I don’t remember what I was going to write about. I put it off too long and now I forgot. I do know that I wanted to write about the question “If you could have a meal with anyone alive or dead, who would it be?”, after I wrote about the subject that I no longer remember I wanted to write about. Thank you chemo, menopause, age, or all of the above…
I may have wanted to write about my latest Oncology appointment. The one that starts the process for my next MRI. Dr. Ciarolla, for the first time, did a physical examination. I have been experiencing tenderness in the left breast, around the area they are watching the changes on the semi-annual MRI’s. I don’t really feel anything there, and Dr. Ciarolla said he didn’t feel anything either. But tenderness is what led me to discovering Blink finally. So, I try not to hold my breath, and wait and see.
Maybe I wanted to write about how much I miss seeing my extended family. How the pandemic has made me feel so isolated from all of them. We see the kids as often as we feel we can without jeopardizing our health; especially since we have been making ourselves available to our friend, and neighbor, Moses, who is now battling his own cancer diagnosis. Occasionally he has needed help with rides or just a visit to help him through the hard times. He recently spent a week in the hospital with pneumonia. He was not happy that this has added a delay to his treatment plan, which I totally get! You want your treatment plan to go as planned. Any bump in the road leaves you feeling uncertain and scared. How bad is this bump, as it is almost always medical in nature, and does this mean my cancer has spread, or my treatments have caused other insurmountable issues, and, and, and…
Your inner dragon starts whirling in terror, and you cannot breath, your heart wants to stop, you have no energy to deal with the situation, and yet you must. It’s so overwhelming, and then you cry, because that is the only thing left in your body to help you deal with all that emotion swirling and curling, being flung left and right by your dragon. And that makes you feel stupid because you are crying, and that exhausts you even more. It’s a vicious cycle, and it’s ok to be afraid, and cry, and exhausted, frustrated and physically weak. It’s all part of the process. Some have no issues and others drown in the emotionally eddies. Most of us are somewhere in between the two extremes. It’s easy for me to sympathize with Moses, been there. I may not have contracted pneumonia, but I had my own delays and hurdles.
Maybe I wanted to write about celebrating our grandkitty, Winky’s second birthday. I know celebrate a cats birthday?!?! But that is exactly what we did. Yet another excuse to see the kids. She loved the special food she got for dinner and her “Uncle Jordon and Aunt Kelly” got the win for favorite birthday present. Although, I did get lots of love for the catnip buds, better than already flaked catnip. Such a happy little one-eyed cat for the weekend.
Maybe I wanted to write about going back to work as a temp for my old boss, part time. Gary had a need, and I would do just about anything for Gary and Kyle. They have been so good to me. So I am working part time, until they are fully staffed again, helping them out. But there is a kicker to this… I was a Director of Operations, making a six figure salary before Blink. When I came back to work for Gary after treatment was over, and I was ready to try my hand at working again, it was for far less then I had been earning before.
Then I had the opportunity to go to NEXT, which I took, back to that six figure salary. Only NEXT was not at all what I expected or dreamed, and when all was said and done, I realize I don’t want to be in that situation again. I don’t want to be in charge, making decisions, being the responsible one. It’s too much after Blink. My brain still does not process things the same way anymore. I still have difficulties with multi-tasking.
Simple things I can do, but the more difficult the task, the more concentration I now require to complete the task, the less I am able to separate or segment my thought processes to be able to comprehend when someone is talking to me and be able to respond and still keep my place on the other task I am working on. Example – knitting, mostly muscle memory, right? I can knit a basic pattern and watch basic TV shows or participate in my Support group, but if the conversation turns and requires higher thinking power, higher concentration, I can, and have, messed up my basic knitting pattern. This was something I never had difficulty with pre-chemo.
This leads me to now, going back to work as a temp for Gary. I have gone from a six figure salary to $25 an hour data entry clerk. Once I am done helping Gary, I know I can go back to the OCU (Office Clerical Unit of Local 63) hall and pick up temp jobs from there for more than $25 per hour, but it kind of stings my ego and my heart. My worth is no longer what it was. I am no longer worth that six figure salary that I worked so hard to earn. The years spent learning and growing in my industry to get me to that place where I could be that responsible person, making the hard decisions. Not that I want that place anymore, I have more important things to do than be that responsible for someone else’s business, but it’s that little sting in the gut, my worth has fallen because of Blink. I am no longer worth that six figure salary.
I know my value is still worth far more than any salary could provide, but it is still a small little hurt to my ego as to what Blink has cost me. I enjoyed my career, and all the people I have met, including the many I can call friends, but knowing that part of my life is over now still pangs a little. Part of me wants to still try to regain that part of me, but most of me, the deepest parts of me, does not want that anymore. So the sting is just small, but it’s still there.
Could it be I wanted to write about all the Facebook “memories” that would pop up everyday from three years ago. The memories of the days leading up my discovery of Blink. The days of innocence. The days of bliss. Not knowing what was lurking in my right breast that would turn my world upside down. The diagnosis that would bring me to the here and now. To never be innocent again, to never be able to see the world quite the same. I miss that innocence, that bliss, that feeling that everything was so right in my world. Oh, there was the occasional calamity, but I always knew they were surmountable. The diagnosis of Blink took all of that away. Nothing like when I had Thyroid cancer, as scary of that was, this is a killer. Knowing this, having this lurk over me for the rest of my life, that, that is what has changed, and I miss the before. I miss that girl, and everything that was going so right for her.
I still love myself, not the same way as I did then. I have a different appreciation for life, family, experiences, love, hope and joy. I am glad I have these new perspectives, but as I noted above, those rose colored glasses were so much fun.
Now for the one thing I do remember I wanted to write about. When prompted journals or someone asks you -” If you had the chance to meet with anyone, dead or alive, who would it be and why?” I’ve always had some inklings of who I’d want to talk with, share coffee or tea, break bread with, but it has always felt so trite and almost rehearsed. With the passing of Ruth Bader Ginsberg, I finally had a true yearning to have that hypothetical meeting with a person “dead or alive”. I would love to meet RBG, have tea with her, talk of life, love, equality, justice, religion, and jokes. On a recent night, as I was pondering this, I had the feeling of this soft little hand reach out to hold mine. For some reason I knew that she was with me briefly, just to let me know she knew me and understood my sudden yearning to have met her. Then her presence was replaced with my grandmother, my Nane. My Nane who I know watches over me, but rarely does she make her presence known. That night she did. She sat with me for a while, to let me know all would be as it should be.
So, I go forward, over the next two weeks, not holding my breath, with my dragon tightly curled into her little ball, as I wait for that MRI appointment. Knowing all will be as it should be going forward.
I know it has been a while, and so much has happened. Jordon and Kelly got married at the end of September; we attended a large family reunion from my mother’s side of the family. I was let go from the job I thought I loved so much this past November. We decided despite the lack of income from either of us, our Disneyland passes would be renewed. We celebrated Thanksgiving at our house with my parents, my brother and my nephew; we went to Disneyland the next day.
My birthday was mostly spent at Disneyland. We managed to secure lunch reservations at Carthay Circle in Cal Adventure. The weather forecast remained cloudy and chilly, as we made our way to the park and most of the way through our lunch. Then it started raining, then it poured. Because the weather app kept saying no rain I didn’t bring with us the rain slickers we had purchased the week before. By the time we finished lunch and made a circuit around Cal Adventure, everyone was trying to find shelter wherever they could. I purchased two new rain ponchos and away we went to check out Disneyland. Everyone there was also looking for respite from the rain, and there we were, me driving through every puddle we could find in my ECV and Robert behind me jumping in the same puddles. Turning fifty-five was fun, but eventually I got cold and we went home.
Hanukkah was celebrated and our gift exchange theme this past December was “Batteries Included”. We had quite a bit of stealing of gifts happening this celebration, and I have to say I made out pretty good this year, light saber with sounds stolen from the first person who stole it. Then it was locked with me. 😀 We re-gifted it to Joseph for Christmas, made it even better.
We raced back from Hanukkah to celebrate Christmas Eve with Robert’s family and BBQ from Naples Ribs. Our tradition now that we host Christmas Eve. We had a wonderful time with Robert’s family and made a date to have Super Bowl together and then “Christmas in July”. Looks like we will be seeing each other more than once this year.
New Years found us up at my parents house. Dad and Mom #2 had food poisoning the day we arrived. Then Robert ended up with a 24 hour flu bug on New Years Day. Fever, body aches, everything. We ended up staying another day. We drove back home the Friday after New Years and Robert felt pain in his bottom. By the time we were home he realized he was experiencing another peri-anal abscess. We took him to urgent care Saturday morning, hoping we could hold off the worst of the abscess until Monday, and start the request for referral to the colo-rectal surgeon Urgent Care doctor was all too happy to provide both and we went home with antibiotics. By that night he was in so much pain I decided we were going to the ER in the morning.
We headed to the ER bright and early Sunday and despite not many people being there, they took their time getting a CT Scan done to send to the on call surgeon for evaluation. By that time Robert was saying his pain level was beyond 10. Football had started by the time the ER doctor consulted with the on-call surgeon. The surgeon decided that since the abscess was only a little over a centimeter he could tough it out until Monday or Tuesday when the referral is approved and he could be scheduled into the office.
We were both incredulous that this was happening. Damn surgeon didn’t want to stop watching football. Robert was now just bed ridden and he was starting to have problems with defecation and urination because of the pain. Monday the referral came through and the surgeons office could see him late Tuesday afternoon. We hobbled him into the surgeons office and the surgeon took one look at him and told him he had to go back to the ER. This could not be taken care of in the office as the first surgeon had determined. He would call the ER as well as the surgeon on duty to advise them Robert was coming over and would need to be admitted for surgery.
We headed back to the ER, now I was livid. They quickly got Robert back into a bed in the ER, even though the ER was beyond full. They did another CT scan and within three hours had him up in a room. Of course it was in the middle tower the longest walk for me no matter which entrance I went through. They added him to the surgical board to be squeezed in as soon as possible and he was told no food or drink after midnight. My dear friend Linda brought him a burger and fries from Five Guys so he could finally eat something. Once he was fed I went home to get myself something more to eat and to feed the cat. I was back at the hospital bright and early the next morning only to find they still had not scheduled a time for his surgery to relieve the abscess. Close to noon, his nurse told me they finally had a time scheduled – 8pm that night. He was napping, so this was not going to go over well when he woke up. His abscess had grown from a little over 1 cm to over 6 cm.
Surgery was able to be bumped up a little earlier, so he was in surgery by 6:30 that night. Surgeon told me all went well and he should be feeling better soon. Now that he had a second abscess in the same spot she was warning us this could become a common recurrence and there is not much they can do about it.
It took almost three weeks but he was doing much better and able to sit normally again.
Back to the wedding; we were all so happy to celebrate last year. The rehearsal was the Thursday before the wedding, which also happened to be the same day as my six month imaging. This imaging was an MRI. My new Oncologist is more strict on the follow up than my last oncologist, which leaves me with a more secure feeling that we will catch any recurrence early, or at least earlier. I went to the imaging on my own. This is my one year check up since the end of active treatment. Two years since diagnosis. It will all be good, no worries! And the wedding is in two days. It’s all happiness. Get this imaging done and move on with life.
As we’re headed to the wedding site for our rehearsal time, Heather, Jose, Joseph, Robert and I all in Jose’s work truck, my phone rings. It’s the main number from Torrance Memorial Hospital. Also where the breast diagnostic center is located, where I had completed my MRI earlier that morning. The MRI detected changes in my left breast. They are scheduling me to come in for ultra-sound on Monday. The cab of the truck gets very quiet as I schedule this appointment for the follow-up ultrasound. Heather reaches back to hold my hand from the front seat. Robert looks at me across Joseph who is seated between us in the back bench seat. My dragon roars, NO NO NO, it’s not time yet! We are prepared, me and my dragon, for three years, five years, maybe as many as ten, but we are not prepared for 2 years.
My dragon screams within me, raging, crying, ranting, no, no, no, not now, not at this happy time, not as Jordon and Kelly are getting married, going on their honeymoon. Not when we have a giant family reunion from my mothers side of the family in two weeks up in the bay area. I calm my dragon, it’s nothing. It will all be fine, it is too early for this, we both know. My dragon reluctantly curls back into it’s ball, but is very unsettled in her corner of my gut. I tell her we’re not going to think about this until Monday. We’re going to celebrate the union of our son to the beautiful Kelly who we adore and welcome into our family.
We all agree nothing will be said, but my dragon still tumbles and flutters away, not willing to settle completely. I am determined to enjoy this weekend. Nothing is said at rehearsal, nor as we head to the rehearsal dinner. I am able to settle my dragon and enjoy the rehearsal dinner with the bridal party and both families.
Friday we checked into the hotel in Huntington Beach close to the wedding venue after meeting up with Deda, her family, and my brother and nephew at Disneyland for a few hours. After a relaxing night in we woke up early to prepare for the wedding. We had to be at the venue by 1:30pm. I booked a makeup artist to come and do my face and hair, and had a wonderful time being made up for the wedding. The artist was a darling woman that I thoroughly enjoyed working with, and chatting about her life as well as mine.
When it came time to get dressed, I had a good laugh over the stick on bra I had purchased to wear under the backless gown I had found that was just lovely as a Mother of the Groom dress. I could not get the cups to evenly stick to my boobs, and pulling it off… OMG, my poor right breast definitely did not like that. So after several attempts of errors and laughter, I decided it was not worth it and went without a bra. Robert and I were both ready and scheduled an Uber to take us to the venue. As we waited for the Uber to show it started to sprinkle. We both knew Kelly would be totally upset by rain on her outdoor wedding day, despite that rain means good luck. It sprinkled the whole 5 minute ride to the venue and then the sun came out.
We checked in with everyone, the bridal party in one room and the groomsmen in another. Grandpa helped Joseph get dressed in his tux, while I ran as a go between for Kelly and Jordon. Kelly had passed her state boards and Jordon had a congratulations card for her on this accomplishment. But it was their wedding day, and Kelly was stressing out. As all good brides manage to do on this special occasion. Kelly and Jordon had decided their gifts to each other would be letters on how they feel about one another. Kelly had me deliver her letter, and I came back with a congratulations card. I went back to check on where Jordon was with his letter. He had it all typed out, but wanted to write it out for her. Jordon being Jordon, of course was very behind in this matter. With many distractions coming his way as the photographer tried to keep him on schedule with the list of photographs that were supposed to happen prior to the ceremony.
I noticed he kept losing his place on his laptop and would have to go back to re-read where he was to continue. I stepped in and told him I would dictate and he would write. It still took time with some mishaps and laughter, but he finally completed his tome (at least 7 pages of handwritten text), sealed it up with a card and I was able to deliver his letter to Kelly. Their picture schedule was behind, so some pictures would have to happen after the ceremony. The wedding planner was wonderful at helping Kelly destress and kept the parties on schedule and got us all ready for the ceremony.
The ceremony was beautiful and no one was the wiser when the bride and groom disappeared for a while to take those pictures that were missed prior to the ceremony. It was a wonderful party, and Robert’s speech turned out perfect, despite the fact that he miss-spoke Kelly’s name at the beginning, with much laughter and tears. He shook so much my sister-in-law asked my brother if Robert had Parkinson’s. Nope, just nervous speaking in front of all those people.
I did tell my secret to Deda. I had to let out some of that dragon anxiety and talking with Deda helped me quiet my dragon down and allowed me to enjoy the rest of the wedding and dancing.
The wedding ended at the scheduled time and I walked in to find Kelly’s mom unable to undue the elastic button loops on the back of her dress, so I stepped in to help get Kelly out of her dress. The rain held off until we were packing up the last of the wedding gifts and the bride and grooms stuff. We all headed back to the same hotel, and met up with Dad and Mom#2 for a drink before heading off to bed.
Sunday found us taking our time packing up and then heading over to Disneyland for a bit of people watching before meeting up with Dad and Mom#2 as well as Jordon and Kelly for dinner at Napa Rose before Jordon and Kelly left for their honeymoon and Dad and Sue headed home to the SF Bay Area. All in all it was a wonderful weekend and we’re so happy the Kelly is officially now a member of our family.
Monday I went for that ultrasound, and they could not find anything in the location where the vascular changes were detected in the MRI. So good news at that point, but the recommendation was instead of a mammogram in 6 months I have another MRI. Sword of Damocles….
As much as I wanted to say I had dealt with my loss of Kelly from my support group, I had just touched the tip of that journey. Having my MRI come back with a “spot” to watch, drew me right back into my grief and my memories of Kelly. I threw myself back into work, and tried to forget all this. But I also felt like I could not hide this from my family. I hate being blindsided by medical news so I felt like I needed to tell them all about what is going on. We had the family reunion a few weeks after the wedding, and we shared a two room suite with my mom. I was able to have a nice talk with her about the findings and how this is a watch and see situation. I had time to think about it for a bit and digest that a recurrence was a possibility. Now that I knew more about this cancer and what surgery does, (experience), I had come to the decision that if this came down to biopsy with return, I would opt for the double mastectomy with DIEP flap reconstruction. I told this to my mom and she was good with that decision. She liked that I had time to process this information and come up with a plan just in case.
Over the course of the weekend family reunion I was able to speak with most of my extended family members in a one on one and let them know what was happening with me. Nothing yet, but I am now on a watch and see situation.
The rest of the year was mostly uneventful, celebrated the holidays, dealt with Robert’s abscess and decided when unemployment ran out I’d go back to the union and work as a temp until I got hired again.
My dear friend Stephanie from Support Group was hospitalized at the end of January with fluid in her lungs. Linda and I went to visit her, but I knew that this was caused by her metastatic cancer, it was in her lungs and this was not a good. They inserted a drain and she was able to go home after a few days. Linda and I didn’t say anything, but we both knew her time was limited. Yet another loss I knew I would have to deal with eventually.
The first Friday of March (6), found me going to a “First Fridays” in Long Beach at the EXPO Center to see Blake and the art Blake was exhibiting. Blake had some beautiful pictures of Bristle Cone Pines printed on metal. They were gorgeous. I checked out most of the other artists displaying works at the EXPO center. There was also a Tarot reader set up. She had multiple decks she worked with. I passed her several times and was drawn to her energy. I am not pulled to many who claim to read Tarot. Their energy usually does not pull me telling me they are not truly in tune with their spiritual self or the universe around them. I need that to be the case if I am going to trust them with a reading. I finally gave in to the pull and asked her for a reading.
Of course my first question was had my cancer returned. She pulled one card and looked at me with a clear gaze and said no, not yet. We went through a few more cards, about work, money, but then she put the cards down and without batting an eyelid, stared me in the eye and told me my spirit guides were very strong, and speaking to her. They were telling her to tell me that I need to complete my bucket list in 3 years. That was pretty direct and felt true in my heart. I thanked her for the message. I also found the perfect birthday gift for my mother from the artist that was set up next to Blake.
Then the pandemic set in and we were all ordered to Shelter at Home. Non-essential businesses were closed, toilet paper and cleaning supplies were bought in a frenzied mass of stockpiling, leaving shelves bare for weeks on end. We all had to start wearing masks. In person doctor appointments were cancelled. My next MRI was delayed as they had to space out people coming in for imaging. First my March appointment was pushed out 7 weeks to the end of April. Then I received a call, they could get me in two weeks earlier. I took it. This time my MRI report advised no new changes to my breasts from my surgeries or radiation. The small vascular changes they noted on my last MRI had solidified into a nodule, but not something that looked like cancer yet. The report also noted it looked like I was developing a cyst in my right breast. Recommendation, another MRI in 6 months. The cyst part also worries me as one of the gals in my Support Group, also with Triple Negative Breast Cancer, had what all the radiologists called a cyst in one of her breasts. She demanded they biopsy this cyst. When they tried to pull fluid from it, nothing came out. They had to do a core biopsy and sure enough it was another Trip Neg lump in the same breast she had surgery on previously. I am now on the cautious side of cysts!
We did take a quick trip out to Palm Desert before the pandemic lock down. Went to San Jacinto State Park at the top of Chico Canyon, overlooks all of Palm Springs/Palm Desert area, and went out to Joshua Tree several times to watch the sunset and see the stars. Since lockdown, we have spent some time in Bakersfield with Heather and Jose, as they have been very good with the social distancing and following mask and cleaning guidelines.
In July we went camping up in Sequoia National Park (Jose, Heather, Joseph, Kelly, Jordon and me). We did the Walk of 100 Giants, spent a night staring at the stars, I got very drunk, and had a wonderful conversation with my daughter-in-law Kelly. Stumbled my way back to our camp site and managed to not fall down!
Everytime I think it’s time for me to call the OCU hall to get temp work, more bad news comes out on the COVID-19 Pandemic. The latest news says cancer survivors have a higher chance of contracting the virus. So there is that news…. My unemployment keeps being extended automatically, so that helps. Eventually I will need an income.
We did lose Stephanie in June. Almost a year from when we lost Kelly. This has been hard for me to come to terms with. Especially since I know my own fate is hanging under that damn sword. I avoided this blog for so long because of not wanting to face the emotions tied with my current “on watch” situation, the echos of that tarot reading with the message from my spirit guides. Dealing with the grief of losing Kelly and Stephanie within a year of each other. Not being able to be with my support group in person or see my family except through Zoom meetings or Facetime. That 3 year warning weighs heavy on my mind, I feel like I am losing time. Time I don’t have. I still miss Kelly. I haven’t been able to bring myself to watch Stephanie’s Life Celebration held by her church and on posted to YouTube. Someday I’ll be able to watch it and celebrate her life, but right now my heart is still too raw to deal with that.
For not updating in a year, I think I have poured enough out for now. I will update again soon.
Today was a bittersweet day for me. Last day with my current employer before my leap into the great unknown with the new company. As always with anytime I am feeling any kind of stress or anxiety, I was awake early. I did catnap between 5:30 am and 7:30 am while I waited for Robert to get done in the bathroom, read and played my puzzle games to improve my brain. I must say I will miss my leisurely mornings, taking my time to get up, get ready to face the day, make my Latte, and watch my shows while I eat my breakfast and drink said latte.
I took in gifts for my bosses in thanks for all they have done for me. I worked on the last of the process documentation I could think of to help them take over things I had previously managed, and spent my day trying not to let my mind overthink my decision. I loved my job, I love my bosses, I love the people I work with, this was a very difficult decision to make.
When I first came to work for GFS I had a plan that this would be my last job before I decided it was time for me to retire. If I learned anything over the past year and a half or so is that I am not ready to retire!
That said, when I came back from my medical leave I was so grateful that GFS kept a place for me, to return to work at a pace I could handle and work myself back to what I determined was my best again. I am so grateful for the time and space they provided for me to gently move into living life, as I wanted rather than how my body dictated. I was ready to keep working that plan I had made when GFS and I came to an agreement those years ago.
Funny, when you make plans, God laughs
and says “Oh yeah, while try this out!”
As you all know (or may not know); for months I was pursued by another trucking company, through LinkedIn, and I ignored them. I had my plan, I loved my plan. I loved working where I worked and thoroughly enjoyed working with all the people at GFS. Why would I leave? I finally answered that continues “knocking” on my door, and was made an offer I just could not refuse. This decision was not easy for me to make. Like I said, I have loved working at GFS, and loved what I was doing. All of the people there have provided me with a chance to learn more, stretch my wings further and shared with me pieces of themselves that I will always treasure. They all helped me face one of the hardest things I have ever done – beat F’ing Cancer! I beat a cancer that the odds were against me from the very get go. Without their kind words, support and prayers I know that my outcome could have been much different. For this, there are no words that can express my gratitude.
I feel blessed to have worked with all of them. My parting wish to them was GFS will continue to grow and prosper.
They threw me a small luncheon going away party, that included a wonderful card and some gifts. I feel so blessed to have worked with this wonderful group of people.
While I was helping one of the girls make her way through a report I used to run that she would now be responsible for, one of my friends who makes me laugh, texted me a picture of a flyer for a workshop being held in August about PTSD and Cancer. As is normal for us, the picture was accompanied with text, which we are both very good at miss-typing, leading to some hysterical conversations. Today was no exception. With the picture the text really didn’t make sense so when I received the second text, I started giggling and responded, with my giggles erupting into full blown laughter.
The text was: “I bed this! Wanna go? R is leaving from KAX at 9am in Sunday” followed by “Lax”, and then “Omg” with the laughing faces. Me being me, responded with “I’m still stuck on bed???”
She responded with “I need this. And new typing fingers apparently. Lol. NEED. no bed” I of course had to push this to “You need your bed?!?!?!” Her response was “Ha! Maybe my subconscious wants someone in it? Lol…” I of course used my gutter brain and responded with “We could get you an electronic boyfriend” followed with three eggplant emojis. My friend said she would take one.
We quickly ended out text conversation, with laughter and went on with our days. I finished mine with GFS, bidding my final farewells and holding back my tears for a plan ended, and holding my breath for my new adventure to come.
Several hours later, as I awaited the news of one of our girls going through surgery today, my friend called me back. (I am not mentioning names to protect the guilty!) She had sent me yet another picture that had me laughing, this one of a candy bar called Flirty.
She called me back to explain the Flirty candy bar. Seems while she was waiting at the hospital for news of our gal in outpatient surgery, and when she would be released to come home, a nice gentleman was chatting her up. Granted he was at least a decade and a half older than her (and we’re no spring chickens here), and despite her best efforts to be rude to him and continue working on her laptop while she waited, he continued to “flirt” with her. He hangs out in the hospital lobby as he enjoys the cafeteria coffee and the live piano music provided to ease those who are visiting the hospital for less than happy reasons. We joked that this was the new pick up place for those in assisted living homes, instead of the hallway pill exchange (that is a story for another day)!
He offered to get her a coffee as well, to which she declined, but he brought her the Flirty chocolate bar instead. I laughingly told her “see, you get a real boyfriend instead of an electronic one, as well as a Sugar Daddy!” We continued to throw one liners at each other as we laughed harder and harder. I love her so much for always making me laugh until I could pee my pants!
Our gal came through her surgery just fine and will be released tonight to go home. Our girl Kelly is home from the hospital, finally. We will need to plan a visit to her to bring her some laughter and female companionship. Plus, we miss her.
Life is taking leaps of faith and laughter, always laughter
I know I must have talked about mindfulness when I was going
through the Artist’s Way class last summer, or even on some of my walks I took
before I realized that my neuropathy was just too painful to keep up my walks
before I had some sort of medication to control my symptoms.
I still practice Mindfulness. I enjoy it so much, that unless it is pouring
rain, my “Transformer Car” – Beta has her top down, no matter the
temperature. I can hear what is going on
around me while I drive. I do have my
radio on, usually with the sound down low so it acts as a nice background music
to my observations.
I love hearing birds calling, twittering, chirping and
tweeting. I hear hawks calling to their
mates, mockingbirds that imitate so many different sounds, song birds, crows
and seagulls on my drive to and from work.
I get to see birds flying, butterflies flitter by, hear someone’s
conversation on their vehicles Bluetooth.
There is a pre-school on my drive to work, and the kids have
outside playtime about the time I pass daily.
I can hear the energetic squeals of delight as they play on the slides
and swings, I hear their high-pitched voices calling to each other to come play
or try something new. Their laughter
echoes through the intersection so joyously that I cannot help but smile at the
unrestrained glee happening in that play yard.
There are Jacaranda trees in bloom throughout my whole drive
right now. I love seeing the clouds of
purple blooms that make up the fullness of the foliage on their branches, and
they leave a shadow of purple that fills the area under the tree, creating an
outline of the fullest part of each tree.
As I pass over the Los Angeles River heading to work in
Signal Hill, off to my right I can see an area of marsh and a small pond in the
flood control where ducks, seagulls, white pelicans and other water fowl
congregate to eat, rest, nest, whatever, before the river continues on to the
harbor in Long Beach. It is a little
oasis amongst the cemented walls of the flood control. A little oasis located in the middle of a
city, next to a major freeway. This
freeway connects the Ports of Los Angeles and Long Beach to major rail hubs and
access to other freeways that lead to industrialized areas in the Los Angeles
Basin and the Inland Empire.
As I enter Long Beach city limits, the center median planted
with those Jacaranda trees, and as the traffic moves beneath their spreading
branches it creates a disturbance in the air, causing some of those little
purple blooms to swirl in the air currents, fall off their anchor to a branch
and fall to the ground. On occasion, I
have had a bloom or two float into Beta or even on me as I drive by. I can smell the sweetness of those blooms as
I pass, and will miss them when the bloom is complete.
There are other smells that catch my attention; the sickly
sweet smell of decay as a trash truck rumbles by. The pungent odor of a skunk that has either
been recently roused from its daytime sleeping hole, or hit during the night
and lying dead somewhere, sometime seen and others hidden in the brush or
debris on the side of the road. The sharp
chemical dark smell of warm tar as a street repair is conducted. The nauseating smell of a diesel engine as a
truck thunders by. The super sweet smell
of the star jasmine in bloom. Or the
mouth watering aroma of the exhaust from a restaurant.
Even as I pass through the most industrialized areas, I can
still hear birds calling, their voices pitched so their calls are heard over
the rush of cars and the heavy roaring of trucks. Vehicles moving over the roads to their
various destinations, home, work, a store, a rail hub, a warehouse, a container
yard, or to the port. Everyone with a
destination they are determined to arrive as quickly as possible, most of them oblivious
to the natural world around them.
This is my mindful driving, that I practice every day. Even if it rains, and Beta has her top up, I
listen to the sounds of the rain drops as they hit the windshield. I hear the sound of tires swishing through
the wet streets. I also hear the sound of the windshield wipers as they swing
across the glass wiping the water to the sides.
I feel the warm air blowing from the vents heating the air within my cocoon
inside Beta. I feel the pressure of my
seatbelt across my lap and chest, holding me safe in my seat.
I feel the slight slip of my front tires as they slide on
the wet paint when I start moving from a stop at an intersection. When I get in or out of my car, I smell the
rain moistened air. It smells clean and
fresh. If the weather front is exceptionally
cold, it smells brisk.
I look forward to the slow warming that will come with
summer. What I see, smell and hear on my
drives will change with the seasons. I
relish every little moment of mindfulness during my drives. It reminds me there is more to life than
destinations and I am ever so grateful that I have yet another day to cherish
my world and those who share it with me.
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.
