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.

Genetics, some background and what we ALL should know

It was overwhelmed first hearing I had cancer.  My reaction was to immediately break down everything into next steps.  What could I do?  What should I do?  How could I begin to move through this?  The sooner I could move, the sooner I could move through, to the other side.  I just wanted to be done.  And if I could schedule surgery right before spring break, all the better.

In figuring out first and next steps, I needed to chunk everything into manageable pieces of information and action.  I can't process as much as I used to, and I can't process as quickly, so I worked to focus on necessary things first.  In using this approach, I did ask about genetics, at several junctures, and based upon those conversations, I determine it was something I could put off. That wasn't quite right.  It wasn't until about 3 weeks after I received my initial diagnosis that someone (2 someones, actually) told me that yes, I should really think seriously about genetic counseling, what that means, and why I should do it.

It surprises me how poor communication about genetic counseling/testing is.  I imagine we've all heard of it, at least if we have had folks with cancer in our lives.  We may have also heard about it in the media.  Prior to some recent education, I held the following assumptions about genetic testing:

1. I thought it was cost-prohibitive, multiple thousands of dollars to do a gene panel. 
2. I thought it was unwise from a health insurance pov; if I got genetic testing and something came back as a problem, I was afraid I’d be denied coverage or that coverage costs would skyrocket (thanks again, US healthcare “system"). 
3. I thought there wasn’t enough cancer in my family or not the right kinds of cancer to make testing worthwhile. 
4. I was told that genetic testing would not change my treatment or my screening practices in any way, since I already have a cancer diagnosis.

Everything I thought was WRONG! What I was told was only partially correct. Let's dig into some details.

1. Costs: Given my age at diagnosis and my family history, in all likelihood insurance will cover my testing (a panel of over 70 genes).  If insurance does not cover it, it will only cost $250!
2. I was also afraid that if I got genetic testing and mutations came back that it would negatively effect my health insurance.  Now, it could negatively effect life or long term care insurance, but thanks to the Genetic Information Non-discrimination Act (GINA), my workplace and my health insurance cannot discriminate against me based on my genetic information.
3. We have a straight line of cancer in my family going back 3 generations, though I am the first breast cancer patient, to my knowledge.  According to my genetic counseling, these different types of cancer can have a link, especially if one has Eastern European heritage (as I do).  That, plus my age of diagnosis mean genetic testing is appropriate in my case.
4. Lastly, there is the question of genetic testing and my treatment and my life after cancer.  Statistically, most breast cancers are NOT connected to genetic mutations.  But…5-10% of breast cancers are hereditary and based on gene mutations.  There are the relatively well known BRCA1 and BRCA2 genes, but there are others.  If breast cancer is connected to one particular genetic mutation, radiation therapy is contraindicated.  Another gene is connected to colon, prostate, and breast cancers.  Knowing this information could affect my surgical and treatment choices as well as the kind of screening I do post-treatment.

Now, I'm not saying that everyone should get genetic testing. That is a very personally decision, and I respect that not everyone wants that information. (I don't necessarily understand that choice, but everyone has a right to make it.) I do think, though, that genetic testing needs to be demystified. Of course, I think that about a lot of things. 🙂

Sources: https://www.ashg.org/advocacy/gina/

https://tinyurl.com/y3hcysev (Breast Cancer Risk Factors You Can't Change)

Genetics and moving forward

Tldr: my cancer genetics came back clean.

About 2 weeks after the blood draw for my genetics testing, the results came in.  When I asked the caller to hold on while I got a pen and some paper, she said, “sure, but you won’t need it.”  Everything was negative.  I got the “Cancer Expanded” panel done, and the 77 genes in that panel all came back normal.  No mutations in BRCA 1 or 2, CHEK, PTEN, or any of the others that were tested.  Of course, genetics are always changing, so it is possible that 15 years from now a mutation will be discovered on a different gene, and I may have that one, but as of right now, there is no science that indicates a genetic link to my breast cancer (in spite of my own breast cancer under 50, and colon, prostate, and kidney cancer in the family).

This is good news for Amelia and good news for life and long term care insurance down the road.  And it’s good news in terms of my cancer; my treatment choices do not need to be driven by genetics or a greater than average chance of more cancer.

Of course, it does make me wonder a little–why me?  My BMI is mostly healthy.  I’ve never smoked, only drink a couple of times a month.  I don’t think I have the usual risk factors for cancer, so…

The biggest relief to me (other than Amelia) is that I do not need a bilateral mastectomy.  I wasn’t quite ready for that.

So, moving forward, we treat the cancer surgically and a few lymph nodes will be removed to see if any cancer spread to them.  I will definitely be on hormone therapy for a minimum of 5 years (Tamoxifen, from what I hear, though I’ll know for sure after I speak to a medical oncologist).  Once the tumor and lymph nodes are removed, they will be sent to pathology.  Pathology results will determine any need for radiation or chemotherapy.  And mixed in there will be reconstruction, which is going to be more involved and take more time than I initially hoped.  

I can’t rush through to the end of this and pretend like it never happened.  So, I’m going to make damn sure (in as much as it is possible), that when my active treatment is done, I feel good about where I end up.

Surgical Consult #3; Plastic Consult #1

 Tldr: If you want to feel weird about your body, talk to a plastic surgeon. Also, if it wasn't true before, this post totally counts as oversharing. #sorrynotsorry

Two more good consults today–breast surgeon #3 and plastic surgeon #1.  Plastic surgery consult #2 is later this week, but the way that practice works, I will not see the surgeon; his PAs do his consults.  If they can answer my questions, great.  If not, that in itself may be an answer.

I am very grateful that I am at a point in this journey where I have all good medical options, well, at least options as good as the cancer and my anatomy allow. 😉 

Today’s plastic surgery consult was fascinating.  It is so interesting to be going through this process as someone who is relatively content with her body.  The irony is not lost on me.  This is an opportunity to remake my body.  Having this opportunity makes me realize I’d kinda like to keep it the way it is, flaws and all.  😏 That is no longer an option, so how can I make this work for me in the best way possible?

If you don’t want to hear the anatomical details about my breasts, you should probably stop right here.

Deflated, pendicular, petite, uniquely shaped, widely spaced, pointy, triangular.  These were all the words used to describe the girls, poor things.  They are small enough that a lumpectomy will leave my left breast “deformed” (that has been the word used by at least 3 of the doctors).  There simply isn’t enough volume to the breast for there to be a cosmetically successful result in terms of a lumpectomy, and it would be cosmetically unsuccessful in multiple ways (asymmetrical, pulling down, etc.).  There are other options, but the one that appears to be the best at this point would be a single mastectomy, removing the affected breast, reconstructing that area post mastectomy, and doing some work on righty to make her match, in so far as that is possible.

Today’s breast surgeon described my cancer as “vanilla,” the kind of cancer you want, if you have to get cancer.  If my cancer is vanilla, the anatomy of my breasts is some kind of crazy sundae, with odd toppings.  They in no way make any kind of implant that fits the natural shape of my breast, at least according to plastic surgeon number #1.  It will be tricky to find implants the correct size.  It will be challenging to make the girls match.  Plastic surgeon #1 didn’t use the words "tricky" or "challenging", but they were clearly implied.  The girls won’t be twins, but hopefully they’ll be closer than cousins.  Sisters?  (The plastic surgeon did use this analogy.)

One random, good, thing about Plastic Surgeon #1– he appreciated how prepared I was for the consult, commented that it was more of a conversation rather than he and his PA talking at me.  I told him–doctors either appreciate me as a patient or they don’t. 🤷🙂

So, that is today’s update.  Early afternoon Friday is another (hopefully last) plastic surgery consult.  With that, I hope to have all the information I need to move forward and start the journey of putting the cancer behind me.

A few brief words about my poor, maligned breasts--  I fought long and hard to breastfeed my NICU baby.  With support from 2-3 very important people and while surrounded by lots of naysayers, I persevered.  The girls did a fantastic job of feeding my daughter for 22 months, and for that, I will be forever grateful.

Surgical consult #2

 Hi!  I’ve got a bunch of different posts in progress but none quite in shape to put up yet.  Here’s another quick and dirty update.

Busy week ahead on the cancer front (and on the work front and on the church front and…you get the picture).  I had a surgical consult this morning and will have its matching plastic surgeon consult Wednesday afternoon.  I have another consult with a different surgeon Wednesday morning, with what I also believe will be a matching plastic surgeon consult at that time.

Busy, busy!

Today’s consult went very well.  (And thank the sweet baby Jesus, because I’m honestly still reeling from the first, unsuccessful consult.  Feeling sick and panicky every damn time I need to see someone about this crap. Stress-related high blood pressure? It's a real thing.)  Today’s doc really took time to make sure I had a good grasp of my situation as well as how she works.  The patient is completely in the driver’s seat when it comes to choices for treatment, but this particular doctor is very clear in what the risks/percentages are.  So much of cancer, like life, is a risk tolerance/risk-benefit exercise.  She also has an opinion regarding my options and clearly shares it, without pressure.  The surgeon spent about 40-45 minutes with us, and I feel like we have the beginning of a game plan.  It can only be the beginning because I’m still waiting on genetic information and the perspective of the plastic surgeon.

Spoiler alert: small breasts have a large impact.  😁 Basically, the fact that there is less material to work with affects the choices one has as well as the end cosmetic result. In short, small breasts are a PITA (pain in the ass) in general, and that is no different when it comes to breast cancer. 

From the very beginning, I’ve been quite clear about my priorities in all of this: Number 1:  obviously (I hope!)- I want the best possible result, understanding there are no guarantees.  That means I want to get rid of the cancer in as far as that is possible and minimize the possibility of recurrence.  Number 2: I want to look “normal” under my clothes.  I’m good with scarring.  I’m far less good with asymmetry.  I don’t want to feel like every time I look at myself my body is going to shout: CANCER!!  I don’t think I’m particularly vain,. I may even be less vain than the “average” woman, whoever she is.  However, it’s taken me more than 45 years to be relatively happy and comfortable with my appearance.  I don’t want an experience with breast cancer to rob me of that hard-won perspective.

We’ll see how my (hopefully last) consult goes.

SN: it is super duper weird to be talking so casually about the size of my breasts.

Consults 2 & 3?

Quick update:

Consult #2 postponed because surgeon is sick.  (I suspect the upper respiratory crud that is making the rounds, but that is just my suspicion.)  To be rescheduled.

Consult #3 scheduled with different surgeon for 1 week from today, on April 13.

I'm not any closer to any answers, but maybe one of my upcoming consults will help me find my way to them.

Tired

Tired.  And I shouldn’t be.  I have amazing, humbling love and support from everyone around me.  Haven’t started doing anything against this bugger.  And yet…  

I’m already tired from having to figure out medical care, babysit and double check my records and what I’m being “advised.”  I’m tired of being ghosted on Zooms, wasting time waiting, then using more time to reschedule.  Tired from having to make high-stake decisions with no clear cut factors to weigh.  I’m tired of consults.  And nowhere near done yet.  I’m tired of the work of managing all of this.

Love you guys, and I feel your support.  Just tired in my spirit today.

Consult #2 tomorrow.

Fear

    What am I afraid of?  I’m afraid of regret.  I’m afraid of remorse.  I’m afraid of being wrong.  My whole life, I’ve always been so afraid of being wrong.  I could probably use a whole lot of therapy to fix that, but there you have it.  As I’m progressing through the beginning of this experience, I need to name it.  I said to myself this morning:  you need to articulate your fear.  Get it out there.

    I’m afraid of making the wrong surgical decision.  

    I’m afraid of making the choice, coming out on the other side, and wishing I had chosen differently.  Everything that I’ve read so far indicates that in terms of prognosis in my case (i.e. not dying of breast cancer), lumpectomy+radiation or mastectomy+maybe radiation (if necessary based on tumor pathology) are equal.  The lumpectomy route has a slightly higher risk of recurrence but it is very slight and does not indicate increased mortality.

    No one will tell me what to do.  No one will even give me an opinion.  I get that it is my decision, but sometimes I wish someone, even more than one someone, would weigh in.  I love taking polls, getting other people’s perspective.  But it’s more than that–maybe others have thought of something I haven’t.  Maybe they have a perspective that will adjust my own, helping me to make a better decision.  I am confident that I am not unduly swayed by others, but I really do value what other people see/think.

    Lots to consider.

    Pay now or pay later?  

    I’ve never been good at taking the time to “be sick.”  I’ve always believed in using my allotted sick days very judiciously.  After all, you never know when tragedy could strike.  Don’t waste a sick day on a cold.  Save it!  You could get cancer. 😜

    And now that the time to use sick time is here, I still don’t want to.  I want a quick procedure, a quick recovery, and to get on to doing.  Part of that is me, part of that, I think, is the notion of cancer.  Cut that sucker out as soon as possible and keep it moving.  Keep everything simple, recover quickly.  The sooner I’m “recovered,” the sooner I can move on, the easier it is to pretend that none of this matters.

    Am I rushing into lumpectomy to minimize the impact of cancer on my life?  To choose the quickest recovery?

    Is vanity enough of a reason to choose a more involved procedure when there is no substantive medical benefit? Is it really vanity, or is it something else?

    How does one tell what is best?

    It doesn’t fit exactly, but one of my favorite songs is “On the Steps of the Palace” from Into the Woods by Stephen Sondheim.  It’s about many things, including thorny (sticky? 😁) decisions.  I think of that song, and I think of my beloved 7th and 8th grade English teacher, Mr. Michael Spata (who I never have been able to find online).  One of the things we discussed was decisionmaking;  choosing to not make a decision is in itself a decision.  I do not have that luxury in this situation.

(Not the best camera work in the video, but I really loved this performance.)

Surgical Consult #2

 This post will be more messy than usual.  Just want to get out some of the facts/nuts/bolts of the latest.

While I very much appreciate the follow up of staff re: the errors in my medical records, enough issues have arisen that it was clearly time to move on to a different practitioner.  I have a new consult scheduled for next week.

I also had a genetic counseling appointment today and blood drawn for the testing.

Did you know there is a law that your health insurance cannot discriminate against you based on your genetic testing?  Life and long term care insurance can, but not health.

Lots of stress and ups and downs, but I feel really good about where I am now.

I'm uncomfortable about pushing out the start of treatment, but I am far more uncomfortable rushing into treatment with a practitioner with whom I did not fit and without genetic information that could potentially affect my treatment now and further choices down the road.

Errors

The mental work of being a cancer patient is exhausting and overwhelming.  I'm tired before I've even started my physical treatments!  Managing emotions is almost a full time job.  Then there's the matter of research, understanding my condition, my options.  And balancing all of this with regular daily life.  And trying not to be completely self-absorbed. 😉  It's hard, then, when I have to add to this list great vigilance when it comes to reviewing my medical record for this adventure and making sure everything is accurate.  I had to do some patient advocacy for myself today.  Excerpts from my email below:

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

I am a newly diagnosed breast cancer patient. ... I received an email notification that my visit notes were available in electronic medical record. ... I discovered many errors. ...

I am reaching out to you ...

• to document my concerns;
• to become informed of the process for correcting errors in the record;
• to hopefully receive some reassurance that these errors in no way represent the quality of care I can expect going forward.

I printed out the notes ...and notated each of the errors.  ...pdf with my handwritten corrections is attached here.  ...specific concerns...:

1. The number of errors in my notes.
2. The location of my cancer is listed in the "Impression/Plan" section incorrectly ..
3. HER2 status is incorrect.  
4. The notes claim that certain topics were discussed in my consult when they were never mentioned.  At all.  
5. ...

All of these concerns are documented in the attached file.

... It is difficult to feel safe and have confidence in my care given these circumstances.  

 I look forward to working with you to follow up on my questions and concerns.  Thank you for all you to do help patients be heard, be safe, and be as well and healthy as possible.

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

Thankfully, I received the first response within 15 minutes of my email and a second response about 20 minutes after that.  Here's hoping that things smooth out, at least in these kinds of things.  

As with all things on this adventure, I choose hope and look forward to the future.

The breast opportunity

You are within spitting distance of 50.  You’re finally relatively comfortable with your body/appearance.  Of course, that’s when you get the “opportunity” to change something.

You are ill prepared for the opportunity to get fancy new breasts.

I don’t want to be miss an “opportunity” or make the “wrong” decision.  Scare quotes are intentional.  Is this really an opportunity?  Can there be a wrong decision?  I don’t have answers for any of this.

As will surprise no one, I was well-prepared for my initial surgical consult.  Except for one thing.  The mastectomy option.  Now, I knew that a mastectomy would be an option, but there were nuances to it that I did not expect.  Going into the appointment, I laid things out clearly in my mind. I discussed them with Alfred.  There were a couple of little, niggling things (pun almost intended, as will be clear shortly) that were not quite settled, but I felt that lumpectomy was the way to go.  My thought was: I will do whatever the professionals think will give me the best possible outcome (understanding, of course, that there are no guarantees).  If mastectomy and lumpectomy offer the same outcome, then I will choose lumpectomy, my thought process being that simple and least-invasive is always the best first option.  

So, after the usual initial medical intake (hello, high blood pressure for the first time in my life), I met the surgeon, met the resident, was given privacy to disrobe, and then had my exam.  Afterwards, we met in a consultation room–surgeon, resident, an unintroduced man in scrubs (nurse? student?), Alfred, and me.  As we talked through a few things, we came to the choices:  “we can remove the mass and some surrounding tissue to get clean edges.  Given the size or your breasts (there’s that little niggling question 😄), a good deal of tissue will be removed, and there will be some size discrepancy between your breasts.  The other option is a mastectomy to remove the whole breast, then plastic surgery to reconstruct the mastectomy area and add an implant to the other breast so you will be even.  So, if you’ve ever wanted to change your breasts, now’s the time!”

😲😳

I can’t remember exactly what I said, but I think it was something like: Whoa.  Wow.  Really.  I can do that???

The surgeon definitely responded with: well, you have the cancer card to play, so yes!

This is what I was ill-prepared for.  Ill-prepared, unsettled, unsure, freaked out.  Still am a little of all of that, but I think I’ve finally settled into my decision solidly, and I pray it’s the right one.  That settling in involved some 3am googling.  I watched an 11-minute video on breast reconstruction post-mastectomy.  I reviewed the differences in recovery time between lumpectomy and mastectomy+reconstruction.  I looked up “bras for asymmetrical breasts.”  That was all the 3am googling (which Ruthie helped with).  That does not include all the consideration that took place before and after.

I have worries, as we all do, especially us folks who have to make decisions of this nature.  I just want to look “normal” as I go about my daily life, post surgery/treatment.  

If there is any time in my life that it can be all about me, it’s when I have cancer.  I have to make the decision that is best for me, but best is not always simple or clear.  And because of who I am, best for me still involves others.  

I believe that most of the time, any decision we make can be made right, even if a different decision lead us down a different path.  I guess what I’m saying is that it’s not about a right decision.  It’s about a decision... and peace.  Gosh, that’s revolutionary for me to say.  Isn’t it always about being right? Maybe not this time, if ever.  Lol!  For now, for this moment, it’s about figuring out what is best for me.

Spoiler alert: I chose the lumpectomy.

 

A break from our regularly scheduled posts...

I've got several other posts in the works, one of which I hope will go up this weekend, but it is still percolating.  In the meantime...

A quick note to thank you, to let you know that I am grateful for you and truly appreciate you reaching out.  You commented here.  You messaged me privately.  You commented on Facebook.  You mailed a card.  You gave me a hug.  You asked.  You read.  You listened.  

Words are inadequate in this case.  They cannot really let you know how much comfort and strength I derive from each of you letting me know you support and believe in me.  But, words are all I have, so thank you. 💗

Distress Thermometer?

Got a text message asking me to complete my online check in for tomorrow's consult appointment.  I thought I had already done everything.  I had completed the 8 page hard copy form.  I updated all the information in my online medical records.  I confirmed the appointment.  What else was there?  What other fresh hell awaited?  Could it be they just always sent a reminder text to complete check in, even if it was already done?

Well, there was one more little tidbit to complete.

I'm willing to bet most of us, or at least most of us who are of a certain age or who have interesting medical histories, are familiar with the pain scale.  I'm most familiar with the whole, "on a scale of 0-10, 10 being absolutely unbearable pain, what is your pain level currently?"  There are even pain scale faces:

Evidently, there is also a Distress Thermometer.

Who knew?  

The question posed to me: How much distress have you been experiencing over the past week, including today.

Well, let's see, I received a cancer diagnosis just over three weeks shy of my 49th birthday.  Today, I received my first medical bill (other than a copay) related to said-diagnosis.  My parents, both in their 80s, each have complex, unique, challenging health problems.  They live about 1,200 miles away, and I'm not in a position to be the fixer I usually am, for a variety of reasons, not limited to my recent cancer diagnosis.  I'm the mother of a teen-aged girl.  I'm living in what is still a global pandemic, watching WWIII potentially begin in Ukraine.  There are probably other things, but I think those are the highlights.

Anyone want to hazard a guess as to what I put down as my number on the Distress Thermometer?  For the record, Amelia hit the nail on the head.  Alfred did not. 😜