I signed up for these daily self improvement, enlightenment and self realization essays from one of my favorite web sites – DailyOM. Two days ago as I started to read that days essay, within two sentences I had tears starting to form, by the end of the first paragraph, I was crying, I had found my tribe. Or at least one of them, and it only took fucking breast cancer to get there.
The title of the essay was “Finding your Tribe” by Madison Taylor. The first paragraph: “Part of being human is the search for an individual identity. Bound to this strong need to establish a unique persona, however, is an equally intense desire for acceptance. It is when we find our individual tribes that both are satisfied. Our tribe members are those people who accept us as we are without reservation and gladly accompany us on our journeys of evolution. Among them, we feel free to be our imperfect selves, to engage unabashedly in the activities we enjoy, and to express our vulnerabilities by relying on our tribe for support. We feel comfortable investing our time and energy in the members of our tribe, and are equally comfortable allowing them to invest their resources in our development.”
I have several tribes that I love being part of, some are closer than others. But the one I need the most right now, the one that I was thinking of while I was reading this essay, is my Breast Cancer Support Group. They are the acceptance I need still, even coming up on three years past my initial diagnosis. Almost two years past my active treatment. And 9 months since I was let go from my job. They are the support that allow me to voice my concerns for my future, the part of me that has a calm but fearful knowing what my future may hold for me. They listen without judgement, with no feedback that I must think or act differently. They love unconditionally, with my flaws, my hopes, my dreams, my triumphs and my weaknesses.
I love all my tribes. The women and men I formed connections with through my work, the strong and agile thinking people who have upheld me through my career. These intelligent and loving individuals who challenged me to be better, to grow and learn. These people, whose friendships I still cherish, even though I don’t get to see them or interact with them as often as I would like, I still feel my connections to them, and when I least expect it, they are popping up in my world, to remind me that I still have them with me.
Then there is my faire tribe. The people who accept my nerdy, dress up and play side. The part of me that loves to play make believe, and sew fantastic costumes so I can feel pretty in my make believe. They give me an extended family to love and be loved. The ones who cheer me on in my normal life, even though I only really get to be with them during my “fantasy” life. I love them and I am ever so grateful that I have them with me always. Even during this pandemic that keeps us physically apart, I have them with me, a Facebook post, a message, a phone call, an email away.
And of course there is my family, my blood tribe. The ones I am connected to through blood and bone, spirit and familial attachment. The ones I know will always be there, holding me when I need it most. Knowing I am holding them when they need it. The ones I have gone through the highs and lows of life with; the ones I have argued with and still come back to their love. The ones I have hurt beyond belief, but have forgiven me when my pain and confusion in life made me lash out in such horrible ways. The ones who understand me the most, and accept me with all my other tribes in tow. I have brought many of my tribes to my family and they have been accepted with open arms, because they are my tribes. I love my family for this, for always accepting my tribes when I bring them home with me. I love that my family loves and accepts me always.
I love my tribes, all my tribes, and right now my Breast Cancer Support Group, even after all this time, is the tribe I currently rely on the most. And I am ever so grateful for this tribe.
I was going to make a post about how I am still practicing
Mindfulness – being in the moment. Alternatively,
how I accepted a diet challenge through a fitness program to try something new. Instead, I feel the need to dedicate my post
today to Kelly. Not my soon to be
daughter-in-law Kelly, but Kelly from my Breast Cancer Support Group.
Kelly came to our group already undergoing treatment for her Triple Negative Breast Cancer through her primary medical provider. She was terrified like the rest of us, dealing with our own monsters that cancer brings with it. I was introduced to a book that claims cancer is a punk. The author Brianne Joseph says a punk is someone who sneaks up on you and attacks you when you least expect it. I am also of the thought that punks always bring friends to back them up. These are the monsters and demons we face, while that damn punk tries to kill us. In our support group, we face our demons and monsters together, uplifting each other, providing a shoulder, a hug, a hand or words as needed, to each other to get through our nightmares come to life.
Kelly shared with us her fighter, her belief that she is
stronger than this “punk azz” cancer.
Through all she has faced in her battle to date, she has continued to
turn to her inner prize fighter, to consistently believe she will be victorious,
even when she succumbs to that doubt monster that plagues all of us. She continues to end with the positive after
pouring out all the doubts, fears and negatives that are a constant ticker tape
feed in the back of all our thoughts.
Kelly has an effervescent spirit; she brings light to a room and spreads joy and warmth to all of us. She is funny, with a quick wit and is willing to be the first one to laugh at herself. My favorite kind of person.
Kelly has had a much more difficult road to travel with her triple negative breast cancer than I traveled. Watching her face setback after setback and still look towards a perfect light at the end of a tunnel inspires me and makes me admire her even more. At one point she was even comforting me saying her story is not my story and that I need not worry that any of her setbacks would ever happen to me.
Kelly has had yet more setbacks and has been hospitalized for weeks. She is so independent that she has refused help or visits from any of us. We are terrified for her. We know that there will be those that lose their battle with cancer, but we are not ready to go there with her yet. She is still fighting and we want to be at her side fighting with her. We want to hold her hand and transfer our love and strength to her. She told us that she did not want us to deal with freeways, traffic and parking. Please, my bright and loving friend, these are the least of our worries here. We could care less about the slight inconvenience we might face in order to be by your side.
Kelly continues to look at the positives, like how her
nurses are treating her like a queen.
They provided her a “spa day”, a foot massage, hair wash, soothing sound
machine, and even a champagne flute to sip her “green drink”.
In the meantime, we sit in our own little worlds trying hard to hold onto her indefatigable spirit and feeling helpless. We have all shed our tears of fear for our dear friend. We are together, in this space and time, for a reason, and feeling left out is hard for all of us.
Therefore, I am pouring out my heart here, my love of this
woman, all of her. The fears, the anger,
the strength, the wit, and her joys. She
has shown me how to move forward when those damn monsters feel like they are
winning. She has shown me how deep love
can go. She has shown me that sharing
our fears with each other makes us stronger.
She has shown me the pure face of joy.
She has shown me righteous anger, and to funnel that anger into
action. She has shown me that we do not
have to be perfect. She has shown me how
our ties bind one another and how important those ties we have are to our
whole.
Kelly is part of whole, and we feel the loss without her
amongst us physically. We feel helpless
and afraid because her strength in doing “this” on her own keeps us away from
her. Our hearts break that she is facing
this without us by her side. We need to
be with her, to just hold her hand, or sit with her in silence, breathing the
same air, or just talking nonsense. We
just need to be there.
Kelly, my beautiful, strong, vibrant, joyous friend, know
that we would climb mountains, slay dragons, swim oceans, and cross deserts for
you. Our hearts, thoughts and prayers
are with you always.
I thank Deda for allowing me to cry while I poured out my hurt, hopes and fears while she hiked a hill in Portland, OR to see the beautiful rose garden at the top. As we both cried, as we have been through this before with her dad and my stepfather who both succumbed to their battles with cancer, she looked around at all those beautiful roses blooming in every color you could think of and all she could see was each flower representing a woman who lost her battle. Even though she was not with me physically, my Deda is always there for me holding me in spirit when she cannot be there in person.
I thank Linda who agreed to meet me at Madrona Marsh so we
could take in some of the beauty of nature to remind us that life is full, even
when we feel we drained.
I thank my support group for knowing how we all feel, even if all our roads are different. You provide me space to celebrate the good, to face my fears with no judgement, and to give of myself to others.
No parade for my birthday, but I did see the castle with “snow”
I know it has been months.
I have been busy, and there have been some things I was not ready to
face in writing. I am fine! We celebrated my birthday at Disneyland, and
I enjoyed every moment. We rented a
wheel chair for my birthday trip rather than use the ECV. Robert and I had so much fun just being there
I forgot to get my birthday button!
I also decided it was time to remove the TCST reminder from
the bathroom mirror. Remember way back
at the beginning of all this, my wonderful spouse surprised me one day with the
big take away words from the first Oncologist we met with when we received my
diagnosis – Treatable, Curable, Survivable, and Temporary, TCST. He had purchased pink decal letters and
spelled those words out on the bathroom mirror so I would see them every day as
a reminder while I was going through treatment.
It was time for them to come off, for me to move on from being the
patient to being a survivor. Once they
were removed, I felt another little weight that had been hanging around my neck
float away.
I noticed that as I slowly moved away from the fear and anxiety of this serious diagnosis and treatment plan, and worked towards loving myself again and having joy back, the lighter my heart felt. I perceived with each little step forward less tension in my back, that squeezes around my sides and restricts my breathing. It was also getting easier to take those small little steps back into the light. Still not 100%, but getting ever so closer to feeling like I am whole again, at peace with myself.
We went up north to celebrate Chanukah with my family, and because my cousin was not feeling well, I was put in charge of the kitchen. I wondered how she managed the last Chanukah and Passover without me there. She is always breaking something or having a surgery to fix something that did not heal correctly and it seems like she needs to be off her feet, so I am in charge of making sure everyone gets their dishes out on time and any specialty foods are prepared to our exacting requirements. Moreover, by our, I mean Deda and my preferences. We have worked over the years to perfect the Latke recipe, and I have worked to make Noodle Kugel to our liking not only for Chanukah, but kosher for Passover too. Do not get me on how many years I have experimented with different recipes of kosher for Passover fluffy light Matzo Balls!
So there I was with my neuropathic feet and hands, directing
the cousins and kids on the art of making our crispy on the outside, creamy on
the inside shredded Latke. I made sure I
took time to go rest my feet at well, between the prepping, mixing and cooking
of all the Latke. And making sure everyone else was coordinating
the use of the oven and microwave accordingly to get dishes out on the buffet
timely without going cold. At one point,
we blew a fuse, so I went to ask Deda where the breaker box was so I could trip
the breaker while the “Kids” moved the electric skillets around in the kitchen
so we would not have a repeat of overloading that circuit. Deda had been ensconced on the sofa, cuddled
in a blanket trying to keep her germy, virusy self away from everyone
else. When I told her what I needed she
started to explain where I could find the breaker box and gave up, as she just
knew she could not explain adequately so I could locate. I headed down the hall to the garage as she
heaved herself up out of the sofa and made her way to the hallway. I am a good 25+ feet away when she makes the
step up from the family room to the hallway and promptly kicks the corner of
the wall at the edge of a 6 foot wide (maybe more) stairway. I heard the crack of her little toe, and
cringed. I asked her if that was her toe,
as I slowly turn to see her bent over, holding the offended toe, trying to not
yell “Ow, ow, ow, FUCK, ow!” Yes, she
broke it. Told you she breaks things!
As she hobbled to the garage to trip the breaker, I went to the freezer and made up an ice pack for her. She had an Expo the following week, and there is not much you can do for broken toes, except try to stay off them.
Relaxing with the sick one
Nane Wisnia would be so proud
I went back to work too!
Part time, started out at four hours a day. When I had met with my boss and HR, we were
thinking 10am to 2pm, but when I checked in with them before the week I started
back in December, they asked if I could work Noon to 4pm instead. That would provide the needed help in the
afternoons to get ready for the 2nd shift and review of empty
shipping containers that needed to go back to the ports. Yeah, I could work with that. First week back and I did ok. Up to this point, I was feeling really tired
from the effects of the Gabapentin; but I was still working with Dr. R on that
aspect.
Work is not all bad…
Work is not all bad…
The weekend after our trip up north for Chanukah, our
wonderful neighbors told us they were once again hosting a Christmas Party, and
for the first time in years, we would be able to attend since we would not be
out of town for Chanukah. On the
appointed day, I took it easy. Robert
started getting antsy about 4pm, telling me to stop taking things I was done
with out to the garage, to not take out the garbage, to just sit and
relax. When I would push back and tell
him I was fine, he kept reminding me we were going to the party and I would
probably be on my feet a lot, I needed to rest.
At one point, he was even pushing for me to take a nap. Something was up, but I could not figure out
what was wrong. As he was getting ready,
(he had just exited the bathroom after taking a shower), there was a knock at
the door. Low and behold, there were my
parents (Dad and Mom#2). I gave them a
look like “what are you doing here”. We
had just seen them the week before when we went up for Chanukah. My first thought was they had come down to
visit friends and were early so they needed a place to crash. I opened the door wider for them as my Dad
gave Mom#2 a look and mumbled something about not reading the invitation
correctly. I apologized for the look of
my house, I was being partially lazy all day in preps for the party at the
neighbor’s house shortly and then the guilty look on my mom’s face really took
over. OMG that is why Robert was now
cursing in our bedroom, my parents made the “good neighbors” list and them
being invited to Bob and Moses’ Holiday party was a surprise for me! Mom made me swear to act surprised when I
walked in and they made their way across the street. How sweet!
I went to get ready and asked Robert if my parents were the
surprise he was trying to hide and why he kept telling me I could not take out
my trash or go to the garage earlier. He
said, yes, that was the surprise he was trying to hide from me in case they
parked their car where I would notice. He
has been talking about replacing his car for almost a year now, and doesn’t
know what he wants, so I was thinking he had finally made a decision and was
hiding his new car in Bob and Moses’ driveway!
They have so many I would not notice if there were a new car there or
not quite frankly. I was wondering why
he felt he needed to keep it such a secret.
However, that is how my mind works.
We finished getting ready, and Robert said we should head
over. Moses was waiting for us at the
front door and said everyone had gathered out back, but he was waiting for his
sister. We headed out back and SURPRISE;
it was not Bob and Moses’ Holiday Party, but a surprise late birthday
party/done with cancer party for me! Not
only were my Dad and Mom#2 there, but my Mom, brother Rob, nephew Kevin, cousin
Deda, Heather, Joseph, Jordon and Kelly, some of the close neighbors (as I had
been promised for the Holiday party), as well as my Breast Cancer Support
Group! I was totally blown away! The kids supplied all the food and drink, while
Bob and Moses supplied the venue AND a photo booth.
I got to keep a copy of all pictures taken at the photo
booth. We had so much fun with
that. Remember when I mentioned that my
cousin manages to break something all the time?
Well she and my son Jordon were playing with props and posing in the
photo booth. Deda decided to remove her
glasses, and Jordon, decided to whip a boa he had around his neck back, which
managed to whack Deda in the eye. All of
this was caught in the three-photo strip produced by the magic photo
machine. I laughed so hard! Yup, she tried to break her eye…. LOL.
They won for the best photo strip produced that night.
I had a great time at this surprise party, and reminded yet
again how lucky I am to have such a wonderful family and friends.
We hosted Robert’s cousins, aunt, and his mom and stepdad for Christmas Eve, with all the usual food and fun. As has become the custom, the cousins brought me a gift of my favorite whiskey – Midleton Very Rare Irish Whiskey. This is a delicious sipping whiskey with a wonderful citrusy finish that pairs wonderfully with chocolate! It is also very expensive. Imagine my delight to see this wonderful gift yet again. After about a year of not being able to drink wine, beer or my whiskey, I am sure you can just begin to imagine how excited I was to be able to enjoy this fine sipping whiskey yet again.
Christmas day the kids all come over, I make beignets, and set out fruit and cheese for noshing, and we open gifts. This year Robert had finally cleared out the back section of our back yard and started making the BMX track for Joseph to ride on that he had been promising. Not everything they had discussed was built, but there were enough berms and a large tabletop in place they could ride back there with ease. Great Grandpa Hassing and Great Grandma Sue gave Joseph riding gear for Christmas, while we supplied a bike to keep here, along with a helmet, all in his favorite color green. Then Grandpa surprised Joseph by coming out on a bike himself so they could ride together. The kid was in heaven, so happy to be able to ride out back in his own special riding area.
The New Year found us once again up north with my parents celebrating the holidays with them. We took a day to go exploring with my brother Rob and nephew Kevin. We headed to the north side of the Golden Gate Bridge to check out the scenery, do a little hiking, and ended up on Rodeo Beach where Kevin built a stacked sculpture from items found on the beach. We all had a great day being outdoors and spending time together. Good food while we were up there, wonderful conversations, and a relaxing time spent with all of them before we headed back home and back to work.
We also now have a grandkitty. A small kitten was found in a dumpster with an infection in her left eye socket and starving. Heather agreed to foster the kitten while they had her on antibiotics to clear up the infection and to see if she even had an eye in the socket. The vet Heather works for didn’t think she had an eye, but it was hard to say for sure due to the massive infection. She still needed to be bottle fed for a bit before she could be weaned to kitten food. Heather, Jose and Joseph originally thought to name her Mittens because of her markings (black and white); we suggested a better name – Winky.
Winky is what we call a foster fail. Heather agreed to foster until she was ready to be adopted, but it seems the family is in love with that cute little one eyed beauty, so there will be no adoption. Winky has her forever home and we have an adorable grandkitty that comes over for family dinners.
Robert has agreed to watch Joseph several times when he has holidays from school, but Heather and Jose both had to work. They have enjoyed their bonding time of riding in the back yard together, watching movies and eating pizza. It’s so much fun to watch the two of them together.
I continued to fight with Dr. R about getting me off Gabapentin for two more months before I finally told him I was referred to him to manage the psychotropic drugs to deal with my neuropathy symptoms since Gabapentin made me so dang tired. He made the mistake of asking me once again how irritated I was feeling. I told him the only thing irritating me was him, and why was I spending my money there to get off of Gabapentin if he was not going to help change the medication over to the next phase of drugs – the psychotropic meds? He seemed to want to ignore that statement and asked me yet again about work. In February and I had added another hour to my workday, so I am now working 11am to 4pm. He wanted to know how this was going; did I feel stressed about my working conditions? Every appointment he asks me this, and every appointment I tell him I am not stressed about work, or the conditions! Yes, I now work for the person who used to work for me. Yes, my old job is no longer available, but the President of the company did not have to take me back, yet he did. I am working, slowly getting back to full time, and not being pressured to do more than I think I can handle without stressing myself out or overdoing what I can physically handle. What do I have to stress about, other than you Dr. R? I once again explained to him why I was there, not for him to manage my moods or emotional state, but to manage the prescription medications to manage my neuropathy. His first response was I do not manage neuropathy. I must have given him “the look”, as he immediately asked me when I see my Oncologist again. I told him I had just seen her. He then asked me “what did he suggest?” I told him “SHE suggested Lyrica”. He gave me a look and said ok, let us stop the Gabapentin and we are going to try Klonopin which is a sedative used for seizures, panic disorder and anxiety. Psychotropic drug in the benzodiazepine family. He started me off on the lowest dose, .5mg. I am not thrilled that we are starting with this particular psychotropic drug, but glad that he is finally listening to me and we are now turning in the direction that I need, not the direction his overbearing pompous ass has decided I should be going.
Heather, Joseph and I went down to San Diego area twice for
Guild meeting and projects. I had a
wonderful time visiting with our Guild members both times and I am looking
forward to spring fair. I will only be
attending one weekend as my dear cousin has scheduled the family Passover Seder
on the last DAY of Passover, which is also the same as the first weekend of
spring fair. For those of you who don’t
know, Jewish holidays start at sundown the evening before the day of the
holiday and run until sundown of the last day of the holiday (for one day
holidays it is from sundown to sundown, for multiday holidays it runs sundown,
days 1, 2, 3… to last day of celebration sundown). Since I missed Passover with my family last
year, I do not want to miss it again this year.
So only one weekend of fair for me this spring.
I had my first “infection” since chemo. I woke up one Monday morning about 4am with
the chills, body aches, and my face feeling like it was about to blow off from
all the pressure in my sinuses, but I could breathe just fine. I took a dose of Nyquil and went back to
bed. Finally dragged myself up again
about 9am and was still shivering. The
last time I was shivering like that and could not seem to get warm was when I
was on chemo. Duh, I must have a
fever! I pulled out the thermometer we
had purchased to keep tabs on me during chemo treatments and took my
temperature. It beeped after about 30
seconds and when I pulled it out from under my tongue, it read 358o! Then it flashed red and displayed the message
it had a low battery. For a second I
thought for sure the message was going to tell me to get to the ER now! I asked Robert to feel my forehead instead
and he said it felt a little warm. I was
still feeling the major body aches and the sinus pressure, so took another dose
of Nyquil, texted the office I would not be in and went back to bed. Other than getting up to pee and drink more water,
I slept the whole day and that night.
The following day I was still feeling the same, so stayed home from work another day and other than about 2 hours in the afternoon that I forced myself up to eat something, I slept in bed. Robert knew I must be sick if I was not even getting out of bed and napping on the sofa, which is what I mostly did while I was on chemo. I would get up, make myself wash and brush my teeth and head to the sofa. Even though I was exhausted most of the time, I would still take my naps on the sofa, not in bed. I was not ILL then. Well, except for that one time when I spiked the fever, but the antibiotics I was supplied with at the start of chemo took care of that right away.
By Wednesday of that week, I still felt the pressure in my sinuses, but the body aches and the chills had mostly subsided, and my ears were feeling clogged, but I was still breathing ok, so I went back to work. Same with the following week, but now that pressure in my sinuses was starting to create congestion, and I developed a cough, that was just getting worse. I called my GP’s office and scheduled an appointment on that Friday morning. She was not happy with me. I had blazing ear infections, a glorious sinus infection (even though when I blew my nose my phlegm was clear, but when I used my Neti pot, that would flush some nasty looking globs out of my sinuses), and she didn’t really like the sound of my upper lungs. No crackling but I did sound a little wheezy, so the infection was trying to work its way down. In addition, I had been masking my fever for the past week and a half with Dayquil. I was at 99.9o when they took my temp there. I was told to go back home, take the antibiotics and rest. I could go back to work next week.
I was not sure how I felt about being ill. It almost felt like a badge of honor and I
should be proud, I survived Chemo, surgery and radiation and now I was allowed
to be “normal” and pick up the passed around germs and develop infections like
all the rest of the “non-cancer” people.
On the other hand, I was not liking being sick. It felt so foreign now.
During my 14 months of treatment and recovery, I re-connected with one of my high school teachers. I loved this teacher, he cared about his students, and even though he was the music teacher, and I did not play an instrument, I did have him as the director of marching band – I was in the rifle core. In the spring, he would have me as his TA for my first class of the day so my schedule would not get messed up. He would talk to us, try to impart wisdom, and was always there to listen when we had a problem, whether at school or home. If you messed up he expected you to be honest about your mistakes and he imposed penalties. Usually an essay about what you did wrong, examine your motives and decision making, how your error affected those around you and yourself, and then provide a plan on how to prevent the same error in the future. He cared.
He planned a trip to SoCal at the beginning of March. We made arrangements to meet up for coffee
and a nosh before I had to get into work.
It was wonderful catching up with him and hearing about some of my
classmates. We talked about some neither of us have connected with since
graduation, which we both found sad. One
of my classmates won an Oscar this year! He was very proud of what this student
had done with his music.
Now to address what I have not wanted to put in writing as
it makes it all too real. Two of the
women in my support group are still battling their triple negative breast
cancer (TNBC). Mary Jo knew she was
positive for the BRCA1 gene mutation, but had not had a prophylactic bi-lateral
mastectomy. Last year she found a lump
in one breast and when they did the diagnostic imaging they found another
smaller lump (DCIS) in her other breast.
She opted for chemo and a lumpectomy on the invasive spot, but wanted to
wait and see what would happen with the DCIS.
When she had her lumpectomy, she had not had a complete pathological
response to chemo, even though her invasive tumor had shrunk considerably. She also was afraid radiation therapy would
cause her more problems with recurrence, so opted to reject that recommended
treatment. Her doctor did enroll her in
a trial group for immuno-therapy though.
A few months later, she found another lump in the same breast that had
the lumpectomy. This time she did have a
mastectomy and she is now back on chemo.
She has sought out a secondary opinion with an Oncologist at City of Hope. The first thing they told her is that the chemo regime she was originally given is not a proven track record for those with the BRCA1 mutation. Her original Oncologist should have known this as it is proven in journals and AMA publications. The standard chemo regime for TNBC with BRCA1 mutation is different than those without the BRCA1 mutation. Her oncologist had put her back on two of the standard drugs, Taxol and Carboplatin, in the standard dosing. Since she went back to them with the City of Hope’s initial information, they have changed her chemo regime to the correct one for BRCA1 – Gemzar and Carboplatin in a dose dense cycle; switching off weeks and waiting a week before starting the next cycle. We are all very hopeful that with the City of Hope now consulting on her treatment plan, that this will kill off any residual cancer cells and she can be cancer free.
The other woman in my group with TNBC is Kelly. She is negative for all the usual gene
mutations they now test for BC risk.
When she originally found her lump, her doctor ordered an
Ultrasound. The tech only scanned half
her breast, and they proceeded to schedule her for a lumpectomy rather than a
biopsy. Her pathology report came back
as TNBC, so they then put her on chemo.
She was going to opt for a bi-lateral mastectomy and trans-flap
reconstruction and avoid the radiation therapy.
As she ended chemo and was waiting on her body to recover enough for
surgery she kept feeling a lump very close to where her original lump had
been. Her oncologist kept telling her it
was just scar tissue, not to worry. She
finally insisted they do an ultrasound. That
was when she found out the original ultrasound was done on only half her
breast. This time they did both breasts.
They found another lump and did a biopsy. With the pathology report due any second, as
she was going into surgery for the bi-lateral mastectomy and trans-flap
surgery, she told her oncology surgeon that if the pathology report came back
as positive for ANY active cancer, she did not want the reconstructive
surgery. 13.5 hours later, she woke to
find that it was active TNBC, and despite her request to omit the
reconstructive portion of surgery if there was still active cancer, the plastic
surgeon had proceeded with the reconstruction.
Several weeks after this happened she noticed a rash on the side where her lumpectomy had been. Her oncologist told her it was probably a reaction to something and not to worry about. Her rash quickly spread and grew worse – becoming painful with open sores. She insisted they biopsy the rash to figure out what it was. TNBC, due to sloppy surgery had been spread to her skin. They scheduled her for radiation treatment. In the meantime, she went to City of Hope for a second opinion. First, they told her after reviewing all her records that she had grounds for a malpractice suit. Then they told her that if they cannot cure this spread of her TNBC, they can manage it long term. They had several TNBC patients on long-term management care, one going on 20 years now. She is now going to UCLA with oversight from City of Hope and fighting for her life.
Yes, these stories scare the shit out of me. I remind myself that after chemo I had no signs of active cancer from my original tumor and no signs of active cancer in my lymph nodes. This is such a positive for me in regards to my long-term recurrence and survival rates. This helps when that little dragon tries to do loops in my torso, and the demon in my brain tries to negate every positive thought in my brain. When I feel the that dragon and demon, I remind myself to relax my jaw, to breathe in slowly and deeply, hold a moment then exhale just as slowly. I start paying attention to what I hear, see and feel around me to take my focus away from the negative and be in the moment.
These two strong, fighting women, along with Armanda who is the ER/PR positive metastatic “newcomer” to our group inspire me and scare me at the same time. I pray for them daily for their cure, then follow that with if not cured, then let them be on long term, VERY long term management of their cancers.
My medical leave officially starts on Friday, but tomorrow I have to report to the hospital in the morning to have my port installed. They use a local in combination with a twilight drug, so I can’t go back to the office after the procedure is completed. Today was my last day in the office.
It was bittersweet. I received flowers and a box of chocolates from the company, and some really nice cards. My boss said I had to eat the chocolates, I could not leave them behind for him. I keep my boss supplied in dark chocolate. Even told him I’d send my husband down from time to time with a resupply.
As the girls in the office started leaving for the day, the would stop by my office to give me a final hug good bye and reaffirm their faith in me to kick cancers ass.
They all know I am still going to be helping as I can from home, mostly helping with research on issues and systems maintenance. But it was so heartwarming to have them all go out of their way to wish me well and add their words of encouragement to the battle ahead.
I am so thankful for the people I work with. I know I have been blessed in this area. I cannot even imagine being able to do this without their support and the constant reminding me that I am strong and can do this. They are a fantastic group of people and I love working with all of them.
I arrived home to find a Cancer care box had been delivered courtesy of my cousin. She purchased it through Choose Hope. It included a T-Shift, soft blanket, and warm fuzzy socks, a water bottle, a note book, a magnet with the a reminder of what Cancer Cannot Do, hand sanitizer, moisturizer and lip balm and all with a tote bag to carry it all to Chemo treatments.
On top of that, she told the family how to order personalized shirts to reflect their support of me through the Komen Foundation.
If I have to do this, at least I know I have the support of so many! My family is great at this, so supportive and keeping spirits up. Getting in with their sleeves rolled up to do what needs to be done. And then there all the wonderful people I’ve met over the years, between work and Ren Faire. I have made some really great friends and all of them have been and continue to be so supportive.
I am feeling more in control the closer I get to treatment starting next Tuesday. I am grateful every day for all the wonderful people in my life that are rallying around me to cheer me on and help keep me strong through this process.
Between all these wonderful people, my husband and my kids, I will make it through this metamorphosis and be something beautiful on the other side.
Speaking of husband, he had previously decorated our bathroom mirror with my daily reminder that this is treatable, curable, survivable and temporary.
I had my annual physical in the morning. My primary care physician was so sorry I am dealing with this. Later, I realized she never asked me about getting my annual mammogram. The left breast has only had a recent MRI. I wonder if that counts.
We talked about my sleeping problems, and I told her the Oncologist prescribed Ambien, but I’ve only used it a few times. Are there any other options? She reviewed some and suggested Lunesta, but the same issues with that as Ambien mean it should not be taken consistently for an extended period of time. I told her I would think about it. She gave me a handwritten Rx, just in case.
I asked her if I should see a dietitian, but she wants to wait and see how I do on chemo before we go that route. I told her I worried about my weight loss and our goal. She said we would cross that bridge as we came to it during chemo. I still want to reach my goal weight. I am still not comfortable in my body. And that is besides The Lump.
We talked about everything that had happened in less than a month, how I fell apart from my first Support Group. She asked if I was going to go back. Well, yes. Just because I was overwhelmed last week doesn’t mean I can’t try to find some value in this. My husband found value in his support group when he didn’t expect to connect at all. I can do this.
We went over my blood work, Thyroid was a little high, I told her I actually forgot which day I was skipping a pill (my dosage for several years now has been 6 days a week, one day off). I messed it up the week before my blood draw, and I have a feeling I took more than 7 pills that week. It’s been a bad month. I swear I will be better, and I have already double-checked my dosage for this week after I realized on Sunday that I had taken a pill the night before, and I had one in my hand for my “day” pills.
Then, there were some white blood cells in my urine—not a lot, and nothing grew when the lab tried to culture any bacteria. I told her the lab I went to had no antiseptic wipes. I washed as best I could with a paper towel, soap, and water, but… So yeah, I don’t plan on going back to that lab again. I was surprised that for clean catch, they had nothing!
Everything else on my labs was fine.
We agreed that I should increase my D3 to at least 2000 IU daily instead of just 3x weekly. She said I could go higher.
I forgot to ask her about a medical cannabis card, just in case. We’ve (husband and I) talked about how if chemo is really rough on me, this is an option. Just the cannabis oils or edibles. Really not interested in smoking!
I went home, did some work, and then had to turn around and return to have the echo-cardiogram. It’s the same medical complex. I told them I’d had at least two echoes previously at Torrance Memorial, but they said I had to do a complete baseline echo because this was my first time in their office. They didn’t even have a gel warmer! And the poor ultrasound tech had to sit on a metal folding chair. I was not all that impressed with that office, but oh well. I have a new baseline echo-cardiogram on file.
I went back home and got back to working. I worked straight through till a little after 5 pm when we had to leave for our respective Support Group meetings.
We got there a little earlier than we anticipated, so we took a walk around the pier. Husband asked me if the absolute worst should happen in this process, and we have to plan for my death, have I decided what I want done? Well, yeah, we’ve discussed this before. I want direct in-ground shroud wrapped burial. There is a place north of San Francisco that does this. He joked that what, I just fold you into the car and drive you up there? I told him I had the information before, I just don’t remember where I put it so I will pull it up again and create a file.
Then he asked me about any type of service… Wow, we’re really discussing this, right before Support Group, where last week it broke me. Ok, I can do this, it’s life. I think about that part, a service, or life celebration or whatever. I don’t know, but I think if this does go south, I think my family will need something. There will need to be a celebration of life. Then he asks me where? Do I have to do this up North? No, No, it needs to be done here. The kids are here, you’re here, most of our friends are here. The rest of the family will just have to be inconvenienced this time instead of us. They have to come to you and the kids. You and the kids should NOT have to go to them to celebrate my life and the fact that it ended so much earlier than I ever planned. Then my husband asked me if he would have a fight with my mother over this. I told him I don’t care what she wants, this is about you and the kids and what I want. He said good, if he had to, he’d tell her to F off. He has my permission. If it comes to this, he gets the easy out. None of them (husband and kids) should have to travel because a celebration of life service for me is not convenient for the rest of my family.
Then we talked about him, I’ve always known he wants to be cremated, but he’s never said what he wants done with his ashes. He said I could do whatever I want with his ashes. Put them in a urn and keep them on a shelf, scatter him in the waters at Disneyland (which they don’t allow, but I’d find a way I think). He wasn’t sure about any kind of service or celebration. He thinks no one would attend but me and the kids.
We finished our discussion before we went in for our Support Groups.
I did admit to mine this week that I came out of last week totally overwhelmed and broken. They were very glad I came back.
This week went much better. I’m still pissed that I’m going to loose my F’ing eyelashes, but I can deal with it if I have to… They were all very supportive and understanding and validated my feelings of being angry about the damn eyelashes. I know it’s a stupid thing to be hung up on, but everyone’s got something, right?
It was a good night, and despite the apprehension of the unknown, as everyone is different on chemo, I feel better prepared now, and more in control. My dragon is still there, lurking, but does not have the same hold it had just a few days ago.
We went to our support group meetings. My husband went to his room at the Cancer Wellness Community, and I went to mine. There were about 14 of us total in my group. There was one other “new” person besides me. The group leader had the “veterans” introduce themselves and briefly describe their diagnosis and treatments. Then it was our turn, the two new ones to the group.
There were women there in various stages of hair regrowth or loss, and one gal who had not been to the group in 6 months and they were surprised to see her back. Once you join a group, they ask you to continue going until 18 months after your last treatment, whatever it may be.
As the women took turns introducing themselves, it became evident that their original diagnosis and treatment plans all changed to add additional therapy to their original plan. Those who planned lumpectomy ended up with full mastectomy or even double mastectomy, and so on. One woman now battles lymphedema. This happens randomly when the lymph system stops cycling lymph in that area due to trauma from surgery. This builds up in the surrounding tissue, causing swelling. There is no cure, but some things can be done to help deal with the swelling and discomfort.
I was asked about my thyroid cancer and told them about my experience with that briefly. And around the circle, the discussion kept going, bone pain from Neulasta, nerve pain from the chemo setting in after the second to last round. Being tired, ready for it to finally end. The astonishment at how long I have been scheduled to receive chemo – 5 months. Most of them, it’s been two, maybe 3 months of chemo. Even the beautiful woman to my right said she was diagnosed with the same thing as me. She only had 6 cycles of chemo, three of the drugs that I will be having. She had to have a mastectomy. I don’t know who is more worried now, her or me.
Every one of them has opted for reconstruction.
One was talking about how happy she is to get her eyelashes back; they are finally starting to grow. At this point, about half an inch of hair had regrown on her head.
As I sat there with all my curly red hair, and my fun, blue, green, pink, and purple peeking out from underneath, I realized I love my boobs, and I didn’t want anyone taking them from me. If they do have to go so I can live, I think I may want reconstruction. And all of these women have terrified me. What is going to happen to me? Can I do this? I have always thought of myself as strong, and I can take this on, but oh my God, I can’t do this. I can’t cut off my breasts; I can’t lose my eyelashes! I’m going to lose my fucking eyelashes, my beautiful, thick, long dark lashes that frame my blue eyes and help hide my hooded eyes so they don’t look small. Take my hair, take my eyebrows, and take all my body hair, but I can’t lose my eyelashes….
I don’t think they notice how withdrawn I’ve become during all their talking. On it goes; they talk about recurrence after being done for 6 months, waking up from surgery, finding the worst-case scenario has happened, scars that have to be repaired, additional surgeries, mouth sores, bone pain, and losing your eyelashes. I can’t do this. Just sit here, be calm, and don’t show them how your insides have turned to jelly. All these women have survived; you can do this. Oh my god, I can’t do this.
The group is done. I smile and thank those who come to say goodbye; I grab my bag and sweater and head to the front to meet my husband. My husband is still in his meeting room. I can hear them talking; he is talking. He is talking to one, maybe two other people, I think. He’s connecting; they are sharing. I, on the other hand, am a quivering mass of overwhelming anxiety, fear, and doubt, and I am going to lose my damn eyelashes.
He finally comes out. He is still talking with one of the guys from his group. He is bonding; I am falling apart. We’re being asked to exit the building so they can lock up. My husband gets a phone number; he’s making connections. This man who thought he would not fit in would not belong is belonging.
Goodbyes are exchanged, and we head to our car. He’s holding my hand, he’s telling me about his group. I just keep nodding, uh-huh, yeah. Then he asks me how I am. My lungs don’t work, all that gray and red fear and anxiety is no longer a tight little ball in the corner of my gut, it’s free, flying throughout my body, my knees want to buckle, my ears buzz, my heart feels as if it has stopped. All this starts to leak out of my eyes. I squeeze them shut, and all I can do is shake my head. No, no, I am not alright. He asks me what is wrong, all I can say is “It’s just too much, it’s too much, I can’t do this yet, it’s too much….” and I crumble and fall to pieces. He’s holding me and saying he’s so sorry. He didn’t mean to break me. He made me do this, and I am broken.
I am so lost. I don’t know how to pull this together right now. I don’t know how to stop the falling apart. It was the damn eyelashes… He’s holding me and telling me we can do this. It doesn’t matter what I physically lose in this process, we will survive this, and be stronger on the other side. He’s getting me to talk, what was it that was so overwhelming? It was all of it. I realize I am in mourning. I am mourning the loss of my life as I have known it to this point. I am mourning the loss of my security, knowing I had beat cancer, I would live a long life watching my family grow, watching our grandson grow, learn, fall in love, be heartbroken fall in love again, have a family. Grow old with my husband. Now all that could be gone. Uncertainty, tests, and anxiety for years until I know this is beat yet again. Mourning the loss of my breasts, which I realized in a moment in that room that I love. I love that I have nursed three children from them and that my husband knows how to touch them just right. I love their weight and shape. How they look in my clothes. I am morning, and they will forever be changed from this. If I only have a lumpectomy, it will change one, and the other will be changed to match.
I am mourning the loss of my innocence in dealing with cancer at this magnitude. I am mourning that I have to know all these things about chemo, and nutrition and lymph nodes, losing my hair, and regrowing eyelashes, dry mouth, nausea, bone pain, exhaustion, battling mouth sores, and radiation burns and surgery, scar tissue, infections, and lymphedema…
Life is broken, life is sad, life has kicked me when I was down.
We go to the Cancer Support Community, as Evelyn directed, as Robert insisted. He has to go with me. I cannot do this alone. We meet with several interns there who provide us with a brief tour before we are taken to a room to learn about the center, how they are funded, what services they provide, and for them to learn about us. I feel small. I feel insignificant. I feel lost. I can do this. I feel lost…
There are three of us with cancer: a gentleman with bladder cancer and only one kidney, and his wife, who I can tell is desperate to have something to cling to. A young woman who almost died of Leukemia is waiting for a bone marrow match. And me, the one with the aggressive, triple-negative breast cancer.
There is another person in our “Welcome” group; her brother is dying, and she is distraught. Her parents died when she was 7; I gather her brother raised her. And my husband. My black and white, sarcastic, dry-witted, loving husband. The man who thought at a way too early age that he would not live past 50 had a bucket list by age 10 and started working on it by 20. This deep-hearted, compassionate man who hates drama hates dramatic, over-emotional upheavals. Who thinks he cannot benefit from being in a group all sitting around feeling sorry for themselves rather than taking some sort of positive action? I sit next to this man and realize he needs this as much as I do. We must get through this together and with as much help as possible.
As we’re all being handed the paperwork necessary to fill out to continue with placement in a support group, I tell him if I have to join a support group, he does as well. There are three support groups offered, three nights a week. One for spouses/companions, one for newly diagnosed breast cancer patients, and one for other cancer patients. We pick Tuesday nights. We will start next Tuesday. We are shown more of the facility. I am trying to remain calm, to keep the fear-laced anxiety contained. It bubbles up and threatens to consume me. With all my willpower, I push it back yet again. I can do this. I have so many in my life I can call on for support. Oh my God, how is this happening to me….
I have to talk to my family about this. They have been so patient about this. I still have not processed this, this lump, this process; why am I struggling so much? I am still so lost, small, and frightened, and The Lump is so big. How did I miss it for so long? What is WRONG with me? I can do this. I can beat this; who cares if I have no boobs? Who cares if I have fake ones? Will I care? I have fucking CANCER! Breathe… I feel like I’m constantly on the verge of tears.
We finish up at the Cancer Support Community, and because it’s National Ice Cream Cone Day, stop for an Ice Cream Cone. I go back to work. I should be exhausted. Sleep is still not coming to me. Will I still be able to be attractive when this is over?
My husband purchased Pink Die-Cut tape-backed letters and stuck them on the bathroom mirror: Treatable, Curable, Survivable, Temporary. I love him.
