Andrea's blog

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Double-Mastectomy with Reconstruction Surgery Plans

After a false start back in June, we are back on track with a surgery schedule (assuming there are no hiccups between now and then--and let's be honest, this entire year has been an awful case of the hiccups).

I recently met with my breast surgeon (who will do the double-mastectomy) and plastic surgeon (who is in charge of the reconstruction process) and we have a surgical plan and a date -- though I hesitated to give anyone the date in the 2020 world of cancellations and rescheduling. 

But here it is:  The planned surgery date is Monday, November 2nd, 2020.  Its the date I would have chosen if I could have picked it myself, which makes me think it'll probably change.  They didn't think it was likely to change, and so we'll plan for that, but clearly I've been jaded by making useless "plans" this year.

As I describe the surgery plan, first you should know that I was given the option of a lumpectomy and radiation, a single mastectomy, or a double-mastectomy.  I did not want a lumpectomy because it would leave me lopsided, or require a partial reconstruction with body tissues or implants.  I also wanted to avoid radiation if possible, and eliminate the potential for having to have a mastectomy further down the road if recurrence were to happen.  My mentality was just do it all now, make them even, and let's try to move on.  

Once I decided on a double-mastectomy, I could then choose whether I wanted to do a nipple and skin sparing mastectomy (keeping the nipple and skin envelope for implants) or a simple mastectomy (taking the breast tissue, nipple, and skin envelope and then later reconstructing or tattooing nipples).  As explained to me, the medical chances for recurrence were minimal in one option over the other, so it was truly my choice to do whatever I was most comfortable with doing. 

Both my oncologist and my breast surgeon said the main goal in deciding is to do what would make me feel most assured moving forward and not look back in 6 months and wish I had done something different. For some people, that means keeping your own natural breasts and monitoring them regularly with mammograms, keeping a watchful eye on any recurrence of the original cancer or other breast cancers.  For others, it means removing all the breast tissue, knowing if recurrence were to happen, it wouldn't be local in the breast, which would require a mastectomy at that point (if the cancer were to return in the breast and not elsewhere in the body). 

I fell somewhere in-between.  Because of the location of my tumor, the fact that it was not in my lymph nodes, and I tested negative for the BRCA1 gene mutation, I have the option of a nipple and skin-sparing mastectomy  That means that I can keep my natural "look" with an implant placed inside the current skin pocket.  Obviously it isn't quite that simple, but that's the gist. 

This procedure does leave a tiny bit of breast tissue behind the nipple, where cancer could technically recur. But, by keeping that little bit of tissue, I will be eligible to continue to get regular mammograms to monitor any changes (which would not be done if all the tissue was removed as in a simple mastectomy).  So, I get most of the assurance that the breast cancer can't recur locally and then require a mastectomy in the future, plus the regular monitoring of any new or recurrent local cancer through mammograms, and I get to look "mostly" like my old self when reconstruction is complete.  So that's where I've landed.  In 6 months, could I regret keeping my nipples? Maybe, and only time will tell.  But I felt like I wouldn't regret taking all the breast tissue now, eliminating the need for another surgery down the road if mastectomy then became a must rather than a choice.

Next, we could start talking about the actual surgery.  My breast surgeon describes the mastectomy as a small triangular incision at the sides of my breasts, removing just a tiny bit of skin near where the tumor on the left side was. She'll then scoop out and remove all the breast tissue underneath the skin and behind the nipple, which goes all the way up toward my collarbone.   I can't imagine that's a pleasant feeling. Ouch.  

She will also remove and test the nearest sentinal nodes (the first few lymph nodes where a tumor drains) and we hope that's all the lymph nodes she has to take.  The more nodes they have to take, the higher chance I have to deal with lymphedema, which can be a permanant condition. Since this is on my dominant (left) side, that could potentially be pretty devastating for me.  But since my earlier lymph node biopsy was negative, and we're pretty certain the tumor has shrunk down to indetectible on the mammogram, I'm feeling pretty good about what they'll find and have to take.

Then all of the tissue from both sides will be tested by pathology and I will get results back (probably not immediately) telling whether there were any cancer cells still present or anything else concerning in the chest wall or lymph nodes, and whether I will need any further treatment after surgery.  

Next the plastic surgeon comes in to do his part -- the first phase of reconstruction. I've chosen to have silicone implants in a two-phase process involving temporary saline expanders inserted over the chest muscle and held in place with a processed "skin subsitute" material that forms a sling and helps hold the implant in place. Then the expanders are gradually filled with saline over a period of weeks or months to stretch your skin to the desired size.  Then the expanders will be removed and replaced with permanent implants in a second surgery a few months later.   This process is done in two steps to let your body settle and heal from the mastectomy, so you can have a little more say in the size of implants you end up with, and to make sure the tissue is all strong and healthy enough to support the implants and there are no other complications.  

He gave me about a 25% chance that if everything looked strong and healthy I could wake up from surgery with the permanent implants already in place and skip the expander process.  I'm not counting on that, but boy would that be great to avoid the process that many people have lots of compliants about.  I've heard the expanders can be lumpy and hard and uncomfortable and the expanding process can be painful, etc.  So, if I can safely avoid that and a second surgery -- I'm in favor.  But, it sounded like that's not their usual mode of operation and a more conservative and slower process generally goes better with less complications.    

Incidentally, I did not consider a flap surgery to use tissue from my own body (hips, belly, back or thighs) for reconstruction because 1) I don't have that much to give in those areas, 2) it's a much more difficult surgery and 3) I wanted to leave that as an option many years down the road, should I decide to remove whatever implants I get.

So what size will I get?  I don't really know, and a lot of it will be determined by the fact that I am doing a nipple-sparing mastectomy.  He said "we are at the mercy of where they point."  Okay, then--Add that to list of things I never thought I'd hear!  I told him, "I'd like to be a little bigger than I currently am, but not so big it's all people notice when I walk in a room," and his nurse laughed.  We figure she's seen some excessively large requests!  In all seriousness though, because there will be no breast tissue surrounding my implants, if I were to gain or lose weight, my breasts would stay exactly the same size.  Since it's unlikely I'll be losing any significant amount of weight (enter possible menopause effects), I want to err on the side of a little bit larger so they stay proportional to the rest of my body.

So, now we wait, and prepare as much as we can for surgery, learn about recovery (which will be between 4 and 8 weeks), and brace ourselves for this next hill in the rollercoaster of a year we've had.  I'm very thankful to Ben and his complete support in this process, who does not care ONE BIT what kind of surgery I decided to do--as long as I am comfortable with it.

And ultimately, I am comfortable with this plan.  It doesn't remove all worry of recurrence, but nothing would.  If the cancer wants to come back, it's going to find a way to come back and there's nothing any of us can do about that.  But it won't be for lack of trying to beat it down and cut it out.  

Triple negative breast cancer in a localized region after treatment generally has a 91% 5-year survival rate.  And actually, my specific MammaPrint results put my 5-year survival percentage at 93% with hormone therapy and chemotherapy treatment.  Since my cancer also had a small percentage of estrogen positive receptors, I'll also likely be taking an anti-estrogen hormone treatment pill called Tamoxifen for 5-10 years to prevent any estrogen-fed cancer cells from returning.  The good news is that after 5 years, if it hasn't come back, the survival rate increases.  Most triple negative cancers will recur within 3-5 years if they recur.

So, we are throwing everything we can at it, and trusting that God is in control and whatever the outcome is, we will handle it, because He'll guide us through it.

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Post Chemo Hair Progress

My "pinned" haircuts are looking MUCH different than I would have ever expected these days....

I can hardly believe that hair this short required a cut--but it did!  I needed to shape it up a little bit, and try to create the illusion of length on top as I start the awkward process of growing out my hair from completely bald during chemo.  First phase -- the fade, which looks a lot like one of my brother Jake's best haircuts.

I'm pretty thankful that my hair is coming back in thick, but I'm still hoping it goes back to it's original dark color and gets curly again as it gets longer.  Though I'm not hating the natural silver highlights...

I'm tentatively planning for a progression that looks a little like this, keeping the sides shorter and growing out the top until it's long enough to start going back to my chin-length curly bob.

One thing I did NOT expect in all this hair-losing trauma -- is how much I don't miss the maintenance!  No scrunching, no need for 4 different products, no dry time, no brushing or braiding or bad hair days at all when you have a little pixie cut.  So, we'll see...maybe I'll stick with short?   I don't love the current look, but I like it well enough to work with it--and I absolutely appreciate no longer looking like a cancer patient.  I actually get a lot of compliments on my no-nonsense haircut, and it has taken me a while to not feel the need to give a long explanation for why my hair is so short and to just say "Thanks!"  I'm doing my best to work with what I've got!  It still surprises me when I look in the mirror though.

Though I didn't expect it to (my doctor had warned me otherwise), my hair started growing back about 4 weeks after I finished AC chemo and right before I started Taxol chemo in July.  Then, it just never fell out again.  I did shave it one last time in July, but it has been coming in pretty reliably ever since.  

My doctor looked surprised every couple of weeks when I'd walk into his office with a fuller head of hair than the last time he'd seen me.  I'm not an expert, but I kind of wonder how much Taxol was really doing for me, if I was having almost no side effects and my hair was growing in spite of it's presense in my body.  Hard to know, but it did seem to play at least a small factor in his decision to let me stop short of the full 12 Taxol treatments because I was having some issues with neuropathy (which by the way have seemed to go away at this point, thankfully.)

Watching my hair grow back feels kind of symbolic in this process.  It's a slow outward progression and transformation back to "me", which parallels the slow (and sometimes awkward) internal processing of what the heck I've been through in the past 7 months.

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Breast Cancer Awareness

Pinktober has a whole new meaning this year.  Consider me aware!!  
 
 
You can be young, eat healthy, exercise often, not smoke, avoid alcohol, have no family history, not have the genetic mutation and still be the 1 in 8 women who has breast cancer.
 
Statistics mean nothing to the individual--and breast cancer DOESN'T discriminate. The earlier it is found and treated, the better your prognosis. Get a mammogram. 
 
 
Thank you Ben for my new favorite t-shirt! 

 

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Taxol Chemo #10: DONE with Chemo! 10 Tips for Getting Through It

And I'm DONE --with 12 sessions of chemotherapy! 

Since April 2020, I've been through 4 bi-weekly Adriamyacin/Cytoxin and 10 weekly Taxol treatments (we stopped short of the normal prescribed 12 because of some neuropathy that had begun) and hopefully that's the last of any chemo I have to do!

Yesterday marked 6 months since the day I received my diagnosis.  In some ways it feels like the longest 6 months of my life, and in others it's like a really long weekend that is finally coming to an end.

I was excited to show up today for my treatment, and decided to dress the part in my breast cancer t-shirt. I brought all of my nurses a couple dozen Krispy Kreme donuts to celebrate (they were supposed to be the fun new fall flavors, but in true 2020 fashion, they were all out) and it feels fantastic to check this off as complete!

Even though this is far from the end of my overall treatment (I have at least two surgeries, reconstruction and 5-10 years of anti-estrogen hormone treatment left to go), it feels like a personal accomplishment to have made it through what was extremely scary and unknown when I first heard the word "chemotherapy".   I was terrified of what chemo would do to me, how hard it would be, how sick I would feel, and (keeping it real) what I would look like.  

For anyone just starting out on this scary path, I wanted to send out a little bit of encouragement.  These photos were taken 6 months apart, during which time I was diagnosed with triple negative breast cancer and completed 12 chemotherapy treatments.  

No, it has not always been easy and I did not always feel "cute" or "strong" and there were days that were just plain awful. But after it's all said and done, I'm still ME.  The length of time, the side effects,  and the changes in my appearance that I was so scared of weren't as terrible as I feared they would be.  

And as you can see...while there are definitely some changes (most of which aren't visible) I don't look THAT different than I did when this all began.  I'm still standing, still smiling, just a little taller and more confident than I was then!
 
 
What has been the *most* surprising to me throughout the chemo portion of my treatment is how do-able it is.  I didn't do anything special or magical to get through it, and there's no way to know if my lifestyle had anything to do with how chemo affected me.  However, I like to think a few simple healthy practices were helpful along the way--most of which have nothing to do with cancer or chemo, but definitely helped me handle both.
  1.  Start off in good shape.  Don't wait until you're sick to try and get healthy.  Do it now and you'll be in a better position to handle whatever is thrown at you. I fully believe that already having good exercise and decent eating habits (no one is pretending I was a nutritional role model) gave me a huge boost in being able to handle the drugs and side effects.
  2. Stay well hydrated.  People laugh at the gallon jug of water that I try to finish every day (and most days I do!), but I think that was so helpful in curbing my veracious steriod-induced appetite, flushing the chemo toxins through my body, preventing sore muscles and aching joints, keeping my skin healthy, preventing dry mouth, and handling the constipation from steriods.
  3. Increase protein.  Whether it helped or not, I upped my protein intake over the past 6 months and ate lots of baked chicken tenderloin, hard boiled eggs, and a nearly daily post-workout protein powder shake.  Overall my nails have remained strong and unaffected, my hair started growing back pretty quickly once I was off the Adriamyacin/Cytoxan regimen, and my muscle tone was able to be mostly sustained. 
  4. Take a daily multi-vitamin.  Choose a good one.  Take it daily.  I believe it can fill in the nutritional gaps where your diet is lacking. A probiotic is a good idea too.
  5. Eliminate alcohol and reduce sugar.  I mean, there's already enough poison in your body. Don't make it harder to recover by feeding it more.  I had no problem with the no alcohol portion of this tip, but had trouble in the middle of the taxol treatments with stress-eating way too many sweets.  When I cut back, I could tell a significant difference in how much better my body felt and specifically in a feeling of decreased anxiety.  That's funny since most people drink alcohol and eat sweets when they are anxious. It turns out those things (over time) make me anxious, and reducing or eliminating them helped me stay much calmer and more even-keeled.  Once I realized that drinking alcohol and eating junk food weren't actually solving or relieving my stress (but instead were contributing to it), it made it much easier to resist them--I mean, not always, but more often.
  6. Get plenty of sleep. A regular bedtime and wake-up time really helps my body run well.  I function best on 7-8 hours a night, from 10pm to 6am.  When I don't hit that on average, I notice that I start feeling more sluggish, needing more coffee, craving more sweets, and feeling more cranky and irritable.  Following each chemo treatment, I allowed myself extra rest and naps to recover (and during AC to just get through the nauseasness and awful-feeling days).
  7. Get regular exercise.  I just enjoy exercise, which I know isn't everyone's favorite thing to do.  But for me, being able to exercise 5-6 days a week meant that I felt "ok" and like "me" while I was going through chemo.  The physical benefits (energy, strength, posture, reducing muscle and joint stiffness, and flexibility) were almost second to the mental and emotional need I have to being able to move my body everyday.  Since I had to take several short breaks from my exercise routine to accommodate the effects of AC chemo and to travel for family emergencies, I could tell that not exercising regularly made me feel much worse than when I was exercising daily.
  8. Stay ahead of the side effects.  Take the stool softeners, anti-nausea pills, claritin and use mouthwash pre-emptively!  Your stomach and bowels and joints and mouth will thank you.  Hard candy helps with nauseasness.  Lotion and chap stick are your friends.  
  9. Delegate to others. You can't do all the things you were doing before chemo began. Killing cancer cells isn't a full time job, but it does require a lot of your time and energy. Some things will have to slide, be postponed, or be done by others.  Delegate where you can--and if you're willing to share your experience with others, people will come out of the woodwork begging to help you in any way possible!  It's wonderful...Take the help!
  10. Let go of expectations.  Everyone's body responds differently to chemo.  What I dealt with may be very different than what you have to handle.  But if you go into it with an open mind and no expectations for exactly how it will go, what it will do and how you will respond, you're more likely to be able to roll with and adapt to whatever comes.  It's kind of like the first night on a cruise ship....keep your body loose and move with the ship instead of fighting it and you're less likely to get seasick.  When your body is tired, rest.  When you are hungry, eat.  If you are cranky or emotional, give yourself permission to feel that way.  The good news is, the cancer card works almost everywhere and people will give you a lot of leeway if you aren't able to do and be all the things you are used to being at the capacity you are accustomed to.  Now is the time to give yourself lots of grace and permission to take a break when you need one.
If you'll notice, I didn't mention my hair at all in that list, and it's one of the things I was the most scared about changing!  It absolutely was a big and emotional moment to shave my head, but it turns out (after a week or two to adjust) it was more liberating and freeing than traumatic.  I'll be glad when I have a full head of hair again, but having a bald or buzzed head ended up being a good visual reminder every day that I am going through a battle that requires a shift in my attention and energy, at least for a period of time.  I didn't want to wear all the wigs and scarves I collected ahead of time, because those made me feel more sick, and like I was trying to cover up and hide my battle.  Personally, I have found strength in being open and transparent throughout this process.  I understand that's not for everyone, but it was crucial for me.  (Hats though...those were fun.  I definitely like wearing hats!)
 
Usually a "before & after" is accompanied with a photo showing off a dramatic change, but in this case, I'm thrilled that my before and after are almost indistinguishable.  Throughout it all, I've been able to maintain, and in many ways improve, my physical and mental health and fitness over the past 6 months.  I've learned to practice more balance and to allow myself the grace and permission to ease up on my output when my body said to slow down--whether that was by physically resting my body, taking a few days (or weeks) off of work, saying no to activities or responsibilities I would normally try to tackle, and just accepting my own limitations. What was important to me is that I didn't let that need to slow down lead to a full stop.  Once I had recovered and rejuvenated, I picked back up and tackled the next day, the next challenge, the next workout, or the next tragedy (if you've followed my story, you know what I mean).
 

I hope to take that same attitude into my next challenge -- surgery.  I will most certainly have to slow down even more, modify my daily life and routine in many ways, and be willing to accept some physical limitations, at least for a season.  I feel like going through chemo has prepared me to do that well.

Everyone's journey is different, and not everyone will be as lucky as I have been, but if you are facing the challenge of chemotherapy I am here to tell you that you can do this.  It won't break you.  You will still be YOU.   

 

And PS. According to my mammogram in June, the chemo worked and there was no evidence of cancer shown in the imaging.  Hopefully that has remained true throughout the past few months and all this is just throwing all medical science has at ensuring we get all the microscopic cells both systemically AND surgically.  For now at least,  the long term prognosis looks good!

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Taxol Chemo #6 through #9

Taxol #6 went well and was uneventful on it's own.  

But then life got complicated again. 

I skipped a week of treatment between Taxol #6 and #7 because I was in the middle of a(nother) family emergency. I was in Southern Illinois with my mom, who has been dealing with an unexplained infection and was hospitalized in a really unfortunate ending to an epic summer cross-country camper trip.  She went from driving her truck and camper across the country with my two kids to being bedridden IN said camper in Southern Illinois with fever and body aches for a month.  Everyone (friends, family, and doctors) had assumed it was COVID and told her to quarantine, even though she tested negative 4 separate times!  That meant the infection she had continued to grow untreated for several weeks while she weakened.

She was finally hospitalized when she noticed a bump on her chest and still had not improved after a round of oral antibiotics.  She had surgery to drain what turned out to be an abcess in her chest and had about a million tests and scans done which have eliminated several things, but unfortunately have yet to provide any real answers for a diagnosis.  

After a week in the hospital in Carbondale, Illinois she was moved to St. Louis University Hospital in Missouri for more expertise on her case. After an additional two and a half weeks in that hospital, she has finally been moved to an acute rehab facility in St. Louis.  While we still don't have answers for how or why she got this infection or why she continues to have fevers, at rehab she will *hopefully* begin rebuilding her strength and mobility and finish off a 6-week IV antibiotic regimen and continued care for the wound vac on her chest to close up and heal the surgical incisions (we've been told that process can take anywhere from 1-6 months).  All of this has been and will continue in St. Louis, where NO ONE in my family lives, including her, which has made it extra challenging and stressful.  It's going to be a long recovery process, and I am her main caregiver (though my brother and aunt have been very helpful as well). I am happy and honored to be that for her, but I didn't really have room for that kind of responsibility on my plate this year.  2020 doesn't care.

All of that to explain why I missed a week of treatment because I was in Southern Illinois/St. Louis for a week and a half, then rushed back home to Birmingham to get treatment #7 before heading BACK to St. Louis for another 4 days, only to then rush right back again to Birmingham for treatment #8.  It would have been nice to just have my treatment at the SLUH Cancer Center next door to where my mom was hospitalized, but insurance and care doesn't work that way....so I traveled.

I should mention here that my doctor has had no problem with me missing a Taxol treatment week here and there, and in fact that's very common for anyone whose white blood count drops too low between treatments and needs an extra week to recover. So I was not concerned about missing one week, but wasn't personally comfortable missing several or increasing my dosing to go in less frequently for treatments.  Since things were going well on Taxol so far, I didn't want to rock the boat, even though my doctor said we could do a higher dose every two weeks instead if  I needed to be out of town.  I was worried about side effects increasing and wanted to avoid that as much as possible since I'd had basically none so far.  Well, maybe not none, but very few and very minor and difficult to distinguish whether chemo drugs or life stress was causing it -- a little fatigue, occasionally having trouble catching my breath after workouts or walking up big flights of stairs, some very vivid dreams, increased appetite and slight weight gain (from a combination of steroids and stress eating, for sure).

After treatment #7, I was only home for a couple of days, so I spent the day after treatment working and painting signs before I left town again for an indetermined amount of time.  I noticed while I was painting, that I was having trouble using my fingers and thumbs to pick up letters and to hold my paintbrush.  It was subtle, and I was preoccupied, but I did notice what was probably the first signs of a Taxol side effect -- neuropathy -- the side effect I've been most concerned about from the beginning on this type of chemo.  I didn't think much of it that week, since I had so much else on my mind, and headed back to St. Louis for more hospital time with my mom.

I did notice that throughout the following week my hands and elbow were hurting much more again, cramping up and having joint pain. My feet were also beginning to hurt more, the plantar fasciitis in my arches was acting up again, and the balls and heels of my feet felt bruised and sore.  I began having trouble during my workouts with some of the faster running and side-to-side transitions that didn't used to be an issue and even more trouble gripping and holding onto dumbell weights than normal.  I assumed that was from the several extra hours per day on my phone and texting,  and from jumping and doing HIIT workouts on concrete and hard floors (instead of that lusciously bouncy Burn floor).  And ultimately it's entirely possible that's all it was causing those ailments -- I just can't know for sure.

I've gotten tired of masked photos, so the strategy is this -- get a long drink of water from my giant water jug and THEN take my weekly photo before I put my mask back on for the rest of the treatment session.

But, after Taxol #8, I was definitely having noticeable numbness, tingling and pain in my hands, fingers, toes and feet, particularly on the Saturday and Sunday immediately following that treatment.  I may have freaked out a little bit--or a lot.  Neuropathy can get worse with each treatment and while it *can* improve, my hands are my livelihood and the thought of 4 more treatments hindering my hands and feet even more made me very nervous....especially since IF it was reversible, that could take months.  I had an appointment with my oncologist the following week (right before Taxol #9) so I planned to visit with him about what the best plan moving forward would be.

Also, after #8, apparently I missed my window to fall asleep before the steroids they gave me kicked in at full speed, because on Friday night I was awake until after 5am!  That was the first real insomnia bout that I've dealt with so far, but that can be really common.  I did end up sleeping about 4 hours that Saturday morning, but then stayed awake the rest of the day and continued to feel the amped up highly caffeinated steroid effects through Monday.  Unfortunately I wasn't able to channel that energy into anything productive because I was having trouble focusing and trying to rest and de-stress (not work), so I finished up watching the rest of season 4 of This is Us instead.

Then there's the hair situation.  Though I've heard that you are supposed to continue to lose your hair on Taxol, that has not been the case for me.  While it's not exactly growing fast, my hair is definitely growing.  It's not the right color or texture yet, and maybe it'll need another buzz before that comes in, but it's definitely still thick and not patchy, so I'm very grateful for that!  

Now I feel like instead of looking like a cancer patient, I look more like I chose this no-nonsense haircut.  Frankly, that's exactly the kind of haircut I've needed this summer with all that's been going on in our lives.  Even though it doesn't quite fit my personality or look like I'd like it to look (I mean, I had some good hair pre-chemo), I've appreciated the fact that it's been slowly coming back. To think I expected my hair loss would be the most difficult thing to deal with this year!   Since I shaved it all off back in May, I've barely given it two thoughts since I didn't expect it to be there at all, and by the time life calms down for me to really notice it, it might be time to try and put some kind of style into it!  

Which brings us to Taxol treatment #9, which I'm currently receiving as I write this.  I had an appointment with my oncologist today and when he saw my head full of hair and heard my concerns about increasing neuropathy in my hands and feet, he decided two more treatments would be enough.   He seemed a little surprised that my hair had grown so much, and mentioned that because I was on a low dose of Taxol and it wasn't causing any hair loss, it wasn't going to be productive to reduce my dosage and continue through the rest of the 12 treatments.  Instead, he said he wanted to do today's (#9) and next week's treatment (#10) and call it complete.

I can't say I'm too disappointed in that cancelation in 2020.

So, now I will hope that the neuropathy doesn't increase much (or at all) in the next two weeks, and then we'll go back to discussions and planning with my surgeon for the next phase of treatment--surgery.  I've learned not to put firm dates or expectations on anything this year, but if you're looking for a ballpark timeline, I'd say it's *possible* I'm looking at having a double-mastectomy surgery and the first phase of reconstruction as early as the end of October 2020 -- just in time for Breast Cancer Awareness month.  

 

Overall, I'm feeling pretty good about how all of this has gone and is going.  With all that has been happening in the world and in our own family, I just haven't had time to worry about whether the cancer is still there, if it will grow, if it will come back, if treatment is working, etc.  I've just been following the treatment program and letting the doctors and drugs do their thing without worrying about it.  Maybe that's ultimately a blessing.  I've had no time to fret about that because there have been way too many other things to emotionally respond to this year--

  • a pandemic
  • my father passing away
  • job insecurites for both Ben and myself
  • my mom in the hospital in a state none of us live in with a mystery infection that can't be diagnosed
  • COVID policies and procedures dictating our lives everywhere we turn
  • a staggered in-school and virtual hybrid schedule to navigate.  

As many people have said to me with a look of shock and pity and empathy over the past several weeks -- That's a LOT.  And it is.  But thankfully I'm not carrying it all myself.  Somehow, some way, God will get us all through all of this and he'll take care of us exactly how we need to be cared for.  We've seen it already in about 1000 ways, so I'm trusting that will continue, and I'm not worrying about making sure it looks the way I think it should.  It's just not my show to produce.

I joked to several friends recently that if I'm supposed to learn that I'm not the one in control this year, consider the lesson learned!

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John J. Nokes: Cancer in Common

Just a couple of weeks ago, on July 19, 2020, my father passed away from cancer.  That's not easy ANY time, but it sure is a punch in the gut when you're also going through your *own* cancer treatment.

Daddy was originally diagnosed with cancer in the summer of 2019, and went through chemo and radiation last fall.  His cancer responded well to the treatment and his prognosis was good, with a 95% success rate.  While his treatment was aggressive and very difficult on his body, throughout the winter, he was feeling better and improving in energy and endurance every week.  In December 2019, he had clear scans and we were making plans to see him in April 2020 in Tennesee for a volleyball tournament.

When I was diagnosed with breast cancer in March 2020, he was the person I wanted to talk to about it.  While his cancer was different, he had recently been through similar treatments and had to face the challenges of getting physically sicker and weaker in order to get better---something I was terrified for in my own life.  

Daddy and I are a lot alike.  We don't like to depend on other people.  We want to be strong and capable and nonburdensome.  He was encouraging to me.  He told me to take it one day at a time--have just one goal for each day.   I took comfort in knowing that if he could do it, I could too. (I also vowed to allow people to help me and to let people into my experience -- something I didn't see him do much of, but that I knew was important for me to do in order to get through this well.)

When he told me in late April that his cancer had returned and spread to other parts of his body, it was a devastating blow.  Not just because HE was facing metastatic cancer and unsure about what his future looked like, but because his predicted success rate statistic after his treatment was high (95%), and so is mine (93%).  Statistics don't matter for anything other than knowing what the most likely best route is to take for treatment.  What happens to YOU and your cancer doesn't care one bit about the statistics. It's impossible for me not to compare...and that was hard.  Is hard.  And will continue to be a weighty pressure on me.

Is it strange to say though, that because I'd just been faced with my own mortality through my diagnosis, while he was also facing his, I was able to bond with my dad in a way I don't think anyone else in the family was able to do in those last two months.  As he  began his radiation and immunotherapy treatment, and had his head shaved because of hair hair loss, and while I was going through the worst weeks of my AC chemo treatment, we spent May and June talking pretty candidly with each other about how we felt, what we were each going through, and accepting and making peace with whatever each of our lives would look like moving forward. 

I understood him when he said he'd had a good life and he didn't want to prolong miserable treatments and suffering in the name of living if it wasn't allowing him to *really* live.  He didn't give up.  He didn't give in.  He was just ready to go when it was time.  Even though I am his daughter and I wanted him to live a long healthy life, I was able to step into his shoes and know exactly what he was feeling and understand it--from *his* perspective, not mine.

So, when the radiation treatment just couldn't keep up with his cancer and complications began that put him in the hospital only one treatment into the immunotherapy that we *hoped* would prolong his life, my prayer for him was simple -- "Please heal him so he can LIVE and be the Chief he wants to be, or take him quickly so he won't suffer long." 

My prayer was answered--not with my first choice of response. But because I *knew* Daddy was ready, and didn't want him to suffer, I was at peace with the answer we were given...and I know he was too. "Keep the faith," and "I'm in God's hands," are phrases he'd repeat often.  

I never could have had that feeling of peace without also going through my own treatment at the same time.   We never would have had those last real, candid, and honest conversations without our circumstances being what they were.    

So, in the middle of my own grief and this jacked up, messed up, tragic and chaotic world of 2020 (that I pretty much HATE), I'm also immeasurably thankful that Daddy and I had cancer in common.   


 

2

Taxol Chemo #2 through #5

It's been a while since I've done a cancer treatment update.  That's mostly because my cancer treatment has taken a backseat to the rest of life--which means two things. 

  1. The rest of life is actually more stressful than cancer.
  2. My cancer treatment is going well and not affecting my day-to-day much at all.

Rounds #2 and #3 went about the same as round #1 of Taxol chemotherapy.  

My second treatment was July 9th, and with the exception of feeling a little foggy and woozy that evening from the Benadryl and a tiny bit of aching joints, I felt pretty good.  The next morning I woke up bounding with (probably steroid-induced) energy and used it to catch up with a friend on a hilly 1 hour walk. 
 
 
Taxol #3 on July 16th had me a little sleepy and woozy for a few hours that night, but by bedtime I felt fine and woke up the next day feeling completely normal again with an extra boost of steroid energy.  So far so good...
 
 
The biggest thing I'd noticed by this point was that my eyebrows and eyelashes were significantly thinning, which I've heard can happen a few weeks *after* finishing AC chemo. So I'm not sure it's even related to the current chemo drug at all.  But, at the same time, the hair on my head has started to sprout!  It was so uneven and wispy looking though, that I went ahead and shaved it all again on July 7th and started fresh, and it started coming in a little darker, but still super soft and baby gosling like.
 
Having only a couple of eyelashes was a pretty sad look, but the magnetic and glue-on lashes looked even dumber (especially when I wasn't actually GOING anywhere), so I just lived with it. I also learned to draw in eyebrows decently well after trying several different eyebrow fill products that *didn't* work well for me at all (one looked great at first, but then faded to a green color that was NOT pretty). I ended up really liking the It Cosmetics Brow Power Universal Brow Pencil that a friend of mine gave to me.  Thankfully, almost as soon as they all fell out, they started growing back in, and within a couple of weeks I had short little stubby eyelashes growing in and fuller eyebrows again.  Something makes me think that won't be the only time those all fall out...but we'll see...
 

In between treatment 3 and 4, I had a two week break from chemo.  It was pre-approved by my doctor, because I was planning to pick my kids up in Chicago after their month-long summer RV trip with my mom.  BUT, that break actually allowed us to be able to leave town a week earlier than we expected in order to be with my family. 

My father had been sick and hospitalized for two weeks and it became suddenly apparent that he was not going to get better.  So the week of July 17th to 26th was a really rough (but also wonderful in many ways) week.  We were traveling, tired, emotional, stressed, not eating or exercising well, and grieving the loss of my dad.  But---here's the amazing thing:  If I'd had surgery when I expected to in July, I might not have been able to make that trip--and I NEEDED to be there with my siblings that week.  God knew.  

When we returned from Chicago, we got back to as normal of a routine as we could in this weird world...now filled with not only cancer and COVID, but now and grief and loss as well.  2020 sucks in so many ways.

At my 4th Taxol treatment, I had the opportunity to meet someone new.  Usually everyone around me in the treatment bay is very quiet and quite a bit older than me. But that day I got to visit with another mom in her 40s who looks a whole lot like me with her bald head, big earrings and smile.  In fact, when Ben saw her leave the building, he thought she WAS me and had to do a double-take! 

She's going through her own breast cancer treatment, and it was kind of nice to chat with her and each of us understand a little better than most what the other is going through.  Unfortunately, her story is at a much more serious stage.  As she was finishing up her treatment plan from her initial diagnosis, she found out that her cancer had spread to her spine and brain, making it metastatic, stage 4, triple negative cancer, which is a very grim diagnosis. Even still, she sounded hopeful about her treatment options, determined to do all she could and faithful that God would take care of her and her family throughout it all.  I felt privileged to have had a moment with her.  

I went home that day feeling a much heavier weight of this whole situation than I normally do.  Talking to her was another very sobering reminder of what this disease does, especially on the heels of my father passing away the week before (also from a very aggressive cancer.)   At the moment, I don't really feel like that's where my story is headed, because so far my cancer has responded very well to treatment and didn't even show up on my last mammogram. But, I have to acknowledge that there's more than one possible outcome to all of this, and cancer recurring or spreading, though in the smaller percentage of possibility, is still a possibility.  Even when my chemotherapy treatment is finished and surgery is over, this possibility will hang over my head for the next 5 years while I take an estrogen hormone supressant drug (which is also when the most likely chance of recurrence would happen), and then probably for the rest of my life.  Definitely sobering.  In general, I'm not dwelling in that space long though.  And you shouldn't either.  

...moving on....

My 5th Taxol treatment was uneventful (although I waited forever to see the doctor beforehand for a regular meeting with him).  But since I'd been feeling physically great throughout all the other treatments so far, with little to no side effects, there wasn't much to discuss.  He did mention that my hair would likely keep growing, while some continued to fall out.  When I'll have a REAL head of hair still remains a mystery.

Right now my chemo treatments take up about 2 and 1/2 hours when I go. I get all sorts of suggestions from people on how to pass the time...but I've found it's the perfect time for me to catch up on my blogging. So I prepare all my photos ahead of time and spend my treatment time at the cancer center doing all of the journaling for those posts on my laptop. Since I'm also drugged up on Benadryl during that time....it's probably not my best work! But the chair is comfy, the room is quiet, it's something I enjoy doing, and distractions are minimal--so it makes my treatment time productive and time moves quickly! It's kind of like hanging out at a coffee shop without all the great smells. 

So far, on Taxol, I've been able to maintain a 5-6 day a week workout schedule, at pretty high intensity (with the exception of my week in Chicago, where I only exercised twice).  I've been doing the daily Burn Boot Camp workouts 5-6 days a week, so it's a mix of high intensity interval training, weights, cardio and body-weight exercises.  

I get up by 6 am everyday, go to bed around 10:30 or 11pm, and have plenty of energy and mental clarity throughout the day.  I've continued painting and had plenty of work to do when we returned from Chicago, but didn't have too much trouble catching up and physically accomplishing all of it.  

Being able to keep up with all of that and have good energy levels is my personal gauge for how I am feeling, how my body is responding and how much treatment is affecting me.  So far, it's been a breeze -- hardly noticeable, particularly in contrast to the AC chemo treatment, which was awful for 5-6 days after each treatment.

However....this week (after Taxol #5), I have noticed that I am much more tired by the afternoon, often need a nap, and feel more physically fatigued and weaker during my daily workouts.  I'm not certain that's related to the chemo, but I'm trying to make note of it and let myself rest a little more often if I need to. 

I've had a lot of additional emotional stress over the past several weeks. School is about to start (kind of...on a hybrid in-person/virtual schedule), activities are beginning again, and our calendar is filling back up quickly--while also changing constantly as COVID policies dictate.  That alone is enough to drive anyone crazy.  Life just feels overwhelming.  It's really difficult to properly process the BIG things (and there are a LOT of BIG things to process in our lives right now) when there are so many little things that have to be taken care of every day.

Historically, since I was diagnosed with Graves Disease in 2018, any time that I am emotionally stressed, my body physically fatigues.  So perhaps the extra tiredness is just that?  Or perhaps Taxol is finally starting to take it's toll.  Only time will tell.

For now though, we are trucking along...

2

Together We Fight

Several weeks ago (right around the time of my 2nd AC chemo treatment), the ladies at Burn made me a shirt that said "Together We Fight"  and asked me to take a photo of myself in it.  I didn't know what what it was for, until I saw a post in our Facebook group, announcing a pre-order for shirts to anyone who wanted to buy one to support our family.  I thought maybe 20 or 30 people would buy one, but as I watched the preorder comments roll in, I was absolutely overwhelmed with how many people chimed in to order.  Over 170 shirts were bought and made just for me.  

This is love.  This is sisterhood.  This is BURN.  

In the past few months since my breast cancer diagnosis, the Hoover Burn family has loved and cared for me in literally hundreds of ways and moments.  My "Burn sisters", as we call ourselves, have shown up continuously with gifts, phone calls, cards, flowers, text messages, prayers, meals, [social-distancing] visits, words of encouragement and support in leaps and bounds. Today they gave me the money raised by selling these shirts and I was given the opportunity to thank many of them in person. 

Each of these women have touched my life in personal and intentional ways and it was VERY cool to see that come to fruition in a visible way through these shirts.  These women are more than just my "workout buddies".  They have become friends and sisters as well.  I truly feel the army of support behind me and it means the world!

 
The Burn staff cried for me when I told them I had cancer, and have stood by me from the beginning, even though I was no longer able to work with them (I was the Social Media Manager for the Burn Boot Camp in Hoover at the time). 
 

Kortney (above) has coordinated weekly flower deliveries to brighten up our house during quarantine, and many of those have been from friends I've made through Burn.

Kati, Janelle and Magen (above), along with Heather and Ashley (not able to be there today) have been a constant support for me in the day-to-day prayers, complaints, and conversations.  They are some of the very first people I told about my diagnosis and (along with family and other close friends) and are the real deal.  You often hear that some friends will disappear and fade into the background when cancer comes around, but through this process I've found out that I have incredible friends--and not just a couple of them, but more than I can count on two hands!  They don't just show up every once in a while, they show up every day, any minute and I'm so thankful for each one of them.

Today, I was particularly grateful to Jim (Burn's owner), who not only has been kind and generous and supportive of me himself, but who has allowed the Burn community that he helped facilitate rally around me unconditionally.

As I go into my 6th of 16 chemo treatments tomorrow, I can't emphasize enough that taking care of your body is WORTH the effort. Physical endurance, strength and cardio health make everything in life just a little easier to handle.  You just never know what challenges are around the corner for you. 
 
I firmly believe that my efforts over the past several years in staying fit and active have played a huge role in getting me through this challenging season so far, both physically and mentally.  And to date, I've continued to be able to exercise throughout my chemo treatment, at a similar intensity level to pre-diagnosis, something I didn't even know could be possible.  I had weeks where I could barely move, but overall I've been able to bounce back well so far after each treatment, and I'm so thankful that's been the case.
 

I love being able to share my experience here, to reveal a little of the mystery and unknown and fear that comes with a cancer diagnosis and treatment. Not because it's so unique, but because it's more common than we are aware.  If you haven't already been affected by cancer in your life (and many of you have), someone close to you may be fighting this battle one day. Love them. Talk to them. Encourage them. Hug them [if we aren't in the middle of a pandemic]. You have no idea how powerful and meaningful it will be.

0

Taxol Chemo #1

After a month off of treatment, and a switch of the schedule, I went back for my first of 12 Taxol chemo treatments last Thursday. 

I did MUCH better than the last appointment I had in that building (which was just to see the oncologist).  That time, I was nauseus the entire time, from the parking lot through the end of the day -- and I didn't even GET a treatment.  So I was pretty worried about how I'd feel going back for more chemo.  But other than some pacing and a little bit of anxiety right before I left for the appointment, I handled it well.  I did let Ben drive me though, which ended up being a good choice.

These treatments start with several pre-meds to help prevent  and treat all the side effects -- Tylenol, Tagamet (antacid), Benadryl, Kytril (anti-nausea) and Decadron (anti-inflammatory).  Then the Taxol, which takes about an hour.

As soon as the Benadryl hit me, I started feeling a little dizzy and woozy.  The nurse said that was normal, and the feeling lasted for several hours, so I'm VERY thankful Ben was planning to pick me up.

About halfway through the infusion, one of the nurses came in and told us all that someone had sent us an ice cream truck and we could wheel our poison-poles out to the front parking lot and pick out some free ice cream!

I had NO desire for ice cream, but so appreciated the gesture that I immediately set out on the little field trip! It definitely made for a positive spin on a day when I wasn't sure how everything would go or how I would feel.

Honestly, the ice cream tasted terrible and I only ate half of it.  But it definitely helped me add some fun and levity to the situation.

I felt fairly similar to how I've felt in the past leaving the cancer center after a treatment -- puffy, tired, a little off-balance and that Benadryl had REALLY knocked me out more than normal.  So I'm VERY thankful Ben was there to drive me home.   I essentially fell asleep on the way home, and immediately got into bed.

But, about 2 and 1/2 hours later, I woke up feeling pretty good!  Still slightly off-balance and puffy, but I was able to eat dinner, wasn't nauseus at all, and my head felt so much clearer.  

How I'd be affected by this drug remained a mystery, so I've waited a few days to blog about it.  But four days later (Sunday) other than Thursday afternoon, I've felt completely normal!  

I woke up early on Friday morning and went for a long walk in the neighborhood with a friend, worked all day and had plenty of energy.  Saturday I slept in pretty late, but again, woke up feeling great, did my normal HIIT workout, and had a fun 4th of July with family and friends.  Today, I cleaned the whole house and did a few loads of laundry.  So it's been business as usual.  The only side effect I've noticed so far has been slight constipation from the anti-nausea meds, but otherwise, I feel totally fine so far.

Until I know how and whether my white blood counts will bounce back on their own after each of these treatment, I'll probably try to keep a little more "social distance" than I did in June, but I'm hopeful that infections and sickness won't be a problem--though it's certainly a  general concern for anyone getting chemotherapy.  So I'm *trying* to heed warnings and be cautious, even though I feel good and want to SEE people and DO things.

Maybe my doctor wasn't lying and this really *will* be significantly easier to handle!  So far so good...1 of 12 complete!

2

Have a Plan, But Remain Flexible

Have a plan, but remain flexible.  

I say that a lot. It's a good thing, because my treatment plan is changing.  Not so much WHAT the treatment is, but the order of events is changing.

From the beginning, my medical oncologist has said that I would do 4 rounds of AC chemo, then have surgery, then do 12 rounds of Taxol chemo, then have implant exchange reconstruction surgery, and continue with Tamoxifen anti-estrogen hormonal treatment for five years.  Whew, that's a mouthful.

At my last appointment with him (two weeks after my last AC chemo), he checked my white blood cell counts, which looked good, and he passed me along to my surgeon for phase 2.

I met with my surgeon the following week (three weeks past my last chemo at that point), ready to learn about exactly the procedure for surgery, to be referred to a plastic surgeon for reconstruction consultation, and to schedule a surgery date for early July, while my kids would be on a 4 week long road trip with my mom and Ben would be home with me and available to be my "nurse" post-surgery.

I hardly got a word out when she told me that unless for some reason a patient *isn't* responding to the chemo at this point in treatment, she wants them to do ALL of their chemo before having surgery. 

UGH!  Why didn't she tell me that back in MARCH? Why didn't my medical oncologist know that and prepare me for that as a possibility??? 


Let me rant for a minute....because I have cancer, and it's my blog, and I can. 
 

Why does the entire world seem to think it's perfectly acceptable to constantly change plans at the drop of a hat--even though it will affect the lives and schedules in a domino effect of all of the people involved?  

My "Have a plan, but remain flexible" motto came from years and years of everyone everywhere just cancelling get-togethers, rescheduling games, changing practices, showing up late, backing out of responsibilities, changing the rules, changing the players, and expecting us to just adapt and show up. 

If I charged a personal "cancellation fee" I might be an *actual* millionnaire. 

Somewhere, somehow, I learned to write on the calendar in pencil, not expect *anything* to go as it was originally planned, and to roll with the changes.  To be honest, that has made me MUCH less irritated when it all changes and shuffles.  So I guess it's a good motto--but it still hacks me off sometimes.  Clearly I'm not perfect at being flexible.

End rant.


Back to my cancer treatment...

That means I'll have 12 weeks of chemo BEFORE I can have surgery (likely at the end of October/early November), which means I can't go through any of my reconstruction this summer, which absolutely means I'll have to have my second surgery sometime next calendar year, because it has to be 3-6 months after the initial surgery.  I had REALLY hoped to be through all of this by December 2020. Ain't gonna happen. Now I'm hoping for by June next year.

There is good news. The cancer definitely responded to the AC chemo.  My tumor is no longer palpable, and the surgeon couldn't even find the clip from my biopsy in an ultrasound, so she ended up sending me to get another mammogram to locate it, which they did, and it sounds like they didn't see much of anything else of concern in the imaging.  I am glad to know that all that Red Devil misery wasn't in vain.

Now, after double-checking with my medical oncologist and conferring with him and him conferring with my surgeon again to make sure that this absolutely IS the way it has to be....

I'll be starting chemo back up next Thursday.  

So I guess I'll adapt to THAT schedule instead.

I'm irritated that I could have just continued with chemo for the past 3 weeks and have been almost a 1/4 of the way through that series this week, but instead have extended the whole process by a month. 

I'm irritated that now it looks like I'll be having surgery in the middle of the best time of year, and that school and sports and holidays and LIFE will be happening all around and I will likely miss out on more.

I'm irritated that everything will be so much more difficult to coordinate for the kids' school and extracurricular activities after an October/November surgery than it would have been in the middle of July when NOTHING is happening.  

But I guess it all boils down to inconveniences, not TRUE problems.  And there are benefits and a plus side to this schedule too. 

  • I've gotten to enjoy June, feel great, see friends and family, and go to the gym--a cancer "break" if you will...
  • I've been able to continue exercising and hopefully will be able to over the next 12 weeks during Taxol chemo. 
  • I'll be able to keep working (hopefully) for the next several months during Taxol. (Mobility to paint and wrestle wood boards after surgery may be an issue for a couple of months).  
  • I'll have more time to research my surgery options.   
  • Surgical drains will be easier to hide in sweatshirts than tank tops.  
  • My hair might start to grow back by November?  

As for how I feel right now? 

Physically, pretty great.  I'm a little fatigued, just from all the extra activity in my day and weeks.  I have noticed that I have a slightly higher resting heart rate (comparing pre-chemo numbers to during and post AC chemo numbers), but I've even seen that come back down almost to my old normal now that I've been chemo-free for almost a month.  I've been working out 5-6 days a week--not at my peak performance level and I definitely get winded faster than I think I should--but definitely still at a pretty high intensity 45 minutes a day, so I can't complain about that.  My eyebrows and eyelashes are definitely thinning and will probably go completely at some point with Taxol starting back up.  Being bald is WAY simpler than having hair.  I'm enjoying the benefits of that, for sure, which I NEVER would have expected to hear myself say. 

Mentally, I'm mostly good too.  Getting this change of plans news was definitely hard, but I have already felt myself relax today after the decision was more official.  I'm getting used to the new plan. 

I think it helped a LOT for me to vent a little here.  So thanks for listening. :) 

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