I celebrated 2 completions of magic medicine, I finished up 18 rounds of Taxol and two rounds of Carboplatin and Taxotere. First step completed, next 8 more months of Herceptin Infustions.
So I made it!! one year of chemo in the books!! Another chapter of this hilarious journey closed. No more beeping infusion pump alarms, port access, poking, prodding , and a little less anxiety. I had become a solider in this war on cancer… every Tuesday I marched into the infusion center with my posse in tow ready for the next batch of toxic agents that would kill this cancer. I would miss all these beautiful and supportive faces that had been woven into my existence and into the fibers of my new life. Each one of them had touched and changed my me personally during my most vulnerable time and while they were mere strangers in the beginning they grew to be part of my family.
Now, the side effects I would come to learn would worsen and linger. The exhaustion, the waves of nausea, and OH the neuropathy in my legs and hands would be the most torturous, almost debilitating. I had a hard time walking short distances or holding a pen, the pain was maddening. I could not get to it, I was unable to rub it away it, it literally was nerve-racking. As time progressed… eh almost 2 years later it was all getting better. Despite being done with the infusions I was still dealing with the lasting effects both physically and emotionally. I would be excited for my hair and eyelashes and taste buds to grow back. Oh how I longed to be able to savor flavors again. Big and Small victories!
Up until this moment I already had had 2 surgeries: One for my port placement and one for my lumpectomy. I unconventionally had a lumpectomy prior to my mastectomy to see if my tumor was responding to chemotherapy. Good news was that I wasnt going to have a third type of chemo Adriamycin® (doxorubicin). I would continue on with my remaining infusions of Taxol for a few more weeks and then Herceptin until next year.
Dec 2, 2011 The morning of my mastectomy is hard to remember. I do not recall being overly nervous. I knew the moment I was diagnosed I was going to have a bilateral mastectomy. It was One of the few things I could control with this diagnosis and I was confident that it would be the right choice for me. I wanted the cancer gone. Some of my physicians thought lumpectomy with radiation would be a better option for me given how young I was and for esthetic reasons but I couldn’t stand NOT doing as much as I possible could do to get this cancer gone. The even better news I would later get was when the pathology came back from the mastectomy that a second cancer in a different location had been identified and removed thanks in part to my decision to have my breast amputated. I know that sounds harsh but its what happened, mastectomy just makes it sound less barbaric but truly it’s not.
I had a Nipple Sparing Latissimus Dorsi Mastectomy with reconstruction. Latissimus dorsi (LD) flap is a type of breast reconstruction surgery. It uses muscle and skin from the upper back that is pulled under the skin to the chest area. Your latissimus dorsi muscle is located in your back, just below your shoulder and behind your armpit. An oval flap of skin, fat, muscle, and blood vessels from your upper back are used to reconstruct the breast in a latissimus dorsi flap procedure. This flap is moved under your skin around to your chest to rebuild your breast. The blood vessels (artery and vein) of the flap are left attached to their original blood supply in your back. This procedure would offer me a better support for the implant that would take the place of my breast tissue.
The nipple sparing component of this surgery would be the only real unknown at the time of my surgery. Both my surgeons warned me that it was a real possibility that I would not be a candidate for this. They would have to see the proximity of the tumor to my areola and subcutaneous nipple tissue. During surgery , with the assistance of a new technology my breast surgeon would do on-site pathology of the nipple tissue to see if there was any infiltration of cancer or atypical cells. Thankfully there was not and I retained my girl bits! I would have tissue expanders in place during surgery in place of where my breast had once been. The technique for breast reconstruction uses a flat expandable prosthesis called a Tissue Expander, which was placed beneath my pectoralis major muscle during the mastectomy, this procedure would be part of the “reconstruction process”. These Tissue Expander’s would be slowly and painfully inflated over the next few months, and then I would go back into surgery where my permanent implants would be placed. These tissue expanders would stretch the pectoralis muscle and skin in preparation for the new implants. That part would be yet another surgery!!!
I remember walking up from my surgery: The hospital room was dark, hadn’t it been morning when I went in? Yes but that was 9 hours ago. Yes 9 hours of surgery. Imagine if you will being in surgery for that long…. ???? That requires no further comment.
So my first moments of consciousness where confusing, hopeless and painful. So painful I have a distinct memory of asking God why he was making me suffer so much. I asked… no I prayed that he would just take me at that moment… I told him I was ready to go. The pain in my chest, down my back was excruciating I felt like I had been ripped apart. Please God, I am ready, take me away, make this pain stop…. please I surrender, that is what I prayed. I looked around my hazy fog, I had tubes everywhere, I had no strength, very little will, and sadly could not even sit up by myself. I was sliding down and I prayed again please take me away and make it stop. The pain was indescribable.
Later I would be made better through the power of pharmaceuticals… Yes my new best friend was my morphine pump! Crank her up and let it ride!!
I think the reason survivors of breast cancer and surgeons don’t really talk about the post op part of the mastectomy is because it’s so incredibly painful to relive and gruesome to describe. There is nothing pretty or pink about this part of breast cancer… remember that!!
I was so drugged up I kept getting angry with my surgeons wondering why they hadn’t stopped by to check on me… Oh really what do you say, they have been by twice…. hmm that I did not recall. I will quit my b*tch’n now. Dont mess with me I’m medicated!
Nothing says you look like you could use a prayer more than a morning visit from the hospital clergy. My friends Maureen and Travis had a little holy communion and prayer. uh oh the big G-O-D must have gotten word and sent his troops. Faith restored
I was discharged from the hospital 5 days later. I went home busted and bandaged. I spent the next several weeks in terrible pain, horrible back spasm, no upper body strength and the inability to do anything by myself. Thank God for my brother, dad and especially my angel… My MOM!!!
So when I left the hospital I carried around what I affectionately termed ‘my grenades’. Which were really the drain tubes for my mastectomy which were vessel for the accumulated fluid and blood monkeys in my incisions. I lost one 3 weeks after surgery but my other 3 pets stayed around for a few months. They became like pets, they are literally stitched into your skin and the tubes traveled to my back incisions and to my breast incisions. The tubes are long but time afer time I would catch these dam things getting dressed or moving about. The funny thing was that you had to “strip the tubes” . It is a process that required you pinch the accumulated gunk in the long tubes and pushed it into the little grenades. This became a favorite pastime with my sister-in-law, brother and mom.
These little suckers where hard to conceal, so big hoodies and jackets with inside pockets that held my post surgery paraphernalia was essential. I already had a bald head there was no sense in attracting anymore attention to myself with these tubes coming out of everywhere.
Reconstruction part 2: March 2012: Happy Birthday to ME!
During this surgery I would have the painful and nuisance expanders removed and my new silicon breast would be implanted by my amazing plastic surgeon Dr. Fabian. I could not wait I was one step closer to all the kings horses and all the kings men putting Kimberly back together again!
December 22, 2012: How do you start the new year 2013… Oh yeah recovering from yet another surgery
I had issues with the implant and skin thinning. Dr. Fabian went back in to place Alloderm to support the breast implant where the skin was thinning. He also had to loosen up the latissimus muscles which because of muscle memory were trying to migrate their way back to their comfy home in my back. Seems weird but the body is an amazing thing.
Alloderm is a collagen matrix that is acellular in nature. That is to say, it is cadaver skin that has had all the cells taken out of it, and just leaves the collagen behind. It is like having a shell of a building there, without all the walls, furniture, and people living inside. This makes it easy for your own body to incorporate your own blood vessels and tissue into the Alloderm.
My lucky socks! These socks illegally accompanied me into every OR!!! Good luck Contraband!!
THESE ARE PICTURES OF THE EVOLUTION OF HAIR LOSS. NOW, I DO NOT WANT TO DISMISS THE COLD CAPS. THEY WORKED FOR THE FIRST ROUNDS OF CARBOPLATIN AND TAXOTERE AND I THOUGHT I WOULD BE ABLE TO SAVE SOME OF IT. HOWEVER WHEN MY LIVER ENZYMES STARTED TO ESCALATE OUT OF NORMAL RANGE DR HAHM GREW CONCERNED AND SWITCHED MY CHEMO TO TAXOL FOR 18 WEEKS STRAIGHT INSTEAD OF THE ONCE EVERY 3 WEEKS OF THE COCKTAIL OF THC (TAXOTERE/HERCEPTIN/CARBOPLATIN),( YEAH NOT THE THC YOU WERE THINKING). AT THAT POINT COLD CAPS WERE NOT A FEASIBLE OPTION ANY LONGER AND I HAD TO COME TO THE REALIZATION THAT DESPITE MY BEST EFFORTS I WAS GOING TO LOSE ALL OF MY HAIR. I HAD ALREADY LOST MY EYEBROWS, EYELASHES AND ALL THE HAIR EVERYWHERE ELSE ON MY BODY.. I WAS LIKE A HAIRLESS CAT. BUT LOSING THE HAIR ON MY HEAD WOULD BE DIFFICULT BECAUSE UP UNTIL THEN I HAD KEPT A DECENT AMOUNT OF HAIR AND I HAD HID MY DIAGNOSIS FROM A LOT OF PEOPLE. WITH NO HAIR, THEN PEOPLE.. WELL ….EVERYONE WOULD KNOW I WAS SICK.
THIS WAS A PICTURE THE MORNING OF MY FIRST CHEMO!!
WHAT YOU MAY NOT BE AWARE OF IS HOW PAINFUL IT WAS TO LOOSE MY HAIR AND I AM NOT TALKING ABOUT THE EMOTIONAL SIDE. I AM TALKING ABOUT THE PURE PHYSIOLOGICAL SIDE OF CHEMO INDUCED HAIR LOSS. MY SCALP HURT TO THE PHYSICAL TOUCH AND WHEN I WOULD RUN MY FINGERS THROUGH MY HAIR AND THE STRANDS WOULD FALL OUT IT FELT LIKE A RELIEF OF SORTS, THE FOLLICLES WERE ALSO LETTING GO OF WHAT THEY COULD NO LONGER CONTROL. I SWEAR THOSE DARN FOLLICLES WERE HOLDING ON WITH ALL THEIR MIGHT AND FIGHTING THE RAVENOUS EMINENT DEATH THAT CHEMO WOULD BESTOW ON EACH AN EVERYONE OF THEM. BUT SOON THEY ALL SURRENDERED.
BELOW YOU WILL SEE THE WIG IN MY LAP. I CALLED HER MATILDA. I PURCHASED HER WITH MY MOM AND GODDAUGHTER ISABELLA,MONTHS BEFORE THIS PIC AT ONE OF THOSE GINORMOUS KOREAN BEAUTY SUPPLY STORES. VICKI , MY HAIRDRESSER STYLED AND CUT IT FOR ME TO MAKE HER APPEAR MORE NATURAL. I THOUGHT I WOULD SHOW HER TO THE WORLD SOME DAY AFTER I HAD LOST MY HAIR. BUT INSTEAD I ROCK’D THE BALD HEAD WITH ONLY A HAT TO HIDE IT MOST DAYS. FOR ME WEARING THE WIG WOULD HAVE ONLY BEEN A DISGUISZE , A WAY TO MAKE EVERYONE ELSE MORE COMFORTABLE WITH MY CANCER AND I DID NOT WANT TO FEEL ASHAMED OF WHAT CHEMO WAS DOING TO ME. I WAS FRUSTRATED AND PROUD AT THE SAME TIME OF MY CHEMO INDUCED BALD HEAD AND I WASNT OK.. AND FAR BE IT FOR ME TO DEPRIVE PEOPLE OF THE REALITY OF CANCER AND MAKE THEM MORE COMFORTABLE WITH WHAT WAS HAPPENING TO ME! YUP NOT GONNA HAPPEN!
I HAD REMAINED WORKING THROUGH MOST OF MY CHEMO AND ON THIS PARTICULAR FALL DAY I WAS DRIVING WITH THE WINDOWS OPEN HEADING TO AN OFFICE AND I REACHED UP TO RUN MY FINGERS THRU MY HAIR AND WHEN I PULLED MY HAND AWAY IN MY HAND WAS A BIG CHUNK OF THE LITTLE HAIR THAT I HAD PAINSTAKINGLY TRIED TO PRESERVE. I REMEMBER FREAKING OUR AND THROWING IT OUT THE WINDOW. LITTLE LIFELESS STRANDS HELD ON TO MY FINGERS AS IF NOT WANTING TO LET GO…AND AT THAT MOMENT I CALLED MY BROTHER AND TOLD HIM TO COME OVER THAT NIGHT SO THAT HE COULD SHAVE MY HEAD. SO AFTER A COUPLE OF GLASSES OF APOTHIC RED … MY MOM, MY FRIEND KIM MILLER AND MY PSEUDO BARBER TOGETHER WE TACKLED YET ANOTHER RITE OF PASSAGE IN THE CANCER JOURNEY. OFF WITH HER HAIR!!!
I WAS SO SILLY, I TOLD THOMAS TO USE THE GUARDS AND CUT IT OFF IN STAGES, ALL WHILE THINKING THAT I COULD TRY FOR A SHORTER CLOSE CUT BUT NOT SHAVED HEAD. HE AGREED BUT IT WAS OF NO USE BECAUSE AS HE DID IT MY BALD SPOTS WOULD BECOME MORE VISIBLE AND I LOOKED LIKE A RABID HYENA. SO RELUCTANTLY AND WITH TEARS IN MY EYES AND PAIN IN MY HEART, I HAD TO SUCCUMB TO THE IDEA THAT ALL OF IT HAD TO GO… AND SO HE DID IT! THIS DISEASE WOULD ROB ME OF SO MANY THINGS THAT DEFINED MY FEMINITY, MY EYELASHES, MY FINGERNAILS (BC OF CHEMO) MY BREAST, AND NOW MY HAIR.
I KNOW IT HAD TO BE EQUALLY HARD FOR MY BROTHER AND I COULDNT HAVE DONE IT WITH OUT HIM!! THANKS THOMAS!
A FEW TEARS LATER… WE LOOK DARN GOOD!! LOL
Four days after Vascular Surgry let the party begin…Nah Not really!
I would be scheduled to get 4 rounds of Carboplatin and Taxotere combined with one year of HERCEPTIN. Yes I said ONE YEAR of infusions with Herceptin. Herceptin is a life saving mon-clonial antibody that targeted my aggressive form of HER2+ breast cancer. My cancer cells were replicating fast and furiously and they needed to be STOPPED! Only I would need a year of this infusion to kill every last one of them!!! I would get infusions of the Carboplatin and Taxotere once every 3 weeks but I would have Herceptin every week for a year. Have I said I HATE CANCER!!! Grrrrr!
I was blessed to get the most amazing Oncology Nurse ever created Shamichael!! From my first day of Chemotherapy orientation, no seriously you have to complete it before you begin .Good times right? Unfortunately, I hate to admit it but I had a horrible attitude that afternoon during my orientation but Shay was not phased in the slightest. She was positive, encouraging, hopeful and oh so happy. It was hard to resist her positivity. She is truly an angel sent here on earth to help guide me and my family through the hardest and most frightening time of my life.So with a better attitude than when I arrived we parted ways only to see her again in a few days to begin this portion of the journey.
I was so incredibly nerveous this day.. what would it feel like? how would it make me feel? how sick was this going to make me?would the cold caps save my hair and MOST importantly would it WORK????? WOULD THIS KILL MY CANCER and not me in the process??
The adventures of the cold caps: Please let them work and pretty please help me not lose my hair from CHEMO!!! PLEASE GOD PLEASE!!
I invested several of thousand of dollars not covered by my insurance to save my follicles. I had so little that I was able to control in this disease I thought I might manage a sliver of control by using this technique which had proven to save your hair during chemo. Losing my hair was going to be hard and i was going to try with every ounce of my being to prevent that from happening. I knew there was a chance that it would not work but I was definitely going to try…
Heres how it works:Penguin Cold Caps
This innovative approach reduces chemotherapy induced hair loss by cooling the hair capillaries and reducing the metabolic rate of the hair follicles to a hibernated state, preventing the absorption of chemotherapeutic drugs into the hair bulbs of the scalp.
Here is a montage of pics from my year of getting chemotherapy: Let us first chat briefly about my experience and what I felt during chemotherapy treatments. Everybody will have a different experience from chemotherapy, none of it is fun or easy. My doctor explained it to me in this way, “ it was going to feel like I was bringing you to the brink of death … in order to save your life”. For the record, She could not have been more right!
So, depending on the pre-meds on average my chemotherapy took anywhere from 2 hrs-6hrs. Yup, toxic agents take time!!!Slow and steady is the best otherwise you will just get sick faster… I mean lets be clear you ARE giong to be sick there is NO question!!. Although they will pump you full of steroids, anti-nausea and benedryl to help some with the immediate effects of the Chemotherapy. Chemo is a tricky tricky jerk, because most likely you will only feel extremely tired the day of chemo and then BAM!!! 2-3 later is when the storm hits and your new friend become Zofran and Compazine and you feel like complete and utter dog poo!! The infusion of the actual chemo is where I felt like there was metal in my mouth, somedays I felt like there were bugs crawling under my skin, tired (thank you benedryl) and overall anxiety about how little I could control. Chemo will rob you of you hair, your fingernails, a couple of toenails, eyelashes and taste buds, it will kill red and white blood cells but its all in a days work in the path of destruction to eradicate your body of those dam cancer cells.
In those moments when you feel out of control all you have is your faith. God strips away everything else and asks you to put every ounce of everything you have left in him and the power of the medicine and the team of healers who he has sent to cure you. So it doesnt matter if you pray to God, Jesus, Muhamed, Budda, Allah, Ganesh or whomever , cancer will test your faith and you will need something bigger than yourself to hold on to , something to give you the strength which will guide and comfort you during this dark and confusing time. I say do not limit yourself to one diety… emplore them all… there is power in numbers. lol
THIS IS A PERFECT GLIMPSE INTO THE WEEKLY RITUAL : THEY GAVE ME CHEMO/HERCEPTIN THROUGH MY PORT-A -CATH BUT DESPITE THE NUMBING CREAM I ALWAYS FELT LIKE THEY WERE STABBING ME IN THE HEART. THE AGONY. LISTEN PEOPLE IT NEVER GOT BETTER OR EVEN LESS PAINFUL!!
BETTER OR LESS PAINFUL!
THANKS TO SHAY AND THE GIRLS, I ALWAYS HAD MY OWN TREATMENT ROOM. I JOKED THAT SHE KEPT ME OUT OF ” GENERAL POPULATION” I AM GRATEFUL FOR THAT .I ALSO THINK I WAS AWARDED (AS I LIKE TO TERM) , A PRIVATE SUITE WAS BECAUSE I ALWAYS HAD A ROWDY ENTOOURAGE OF SUPPORTERS IN TOW. IT WAS INTERESTING OBSERVATION WHEN I LOOK BACK, GIVEN THE REASON I WAS THERE… WHICH WAS TO HAVE THESE TOXINS PUMPED THROUGH MY BODY TO KILL THE CANCER and SAVE MY LIFE … AND AS TENSE AND UNCERTAIN THIS TIME WAS, EVERYONE WHO ACCOMPANIED ME TO THE INFUSION CENTER ALWAYS MADE IT AS POSITIVE OF AN EXPERIENCE AS POSSIBLE. THERE WAS LUNCH BROUGHT IN, TREATS, FUNNY YOU-TUBE VIEWINGS (GO THE F$%& TO SLEEP) , SHARING OF STORIES AND SURPRISINGLY A LOT MORE LAUGHTER THAN TEARS. I REMEBER THE DAY THAT THOMAS, KIM MILLER AND MY FRIEND AMY GARDNER WE THERE WITH ME AND WE WERE CARRYING ON LAUGHING SO MUCH SHAY HAD TO SHUT THE DOOR. WE WERE HAVING ENTIRELY TOO MUCH FUN AS POISION PUMPED THROUGH MY VIENS. IT IS STRANGE TO THINK OF IT AS A HAPPY MEMORY BUT IT WAS JUST THAT!!
I AM SO FORTUNATE TO SHARE THAT THROUGHOUT MY ONE YEAR OF CHEMOTHERAPY I NEVER ONCE HAD TO ENDURE A SINGLE INFUSION ALONE!!! I WAS BLESSED AND HONORED TO HAVE AT LEASE ONE PERSON WITH ME EACH TIME. I KNEW HOW DIFFICULT THAT TASK WAS FOR MOST EVERYONE BECAUSE THEY WERE WILLFULLY ENTERING A PLACE THAT FEW PEOPLE GET TO SEE, WANT TO SEE AND UNFORTUNATELY IS NOT THE HAPPIEST PLACE ON EARTH. BUT SHOW UP SOME OF THEM DID!! THANKS TO MOM, DAD, THOMAS, AMANDAD, AMY, KIM, TRAVIS, TERRY, LATOYA, ISABELLA , LIONELL, JOHANNA AND MELODIE ! I OWE YOU A DEBT OF GRATITUDE FOR SELFLESSLY SHARING YOUR TIME WITH ME AND VISITING DURING CHEMOTHERAPY.
I WAS OFTEN HUMBLED AS I WANDERED THROUGH THE OTHER AREA OF THE INFUSION CENTER WHERE I WOULD SEE OTHER PATIENTS THERE ALONE AND I JUST COULD NOT IMAGINE GOING THROUGH THIS BATTLE WITHOUT ALL THE AMAZING AND WONDERFUL PEOPLE WHO SOMEDAYS JUST SHOWED UP UNIVITED !! TO EACH OF THEM I SAY THANK YOU FOR NOT LETTING ME DO THIS ALONE!!
Day after chemo you get a wonderful shot called Neulasta.
Neulasta is an injection they give you the day after chemotherapy, it helps rebuild the red blood cells that chemotherapy is killing, in order to save your life. Red blood cells are made in the marrow of your bones and you usually feel the effect of the drug in the largest bones in your body, femur, pelvis etc. The trouble with this shot is that it made my bones ache like I can hardly describe. My hip bones and femurs were actually sore to the touch. My doctor said it was a good thing, it meant that the Neulasta was working. Along with my worsening neuropathy ( sharp stabbing pain in my legs, feet, arms and hands from the chemo) this made walking and moving around so hard. I felt like I was living in a 90 year old body, I was exhausted, nauseas and in pain most every day. I could not stand or walk for very long. Here I am almost 2 years after this treatment and I still suffer from exhaustion and nerve damage( neuropathy) in my legs and hands from the chemotherapy. Its like the gift that keeps giving.