my lat muscle to pull into the chest area in order to close my skin together. Before surgery I need to have some additional skin removed and biopsied so they can work on clean margins with the skin removal, I need an EKG, the surgery has four different parts happening simultaneously, I will likely permanently lose 15-20% of strength in my left side...etc., etc.  See - Do you see how easy it is to slip into taskmaster go mode and anxiety overload? Ahhhh - I tell you what, I'll do another blog post after my October 12th biopsies when I know all the details about surgery and for those of you who like the details or are interested in the medical stuff, I will share everything I know then. (And, also, despite the fact that the cancer was super responsive to chemo, there is no way to detect cancer at the microscopic level through scans, hence why surgery and radiation are still needed to make sure they got everything, including at the microscopic level.)

I hope to spend the next month focused on two main things:

1. Getting as strong as possible for surgery. This will be an intense focus on exercise, sleep, meditation, healthy foods, anxiety-management, guided visualizations, and meditation. The recovery from surgery will be 4-6 weeks and I won't be able to exercise or do normal tasks for much of that period so I am getting myself in the best shape I can so my recovery and resumption of normal tasks is as easy as possible!
2. Relaxing and being present. I have returned to reading mode and hope to get through the eight or so books I have stockpiled which I neglected when I got too tired to focus on reading during chemo. While we had grand plans to do a driving tour of Utah during my down time, because I still have quite a few appointments this month before surgery, we are looking at doing a week-long getaway probably in Pismo Beach, enjoying a different set of walls and rooms, walking to the beach after virtual school and just escaping from the normal everyday grind of Covid + cancer. I need to get in some kayaking and stand-up-paddleboard before surgery as those types of movements might forever be restricted, and I love both of those activities and don't do them enough. I want to hike and play with the kids and eat good food. Oh, and someone gave me a bottle of Dom Perignon in thanks for a Sonos discount code so I am enjoying that for sure!

Oh - before I go I need to remind everyone that October is Breast Cancer ACTION month. We are so far past awareness at this stage, and I encourage you all to take some action toward a world free of breast cancer. I believe the common sentiment about breast cancer is that it's the "good" kind of cancer, and survivable and so people sort of dismiss the severity of it.  Don't be that person.  Breast cancer is SO PREVALENT. I think it's like 12,000 women a year die of breast cancer, which makes it something like every 13 minutes.  Last week, two friends I adore made me aware they had recently been diagnosed with breast cancer.  It happens too often. I know too many people who have had it or have it now. Many of the available treatments permanently alter a woman's chemical make-up in order to keep the cancer at bay, the surgeries remove whole parts of women, the fear is always there even if mostly subconscious and not interfering in day to day life. While it seems the "formula" for breast cancer treatment has been perfected, a lot of the individual cancers, like mine, are tricky and unpredictable and there is some guessing and luck involved. Funding is super important! Your self-exams (women!) are important - both times I found the cancer myself and had to be pretty aggressive to get quick exams and treatment. The two organizations I am most excited about with regard to breast cancer research are the Susan Love Foundation (in Encino, CA) and the National Breast Cancer Coalition. Make a donation or consider joining the Susan Love Army of Women - no cancer diagnosis required - to actively participate in breast cancer research!

I'll leave you with these two quotes which have inspired me since my first diagnois in 2013. I hope they inspire you as well. If not before, I will be back around the 12th with more details on my surgery.

As always, thanks for reading and thanks for the support!

Sherri

Epiphany (which took way too long!)

I had the most amazing experience of doing a facilitated visualization to help me overcome anxiety about my upcoming scans (TOMORROW!).  I have been seeing an oncology-specialized therapist and we have been working on anxiety reduction and finding more joy but she has a specialty in guided meditation and visualization for chemotherapy. I am not too stressed during my chemo sessions - I'm not sure why - I mostly tune out and watch something funny, text with my sisters, and assume the chemo is working.  But when it comes to scans (which I didn't do at all during the first cancer) I get VERY anxious about the process itself and the outcome. So we spent a session doing an interactive visualization, which she then used to create a guided visualization I can take with me to my remaining chemos (which she thought would be good practice even if they don't stress me out) and the scans. (There were two chemos left at the time we did this, now there is just one, woohoo!)

So what's the epiphany? Well, let me start by saying she had me use my own words to describe how I imagine the chemo working to get rid of the cancer. If you've been reading this blog through my whole cancer 2.0, you'll remember that the oncology nurse I had during my first chemo called Adriamycin "the assassin", and I sort of loved that.  However, when I think about the chemo doing its job, I don't really see it as like an attack or violent, so using my own words to describe what I believe is happening was powerful, because it made me feel more connected and at peace with the process. I see it as a bright yellow light that sort of removes the darkness of the cancer cells, and I see it being led by a teeny tiny little amorphous conductor.  She had me draw a picture of this which I will paste below. So now I have this strong visual to cling to around healing and dissolving cancer.

The epiphany came through the second part of the visualization which was geared toward the scans.  She had me think about everyone and anyone who has had my back at any point throughout my entire life. It could be my doctors now who are treating my cancer, or an elementary school teacher, or neighbors, friends, families, coworkers, the point was EVERYONE who has had my back ever. She had me imagine them all crowding in to the room where the scans were being done HAVING MY BACK and sending me warmth and healing and positive vibes, and she spent a good chunk of time letting me reflect on who would be in that room, and the number of people in that room. If you're reading this, I imagine you are in that room.  She reinforced how full the room was. How the room spanned every part of my life. And, how everyone in the room was there with me to receive the good news of healing together. (Gosh, even thinking about it makes me cry.) 

Anyway - it made me realize I had missed a major point through the chemo phase of this process, which is that I AM NOT ALONE. I have felt so lonely because no one I know has dealt with this same experience, in my mind the hardest and scariest experience imaginable, and so I felt like I was all alone. The visualization woke me up to the fact that I have hundreds and hundreds of people with me and it was so comforting.  As I am writing this I realize a bunch of you might think I'm an idiot...I mean the number of gestures of kindness and wellness sent our way have been remarkable so it's not like I didn't think people were wishing me well, I think the visual of people being in the room with me awiting good news was powerful and changed the way I was looking at my situation.  I hope that makes sense.

Anyway, that's all I wanted to share and I wanted to make sure I shared it before my scans tomorrow because if it's not the news I want from the scans I will likely lose connection with the feelings of comfort I have gained over the past week (hopefully I can work back to feeling them.) And I wanted to say thank you to everyone reading this for helping me get me to where I am today, for shaping me and for having my back always but especially right now.  I truly would not be who or where I am today without you.

If you have any energy to spare (and I know it's sparse right now bc things are HARD across the board for everyone) please send some my way for clean scans tomorrow which will set the path for the least difficult surgical protocol in November.

Here is the pic I made of the conductor of light dissolving the cancer cells during chemo. I draw like I'm four, but that doesn't diminish the power of the visual for me. LOL.

Be back soon with an update from the scans and next steps!

Sherri

Overwhelmed with Hard Emotions (ANXIETY, ANGER AND FEAR)

I'm putting a disclaimer on this one. It's dark and you might not want to read it. The longer treatment goes on, the more steps there are and the longer we are isolated, the more dramatically dark my thoughts can go. I needed to get them out of my brain!

Yesterday morning I had to go for my blood draw REALLY EARLY because labs were closed Monday and I need current bloodwork before every chemo. I got there at 6:10 AM for a 6:30 open time and there were two people in front of me, both of whom mentioned they were there early because they had 8 AM appts at Sansum.  I responded that I had an 11:20 appt for chemo.  The woman in front of me expressed her compassion for my situation and shared that her husband had cancer, and had two recurrences before he died. She told me if she had gone through what he went through the first time, she would have opted out of treatment for the recurrences, and told me I was SO COURAGEOUS. I countered by sharing that I have two daughters who I'd like to have a mom for as long as possible, so I am going to do everything I can to make that possible.  She went on to tell me about her childrens' grief at watching their dad die, and how for one of her kids it took more than 10 years for them to fully recover from the loss. I know she was trying to be kind, but JESUS MARY MOTHER OF GOD. This is every mom with cancer's biggest fear and I try not to think about it. It set off a bunch of anxiety and made me feel weepy and I need to find a way to re-shelve that fear! (And tell people to stop talking when I need them to keep their thoughts and feelings to themselves.)

This is not the only time I've been triggered and I'm sure it won't be the last.  We met with our Financial Advisor about a week ago and he asked when the last time was that we updated our Trust and specifically whether we were still comfortable with the plans we specified for Natasha and Karina should both Chris and I pass away when they are minors.  (FWIW, we're not! I mean, no one loves their kids like their mom does, honestly, and who can effectively replace parents?  No matter who we choose, they won't likely live in Goleta, so our kids would also lose all their friends.  Ugh, it is a terrible thing to think about with no good plan. Even best case scenario with Chris single parenting makes me feel sad. They need me, goddammit.) 

My oncology therapist challenged me last week to work on building stronger connections in my life with the people who matter most to me and who can help me emotionally get through this time. My totally uncensored response was that I don't feel like anyone can relate to what I am going through, so deepening connections feels shallow and fake. It also redirected my mind to the fact that my kids don't have enough REALLY CLOSE adult relationships in their lives to be OK if I am gone. It will fall to Chris which feels so overwhelming and our other relatives who mostly live in different parts of the State or out of State and who have families and lives of their own so I feel like I need to fast track these deep, rich relationships with people nearby who can help raise my kids in case I am unable to do it.

Every time someone complains about a minor inconvenience of the pandemic (including my kids) and "safer at home" orders, I get irate because my experience of the pandemic is centered on the fear that my time here is short and my experiences are severely limited because everything is closed and travel is limited. It also makes it difficult to accomplish the point above - deepening relationships - when everything is distanced and masked and scary and hard. 

I've also been thinking about whether I am going to die looking as ugly as I do. Or whether the way I look will get worse.  It's so shallow - but seeing my reflection or the random pics my kids take of me is shocking and I hate it.  I want to be remembered with hair and eyebrows and fewer eye bags.  I wonder if I'll lose mobility with my surgery and if that will be even worse than looking weird, ugly and unfamiliar. If it will limit what I can do.

In case it's not obvious - moms with cancer AGONIZE over the fear of not being there for their kids as they grow up. It was the first thing I thought of when I was diagnosed with my recurrence - what will this do to my kids? How do I say goodbye? Will they remember me? Will they have to watch me die? How do I even begin to explain this to them? How do they not feel abandoned? Should I write them a letter for every birthday, make videos, record my voice? I mean to be cler, I think knowing the timeline based on actual science within which you are going to die, and what the process is going to look like, and how it will happen is ABOUT THE WORST THING I CAN IMAGINE. But then adding abandoning your kids to that horror, it makes me lightheaded and barfy to think about. I still think about this regularly even though I am SO HOPEFUL everything is going to go to plan and I will be cured (for good I hope).  

Anyway, if there is a point to this rant, it's that if you encounter a mom with cancer, don't ask her the hard questions or share the tragic stories or in fact do or say anything that does not consider the horrible situation she is in. There is no dark thought in your brain that has not already been in hers probably 1,000 times. She doesn't need anyone to point out the devastating possibilities ahead. If you have a personal cancer story that doesn't end with the person being cured and living a long happy life, keep it to yourself! Just love her, let her vent all the fears and craziness to you with no shallow platitudes back, help her laugh and LOVE ON HER KIDS!

Ugh - that was a lot. Sorry, I really did just need to get all the crap out of my head!

Things that are making me happy:

• I had chemo 13 of 16 yesterday - I am getting so close. (Although the surgery terrifies me, but I look forward to being done with the full chemo phase of treatment and getting my hair, eyebrows, and eyelashes back.)
• My hair is perhaps starting to grow back - Karina said my scalp feels like a horse and it does feel like there are some super teeny tiny hairs growing their way back in. We're talking like a mm or something, but it's better than bald scalp!
• The show Better Things - I finished it last night. A relatable story about being an imperfect mom to girls.
• My nightly walks with Karina. Karina has so much anxiety right now - about Covid, me/cancer, and my mom who has been unwell. She is unable to sleep, cries a lot...it's heartbreaking. We have been walking a mile every night after dinner and she says it's her favorite part of her day.  She is such a sweet love.
• Having the kids home. It makes me crazy and is hard and I am also selfishly grateful to just be in their space as much as possible, because there is no telling what the future holds.
• Smart and inspiring friends who remind me of things like focusing on what I can control and that good things, memorable things happen even in the midst of our worst moments and not to miss out on those. 
• I signed up to be the La Patera parent rep on the Goleta District Advisory Committee because I have so many opinions and ideas about our schools. Excited to start participating at the end of the month. (The Public Engagement Commission I sit on also started back up with the virtual meetings in mid-August and it felt good to feel of value again!)

Things I struggle with (on top of all the crap I spewed above):

• Mountains of paperwork: Our systems in this country suck. The mounds of paperwork I have to complete for four different entities to actually get disability pay while I am disabled that I have been paying for for decades is disgusting and ridiculous. Every day there is new paperwork and everything takes forever so right now I am living on 10% of my income because everything else is still "in process"  including the individual policy I pay for myself and have paid thousands and thousands of dollars for. Add to that the mountains of paperwork for my mom who was hospitalized for 10 weeks and is now in a subacute rehab facility, plus paying her bills and managing her emails.  It's a lot of really annoying and stressful administration.
• Shutting out the noise of our world falling apart: An unprecedented pandemic (which is somehow polarizing) and global recession, what they are calling "once in a generation" wildfires across the West (global warming!), politics, racism, distance learning (also polarizing and causing people to be so mean to teachers, I don't understand it), unemployment and poverty...it feels like so much is wrong in the world and it's hard for me to shut that out and feel hope.  I keep trying every day and am finding new ways to digest news and events without destroying myself, but it's hard.  I feel like we are living through the darkest of days. I hope they are not also among my final days. :(

Some inspiration:

As always, thanks for reading!

She's Going the Distance (aka Endurance)

Endurance is not one of my strengths. I ran a half marathon once a couple decades ago and my approach to training and the run itself was to basically manage it in small, time bound chunks to just survive. It was a race sponsored by my employer at the time (Go PacifiCare) and felt like a good challenge for Chris and I. I trained entirely on a treadmill at the local 24 Hour Fitness following the Runner's World plan for first-time half marathoners. While doing training runs, I watched the treadmill clock and distance like my life depended on it with a constant inner commentary of "one mile down, 13 minutes, only 6 to go, oh let's play Madonna for this next mile...15 minutes of Madonna can get me through this..." etc.  I never got a runner's high. There was never a point where endorphins kicked in and I felt euphoric. It was miserable and I had to find mental ways to just get through it to finish the challenge (and to beat Chris, which I did, so yay.)  

Same thing is true at work - my "specialty" is building new things - new teams, new process, new philosophy, new tools.  Unintentionally, all of my jobs have involved building something from scratch or redesigning something. I do terribly with redundancy, cyclical work or assignments I have to do more than a couple times, or which last more than a few months. I need clear start and end dates on things, I don't want to deal with 18 versions, and I always need a vacation or break to be working toward so I can sustain momentum and energy knowing very specifically how far away I am from my next assignment or vacation.

Well, now that I've written that all out, maybe it's more sustaining the status quo, or redundancy that I don't like.  Give me a five hour hike and I am ALL IN. Give me that same five hour hike every week for a month - and nope! Even with ice cream - we used to do ice cream Sunday every Sunday of the summer, but after about three visits to the same ice cream shop I was just totally not interested...So let me pivot here mid-stream and say that maybe it's more about repetition, redundancy and sameness that drives me crazy!

The reason I opened with that is because I am REALLY STRUGGLING with feeling stuck in a never-ending week-long groundhog day cycle of chemotherapy.  I imagine everyone feels some sense of this with Covid. Keeping track of the day of the week is impossible. Some days it's 2:30 and I have no idea where the time has gone or if I've eaten lunch yet. I spend a lot of time going back to the homescreen on my phone to get the day, date and time because there is SO MUCH SAMENESS to every day. With 16 rounds of chemo added to that situation, running May to September, I am bored and fatigued and antsy to get this part of treatment done with and it is making me crazy.  I think Covid is exacerbating this too. Last time I had chemo in 2014 I had fun rituals - I got a massage w reflexology and a facial after every chemo cycle. My cycles were three weeks apart rather than weekly, so I always looked forward to eating yummy food the third week when I stopped feeling nauseous.  I could arrange for visits with my sisters and friends to break up the cycles.  My mom was over almost every day to help w the kids and clean, do laundry.  In the current state there is nothing - no cyclical "reward", no north star for when I am done, no fun rituals or traditions bc there is NOTHING TO DO while isolating. Plus there is a bit of dread that this is Phase 1 of 4 phases so it just feels never ending!

Anyway - it is making me crazy and cranky and I am chaneling my excess energy into a lot of research and thinking about virtual school this Fall and the working parent experience. My apologies to my school principal, head of our PTA, Goleta Superintendent, Public Health Officer for Santa Barbara and even Governor Newsom who are the recipients of my energy channeling currently.  Maybe it will turn into something and I will have a new North Star.  Or I'll find a new interest in a matter of weeks anyway.  It's anyone's guess in the no man's land of unending SAMENESS.

Gosh, thanks for hanging in there for a fairly meaningless rant I needed to get off my chest!

Things that are making me happy:

• The pile of cards I got from my friends at Sonos: One of my awesome coworkers coordinated a card drive at work and dropped off A LOT of cards for me to read throughout treatment. I open one  day, reach out to the person who wrote it and say hi, and it brings me great joy to have those connections!
• My new approach to being "active": I am a little embarrassed to admit that my default for being active was how much I worked out.  Which is generally barre or cardio yoga five days a week. After speaking with an expert in post partum breast cancer about inflammation and oxygenation and cell development, it sort of clicked for me that working out five days a week isn't actually being active. So I have added a goal of 50,000 steps a week as well. Which is about 6,000 steps on days when I do a class, and 10,000 steps when I don't, or 25 miles a week. It's my first week and so far I am succeeding in meeting my goals.
• Mindy Kaling: I'm listening to Why Not Me? while I walk and also binge watching The Mindy Project (which I have never seen before) and obsessed w all things Mindy.
• Summer fruit: The cherries and watermelon are killing it this summer!
• Floating on Karina's Pusheen inner tube in the pool: Although the summer has been disappointingly cool this summer, when it's warm I am digging floating in an inner tube in the pool and blasting summer on my Sonos Move!

Things I'm struggling with:

• My looks: On top of baldness that makes me look like the victim of a nuclear bomb, I have almost entirely lost the brows of my right eyebrow and it makes me irate.  I am grateful for cancer treatment and progress on cures, AND I wish someone could work on treatments that don't make the patient suffer the additional pain of looking like Mrs. Potato Head for many months!
• Groundhog day in perpetuity: Nothing to add here, just a big, dramatic sigh!
• Virtual School: I am so relieved we are not going back to school in person, and also super sad for my kids and the awesome teachers, and feel compelled to try to make the Fall AMAZING for them so I am investing way more time than is probably healthy developing ideas for additional learning, activities, curriculums to do with the kids.  

Things I'm pondering:

• Planning a trip for October between chemo and surgery: We're starting to think about a plan to do something in October after chemo but before surgery. The kids will be in virtual learning, I will have no active treatments happening, and as you know we are going stir crazy. We are thinking of exploring a bunch of parks - Bryce, Zion, Arches, Yellowstone, and either renting and RV or staying in Air BnBs for like a week at a time.  I hope we can make something happen.  My hesitancy is in dealing with the kids during long drives and then figuring out the food situation - with restaurants closed and stores often out of things still (at least in Goleta) I worry that it might be really hard to maintain normalcy on the road...But I want to try.  Let me know if you have any tips!
• Work: I miss work but the freedom of not having to sit in hours after hours of meetings is like a GIANT GIFT. I need to figure out when I go back to work how to not have that be my reality again and I feel like I have said this many times before - after both mat leaves, after my first cancer, but then I fall back into full days of meetings which make me feel frustrated and not accomplished.  This overlaps a bit with the working parent challenges...but I am putting a lot of thought into how we work and how to radically change it.

Inspiration:

That's all I've got (and I realize it's not much.)  Thanks for reading!

Speed Bumps - Not a Fan!

As a planner by nature (hence a career in Ops), I don't like when things don't go as planned. Spontaneity, going with the flow, figuring it out when we get there...none of these things are in my nature and cause me much more anxiety than joy.  It takes me hours and sometimes days to make decisions on the most basic things because I need to do the research, read reviews, ask people with experience on the thing.  I've always been this way. In junior high school I created a calendar of what I was going to wear for the next month and then made sure I had a nail polish color to match each outfit and I would do my nails every single night to match my clothes. When I complain because the day after my kids' birthdays they are already asking about their birthday for the next year - I ONLY HAVE MYSELF TO BLAME bc I model that forward-looking planning for them and say the same thing verbatim after every one of my birthdays.  "Next year for my birthday I want to..." Well, maybe don't get me started on my birthday because it's an obsession and I could write pages and pages on why birthdays matter. 💓

So anyway - Plans. They're good. They make sense of the world. They give you a map to follow. They preempt potential problems. They cover all the details and lead you to the next step and get you to your destination successfully.  I love plans!

Which is why, after posting about math and mind games a couple weeks ago, which outlined my treatment plan and the way I was quantifying it and getting through the insane number of steps in the plan, it SERIOUSLY PISSED ME OFF when the plan hit a Speed Bump last week when I had just barely started the 2nd phase of chemo.

Every chemo cycle I have to get bloodwork the day before chemo so they can make sure I am strong enough and my immune and organ functions are in tact enough to withstand another round of chemo.  Last Monday (7/13), after feeling surprisingly good on the new chemo, my bloodwork came back with my liver numbers having gone up almost 5-fold from the week prior, putting them WAY above the numbers they consider normal.  Once I saw the results, I started text stalking my oncologist with my 4,000 questions and he let me know that while it was not unusual for the liver to respond to the chemo, he thought I probably needed a week off to help my liver heal AND he thought they would need to change my chemo to the non-generic form which was less toxic to the liver.  My reaction - WHAT THE ACTUAL FUCK!  I was mad and I wanted to blow up that mother effing speed bump into teeny tiny gravel and demolish it into dust as I sped over it. Here is some of what went through my brain, most of which I actually texted to my oncologist in rapid succession in about a 10 minute period (and he kept me as a patient anyway.)

• Are we sure this isn't cancer in the liver?

• Can I sign a waiver and do chemo anyway?

• If we skip a week does the cancer start growing back right away?

• People I know have suggested Beet juice, citrus and other supplements as a way to detox the liver, can I take all the things and re-test blood tomorrow so I can still do chemo?

• Why is this happening TO ME? Did I do something wrong?  Should I stop eating meat, using salt, living with my kids who never stop talking (insert MANY other things totally unrelated to liver function which I also asked him about)

Needless to say I was NOT HAPPY!!  And despite my protests and willingness to sign my life away, I did have to skip the week anyway and I was not graceful or grown-up about it at all.

I spent the week in a pretty pissed off and mopey state - which really only punished me and my family. I overthought every single thing I was doing - is this good for my liver or bad for my liver?  What if my liver never recovers and I can't have any more chemo?  I could go on and on, it was a mess. I was a mess. I did a lot of crying and shrill yelling at the kids which is how my anxiety comes out.

I also did bloodwork again on Friday to see if my liver was recovering, and it was but very slightly...both numbers had come down maybe 10-12 points (and I needed them to come down 50-90 points.)  I went again on Monday and they had each come down another 10 points or so.  I once again started the text stalking to my oncologist and he again expressed concern about me continuing with chemo with my liver numbers and I again became a hysterical mess and it was a very dark road which I won't detail as based on the above I am sure you can imagine the drama well enough on your own.

That said - my oncologist did some research on recent studies, and consulted with other partners in his practice, and came to the conclusion that if I was switched to the non-generic version of the chemo, which would also remove the need to give me a steroid and other pre-meds, my liver would be fine and would recover to normal once the chemo stopped.  I am sure there are a million more sciency details to this decision, but Tuesday morning (yesterday 7/21) on the day my chemo was scheduled for 2 PM, he texted me at 8:18 AM to say we were on as planned.  HALLELUJAH!

Which brings me to the sort of point or lesson of this post.  I am not a big fan of platitudes - the phrase about if things aren't OK, it's not the end yet - I don't buy into that. I think some lives can be very difficult and glossing over it with feel-good phrases is a disservice.  When people tell me I will be fine bc I "fought" and "beat cancer" before or because I am "so strong" I appreciate the sentiment but I don't internalize it. I think the medicine and how your body reacts to it is like 95% of cancer survival...And I am so grateful for medical research and advancements in breast cancer treatment. I think mindset and lifestyle behaviors help, but I don't think any one person is responsible or in charge of whether their cancer treatment works or not. EVERYONE wants to survive cancer and for some reason some people don't and it has nothing to do with how much they want to live.  Anyway, sorry, that was meant to convey that I think I am a pretty realistic person and err on the side of facts, science, reason. 

HOWEVER, in this case I think I learned (or perhaps re-learned) an important lesson about being flexible and agile and not looking at a speed bump as the end of the road. In this specific situation, the speed bump actually landed me on what I consider a better path - with what some might consider a better form of chemo with better outcomes, less "extra medicine", shorter infusion times. It reinforced for me HOW MUCH I want the chemo as an important aspect of getting rid of the cancer. It's easy to complain and diss on the chemo and to look really forward to the day it is behind me (hopefully for good this time), but the thought of not being able to get it FOR ANY REASON was truly terrifying and devastating to me because I know it is part of the path to health. It brought me back to being grateful for the comprehensive treatment plan (even if it's hard) and to my body for being strong enough to tolerate it. The speed bump was in fact a temporary blip and my reaction to it was MUCH BIGGER THAN IT DESERVED!!! I hope I can keep that in mind if there are additional speed bumps in the path ahead (which I still hope there aren't - because PLANS ARE GOOD AND ARE MEANT TO BE FOLLOWED!)

As always thanks for the continued support and for reading my random ramblings!

Getting by with Math and Mind Games

I have always been pretty good at math and data. I used to tutor math students in high school. When I went to college and became a Comms and English major, I appreciated good data and numbers and used them whenever possible in my comms projects. In my career, as much as I loved being a recruiter, I was really focused on the numbers behind the magic, and ultimately (and pretty quickly) moved into programs and operations because it synced with my brain more than the softer skills used in recruitment. I designed a really early metrics program for recruitment which won an award. At Sonos, when I moved into People Programs, I couldn't let go of recruiting operations or analytics and always nose my way into those areas where I no longer have a job, just a strong interest that I can't let go of. I quantify EVERYTHING.

Which leads me to how I am getting through the freaking long road of cancer treatment (as previously described) which runs May 2020 to January 2021, which is to make it a bit of a math exercise and mind game.

Here is how I'm using math to measure progress and make it feel manageable. As of Monday night 7/6:

• I am 100% done with phase 1 of treatment! Phase 1 was the GNARLY AC drug combo (the assassin!) every other week for 4 doses over 8 weeks.  Each infusion was 25% of phase 1 and I knew generally where I was on the schedule of side effects each cycle.  In my mind I would be like, you are 90% done with the suffering THIS CYCLE, you can do this! Sometimes I'd even watch the hours tick by on my phone and be like probably 27 more hours of feeling like this, you can do this. (Of course there was also crying and whining, too...but the mind games and inner encouragement helped reduce some of that.)
• I am 25% done with ALL the chemo 2.0 infusions (Phases 1 and 2)! I have a total of 16 rounds and have finished 4 of 16 which is 25% of the total chemo needed. 
• I am 40% of the way through the time committed to chemo!  I will be doing chemo for 20 weeks, and I am 8 weeks in, so 40% done with the time investment in chemo.
• I am 20% done with active treatment for my recurrence! As of today, 8 weeks into chemo, I have completed phase 1 of 5 phases, so I consider myself 20% done with active treatment. 

So that's a little bit of how the numbers work in my brain - and how using the 40% data point might be helpful because it sounds like pretty good progress - ALMOST HALFWAY DONE!  So it becomes a bit of a game for me to look at the numbers and internalize the ones that resonate with me most around progress already achieved and what remains ahead.  (Maybe everyone does this in their life...I have no idea, I have always thought I was a bit of a weirdo with the quantifying of things.)

I also try to ONLY focus on the chemo phases FOR NOW because there is so much more to come after chemo it's overwhelming and little defeating to get my head wrapped around all the complexity and parts. Someone told me yesterday "cross bridges when you come to them" and I think it's amazing advice for people with anticipatory anxiety...just deal with the bridge in front of you right now and cross that, which for me right now is chemo and it's a long bridge.

What I have not done is ask about future recurrence risk, survival rates and length of time.  I just can't. I don't want to worry too much about a future outcome, and am trying to stay focused in the here and now. The prognosis has remained good with my doctors focused on "curing" me which means getting me to "No Evidence of Disease" (NED) this year.

What I'm struggling with: 

• Having very little "feel good time": The window of "feeling good" during the last AC window was almost non existent, it was maybe two days of feeling about 85% well and needing to have the courage to walk back into chemo where I know I am going to get knocked on my ass again is INCREASINGLY DIFFICULT every time. It's probably overly dramatic, but I told my sister I think of it as walking to the guillotine...like there isn't a choice, but you know taking that walk leads you to something extremely painful.
• My mom's health: My mom has been in critical condition in the ICU for 10 days now (not Covid-related, it's because of her heart). Having to make medical decisions on her behalf and chase down information with the hospital because we aren't able to visit in-person has been like another fulltime job and also sad and stressful to think of my mom in the hospital so sick and frail all by herself.
• Covid: All the new insights on the illness being vascular, seeing young people die, and watching the cases increase dramatically while people still don't wear masks is killing my soul. If you don't wear a mask, I take that to mean you think I should stay home or die because I am at high risk. It's disgusting to not care about anyone except yourself.
• Exhaustion: Not much to add here. Normal everyday stuff is harder, I have less ability and patience to help the kids. Exercise, which I have to do, is SO HARD, and I have to go slow and take breaks. Lots of people have reached out for phone calls or zooms and I just don't have the energy.
• Wearing a hat: It's so hot, chemo makes me hotter, they shut down my ovaries chemically which induces menopause and hot flashes, so I've got a trifecta of heat-inducing phenomena happening in my body and I am also mortified about the state of my bald with some peach fuzz nuclear war survivor head so wear a hat anytime there is a chance I will see a person, even in my own home, and it is GD hot and I sweat all the time.
• The costs of healthcare: Learning what's covered or not for both my mom and me has been depressing and really personalized the healthcare for profit problem. We need to do MUCH BETTER as a country in this area!

What I'm enjoying:

• Watching Romantic Comedies during chemo: I had not seen a new romantic comedy in probably a decade - since having kids. I watch one every chemo cycle and have done: Chef, Always Be My Maybe, The Perks of Being a Wallflower and Isn't it Romantic. Have loved all of them. My sister Tiffany gave me a long list of recommendations I am working through, would love more recommendations as well.
• Listening to books while I walk: Dear Girls by Ali Wong, Born a Crime by Treveor Noah, and Why Not Me by Treveor Noah is next.
• Reading: I have legit read probably 12 books during chemo. I haven't read that many in a year in FOREVER, maybe since having kids.
• Connections: Hearing from faraway friends who I have lost touch with. Connecting with other Young Cancer Survivors. Learning and being inspired by close friends in my life when I reach out and ask for help. Being humble enough to ask for help. Keeping my family informed about my mom and getting help from them on decisions. Having Chris' brother and his family in town has forced us to do some socializing while masked and social distancing...which we really have not done and would not have if they weren't here. That has been good for my soul.
• Not being bound by time: This is a weird one and I'm surprised I enjoy it since I am a major planner and scheduler, but not working right now, and not having the kids in back to back activities, means time sort of doesn't matter. Sometimes we don't eat lunch until 2, if the kids sleep until 10 we're like great, no worries, if I'm exhausted in the afternoon I nap (which happens a lot.)  It's freeing to live with the freedom to just sort of let things happen.
• Barre3: I have continued to take B3 online 3 times a week during non chemo weeks so I hope I can continue tht. It's hard, but with the streaming I can pause the workout when I need a real break, bring my heart rate down and get water. The change in format from Covid actually is better for me right now so I am grateful when I do get to get those workouts in.

I think that's it.  This is probably quite boring.  Here are some inspiring words I have found which are bringing me some light, plus a pic of my cat who is ON ME every second of the day right now and I love him so much. 

Thanks for reading. I love hearing from you, so reach out via text or slack anytime!

#ChemoLife

I started writing a blog post about community and belonging and it was feeling very academic, so I decided to just switch gears and post generally about how I'm doing (which is the question I get asked most often from people.)

Physically, there is some discomfort that I have to deal with - the exhaustion and nausea in the 4 days or so after chemo is MUCH HARDER than when I did chemo in 2014. I sleep a lot, I eat really bland food (and you all know how much I love food), and I have random sensations and feelings in all sorts of other body parts - like my head and eyebrows are tingly and itchy as all my hair starts falling out, and my spine and hips are achy because I get this medication which prompts white blood cell production in my bone marrow. So physically it's just a matter of getting through and finding the things that bring relief.

Mentally, for a person who tends toward being anxious, I am surprisingly calm and grounded right now, despite the physical stuff. I don't know why that is - maybe because it's my 2nd time doing this, maybe bc there is no choice but going through this, maybe I'm just too tired to get wound up. I'm honestly not sure and I am surprised by my general lack of anxiety. I worry about the endurance needed to get through the MANY phases of treatment, so I try not to think about it. I feel so tired and I have 14 more rounds of chemo ahead of me.  How can I endure that?  And, chemo is just the first of four phases in my treatment path. It's overwhelming if I think about it all together, so I am just looking at phase 1 - chemo - right now and will deal with everything else later. I just need to get through Phase 1!

Some things I'm struggling with:

• Guilt about putting my family through this again. It sucks for me, but it also sucks for my husband, kids, mom, sisters...to have to worry and for Chris to just watch me be uncomfortable and tired. My kids are totally getting jacked because of Covid and because outside of what the school is offering them, I don't have the energy to offer anything else, so they are entertaining themselves, which means LOTS OF ELECTRONICS. Before the cancer, I'd organize PE and art. Now I do nothing. 
• Angst and sadness about losing my hair and likely my eyebrows and eyelashes. It doesn't matter how many people tell me this is not a big deal, and I am truly not a vain person, it is a big deal to look so sick and have the world know just by looking at me that I have cancer and to just not want to look at myself in the mirror. I hate it. The process of growing hair back sucks too, and my hair was NOT NORMAL last time for over a year. (Did I mention I'm on a shower strike?  I refuse to shower, brush my hair or dunk my head in the pool so as to avoid helping the hair along with falling out. Back in 2014, I was like SHAVE IT. Guess I lost some of that sass.)
• FOMO, a lack of "purpose" and some boredom related to not being at work (although it is truly a relief to not have to worry about meetings, schedules and timelines). I MISS the work and the people like crazy!
• Some fear and uncertainty about the future and effectiveness of treatment. My oncologist likes there to be a rational explanation for recurrence and I am an oddball case. To get breast cancer twice in my 40s is unusual and they are hypothesizing that it's related to what they call "postpartum breast cancer" which is, regardless of your age when you have your children, if you get breast cancer within 5 years of giving birth, the cancer tends to be more aggressive and less predictable.  My kids were 1 and 4 when I was diagnosed in 2013. (not very comforting when they are working toward "curing" me again.)
• Some feelings of loneliness and isolation related to the above (hence the original post idea about belonging - like where do I belong right now???) It's weird to get chemo and to be 20+ years younger than anyone else there. I only know one other person who has had cancer and chemo twice - even the support groups and support pages on Facebook don't have people I can directly relate to. It's hard to see people resuming some aspects of normal living (post Covid) and to feel left behind as I continue to diligently self-isolate for the foreseeable future. I sometimes feel like I'm alone in this shit situation and I don't like it. I love seeing my people at work THRIVING and doing cool things, and I also feel sad I'm not contributing.

What's helping:
The ASTOUNDING kindness, thoughtfulness and generosity of people across my many communities. Every single day people make sure I know I am being thought of and wished well. This takes the form of texts, calls, emails, treats, meals, coffee, flowers, tequila, salsa, drawings, cards, tarot readings. A woman I work with who I have only met in person 2-3 times, but who is like a goddess of compassion, sent me the most exquisite bottle of tequila I have ever seen in my life. Several moms from the girls' school reach out every time they run to the grocery store to see if there is anything I need. I subscribed myself to a flower subscription service because I felt like I needed color and beauty in my house on the regular, but I didn't need to, because people have sent me bouquets of flowers every week since I was diagnosed (including the instructors and owner from Barre3, where I work out). We've received donuts and ice cream (thanks, Ceej!), popcorn sets, smores kits, brownies, apple strudel, See's Candies galore, soups, meal delivery gift cards, entertainment for the kids. People who feed people (my former boss Susan, my sister Tiffany, my friend Shannon) have brought over week's worth of meals. My friends from college, who I had not really connected with since moving to Santa Barbara, invited me to an ongoing zoom and now we are back in touch after all these years, which I love!

The positivity and confidence of my oncology team is also helpful. My oncologist's main directions to me are to get outside in nature to move and not to worry which makes it easy to focus on the essential things.

Anything that makes me laugh. My kids and husband and many of you are helping here, so thanks for being funny, as is binge watching the Unbreakable Kimmy Schmidt and watching romantic comedies during chemo.

I'll close with some pictures:

I had Chris take my picture Tuesday after chemo #2 so I had a final picture of me with hair. I should have done it before chemo because I look tired and you can see my hair is already thinning.  Whatever, this is the best I'll look for probably a year, or maybe ever again. :(  I actually try to look cute when I go to chemo, like looking cute is going to help my treatment work better. (Weird!)

I am not allowed to pee in the same bathroom as the rest of the family because of the toxicity of the chemo drugs, so Natasha made signs and posted them all over our front bathroom so I wouldn't forget. These crack me up every time I see them.

I posted this on Facebook, but we have a family of House Finches nesting right outside our French doors to the backyard and they make me happy. They're like a part of the family now.

This inspiring quote (thanks Lucy).  I love that it ends with being loved. 💗

For everyone who has reached out to ask how you can help:
My sisters created a meal calendar, but we haven't posted it yet because we had a lot of food supply already. Probably next week or the week after, we'll post it if people are interested in making or sending a meal our way. I think we'll just need help in the initial days after chemo when I'm exhausted, but we'll be clear on the dates.

I also love hearing from people in any form so keep sharing news, jokes, pictures, etc.  I appreciate every single one.

Keep sending healing energy my way.

I appreciate you and thank you again for reading.