I decided against the Brazilian Butt Lift

Who would have thought I would ever find myself in a plastic surgeon’s office???  Well, my breasts are so big that it is best if a plastic surgeon closes.  With two surgeons working, it should take 3-4 hours for the bilateral mastectomy.

Fffs….

It has been a time of lots of emotions, many beginning with that letter.

Frustration – Getting a surgery date has been very frustrating.  It was supposed to be in early July but finding a date that works for two surgeons and the hospital is challenging.  Combined with surgeons having the audacity to take vacations, and hospitals beginning to allow elective surgeries again, it has become very difficult. 

And I had my third MRI.  Not fun, especially with an older machine which required me to go in feet first.  That means I knew my entire body was enclosed in a tiny tube.  And I could feel my hips rubbing the sides.  It took some mind control to prevent myself from freaking out.  And I did not wear a mask!  The tech doubted that I could since most people can’t.  You’re face down so sinuses are draining, it’s warm, it’s tight, it’s long (upwards of 30 minutes), and it’s hard to breath in a mask.  At the last minute, I pulled it down when I realized how difficult it would be.  So, after isolating myself so carefully for so long, I knowingly breathed into a small cavity lined with a hard surface onto which other people did the same before me.  Not a comforting thought.  But that is not the frustrating part.  The frustrating part is that two days later they called me to tell me something went wrong, and I had to go back and do it all again!  And this time it took even longer because they took extra images. 

Fear – There is an underlining fear for this whole journey, of course, but I really felt it after meeting with the plastic surgeon and allowing myself to acknowledge the barbarity of a bilateral mastectomy.  They aren’t amputating limbs, I know, but it is still a big deal.  The incision on each side will begin so far back, it will actually be on the back.  After the surgery, I can’t move for two weeks (other than to shuffle around so that I don’t get blood clots), because you’re not supposed to do anything that will raise heart rate or blood pressure and blow out the cauterized blood vessels.  During those two weeks I will need to measure and drain the liquid collecting in the bulbs attached to some tubes hanging out.  (I think I need to experience that before telling you more.)  And a friend who has had this said that I will be like T Rex – arms need to stay close in and you can’t raise them above shoulder level.  And the nurse recommended I get a grabber in case I drop something.

A very large bill just showed up on my hospital web page.  Did my insurance not cover the second MRI?  The one I had to go through because the tech made a mistake?  I’ll wait a while before I start panicking about that. 

But my biggest fear still involves feeling that fatigue.  Whenever I move, my heartrate is very high to make up for the low hemoglobin and red blood cells.  I have been trying to walk, but it is slow going and one time I didn’t even make it out of the parking lot before turning around.  For weeks, instead of getting better, I was getting worse.  But I read that it takes two months to recover for every month of chemo.  I need to be patient.  Today I think I detected some improvement, so that’s exciting!

Failure – in some personal goals. 

Forgiveness – important after experiencing failure, because without self-forgiveness, one would never get up again.  The Benedictine motto resonates with me: “…and we begin again.”

Cancer in the time of Covid-19, Part 4

A friend just texted:  “As hard as it is to have cancer during a pandemic, it kinda is also a good time because you aren’t missing out on much.”  Good point! 

Good News 

No tumors are visible in the MRI images!  Not in the breast or the lymph nodes.  That means the chemo did its job.  It was worth it.  Thank goodness.  (The original plan of surgery and radiation is still in place to deal with the pesky little cells that are not visible…)

Surgery Date 

It’s finally official:  Friday, July 31.   Way later than it should be medically (oh well) and I will still be recovering when school starts.  I guess I better get my act together and prepare now.   

Fatigue

Exhaustion. Tanzania 2014

Last Thursday I made it through my last major chemo infusion.  I’ll begin chemo again in the fall, but without the nastiest of drugs.  Knowing what was coming, I didn’t want to go.  But, being a plodder-througher, I did.  Doctors kept telling me that this is not an easy regime, that the fatigue would be intense.  Well, yes, I guess it is.  This time “it” started right away, Thursday night.  Again, I was grateful to be able to sleep for three days straight, although it was more difficult because of the nausea.  I was feeling pretty rotten.

To give you an idea of the fatigue:  you know that feeling of muscle burn during intense exercise?  I realized I was getting that while brushing my teeth.  With an electric toothbrush.  This morning, five days later, I felt the burn just getting out of bed and walking across the room.  It should not be surprising, however, given that the bloodwork right before the infusion, after three weeks of rest from the last one, showed a very low red blood cell count, hemoglobin, and hematocrit.  This will take a while to recover from. 

But I anticipate that I will.  On a rather predictable schedule.  In fact, emotionally, I feel fantastic.  Relief is in sight.  This is not the case for my friend.  There is a big difference between acute fatigue and chronic fatigue.  My friend has good days (40% energy level) and bad days (unable to move), and is not able to predict which it will be.  What used to be called Chronic Fatigue Syndrome is now called Myalgic Encephalomyelitis. 

ME/CFS is a complex and debilitating multi-system, chronic disease with a serious impact on one’s quality of life.  The phrase “millions missing” is connected to ME because millions of people have it but have no energy to advocate for themselves.  Did you know that ME is more prevalent than multiple sclerosis, cerebral palsy, and muscular dystrophy combined?  Yet the cause is unknown.  There is no diagnostic test.  And there is no treatment.  Why?  Because very little research is being done.  If you ever thought of donating to breast cancer research because of me, please don’t.  Breast cancer is a well-funded, well-researched disease.  Please consider donating to the organization that supports research on ME/CFS instead:  https://solvecfs.org/

Thank you. 

Plodder Througher

Tanzania 2014

Sometimes I think of myself as a “plodder througher.”  Especially when times are tough and there isn’t much choice.  Just move forward and eventually get through.  Kind of like an elephant. And having buddies helps.

My electrolytes were okay, and I had my fifth infusion that Thursday.  I woke up Friday morning feeling fine, but by 8:00 I could feel “it” coming.  The “it” being that overwhelming fatigue when any movement is a challenge.  This time it came early, and I slept for the next three days.  Since I just felt sick anyway, being able to sleep was a blessing.  Monday morning, I was a little better and tried to get through some email but experienced mushy brain; I just couldn’t think.  I watched TV all day.  Tuesday “it” lessened more, and I tried to slowly get back to normal. 

My nails hurt, fingers and toes.  They are also becoming discolored.  I’ve been told they may fall off.  Lovely.  But the most concerning new phenomena is the beginnings of neuropathy in the feet – odd, tingly sensations with a little pain and numbness.  My doctor is a little concerned about that and if it doesn’t improve by the next infusion, they may reduce the chemical that causes that side effect.  So far, no food poisoning this time.  Just the normal digestive distress.  Yay! 

I’ve always had a thing for elephants and compiled this list a few years ago. 

Some lessons that elephants can teach us:

  • Honor the dead.  Elephants are known to visit the bones of their ancestors.  Although fraught with mixed memories, our predecessors have influenced who we are. 
  • Be patient.  Move slowly.  Rarely is speed necessary.
  • But when urgency is needed, be ready.
  • Work together.  Help each other, family or not.
  • Be solid.  Be calm. Be present.  
  • Gentleness goes a long way.  Someone told me they that when they need to transport elephants, they put a chicken in the truck.  Why?  The elephant will remain still to avoid stepping on the chicken. 
  • Reach out to others.  Elephants constantly let each other know they are there.
  • Stay next to your buddies.
  • Be playful.
  • Trumpet loudly when happy.

I may not be able to trumpet yet, but I plan to enjoy the week as I gather my strength for the next and last onslaught on June 4. Thank you for the continued random meals, cards, calls, and texts.  And thank you to whoever sent the Moyes book – I look forward to starting it today! 

Cleaning Out The System

Aren’t they cute? I am glad I got to go to Tanzania a few years ago.

Tomorrow is my fifth chemo infusion.  The good news is that there is only one more after that.  The bad news is, I still need to get through these two.

Many people are using this time at home to declutter and deep clean their homes.  I haven’t yet done much of that myself, but my body decided that was a good idea.  Since I last checked in, my digestive system did two rounds of serious, deep cleaning.  The first episode included nausea and feeling miserable.  The second episode was just like the prep needed before a colonoscopy, but it lasted for 30 hours straight, including all night.  I now know how someone can become severely dehydrated because, frankly, it doesn’t matter how much you drink.  Unfortunately, this last episode was just this past weekend, and my oncologist could tell it had happened simply by looking at my bloodwork from Monday morning.

I felt better Tuesday morning, but since then my hold on things has been tenuous at best.  I’m getting really tired of the BRAT diet!  They will repeat the blood work Thursday morning to see if we can go ahead with the scheduled infusion.  I’m doing my best to make this happen since any delay would be disheartening.  Why the involuntary cleanses are occurring is not clear.  A friend suggested that maybe I’ve picked up a C diff infection.  (Trust me.  You don’t want that.  Thanks Stan!  😊  )

Still Here

Just checking in to say hello.  I am still feeling very ill from last week’s infusion.  The energy needed to do Taiko, Japanese drumming, seems so far away.  Today I gathered my strength to take a shower and will call it a day.  I think I’ve officially transitioned from “this is fascinating” to “this really sucks.” 

But as always, your support helps.  Thank you for the continued check-ins, cards, packages, rides, and deliveries.  I am grateful to you all.  During this time of the virus, we are all dealing with difficult stuff.  “Together, apart,” we will make it through.

You make cancer sound like a camping trip!

“…a bit uncomfortable, but still a good time.”

Spring in front of my building

A friend said that to me after I described my trip to the hospital last Wednesday for some hydration. Maybe not a good time, but fascinating, nonetheless.  My drive to the hospital that morning was a moment of pure joy.  Since I hadn’t driven in three weeks, the experience was extra special.  I blasted classical music and helped the conductor do his job.  The spring flowers and flowering trees were in full bloom in front of a background of fresh green, all viewed through my polarizing sunglasses.  It was truly beautiful.  But my time at the hospital, and the feeling that I had been poisoned by rubbing alcohol, made the equally beautiful return drive not so joyful.

Cancer in the time of Covid-19, Part 3

  • Lots of spaces are available in the hospital parking lot, because visitors are no longer allowed.  At all.
  • The wipes are gone!  Remember the whole gloves and wipes story?  I thought I had the routine down, but no – the hospital seems to be hording wipes.
  • My temperature was taken under my armpit since they never want patients to lower their masks.
  • Nurses are being “cross-trained” to prepare for a possible surge of Covid-19 cases.  Since nurses in the oncology wing may need to go to the main hospital to deal with the virus, many of them are learning new tasks.  Because of that, I got to hear my nurse explain to her trainee all the steps needed to access my port. 

Accessing the Port

After my port was surgically placed last February, I was told that if I had to go to a hospital and someone saw it, they would want to use it,  but that I have to be assured they know what they were doing.  It is a 15-minute procedure and must be done correctly.  Why?  Because it is essentially a “central line” to my heart.  Any contamination could be very serious.  I knew all that (except I hadn’t heard the phrase “central line” used in this context before) but listening to my nurse train her colleague on the importance of each step was very interesting. 

This is what I remember:  sterilize the table, open the outer layer of the kit to access the two pairs of sterile gloves, put on one pair to open the rest of the kit and carefully place all the parts on a large sterile pad, switch to the other pair for the rest of the work, use pressure while swabbing the skin with three separate swabs of alcohol (no wonder my skin looks and feels raw each time), use all your fingers to stabilize the triangular port and ask the patient to hold their breath,  aim for the center with the three quarter inch needle, sometimes it’s necessary to use a one inch needle but patients really don’t like that (hmmm, I wonder why!), squeeze the sides until you hear the snap, never flush into the line to clear it since there may still be heparin present from last time, instead, withdraw blood to make sure the line is clear, twist ten times with an alcohol wipe every time you attach a new part, etc.  I thought it was all very interesting!

mission accomplished

But I swear that I was breathing out rubbing alcohol.  And since I wasn’t supposed to remove my mask, I felt like I was just recycling it all morning.  Even though a large bag of saline solution dripped into my blood was supposed to make me feel better, I ended up feeling worse.  That night I kept smelling it.  Imagination or not, it was gross.  I was ambivalent about going in the first place, and after this experience, I probably won’t do it again.  I’ll just have to manage on my own.

Holy Week

I finally feel myself shedding tears over the personal losses my family has suffered recently.  Today is Saturday, the day in the Christian calendar between loss and a new beginning.  It feels as if the whole world finds itself in that limbo right now.  But hope can be found.  On the horizon.  Somewhere. 

Two colleagues are stopping by today to deliver food and groceries.  And Easter dinner tomorrow. Thank you all for your continued support.  If I can support you in any way, without leaving my virus-free cocoon, please let me know.

Cancer in the Time of Covid-19, Part 2

Pre-Infusion puppy fix!

Last Wednesday I had my third infusion, and there were more examples of the effect of the Coronavirus: 

  • My required pre-chemo doctor visit was a virtual one.  It’s important that I stay away from the hospital as much as possible. 
  • I was asked to put on my own wrist band.
  • Chairs in the waiting room are taped off to force physical distancing.
  • Remember when I was reprimanded last time for not using gloves with their especially toxic wipes?  Well, they now warn people with a posted sign.
  • My nurse thanked me for wearing a mask since it protects her as well.  
  • Two masks come with the kit to open the port, one for the patient and one for the nurse.  Since I was wearing my own mask, I was hoping to keep that extra mask in case I needed it later.  Nope – they are keeping all “extra” masks.
  • To protect themselves from the toxic chemicals, the chemo nurses always put on long plastic gowns every time they change the bags.  This time, my nurse saved her gown to use all day to maximize gowns available for the Covid-19 part of the hospital.
  • I can’t get my own tea anymore.
Look at the size of that port needle!

How am I?

This infusion hit me much harder than the first two.  I fell asleep during the treatment and slept the rest of Wednesday and most of Thursday.  Friday, I woke up without enough energy to hold up my arms, so I couldn’t read the newspaper.  The fatigue was incredible. 

On Saturday I began to feel a little better but then almost called the ambulance since I thought I was having a heart attack.  I had extreme chest pain, high blood pressure, and rapid heart rate.  I even went so far as to get some fresh clothes on and unlock my door.  But the feeling resembled my acid attack after the first treatment, so I took one of those gigantic pills they gave me and waited.  After about an hour I decided I was probably not going to die that day.

Today is Sunday and a new day!  I took a shower, did some laundry, and am enjoying my balcony again.  Hallelujah!  Whether or not you celebrate Palm Sunday, I wish you a blessed day. 

Cancer in the Time of Covid-19

Getting hydrated, and wearing a mask for the first time

What a strange time this is!  Most of us are at home.  Day in, day out.  Some alone.  Some with family.  For most people, the thought of getting covid-19 is frightening.  For those of us with cancer, it is terrifying.  Here are some experiences over the last ten days.

  • Hair Loss – most people get their head shaved.  I planned to allow it to happen naturally, until I started finding hair everywhere and realized what a mess taking a shower is.  I decided to go and get it shaved – until I remember the coronavirus.  No point in going somewhere just for that.  Back to watching it happen gradually.
  • I start wearing a mask when I go to Sibley Hospital.
  • Sign-in procedures at Sibley on Tuesday, March 17:  screening just to get into the hospital – they wiped the pen before giving it to me to use; sign-in for genetic testing – they gave me a tissue to hold the pen; sign in for the PET scan – nothing special.  I tried to use a tissue until I realized I had many forms to fill out and gave up.  The geneticist took one look at my mask and wiped clean my insurance card before returning it.  That was nice.
  • Sign-in procedures at Sibley the very next day for my hydration therapy: no pens at all.  They signed me in. 
  • One nurse says she wants my mask since it matches the color of their uniforms.  Another nurse says my mask looks “sexy.”  Hmmmmm.  (The infusion nurses are very nice.)
  • A nurse sees me using their wipes to clean off the table in my room.  She points out that I need to wear gloves to use their wipes.  Oh, maybe that is why my skin is now stinging? 
  • With my mask on, the Face ID on my phone no longer works.
  • Saw the bill for my first infusion – over $14,000.  What if I had a job that disappeared due to coronavirus and I lost my insurance? 
  • I wore my mask when I went to school to video some experiments and freaked out a few students who saw me.  Actually, I saw no evidence of them being freaked out.  Our students are very polite. 
  • I read the PET scan carefully and realize it says my “heart is enlarged.”  One of the chemo drugs is especially hard on the heart.  Before starting chemo, the echocardiogram showed that mine was healthy.  And now it’s enlarged?  After just two infusions?  I message my oncologist to see if there are ways to protect it or if something should be adjusted.  She says that PET scans are not necessarily accurate in this regard, and she doesn’t want to order another echocardiogram since “at this point it’s much more important to minimize your stay in the healthcare system.”  Wow. 
  • Home now for the foreseeable future.  Isolated.  No more hugs from anyone.
  • Friends leave meals for me in seemingly furtive ways.  Is this what it feels like to do a drug deal? 
  • I read an article in the Washington Post this morning that says that people with cancer have a 5x higher chance of dying from covid-19 than others.  And when rationing of ventilators begins, older cancer patients would probably not be very high on the list.  I can’t get this.  I don’t dare go out anymore.
  • I should give up my hydration appointments (where they infuse saline solution directly into the blood stream for two hours).  They were helpful in making me feel better.  All appointments besides blood draws and infusions will be via virtual visits.  Seems complicated to set up.  I haven’t done that yet.  (Since I live in Maryland, my oncologist must be licensed in Maryland.  I don’t even know if she is.  Sibley is in DC.)
  • The feeling of isolation is overwhelming.  I better understand my friend who rarely goes out because she has ME/CFS (chronic fatigue syndrome).  I feel much better once I start having video chats with my colleagues.  Just being able to “see” friends is so helpful.

I hope you are all surviving this time as best you can.

Good News!

It’s been a while since I could say that! PET Scan came back negative. There is no evidence of cancer beyond the lymph nodes. Yay!!!!

Gratitude

I wore my dad’s funny fake-hair hat to school this week.

My feel-good week

I felt almost normal this week.  Until I was reminded that I am not.  I anticipated a good weekend before my next treatment but woke up Saturday morning feeling blue.  That night I started losing my hair.  Then yesterday, Tuesday, I met with my oncologist and got freaked out again. 

Because of what I said to her on the phone last time, she took another look at the ultrasound report and acknowledged that yes, there is a lot of “lymph node involvement.”  She wants to do a PET scan.  ASAP.  That is a full-body scan looking for cancer.  It is important to do that before the chemo has a significant effect, because if there is something elsewhere now, that means that I should have the targeted infusions for the rest of my life.  In terms of scaling back my current treatment, we will talk about that later.  She currently has a patient who is tolerating it okay and has decided to finish it in the hopes that it will do something.  This was all very upsetting.  The scan is next week. 

First hints of hair falling out. It now comes out in clumps.

When I woke up feeling badly on Saturday, I did two things.  I forced myself to walk out in nature (with the encouragement of two friends who can be direct; one even asked for photographic proof that I had done so).  And I started a gratitude list.

Gratitude List

I am grateful for many things, but these are specific to my current journey:

  • Notes of appreciation from former students and their parents
  • Continued check-ins and good wishes
  • Direct and adamant taking away of some of my responsibilities at school
  • Being with me during major appointments
  • Listening to my flow of medical details
  • An offer to come over to pick the remote up off the floor
  • Surprise treats – some sweet (literally or figuratively), some funny
  • Warm expressions of kindness from complete strangers who can sense that something is wrong
  • Warm expressions of kindness from complete strangers who don’t sense anything is wrong, but they are just naturally kind.  They have no idea what their gestures have meant. 
  • Piles of cash and gift cards to help with those mounting costs
  • Accepting that it is okay not to send thank you notes to everyone
  • Being treated in an infusion center that pays attention to aesthetic details and integrative healing
  • Incredibly kind infusion nurses
  • Finding humor in certain desserts
  • Books and flowers that show up at random times
  • Knowing mom is being taken care of in ways big and small
  • Elephants
  • My adjustable bed and comfy chair
  • Shipments of comfort blankets, socks, and stuffed animals
  • Words of encouragement from people who have been there, and from people who have not
  • Cards, both touching and funny
  • Pre-start game night
  • Allowing me to be present but not contributing to conversations
  • Friends travelling across country to help, and those who wish they could
  • My decision to move to a condo with far fewer upkeep responsibilities
  • The day my students all wore pink for me
  • Gifts of chemo hats, purchased and homemade, comfy and funny
  • Listening to my complaints without trying to minimize them
  • Students offering to help
  • Top notch medical system
  • Appreciating my sense of humor
  • “Cuppas” with my neighbor
  • Rides to appointments
  • Imodium
  • Retrieval of my dad’s funny fake-hair hat
  • Lifetime pass to my favorite art museum
  • Hand-made tea mug from a potter I don’t know
  • Ability to get out for a walk, in nature, during my feel-good weekend
  • Colleagues who step in to cover classes and duties, and to grade my tests
  • For Thursdays, when I receive my weekly meals from others
  • Compliments on my hats
  • A dad who asked me how I was doing, just hours before he died
  • The person who spent many hours setting up this blog for me
  • For all of you who read my blog,
  • And the hope that this is all temporary

Compiling this list made me cry.  A lot.  I have not often been able to cry during this horrible year but trying to receive kindness graciously usually provides the necessary trigger.  Thank you all.  Tomorrow, Thursday, I take your good wishes with me to my second infusion.