What a difference a year makes

 Arching over everything is the ever-present knowledge and awareness of how lucky I am.

This time a year ago, I was past my bilateral mastectomy, had my tissue expanders, and was figuring out radiation, nipple removal, and watchful waiting.  Physically, I was cleared for all activity and was working on adjusting to my new body.

Quick recap of what the past year included:

• daily Tamoxifen (to block estrogen from reaching all my cells, including any potential cancer receptors)
• 1 appointment with an oncology PA, with whom I decidedly did NOT click 😒
• 1 appointment with an oncology PA who I ADORED, who has since left for a new position 😞
• October 2022 surgery to remove my nipples (given close cancer margins and other assorted oddities that were left behind after the initial nipple sparing mastectomy)
• Standard surgical recovery (which while standard is still a recovery)
• Starting over with tissue expanders as a result of the nipple removal
• April 2023 exchange surgery where tissue expanders are replaced with "permanent" silicone implants; fat grafting to smooth area around implants (fat was taken from my thighs, which sadly was not enough to be truly noticeable but enough to cause a good bit of discomfort for a while)
• Standard surgical recovery (which involved more discomfort that I expected-- I think I had too-high expectations based on what I had heard about how "easy" the implants are compared to other surgeries)

All this leads to today--my 3 month follow up with the plastic surgeon (and team) post-exchange surgery, and a check in with my breast surgeon, who I hadn't seen since October 2022.

I made cookies for the office, bought a plant, and wrote a thank you note.  I chose a lucky bamboo plant.  I felt lucky having found these folks, and God knows I've been lucky while on this adventure.  I made them rainbow/neapolitan cookies.  Admittedly, that was me "flexing" a bit.  They are a pain, but they are also impressive.  The plastic surgeon told me one of his staff is Italian, and she knows how difficult they are.  He actually asked me what was involved in making them.  Everyone seemed really pleased.  The PA hugged me after I told her how much it meant, her kindness, when she was the first one I saw in March 2022.  I almost cried then, but I didn't. 

Given Amelia's (and our family's) experience with NICU, given my experience with fibroids and breast cancer, I probably could write a book on the necessity (and unfortunate rarity) of patient-centered care.  I have lots of opinions, surprise surprise.

Right now, though, I'm living my best life this summer, again becoming accustomed to my new body, working on getting more healthy.  

Folks who read this may wonder what things look like for me going forward.  The fancy word in the cancer community is "survivorship," and I'm ready to embrace that now.  (I was nowhere near embracing it when it was thrust upon me in Sept 2022).  

• I've got at least another 4 years left of Tamoxifen (it could be as many as 9, but we'll cross that bridge after the first 5 are done).  
• At some point we'll check my bone density (I already have a baseline scan, and breast cancer hormone therapy creates a greater risk for bone loss).
• I will get yearly ultrasounds on my chest area to make sure all is well and will check in with my breast surgeon.
• I will see someone (PA or MD) in oncology very 6-12 months for the next 4 years.
• I will monitor for odd symptoms that could be a sign of uterine cancer (another risk of the med I'm on).
• I will get 3-d nipple tattoos (they really look amazing!).

I will be grateful every day.  I have twinges and oddities in my new physical state, but don't we all, at least by the time we reach a certain age?  Part of my gratitude goes to the incredible friends and family who have experienced this with me.  Love you guys a lot.  Thank you.

Julian of Norwich, English anchoress and mystic from the 14th century, has spoken a lot to me (not literally!) during the past year or so.  Below is a quote from her.

“He said not 'Thou shalt not be tempested, thou shalt not be travailed, thou shalt not be dis-eased'; but he said, 'Thou shalt not be overcome.”

Surgery #3

I thought it time for a cancer update, since there are some doings.

Because of close margins and atypical cells that we could not quite get rid of in my first 2 surgeries (May 26; June 3), I’m having a 3rd surgery in about a week.  My cancer is “vanilla,” but it appears my surgical history will be mocha-choca-latte.  

It was way easier to be “brave” for the first two.  Now, I know too much.  And I’m tired.

I know more about my surgical recovery, and while the May recovery was a breeze, the June recovery was far less so.  The actual surgery this time around will be more like June than May.  Here’s hoping the recovery won’t be, b/c I don’t have time for any more of this b.s!

I don’t have time for cancer, you know?  I’m far too busy to deal with surgical drains and limited arm/upper body use.  I do not want to miss my daughter’s cross country league championship (and maybe even sectionals, which are a week later).  

What may be the worst of all is my inability to carry out what I see as my day-to-day responsibilities, the simple things like household chores and going to work.  I feel like I’m not carrying my weight, and I HATE that.  It’s like house arrest.  Which is so very ironic, b/c there is nothing I like more than being at home.  Except I’m home and literally not allowed to do much of anything.  I guess it’s all about choice and control.  I don’t do well when those are taken from me.  I suppose none of us do, but I think I’m an extreme case.

Worries:

• I’m hoping my pre-surgery covid test comes back negative (unlike the last one).  It’s on Thursday.
• I have a confirmed history of pretty severe post-anesthesia nausea.  While that is better than post-anesthesia psychosis, it’s not a picnic.
• Pain management is a challenge in terms of those lovely little drains.  This partners well with nausea.
• And because there is going to be more tissue removal, I’ll have a couple of more pathology reports heading my way.  I think these will be reports 6 and 7, but I’ve kind of lost track at this point. 

I appreciate exactly how lucky I am.  Truly.  And I am grateful.  I’m grateful that my cancer is vanilla, so very, very grateful.  I’m grateful that I was led to a surgical team in which I have complete trust.  My experiences with medical professionals have been hit and miss at best, so I do not take a good medical team for granted, not at all.  I’m also so grateful for the communities I have built around myself.  There have been a few folks in my life who haven’t done so well with my diagnosis.  That is a reality I choose not to dwell upon, and it’s easy to focus on the positive because so many, many folks have been so very wonderful.  Thank you.

In closing, though, as lucky as I know I am, I’m also convinced that even vanilla cancer is no walk in the park, and I’m kinda tired of the surgical experience. xoxo 

Because it's too much to ask for clarity... [poor communication re: radiation]

Below is the message I sent to my radiation oncology team today:

****************************************************

Hello!

I just had a good phone call with Dr. XX [my radiation oncologist's resident], but I am left with some confusion. We never discussed my rt breast in my 7/27 appt. We discussed left, and I was under the impression that all the info we were waiting for was to make a decision about my lft breast, since the rt was never mentioned. Today's phone call was all about the NAC [nipple areolar complex] of my rt breast so I'm very confused.

My current questions are:

1. what is my risk of recurrence w/o radiation?
2. Am I correct that all my surgical margins are negative, but close?
3. What is the size of my surgical margins AFTER the tissue re-excision on 6/3?
4. What was the specific info provided by pathology that we were waiting for after my 7/27 appt? What is its relevance to a potential treatment plan?

I'm confused about treatment for lft and/or rt breasts, and I am very hesitant to take on radiation therapy unless there are clear, strong measurable indicators that it would be very beneficial/necessary. Thank you!

**********************************************

Let's see when/what I hear...

Radiation update

Time for a quick and dirty update. 😊 

I'm feeling good most of the time.  Minor side effects from my hormone (blocking) therapy.  They largely amount to just an inconvenience so far.  A bit fatigued, which is a little concerning since I'm off of work right now, but it might just be laziness. 😉  Still sore and somewhat limited range of motion, but I exercise regularly, and I think I'm pushing myself in appropriate ways.  Aug 3 will be 2 months since my expander placement.  Every practitioner I've seen is pleased with my condition and progress.

I had my consult with a radiation oncologist last week.  Everyone talked her up as being awesome, and she lived up to the hype, which is a treat.  The appointment was an hour and 45 minutes long.  😴 30 minute history review with a nurse, 15 minute wait while the nurse reviewed the history with the doc, then an hour with the doc and her resident.  

Long story short--while I do not have any of the traditional markers that indicate a need for radiation (large tumor, spread to lymph nodes, positive surgical margins), the radiation oncologist wants some additional information from pathology before she rules out radiation because of 3 concerns with my  circumstances: pre-menopausal, EXTENSIVE DCIS (stage 0 cancer), and close surgical margins.  She also wants me to consult with a rheumatologist because of my history of reactive skin.

Doc said I'm in a "light gray" area.  She used that particular phrase twice.  She did create an entire radiation plan and walked me through EVERYTHING I need to know about it, but she is clearly not ready to recommend that course of action.

She also said that radiation cuts risk of recurrence by 50%, whatever that risk of recurrence is.  

Clearly, if there were no question and radiation were obviously recommended and necessary, I would do it.  That is not the case here.  And even if I'm cleared by a rheumatologist and my radiation doc gets what she needs to form an opinion, even if she did "recommend" radiation, it would be just barely, from what I can tell.  

I'm left with the question:  what cancer risk reduction makes it worth the short and long term side effects (and inconvenience) of radiation therapy?  Especially since if I were to do radiation, I would be doing it after the window in which it is most effective.   (Research indicates radiation should be done no more than 12 weeks post-mastectomy.  Given staffing issues and delays, the earliest my doc will have more detailed pathology results is the end of August.  I wouldn't be able to start radiation till October, at the EARLIEST, more than 16 weeks post-mastectomy.)

Once I consult with the rheumatologist and have follow up communication with radiation oncology after pathology details come in, I will ask all my questions, carefully consider what is best for me, my future and my family, pray, and make a decision.  

It would be nice to have everything settled, but I've learned the past few months that breast cancer is a chronic health condition, not something I can really be done with.  I still have way more good days than bad, which is all anyone can ask for, cancer notwithstanding. 😊  One thing I continue to be happy about is that every time I see a new practitioner, they tell me that I made the exact right decisions in terms of my treatment choices.  I was so very, very worried that I would have regrets, and thus far, I have not a single regret, and I am so very grateful for that.  

Just as I am grateful for the village that surrounds me.

Surgery updates

Time for an update.  I still have multiple posts in the works, but for now, I’ll begin with a post about where I find myself today.  I will return to the other posts in flashback. 😊 

I decided on a nipple-sparing, bilateral mastectomy with implant reconstruction.  Bilateral means I had both breasts removed.  I hope nipple-sparing is self-explanatory. 😏  I had my mastectomy on May 26, 2022.  My implant reconstruction surgery will be in two phases: stage one involves surgery to place tissue expanders.  Stage two will be surgery to remove the tissue expanders and replace them with “permanent” implants.  My tissue expanders were placed on June 3, 2022.  At least one of my work-in-progress posts revolves around the details of my mastectomy and the decision-making progress.  

I spent one night in the hospital after my mastectomy.  As is typical for me, anesthesia caused all kinds of problems with nausea.  Because I struggled with it upon waking, they pumped me up with more drugs, so my post-surgery memories are more hazy than usual.  Surgery was about 4 hours long.

My expanders were placed a week and a day after my mastectomy, so technically my reconstruction is “delayed” b/c they were not placed in the same surgical procedure as my mastectomy.  My week post-mastectomy was MUCH better than my week post-expanders.  Once my drains were removed and my expanders filled with saline, I became MUCH more comfortable. 

As of this writing, my activities are still limited in terms of lifting, exertion, and repetitive movements, but I am well, walking, doing modified pilates session, and performing my range-of-motion exercises.

It took more than a week for each of my pathology reports to be completed (yes, that’s plural–one biopsy pathology, with addendum; two surgical).  My breast surgeon reviewed them with me today, and it was a very good discussion.  I will review them again with my medical oncologist next week.  Today’s discussion with my surgeon involved her recommending that I consult with a specific radiation oncologist regarding some “complications” in my most recent pathology report.  So, I will also review the pathology with a radiation oncologist, currently scheduled for later in July.  

I will have more details and concrete treatment plans after meeting with my next two specialists.  I am not alarmed or worried.  With the exception of my initial cancer diagnosis, mostly all my news has been good.  My cancer was slow growing, and it did not spread to any lymph nodes.  God guided me in my choice of medical practitioners, and I am blessed in my care team (and looking forward to meeting the new folks).  I’ve also been blessed beyond belief in the friends and family around me (there another post there, too). 

All will be well.

Curveballs

I’m not yet comfortable with sharing the particulars, but I have made decisions regarding my surgical and reconstruction options.  I will share them at some point, just not yet.  

The almost-2-months since my diagnosis have involved a lot of evolution.  It’s probably true for everyone’s cancer journey:  just when I think I’m settled on a course of action, something happens that requires readjustment.  I’ve done a lot of adjusting since Feb 26 (when I discovered the lump).

There is a good deal to balance when you’ve received a health diagnosis, cancer or otherwise.  First, of course, is the primacy of life and health.  Any decisions I make about treatment need to minimize cancer and its risk and maximize my health and quality of life.  When you’ve minimized cancer, lots of other factors come into the notion of quality of life–self-image; self-esteem; personal values, lifestyle, etc.  Sometimes, those secondary factors lead to surprising decisions.  Additionally, I am looking to make decisions that minimize the possibilities of the need for future surgeries down the road.  

Now that my decisions are firm, I’m ready to move forward.  Immediately! 😁 But the bureaucracy of scheduling is forcing a delay.  I did not react well to this initially.  I supposed I’m entitled to that.  I’m a doer, and it feels like it’s been a long slog of 2 steps forward, 1.5 steps back, as I inch toward progress in managing this situation in which I find myself.

It’s also hard because I am such a planner, and I feel like my life is on hold as I figure out and try to get started with my treatment.  We canceled a DC trip we really didn’t need to.  We are in limbo about our scheduled cruise and trip to FL for August.  Will I be well enough to perform my June vocal recital?  And I can’t make plans at work because I don’t know when I’ll be going out on leave.  Ugh!  First-world problems, I know, but that is how I feel.

But I also continue to feel grateful, especially to all of you.  It may get repetitive.  I don’t have enough different ways to say it.  You have made a difference in my cancer journey.  Thank you.

I know the title of this post is “Curveball,” but I loved the dodgeball image so much I had to use it.  It captures my feelings pretty accurately.

Putting it together

 An in-case-you-were-wondering post…

Evidently, it is fairly typical for surgeons to take “spring breaks” with their kids, following a school schedule, so last week was kind of a week of stasis, and as much as I’m now ready to move things along, that week of stasis was good for me, because I was able to sit with my thoughts and circumstances.  The time really allowed me to settle in, and I feel peace about where things are headed.

Until I have actual procedures officially scheduled, I’m too superstitious to say more than this.  And I’m sure there will be screaming moments of doubt and anxiety along the way.  But for now, I’m happy with the decisions I have made regarding my treatment options and my medical practitioners.  I’m grateful that I am in a position to make decisions, that I have options, as difficult as the process might be.  I’m also very grateful for the amazing support I continue to receive from so, so many.  

I have what I hope is my final plastic surgical consult this week.  If all goes as I hope, things will then be scheduled.  I will keep you posted.