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.
A few months ago I happened to read
a published text thread about a person who’s father had died when they were 18,
and mom had scattered some of dad’s cremains here and there and was holding on
to the rest until this person had picked out a nice holder for their portion of
dad’s ashes. When this person finally found the perfect container and went to
mom for a small portion of the cremains, Dad’s ashes had solidified. Long story
short, there is this hilariously long text thread about Dad’s solidified cremains. (linked to the published text thread)
That lead to us discussing my father
in laws cremains that my husband had scattered some over the VA Cemetery per
Dad’s wishes and we’ve been holding on to the rest to scatter where he asked in
his will. Life has happened so Dad’s cremains have been stored in a box in our
bonus room for a while now. Recently Robert checked Dad’s cremains only find
that yes, they had solidified. Makes me want to find the original publisher of
that text thread and ask them what actually worked!
The reason Robert had checked on
Dad’s cremains was we needed to clean up the bonus room so that Heather, Jose
and Joseph could move into that room temporarily after they bought a house in
Bakersfield and needed to wait to complete their move until Joseph was out of
school.
We enjoyed all the time we were able to spend with the Grandson, the Grand Kitty, and our kids, even though they spent most weekends preparing their new house for when they would get to move in permanently. One weekend it was just Jose up at the new house, and the neighbors came out and asked him if he was the paint guy. We had a good laugh over that one and have now nicknamed him “Jose – The Paint Guy”.
Winky made herself quite at home in the time they spent at our house….
We took a trip up north to re-start our annual trips to our favorite winery with my dad and mom#2. This year the spring members’ event at Schramsberg was supposed to be in The Grove, which is one of our favorite spots, but Mother Nature had other plans. It rained that day so we celebrated in the caves instead. We enjoyed the time in the caves tasting the new releases and food, and of course wine purchased.
Also in the past month Kelly, our soon to be DIL, passed her state licensing exam and is now a fully licensed Doctor of Psychology in the state of California. We’re so proud for her and this great accomplishment. Jordon and Kelly can now concentrate on planning their wedding for later this year.
The weekend before the kids last week in our house, Joseph was going to spend Sunday with Grandpa, while Heather and I joined the rest of the bridal party to go bridesmaid dress shopping with Kelly and her mother. Joseph decided that spending the day with Grandpa included him helping Grandpa with the chore of washing our bed sheets. Because I dye my hair purple, and purple dye is not permanent, it rubs off on my pillow case. As Robert was pre-treating my pillow case with stain remover, Joseph asked him what the purplish pink stains on the pillow case were. Robert being the quick witted joker he is, told Joseph that sometimes at night Nane’s brains leak out her ears and stain the pillow case. With a horrified look on his face, Joseph them asked Grandpa if it hurt when my brains leaked out my ears. Grandpa told Joseph he should ask Nane about that.
Stained Pillowcase
Heather and I were in their room when he came in and asked me if he could ask me a question. He whispered the question at Heather and I were in their room when he came in and asked me if he could ask me a question. He whispered the question at first and I could not hear him, but I could see Robert hiding in the kitchen doorway with his shoulder that was visible shaking from him stifling his laughter. My first thought was “Oh lord, what has he said now?” I asked Joseph to speak up a little more so I could hear his question, and he repeated his question “Nane, does it hurt when your brains leak out your ears at night?” Heather was the first to react to the question, asking Joseph why he would think that. Robert could not hold back his laughter anymore and between the three of them, Heather trying to act indignant, Joseph confused and Robert laughing, I started laughing too. Between Robert and Joseph we got the story behind the question and I looked at Joseph with a smile on my face and asked him “What color is Nane’s hair?” He looked at my head and as he was saying purple, you could see the light dawning on his face that he had been had by Grandpa. I confirmed that yes; the color on the pillowcase is from the dye in my hair rubbing off during the night. Joseph did laugh then. Later in the day after Grandpa had continued to joke with Joseph about my brains leaking out, Joseph finally said to Grandpa that it was not funny anymore.
My foot is healing up well from my wart removal surgery, and the current dosing of Klonopin is working well in controlling the worst of the side effects of my neuropathy. I changed it up a bit, two days full dose, 1 day 1/2 dose, 1 day full dose, 1 day half dose and start over.
I also agreed to talk with a new trucking company that had been reaching out to me for a few months through LinkedIn about a employment opportunity. I ignored the first messages from the company and several head hunters trying to entice me with vague job descriptions and promises of great benefits. After a third direct attempt from this company with more information of what they were looking for and what they are doing currently, I figured the universe was trying to tell me something. I responded to the LinkedIn message.
This lead to a phone interview, which led to another, and then a in person meeting. I can’t really say the first in person meetings were an interview per se, more of an exchanging of ideas and what they want and what I want back and forth. This lead to other in person meetings and them practically throwing me a package that listed their medical, dental and vision plans along with a cost sheet before I made a decision to commit to them. After thinking about it I agreed to let them make a formal offer, which turned out to be an offer I just could not refuse.
This was not an easy decision for me to make, as my current employer had been so good to us, to me. When I went to work for them in 2011, I really did think this would be my last job before I retired. But again, the Work Gods had something else in store for me. I am excited to be starting this new adventure, and a little scared at the same time. But if it doesn’t scare you a little, it’s probably not worth doing.
Last Friday was the last day the kids were here. Heather’s last day of work at the pet hospital was last Thursday. Friday May 31 was Joseph’s last day of school. Grandpa was up and cranked Alice Coopers Schools Out for Summer while Joseph was getting ready. It only took him a few minutes of listening to the song before he was singing the lyrics while brushing his teeth.
Heather packed up the last of their belongings, except for their bed, and headed to Bakersfield with Winky (grand kitty) about the same time I headed into work. Jose picked Joseph up from school and they went to enjoy the carnival that was taking place at his school Friday afternoon. They headed to our place about 8pm and picked up the mattress and then they were gone too. We’re empty nesters once again.
Saturday found me heading into Long Beach to catch up with old co-workers from APL. We try to have an APL Oldies reunion at least once a year. It was good to see some of the people I miss dearly, and catch up with them once again. The last time we went I had no hair. Everyone loved my new purple hair.
Before this whole boob thing happened, I had three little Planters
warts on the ball of my right foot, below my big toe and middle toe. They did not bother me so I just left them
alone. When I was told I would need ALL
the treatments – chemo, surgery and radiation, I had a little thought in the
back of my head “Oh good, chemo will kill those damn warts on my right
foot!” I was not so lucky; instead, they
spread to five warts.
About three months ago, I woke one morning and when I put my
foot down, I immediately felt like I was walking on pebbles on the ball of my
right foot. At first, I thought it was
my neuropathy acting up; but when the sensation lasted for several days and
only in my right foot, I realized it was not the neuropathy at all but the
warts. I called my Primary Care doctor
for an appointment and was able to get in the very next day. She looked at them and said we could try freezing
them off. I agreed and she had her nurse
get the gun of liquid nitrogen.
A month later, I was back, and she tried again. Despite cutting and digging at the deadened
skin, trying to get to the bottom of the black spot in the middle of each
little wart, they returned as if nothing had happened. The black spot is the blood supply for the
wart. When I talked to my doctor the
third time she referred me to a podiatrist.
Last week I met with the podiatrist and he said we had three options;
freezing, acid, or cutting. Since
freezing had not worked the first two times, we both agreed that was out. He was worried that because they were so
small, but deep, that acid would take a long time and cause me undo pain from
burning the skin around the warts. I
agreed with that as well, so that left surgery.
His wife was pregnant with their third child and due in a week. When we started looking at what appointments
were available since my originally scheduled appointment the receptionist
forgot to include reservation of the “surgery room”, we decided he would
squeeze me in the next day.
I arrived last Friday afternoon for my appointed surgery, and
advised both him and his nurse that I suffer from Vasovagel Syndrome, and it
would be best to have the chair fully extended into a prone position with my
head lower than the rest of me. They
were a great team and worked so well with me to keep the effects of the
Vasovagel Syndrome in check. His nurse
got me an ice pack for my neck, and he allowed me time to breathe and center
myself between injections of lidocaine into the bottom of my foot. A couple spots needed an extra boost of lidocaine.
Dr. Truong ended up only cutting four times, as two of the
warts were so close together he cut them out as one unit. He did send them to pathology to be sure they
were just warts, not a sign of something else.
He told me I had to soak my foot twice a day with Epsom salts and apply Silvadene
to each hole in the bottom of my foot before I bandaged it up. I took my biggest/widest shoes with me, but
after he applied a 4×4-gauze sponge folded in half, gauze wrapping, than
stretch tape to apply pressure to control the bleeding, my foot would not fit
into my “big” shoes. I ended up with a
small walking boot, not one that goes up the leg; the kind with a flat bottom,
soft sides/top and Velcro closures over the top of the foot. Yesterday was the first day where I could apply
one gauze 4×4 with some tape and fit my foot into a normal shoe.
Today I had my check up with one of Dr. Truong’s colleagues,
as his wife went into labor yesterday.
Dr. Ishibashi looked at my foot and said it all looks good. Keeping it moist is what we want as it slowly
heals up. I sure hope those damn
Planters warts do not come back after this!
I also had my latest follow up with Dr. Sikaria this
morning. Evidently, my insurance no
longer partners with Cancer Care, and I will be set up with new Oncologist in
the group that my insurance now has a contract with for Oncology services. Dr. Sikaria said they should have sent me
announcement last November. I think I
would have remembered if I received such a notice from my medical insurance provider. I am going off to a new oncologist in good
health, with the recommendation to see my new oncologist in four months and to
have a screening mammogram in 6 months.
Robert was with me and asked about those patients currently going
through active treatment, did they have to change as well? Dr. Sikaria advised no, they could not make
them switch mid-treatment, but once they complete active treatment they will
have to transition to the new provider.
She did confirm that my latest mammogram was good, they only detected
the changes from surgery, and my last blood work was good too. My liver really did not like chemo, but it
has recovered nicely and my liver panel is completely back to normal now.
As we were leaving, Robert asked me how I was doing with
this change, which for me is sudden since I swear I did not receive any notice
from the insurance company. I told him I
was ok. I am in a good place, cancer
free still and working on staying healthy.
Cancer Care provided me a number to call once the referral letter
approving my switch to the new Oncology partner arrives in the mail. When I arrived at work I Googled the new
partner groups to get an idea of what my options are going to be once the
referral comes through. That is when I started to feel a bit overwhelmed and
anxious. I took a moment for some deep
breathing to clear my head and center myself, but the sense of unease continues
to niggle around my dragon. She remains
curled up, just fidgety. I guess I am
not as good with this change as I thought I was.
As I continued to peruse what my possible locations and
doctor choices might be, I could feel the panic starting to swell. What if’s start popping in my brain. My dragon continues to be unsettled in my
gut. Then I think, I should call Evelyn
my Nurse Navigator at the Breast Diagnostic Center, she may have some
recommendations for me. That thought
helps bring some calm to my mind, as I try to rationalize, what would happen if
we changed insurance carriers altogether at work, or if I had to get a different
job, I could be faced with the same changes.
On a good note, I have been experimenting over the past four
weeks with the Klonopin, and have come to a good dosing schedule that seems to
work. It controls my neuropathy symptoms
well and does not seem to impact my short-term memory or my ability to do
simple multitasking. Two days taking a
full dose of .5mg, followed by a day with half a dose.
I figured any changes to my right breast from radiation
would happen in the first 6 months, as that is the basic recovery time for
radiation treatment. When the initial
six months passed with just some minor changes to my breast I thought to
myself, I could live with this, I think.
Now it seems I notice a new change weekly. As I was getting ready for bed, I yet again
noticed how much smaller, my right breast is from my left breast. It continues to shrink a little more each passing
week. I miss the weight of my
breasts. Evidently, I had super dense
breast tissue, which is why they had such a firm weight to them. Moreover, they still feel so foreign to
me. Even the left breast, which is not
nearly as numb as the right breast, feels strange, like it is no longer a part
of my body. Lefty has small areas of
numbness around the scar tissue from the reduction surgery, and I would think
having more sensation in that breast would help in feeling like she is still a
part of my own body. Alas, not all these
positives about Lefty help. Lefty is a
good cup size or more larger then my poor traumatized right breast.
As I look at them and contemplate the last 18 months, I wonder about all the decisions made along the way. Should I have opted for a mastectomy and forgone radiation treatment? I could have had full reconstruction then, and maybe my breasts would be closer to sisters rather than distant cousins. I would not be missing a chunk of breast tissue that creates the dimple in my left breast giving it a “W” look. I might not have to face a possible lifetime of tenderness and hypersensitivity on my right breast, and the little third boob off to the side, where according to Robert, the plastic surgeon and a million feet of drainage tube curled in there. I would not now be shoving two of the pads that came with my Knix tank bras into the right cup to try to make my breasts look even and prevent Lefty from pulling my tops askew due to the size discrepancy.
All this second guessing and wondering if I have the courage
to face another surgery to try and fix this brings a tear or two (ok, maybe
ten), to my eye. Then my little
self-doubt demon starts running amok in my brain and reaches down to my heart
with little jabs – you will never be in proportion again. You will never lose the weight you so
desperately want to reduce. You will
never feel sexy again. You will never be
brave enough to be intimate with your husband.
Then my self-pity pixie set in, right behind my eyes, and started
pushing those damn tears out.
I fecking survived this betrayal of my body; it turned against me and tried to kill me, why do I still have problems with the battle scars? Why am I having the hardest time reconciling my new shape and being ok with my body the way it looks now? I would think I would have a harder time dealing with my diminished mental abilities. As frustrating as they are, I feel like I accept these new limitations to my ability to multitask, the speed at which I can figure out complex problems as well as my physical speed in tasks with less emotional effort.
I should be celebrating my battle scars. I should be proud that even though my boobs no longer look the same, are different sizes from one another, and one has minimal ability to feel touching sensation that I still have my breasts. I survived this battle, kicked ass in this battle. It tried to take me down, but I survived. Chemo – bring it on, surgery could not completely change the shape of my body, and radiation, sure, you have wrought changes I am not happy with, but I am alive and cancer free. So dammit you stupid demon and pixie, go back to your hidey-holes in my psyche, I am ready to be proud of these damn battle scars. No more feeling disfigured. No more feeling I am unlovable because of my new imperfections. No second-guessing the battle waged. I won, that is all that counts.
I am taking another stand on my road to where ever my new center resides. I am not there yet, but I am finding my strength and will to get me there. I will find my complete inner peace, where I can work with my dragon, demon and pixie in harmony. So we can heal the wounds that are still open, not continue to scrape and rub at them, keeping them raw and weeping.
I fucking beat a badass cancer that thought it had the best
of me; I have the tools to heal from the battle.
The weekend before his birthday, we had family dinner to
celebrate. We included our friend Linda
as her kids live further away from her than ours do, and does not have the same
opportunities to see them. Moreover, we
really like her! Heather, Jose, Joseph
and Winky arrived early so Joseph could have some grandpa time riding bikes and
hitting balls in the back yard. All was
going well until Heather, Linda and I heard Grandpa yell in obvious pain from
the backyard. We all looked at each
other and as I started to rise Heather said she would go.
We did not hear anything from her for a bit, so assumed all
was ok out back. Not so much… Seems Grandpa was showing Joseph how to ride
a wheelie, and when he transitioned from dirt to the cement pad, the bike slid
out from under him. He has degenerative
disc disease, and landing on his tailbone then rolling back, and hitting his
helmeted head did a huge number on his back.
When Heather did not come back in after about 5 minutes, I went to see
what was going on. Robert was up and
trying to walk it off, but I could tell he was in severe pain. He felt the initial jolt from the landing all
the way up his back to his head. Not
good. I went and got him some Aleve and
tried to convince him to get an ice pack on his back right away. He finally conceded the ice pack would
probably be a good thing after about 15 more minutes.
He spent the rest of the afternoon and evening coddling his back. He did request pizza as his birthday dinner, to which Joseph was very excited. Heather brought his favorite dessert – Marie Calendar’s Lemon Cream Cheese Pie. We ate pizza and it was decided that Grandpa should open his gifts before birthday pie so everyone had a chance to digest their pizza a bit.
Jordon, Kelly, Heather, Jose and Joseph all pitched in to get Robert a driving experience at the Porsche Experience Center in Carson. They got him a package that includes 1.5 hours of track time in one of the cars he has always admired.
In addition, Joseph picked out a T-Shirt for Grandpa that
matches a shirt he has, so they can wear them together when they hang out. Joseph also picked out a gift bag covered in
sharks, with red tissue paper to represent the blood from shark bites.
After presents and birthday pie, in which the musical whirl
candle that did not play birthday music much to my chagrin, Jordon and Joseph
found some old wrapping paper tubes I had put aside for playing with, and
proceeded to have a tube sword duel.
Winky in the meantime was having fun trying to shred all the tissue
paper from the gifts. I do not know who
started it first, but both Joseph and Jordon and picked up all the tissue paper
and shoved it under their shirts. Jordon
had all the red tissue paper and Joseph the white. Anytime Joseph connected to Jordon’s body
with his “sword”, Jordon would reach under his shirt and pull out a piece of
red tissue paper to represent blood. At
one point Joseph got him in the face, so he found one of Winky’s shredded
pieces and shoved it in his nose to represent a bloody nose. I was laughing so hard at their antics! Despite Grandpa having hurt his back, it was a
good start to his 55th birthday.
Robert was worried that his back would not heal in time for
our planned trip to Disneyland on Wednesday.
But he rested his back as much as he could, stayed on Aleve and iced his
back for two full days and felt good enough to make the trip to Anaheim so he
could get his birthday button, and of course get some birthday ice cream.
We were not sure how long either of us was going to last, as I had discovered over the course of a month or so that the Klonopin that Dr. R had prescribed for my neuropathy worked great at controlling my symptoms, but was also effecting my cognition. I lost a lot of mental abilities due to chemo; the ability to concentrate longer than a few minutes, short term memory loss, multitasking abilities, as well as not able to do tasks with ease. I spent months working hard to rehabilitate my brain. I regained the ability to do simple multitasking, like watching TV and knitting at the same time. I am slowly gaining back the ease in doing more complex tasks, but they still take my longer to complete than it used to take. I still cannot multitask if I have a difficult process going.
I used to be able to work on an intricate spreadsheet and
answer someone if they asked me a question without skipping a beat. Now I cannot even acknowledge if someone
sneezes if I am engrossed in a difficult or intricate task. I can hear the sneeze, and acknowledge I have
heard it in my brain, but I cannot physically make my lips/mouth move to say
God Bless You. I used to be able to
take a process I had created in Excel and be able to work through the
process/formulas/macros as I explained each step to someone so they could learn
how to use the tool I had created. I
still cannot do that. I have to put
instructions into a document and hand it over. If someone interrupts me while doing a
thought/concentration intensive task I cannot go right back to the task and
pick it back up where I left off. I have
to go back to a beginning step or start over.
I noticed the longer I took the Klonopin the more advances
in my brain function I was losing. Therefore,
I stopped taking the Klonopin. It has a
fairly long ½ life – about 40 hours, so every 40 hours the amount of active drug
in your system decreases by ½. As the
Klonopin was wearing off, the effects it had on my brain were receding, and I
was back to being able to knit and talk or watch TV again. My short term memory, even though it’s still
bad, did improve back to its previous level of bad; and my typing, even though it is not as fast
as it was before chemo, also improved to
my new speed. Granted I find all these
diminished abilities frustrating, so having a drug make them worse is just not
something I am willing to live with. It
still takes me longer to accomplish tasks that I know I could complete in less
time two years ago. As my brain
improved, the neuropathy symptoms returned.
I had hoped that after over a year of healing from chemo, the neuropathy
would have improved. I am not so lucky
there. Within two weeks I was back to
full on neuropathy symptoms I had before we started Gabapentin to try to
relieve some of the irritation and pain.
After a week or so at full neuropathy pain, I took Robert’s
suggestion of taking ½ a tablet a day instead of a whole tablet. I had been doing this for a little over a
week when we made the trip to Disneyland.
Because we didn’t know how long either of us would last at
Disneyland, we opted to forego renting an ECV.
Robert was in no condition to push me in a wheel chair, and if he could
only last two hours renting an ECV for $50 was just not worth it. We walked into Disneyland and the first thing
we did was get Robert his birthday button.
After that we wandered through the park, saw ducklings, which are always
present at this time of year, then headed over to Cal Adventure to get
lunch. Robert wanted to try a new dish that
is now available at one of the restaurants in Paradise Gardens – The Impossible
Meatless Meatball Sandwich. We both
ordered one and found a seat in the covered patio/dining area where we sat for
over an hour while we ate and talked. The
Impossible meatless meat turned out to be excellent. We finally meandered our way around Cal
Adventure and of course found our way to Ghirardelli Chocolate to get that
birthday ice cream Robert had to have.
Again we sat for over an hour. We
ended up staying almost 5 hours, so it was a good day.
The following day, when I took out the trash, that musical
candle started playing the birthday song.
We had a good laugh. I also
received the letter from the Breast Diagnostic Center advising no signs of
cancer in my first mammogram since September of 2017.
Today was my first mammogram since my diagnostic mammogram
18 months ago. I went by myself, telling
Robert that this was just normal screening; I could manage without him. I need to start weaning myself from the dependency
of requiring Robert at every damn doctor appointment. Time for me to make checkups normal. Make a new normal, or figure out what is
normal. Nothing feels normal anymore,
not even a simple doctor appointment or screening tests to insure I am still
whatever this “normal” is.
Anyway, I went by myself, and was doing well, until I had to
walk up to those doors to the Breast Diagnostic Center. That is when my dragon unfurled from the
little ball it curls itself into a niche in my gut, sleeping away peacefully
until moments like this. She unfurled
her wings and stretched out her tail taking my breath to shallow little gulps,
flicking my heart with her tail causing it to beat irregular. I know how to deal with her, pause, take a
deep breath despite her wings trying to squeeze my lungs. I take note of what I am hearing, birds
chirping, construction work sounds, cars, planes. What do I see, the plants in the planters and
landscaping, a butterfly flitting along a small bush plush with flowers, wispy
clouds in the sky. I take note of how
the air feels, and what I smell. My
little dragon is not squeezing my lungs as tightly now, and her tail has
stopped thumping against my heart.
I walk through the doors and sign in, take a seat and wait for the front desk to call me to register for my appointment. I continue with my cleansing breaths every few minutes to keep my little ball of anxiety dragon calmed down. She is still active, swirling slowly through my torso, but she is not making me feel like I need to put my head between my knees so I do not pass out, or breathe into a paper bag to keep from hyperventilating. I tell myself her occasional squeeze is really just her hugging me in comfort. I pull out my knitting to keep my hands busy and my mind slightly occupied.
As I sit and wait on the check in desk to call my name, I notice the men and women sitting in the lobby. You can tell those who are in for their annual mammogram/imaging, and have never had anything come up on their scans. They have a bored look to them, completely at ease with themselves, knowing they will walk back out those doors with another year tucked under their belt and a clean report. They have done their diligence in early detection of an insidious hijacking by their own body, and can spend the next year with confidence that their body will not be betraying them. I envy those women and the ease they project at being in this place. I used to be one of those women with my feelings of all is right in the world when I went through my annual screening. No history of Breast Cancer in my family that I was aware of, I breast fed my children, had them earlier in life, all positive actions that reduce your risk of breast cancer, this was just another screening as part of my Women’s Health Management. I miss those days. I never had a thought for those who looked tense or uneasy. I never thought of all the worries that come into this place with these women. It never once crossed my mind how hard it could be for some to walk through those doors.
Then there are the ones with the nervous glances, the ones you can see holding their breath, holding their middles as if they too have a dragon like mine, and are trying to hold it still. Those with a cloud of worry in their eyes. Some have a partner or friend with them, a few, like me are alone to brave this place, the little room, the machine that will squeeze intimate parts of your body into an unrecognizable shape while corners of this machine dig into other parts of your body so you are at the right angle to capture the best images. You can see the jittery movements of hands, not knowing what to do with them. Some stare at my short purple hair and I see a knowing look in their eyes. Yes, she is one of us. One of the group of women who no longer walk through the doors knowing that everything will be OK and another year can go by in confidence. I am now one of the women who walk through the doors to face demons and dragons, to face our own mortality and the fear of the unknown.
I get through the registration for my appointment. Since this is my first mammogram since chemo,
three surgeries and radiation, they need a new baseline and this will be a
diagnostic mammogram. The nurse at the
registration desk gave me the sheet of paper with my history and any relevant
information for me to review and give to the tech. I correct a few items and add some
information that is missing, and shortly after the tech comes to the door that
leads to the back part of the center, where all the imaging, biopsies, and
surgery prep procedures are completed.
She leads me to a small room and provides me with the
instructions on what to remove and how to wear the gown she has provided. She pulls the curtain to separate me from the
rest of the room as she continues to talk to me as I change. She told me she has been looking at my last
set of images that led to the biopsy and diagnosis. She makes a comment that the mass was quite
large and asks me how long I had felt it before getting it imaged. I explained to her that I felt it for the
first time just a couple weeks before the biopsy. She asks me how I am feeling after the
lumpectomy, and after a slight pause where I can tell she is reading my file,
she adds in the reshaping of the right breast and reduction of my left
breast. I explain about the seroma, how
it burst though the incision, the months of shoving gauze into my breast, and
finally how it would not heal completely, which led to a third surgery to close
up the remaining area.
I also told her that the mammogram and ultrasound imaging only caught
about half the mass, the MRI that was completed the day of my diagnosis, came
back with a mass almost twice as large as what was measured in the original
imagining.
She then asks me how everything feels now. I explain I still have some numbness on the left breast around the incision areas for the reduction. The right breast is numb in more areas then where I can feel due to the extensive surgeries and sentinel lymph node removal. I also make the comment that I still do not understand how I can be so numb on the right side and yet experience tenderness and hypersensitivity. The Tech explained that due to how much trauma the breast sustained she could not tell me that any of my tenderness, sensitivity and numbness would fade over time. I had changed into the gown by this point and had pulled back the curtain. I looked at her and said, “Well aren’t you full of good news.”
I noticed she still had my last set of digital films up on her screen, so asked her if I could look. She was completely open to letting me see the images. I could clearly see the lump in my right breast. It was white compared to black, gray and grayish white of the rest of my breast tissue. The mass was not clear edged, had little strings of white fading into the surrounding tissue from the large white center of the clearest part of the mass. It took up quite a bit of the lower portion of my beast from the imaging I could see. As I looked at those images, my thoughts were “Ha, I was stronger than you this time. You are gone, and I am still here.”
We proceeded with positioning me for the first round of x-rays, and even though the tech moved the plates slowly to clamp down, flatten and capture as much of my breast tissue as possible, my right breast tenderness was evident from the very first position. I had six different angles taken of each breast in all. After the first four sets, the tech went to consult with the radiologist to be sure she was happy with all the images completed. I asked her if I could look at the current images while I waited. Sure, no problem. This is so different from all my previous mammograms, when I had asked if I could see the images, the techs always denied my requests. I could see the scar tissue in each breast. There was a great deal more scar tissue in the right breast than the left. The scar tissue was very white, and had hard edges compared to the original images from 18 months ago. Some of the edges looked furled and bumpy, but even with those distortions the edges showed clear definition.
The tech returned and said the radiologist wanted two more image angles of each breast and if those came out clear, I would be able to leave. These two angles were the least comfortable and at one point, a corner of the table that holds the bottom plate in place was digging into my armpit. In the less than one minute it took to complete this image, my whole right arm started to tingle.
We completed the x-rays, the tech quickly checked with the
radiologist to make sure she was good with the preliminary review. She returned in moments and said I could get
dressed and the final report would be sent to both my oncologist and primary
care doctor, as well as a note mailed to me with the findings. I took this as a good sign. No rushing me off to ultrasound for more
imaging. I am good.
My right breast continued to ache for the remainder of the
day and through the night. Now I know I
need to take some sort of anti-inflammatory prior to my next mammogram.
The last week of April I, need to get some blood work done, in preparation for my next follow up with Dr. Sikaria (oncologist), the first week of May.
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.
I know I have been absent, but I have not been hiding. I’ve been working on finding my joy. Using my tools under the direction of a therapist to help guide me out of the vast sea of despair I was lost amid, and back to my path towards love, life and laughter. I have been using affirmations, meditation, breathing, stress relief, art and prayer. I’ve made myself do things that I previously found joyful and fulfilling, even though all felt empty. I’ve had to acknowledge my fears and faced them head on knowing there are no answers for them at this time. I faced them anyway, acknowledged them and asked them what they needed. I have felt where they dwell in my body, and slowly learned to recognize my physical reactions so I can work on releasing whatever is trying to overwhelm me before it happens. It’s been hard work, but I am starting to feel stable again.
My last post was when I was attending Renaissance Faire in Escondido. One of the things I did, even though my brain was screaming NO NO NO NO! I love participating in faire and made myself do this even though I still had that part of me that still wanted to withdraw from everything because it no longer brought me joy. I went and despite all my misgivings, had a good time. It was not quite the same joy as before, but it was better than I imagined it would be during this period of recovery. My Guild surprised me the second weekend with the honor of being named “Caption O’Day”. The back-story to our group is we are all pirates visiting a “tavern” in Tortuga Bay. There is no “Captain”, only “Mistress Regina”, the owner of the Tavern where we are “drinking”. They made me cry with how they bestowed this honor on me the second weekend. I love all these people who love me! Based on how well I did this fall, I am now anticipating spring season to be even better. Despite the neuropathy, that still plagues me, I went the whole day in garb (costume), but naps were necessary.
I dyed my hair purple as part of my therapy to find my joy again. I loved having the hidden layers of “galaxy” colors in my hair before I lost it all. So I decided to try dying what I have grown back so far one of my favorite colors from the hidden layers. I love it. Swimming pulls all the color out, as I am only using wash in temporary dye. Because it is a wash-in temporary dye, it is easy to put it back after I swim. Just wash my hair again!
I do not know why I needed someone to assign me “homework” to get me out of that vast ocean of bleakness, but I did. I know all tools I have used them before. I have been in dark places in my past, allowed myself to wallow for a short time, and then used my tools to guide me back to the light, back to my joy. I could not do that this time. Moreover, that petrified me, made me feel like I would never feel all the colors of the wind swirl through my life again. But my therapist has been wonderful, has helped my find guided meditations that address whatever aspect we were working on that week and made me accountable to someone else who knew how to guide me back to where I knew I should be headed.
I have seen the Psychiatrist, Dr. R, three times now. I am still giving him time to manage my neuropathy even though I am still not sure he is the right fit. I am not off the Gabapentin yet, but he is slowly increasing my dosage of Cymbalta to make sure I have no adverse side affects, and to see if it has any effect on my neuropathy before we start reducing the Gabapentin. I look forward to the day I can stop taking Gabapentin. I am still not convinced Cymbalta is the correct answer either, but I will work the process with Dr. R and see how it goes over the next month or two. If I still am not comfortable, I will start the search for a new psychiatrist while Dr. R continues to manage the meds for the neuropathy.
I met with my boss and HR as well to let them know I was ready to come back to work. My previous position is no longer available, but they are willing to have me come back part time at first helping out with clerical work until I can work myself back to full time. I am glad I can still go back to this company. I went to work for them for a reason, I believe in this company. I like their employment ethics. In this industry there are so many that take advantage of employees, my boss can be hard, but he also believes in fair compensation. I like this about him. I like him as a person as well. He tries to be gruff, but he has a big heart. I like the people I worked with as well and I look forward to working with them again. I start back part time on December 10th. I’ll be working 4 hours a day, 5 days a week.
I continue to have dreams of family and friends from my past and present. Not every night, but at least once a week I have a dream about visiting with loved ones. Like I am reliving old memories and creating new ones at the same time. I find these dreams comforting. I also recently dreamed of being on a ship going through a lock system (IE: Panama Canal), and we stopped at the first lock, and had a chance to disembark. It was at a beach, and the water was so clear that we could see sea creatures. Fish, anemones, crabs, starfish, giant sea bass, and smaller surf fish. All different colors and just wonderful to watch from the shore. There was also a good size octopus, it was red. The sea was calm, as well as the water in the locks, even when one lock was draining to bring the ship to the next level. Usually as the water is drained to lower the ship to the next level in the system, the water on the other side of the gates is turbulent, but in my dream we could see just little ripples on the other side of the gates as the water was drained. I know that dreaming of water is a symbol of how you feel your life is going. Turbulent or rough waters is a symbol of feeling unsettled emotionally in your life. So having calm, clear waters in my dream early this week was a good indicator that I am well on the road to emotional recovery.
We celebrated our wedding anniversary earlier this month by going to lunch at our favorite Italian restaurant in Huntington Beach – Mangia Mangia. It still is the best food even if it takes forever to get there. We also planned Thanksgiving at our house again this year. This has been the tradition for many years now, with my Dad and Mom#2 coming down to celebrate with us. One of my brothers and nephew started coming down two years ago, but this year chose to head back to his in-laws for Thanksgiving since he hadn’t spent the holiday with them in two years, since his wife and passed away. Last year due to chemo, the kids, my brother and my dad took over the kitchen, while I took mini naps on the sofa. This year I did most of the cooking. Neuropathy still bothers me if I am on my feet to long, even with medication to help control the symptoms, so I premade a few things so I did not have as much to do on Thursday. I also put my Dad to work on a few little projects, chopping the onions and celery for the stuffing and making gravy. I took breaks to sit as well so my feet were not completely trashed by the end of the day.
We had planned to go to Disneyland on Friday with my parents. It felt weird to have to purchase tickets again. This was the first time in almost 23 years that we did not have annual passes to Disneyland Parks. After the visit in September we had discussed getting passes to an amusement park, and felt that the cost of passes to Disneyland vs. other parks (Knott’s or Universal Studios) combined with my neuropathy, as well as the need for a place to constantly sit so my feet are not overly irritated, causing me to start walking like an old lady, would negate getting passes to Disneyland for another year. In addition, in September, as much as I enjoyed my day, I was not finding the joy I had always felt going to the parks. Friday found us up early to head to the park before opening to insure we secured an EVC from the Disney rentals outside Disneyland. Years ago you could reserve a wheelchair, ECV and/or stroller as needed. Now it is first come, first serve for any of those wheeled conveyances.
I rented an EVC, and the parks opened by the time I was situated in my rented scooter. We had agreed to meet my parents at the Starbucks in Cal Adventure, but had not heard from them yet so entered that park and started to explore. We headed into the Wilderness Exploration area because I love the smells and sounds in that area. The park was still relatively empty so that early time in the morning would be a great time for me to take an ECV through without having to try and navigate around throngs of people and kids. In the back, they had a kiosk that sold Hot Bourbon Cider, regular Hot Cider and Hot Cocoa. Of course, I ordered a Hot Bourbon Cider. Robert chose a Hot Cocoa, and we got in line to get a picture with Santa. We had a great time laughing in line, teasing each other about various things. I felt good to be back in the park. It was joyful! I had to maneuver the ECV around a tight corner to park it so we could get our picture with Santa and did a quick whip around that corner. Robert thought for sure I was going to head up the rocks and overturn the ECV. He told Santa on me saying I was already “drinking” before 9am and almost crashed the scooter. Santa said I was on the Naughty list and Robert was on the Nice list, but I had 32 days to get myself straightened out! We laughed so hard.
The day continued to fill me with so much joy, I felt like my face would split from smiling so much. My heart swelled and I was happy. Mom had never seen the Holiday Parade, so we made sure we picked out a spot on Main Street and waited for the parade. Robert, of course had to tease me about watching this parade, AGAIN. I have made him sit hours on the cold ground waiting for that parade every year on my birthday. Every year I HAVE to take pictures, even though I have seen this same parade for 23 years in a row. Robert could see the true me shining all day, and by the time we were ready to head over to the bar at the Grand Californian to wait for our dinner reservations it was decided we would apply our ticket purchase to new passes. It felt right, and my heart soared. We can go back to the parks whenever we want (well, except the last two weeks of the year and the first week of January, but we don’t normally go then anyway!). Going back for my birthday, I can hardly wait. We ended our time at the parks with dinner at Napa Rose, which is also a tradition now.
There are some new girls in my support group, one is a 40 year old woman who is dealing with metastatic ER/PR positive breast cancer. She was originally diagnosed at 35 and had a double mastectomy due to her risk factors. She has been on Tamoxifen the last five years, to reduce her estrogen/progesterone production, as this fed her cancer. About a year ago, she noticed a lump starting to form under her arm, and it was getting painful. She kept telling her oncologist about it, but her doctors kept telling her everything was fine. However, it was not. It was her hormone receptor positive cancer spreading in her lymph nodes. Once they figured it out, and she went through scans, they also found a spot in her neck. She went to Radiation therapy, both lumps have shrunk, and she is pain free again. Her doctor has her on new hormone therapy drug (probably Evista), since her cancer spread even though she was on Tamoxifen, and she is on Ibrance. She has a beautiful smile and is so upbeat. I love having her in our group.
Last night we discussed our first time at Support Group as it seems we have scared a few ladies off. I recounted how my first time broke me. I kept myself together until we (Robert and I) had walked out. He kept asking me how it went and I just kept shaking my head no, biting my lip, trying to get away from all the people exiting Cancer Support Community so they would not see me broken. Once we made it to the car, I started crying and sobbed on him for a long time. I was so overwhelmed that first time. I was terrified and had yet to come to terms with my diagnosis. Listening to all these women talk so frankly about the good, the bad and the ugly of cancer treatment put me over the edge. Nevertheless, I went back the next week, and continued to go. It got better and easier, and these women have helped me face a tremulous period of my life. These women continue to uphold me and support me in my recovery. Another woman said the first time she attended our support group, she saw me sitting there and then I pulled my knit cap off my baldhead. She was horrified that would be her shortly. She was traumatized at the thought of losing her long, lovely hair. However, the following week she saw me again, just being normal with no hair, and again the following week. Then she realized she no longer thought of me as “bald” or “sick”, she just thought of me as me, another woman fighting breast cancer and making it work. It made her feel stronger and inspired her to face her chemo with a positive outlook. She always wore a hat, but seemed to be able to accept that the bald would not last. Round we went, reminiscing about our first time attending this group. It was interesting to hear everyone’s first impressions. I love these women and cannot begin to imagine how I would have managed these past 14 months without them (and so many others!).
For two nights in a row now I have dreamt of family. Thursday night I had vignettes of various scenes of my family and extended family celebrating various occasions. It started with all my family, and when I say all I mean ALL, celebrating my younger cousin and his new bride. It was around a first home search/purchase or something like that. We ended up with dinner at a restaurant. We were all in a private room in the back. All of us sitting around a huge table, talking, sharing, and laughing. Having a wonderful time, and I realized that my now deceased maternal grandparents were watching over us, happy, with a sense of “Look what we have created” accomplishment. It brought me a feeling of ease knowing my deceased grandparents were watching over us.
I went through several other scenes with family, bonding, loving, sharing. I don’t remember much, just the wonderful feeling of togetherness. The last vignette was with my sister/cousin, her boys, husband and mom (my aunt). My uncle passed away years ago from malignant melanoma. My uncle was a republican. One of Deda’s sons was extolling to us the virtues of being a republican – fiscal responsibility, 2nd amendment rights, smaller government… and so on. Then he told us that all men are republicans and all women are democrats and that is why men and women do not understand each other. He then announced that when he grows up he is going to be a Democrat! We all clearly heard my deceased uncle say at that point “over my dead body!” And then he (my uncle) laughed. We laughed as well. This is when I woke up giggling. Nice way to wake up!
Last night I specifically dreamt of only my father’s family. I had vignettes of family talking, drinking and laughing all over various areas of the San Francisco Bay Area. I ended at my great grandparents house, but not one I remember. This house was at the top of a hill that I could not tell you where in The City, but it was a typical turn of the century single family home – tall and skinny, one abutted to another, the whole length of the street. The front doors on the second level with stairs up from street level. Only the stairs up to my great grandparents home we’re narrow and steep with a very low wrought iron railing. My brother called me while I was climbing those stairs, joking and teasing me all the way up. I woke as my great aunt was taking me in to see my great grandparents.
Am I dreaming of my family past and present because I find family a balm to my soul. My family brings me peace, love, compassion, and harmony. I feel safe and more whole when I am surrounded by my family, amid the chaos, laughter, tears, and yelling, I will gladly sit and watch all this happen around me as it fills my heart and soul. But why my past family? Why the family that has already passed? I know some of my antecedents watch over me, help guide me, keep me safe. Is this why they are in my dreams right now? Helping me to find my joy again? Or are they here to help me accept something else in my life? I’m not sure, but having the dreams the past two nights has been an easing of my stress, a balm to my soul, and some healing to my heart.
I met the psychiatrist. After what seemed like long day of trying to be happy, smiling and keeping my tears in check while I went out to “play”, the 40 minutes spent with Dr. R were a tear filled session of him alternating from furiously writing, to long pauses where I think he had no clue how to recap what I had just spewed unintelligibly from my emotion driven mouth.
Thursday started out with an appointment at Helen’s Room, which is a completely free place to get wigs, hats, scarves and some directions on how to make yourself look better while going through cancer treatment. Because I had no interest in wearing a wig, and knit & crochet, and I have a ton of scarves, I never felt the need to make an appointment at Helen’s Room to partake of this service. Monica, the director of Helen’s Room, and my friend Linda convinced me that this might be fun to try, even though I am done with treatment. I am going back to work here soon; some more hair may give a psychological boost.
Hence, I tried on wigs, and hats, and some scarves, and came away from Helen’s Room with a wig and four new hats. Since my hair seems to have seriously slowed down on growing back in, maybe having these additions to my headwear options for winter will be a good thing.
From there I went over to Costco to pick up my newly filled Rx’s from my primary care physician. Since I have stopped taking Gabapentin mid-day, I am really noticing more irritation and pain in my hands and feet later in the afternoons now, so I do my best to not overdue walking and standing. Costco was not too bad, but there was a mix-up on the prescriptions, so I chose to bid my time grabbing a bowl of chili from the Costco Food Court and sitting on a bench there. After the indicated 40 minutes to rectify the problem, I went back in and got my renewed prescriptions.
After that, I headed over to Dr. R’s office. I checked in at the front desk and took my seat in the waiting room. My friend Linda was taking care of her dogs at the vets but reassured me she would be there waiting for me when I was done so I wouldn’t have to do this alone. Dr. R was running just a few minutes late. He finally came and got me, and we went back to his office and he told me to have a seat anywhere I felt comfortable. Of course, the chair I chose was well broken in and I sank down at least 6 inches after sitting into the cushion. Even though I had gone in on Tuesday and filled out bazillion pages of new patient forms, answering some very personal questions as well as providing a complete medical history, he asked me why I was there. I hate when doctors do that. You have to fill out everything about you down to what your choice in underwear is and then they never read it. Why? Why do I have to spend 40 minutes or more filling out your patient history questionnaire, giving you detailed information in writing about my personal history, and then you do not even look at it. I could not even see any of those pages I poured over on Tuesday afternoon in the file he had started for my case.
So I started at what I thought should be the beginning, I have neuropathy from chemo. I have been taking Gabapentin, but realized a few weeks ago when I accidently missed a dose mid-afternoon, that yes it is providing me some relief from the pain/irritation, but it is also making me very tired. When I saw my oncologist the following week I explained to her how I was now trying to decide which was worse, the irritation or being that tired. She said we could wean me off the Gabapentin and put me on Lyrica instead. She also said that because we were transitioning into psychotropic drugs she wanted me to go to a psychiatrist to manage these meds in conjunction with all my other medications. She said a psychiatrist would be much better at getting me the right amount of relief with the correct medication than she would. I explained how the insurance company has denied the Lyrica, and I am still taking the Gabapentin. I also explained to him how I have been on Paxil for about three years now, and I am trying to lose weight, it is not coming off and Dr. Levee thinks the Paxil may be contributing to my inability to lose weight.
Dr. R kept a stern look on his face during this recitation. He asked me if I was still taking the Gabapentin, and I acknowledge yes, I am still taking it, as I have nothing to replace it at this point. He said I should continue to take the Gabapentin for the neuropathy. I was all, wait, this is making me tired, this is why I want off the Gabapentin. He said Lyrica is out it is not good. He then asked me my medical history, again, why? I answered all his questions, why was I put on Paxil, answered that, and then we were loath to take me off it with the cancer diagnosis last year. In addition, I told him about the depression, and Dr. Levee thinking Wellbutrin instead, but would defer to him to manage this to get me off the Paxil. He asked me why I thought I was depressed. By this point, I was so frustrated the tears were already trying to escape my eyes. I was tired and me feet were starting to hurt; I now get sharp pains that start shooting down my toes and across the arch of my foot in the afternoon. So there I am trying to find a new way to manage my neuropathy with a doctor who is supposed to specialize in this and now I’m being drilled on my cancer, which is a huge trigger for me, I am tired and my fingers are on fire and my feet hurt. I have lost my joy and this quack is asking me why I think I am depressed. There was no stopping the sobbing now. I swear he looked at me as if I was trying his patience. He was certainly trying mine.
He made me walk him through the past year. My diagnosis, chemo, surgery, and radiation. Then he asked me about the pathology report from surgery – were my lymph nodes clear? Yes, four nodes were removed and all showed clear. He told me I should just think about that. No shit, Sherlock! I write a list of everything I am grateful for every night, hoping that one night, writing that list will not make me cry. One of these nights, going over everything I am grateful for will bring me joy again instead of tears. Then he asks me why I am so sad? OMG?!?!?! Really? If I knew this I would not be sad now, would I? Once more tears of frustration streamed down my face because this man is telling me all the things I already know.
After what felt like hours of grueling questions and statements, he finally looked up at me, smiled and said we can try Cymbalta. I can take Cymbalta in the mornings, and start weaning myself off the Paxil. I am to continue the Gabapentin for now, until we determine if the Cymbalta will be effective. He said we can figure this out and I will get through this. He made a statement that I cried enough for the next week so no more tears and only think of happy things. Can I just roll my eyes now? I told him I am aware of this, and I am not looking to him to medicate my sad away, but I am looking to him to help control my neuropathy symptoms so I have one less thing I have to deal with in my recovery. He had me get on the scale so we could get a base weight to see how I react to Cymbalta and I am to go back in two weeks after I have weaned off the Paxil. At this point, I am still not sure how I feel about Dr. R, but it can only get better from here, right? I was emotionally exhausted after that encounter.
Linda was true to her word and was waiting for me in the lobby. I walked into her arms and sobbed a few minutes on her shoulder. We decided to go over to the pier and look at the water while I unwound from that first encounter with the psychiatrist. We talked about my new wig, laughed over a few things and I was able to get my equilibrium back. Linda headed off for a class and I headed back to Costco to fill the new Rx from Dr. R.
I was back at the gym again this morning for some weight resistance work and then a nice swim. My waterproof MP3 player conked out 1/3 of the way into my swim. Guess I now know how long the battery charge lasts.
I am trying to figure out what I find joyful. I used to find joy in all sorts of simple little pleasures. Now it all seems meh. I am trying hard to find my joy. I went to a lecture at CSC after the gym today and from there stopped at the store to pick up more herbs for my water. I also stopped at AAA to get my permanent Handicap Placard. I asked Dr. Levee to renew my temporary placard for now, but she said this needed to be permanent, not temporary. So I did that too. Now I am exhausted. I think it is a holdover from yesterday’s encounter.
Swimming pulls all the color out, as I am only using wash in temporary dye. Because it is a wash-in temporary dye, it is easy to put it back after I swim. Just wash my hair again!
Robert chose a Hot Cocoa, and we got in line to get a picture with Santa. We had a great time laughing in line, teasing each other about various things. I felt good to be back in the park. It was joyful! I had to maneuver the ECV around a tight corner to park it so we could get our picture with Santa and did a quick whip around that corner. Robert thought for sure I was going to head up the rocks and overturn the ECV. He told Santa on me saying I was already “drinking” before 9am and almost crashed the scooter. Santa said I was on the Naughty list and Robert was on the Nice list, but I had 32 days to get myself straightened out! We laughed so hard.
Robert, of course had to tease me about watching this parade, AGAIN. I have made him sit hours on the cold ground waiting for that parade every year on my birthday. Every year I HAVE to take pictures, even though I have seen this same parade for 23 years in a row.
Robert could see the true me shining all day, and by the time we were ready to head over to the bar at the Grand Californian to wait for our dinner reservations it was decided we would apply our ticket purchase to new passes. It felt right, and my heart soared. We can go back to the parks whenever we want (well, except the last two weeks of the year and the first week of January, but we don’t normally go then anyway!). Going back for my birthday, I can hardly wait. We ended our time at the parks with dinner at Napa Rose, which is also a tradition now.