Dayna's Breast Cancer Angels
In May of 2013, I had my annual mammogram which came back suspicious. The radiologist conducted additional diagnostic testing concluding that it was nothing and I need not return for a year. By early November, the mass was the size of a twinkie and I was without health insurance.
Thanks to the tireless efforts of a nurse practioner from Planned Parenthood, diagnostic testing was provided that concluded I had stage 3, invasive lobular carcinoma of the breast. Or, as my breast surgeon likes to say, "The tricky form of breast cancer."
Planned Parenthood only covered me through diagnosis so they put me in touch with a non-profit that generously assisted me in getting treatment started. Sadly, Obama care wasn't yet available and at the rate my tumor was growing I couldn't wait.
So I forged ahead with 16 chemo treatments ($6000 each), 4 Nuelasta injections ($10,000 each), a double mastectomy and six and half weeks of radiation. A very expensive venture indeed!
The true cost of cancer is more than the medical treatments. It's the loss of income from being unable to work. Or, the complimentary therapies that repair the never ending damage chemo left in its wake.
My journey is not yet complete as I have a minimum of two surgies left in my battle against this nasty disease. The next surgery is a 10 hour procedure with 2 days in ICU is scheduled for January 7th.
My family and I could use your support. Whatever funds are raised here, will be used to pay off the debt we've acquired.
Hopefully, you will become one of my cancer angels by perhaps making a donation but just as importantly by sharing my story with all the women you know and men who have women they love. It has inspired several women to get mammograms and increases my karmic circle of love and prayer.
Yesterday, I received an email from a concerned member of my village asking if everything was alright. Apparently, it's been 184 days since I last posted an updated. Hell...I'm tired of being in treatment and figure you suffer from "illness fatigue" as well. People barely want honest answers to the ubiquitous "How are you?"question so I assumed you don't really want to know. But since she asked.... here goes.
After this last round of chemo ended, they put me on an estrogen blocking med called Arimidex. This drug is taken daily for 10 years to hopefully prevent a breast cancer recurrence. I debated whether to take it or not because I did not see much of a future for myself. However, I decided to take it so that I would have no "treatment regrets".
After the beat down of chemo ends, it takes about 6 months for your body to adjust to whatever your new normal will be. Out with the old and in with something.
I found myself crying all the time so I decided to go to therapy. The intake process revealed I was suffering from mild depression. Not a shocker when you've had cancer twice in 3 years.
Once every quarter, I visit with my oncologist to review whatever symptoms I'm experiencing. They also draw blood to run cancer marker tests to see if either of the cancers from which I suffered have returned. The tests aren't very reliable but it's the best screening tool they have.
They also ordered a bone density test as bone loss is a side effect of both chemo and Arimidex. The test revealed that I do in fact now have osteoporosis. YIPPEE!
So much for my plans to go skiing or climb Machu Picchu. Can't afford to break a bone.
Good news is that after being off Arimidex for a month, my emotions seem to be stabilizing. I no longer burst into tears at the smallest thing. My family really appreciates that.
I had decided I wasn't going to take any more meds because the drugs fix one problem and cause two new ones. However, my physician friends say I MUST take the osteoporosis drug because I'm so young. Ok then. Back to infusion every 6 months I go. Nurse Ratchet best be prepared.
I also had my 1st colonoscopy. Apparently there is a strong correlation between female cancers and colon cancer. Nothing suspicious. Don't have to do it again for 5 years.
On December 14th, I had what I hope is my final surgery. The goal was to correct some complications from my reconstructive surgery. Hopefully, it worked. I'm still bandaged up with drains in my abdomen so won't know for 6-12 weeks after the swelling goes down if the complications were completely corrected. Either way, I'm DONE.
I don't know how long I will live but I do know that I will fill that time with memories as best I can. So as we head into 2018, I am looking forward to having an uneventful year. My emotions and life energy need to reboot. I wish you and yours the happiest and most joy filled holiday season.
No matter. I'm on a mission to have my last treatment April 6. Chemo is a BEAT DOWN! I desperately need it to be over. The process of recovery needs to begin.
It's been hard for me to write these posts and even harder for many of you to read them. Hopefully, this is my last one as there should be no need to update you on my treatments moving forward.
Assuming that's the case, I figured I would try and do a more thorough job of trying to explain what having cancer is like. My friend has been asking for months. So here goes.....
Truth is we all are dying. Most of us keep that reality fuzzy but when someone says you have cancer, it brings that reality into focus. The emotions range from fear to sorrow. In addition to the emotions, there are many practical issues to navigate, most of which are in the circle of things you don't know like which physicians to choose, what treatment plan is best, how to handle your illness at work, how to pay for a six figure treatment etc.
Eventually you have to pick a treatment team and trust that the course of treatment agreed upon is going to give you the best odds for survival. As one of my doctors told me, "Try everything recommended the first time because if you don't get it all the first time, you will simply chase it around the body until it wins." Unfortunately, you don't have a lot of time to make these decisions and your insurance coverage or lack thereof plays a HUGE role in your options. Remember, that the longer you let the tumor grow unchecked, the worse your odds of surviving become.
Most cancer patients have surgery first to remove the tumor then whatever other treatments are recommended, chemo, radiation etc. begin. With my breast cancer diagnosis, I had chemotherapy first. It confirmed that the drugs I received were effective on my tumor. This time, the chemotherapy is "prophylactic" meaning they are hoping it will kill any cancer cells that may have migrated elsewhere. So please don't bother asking if I'm now cancer free or in remission because it's a question I can't answer.
Each phase of treatment has side effects and there is no way to predict what those side effects might be. Here is a partial list of the ones that I have experienced: hypertrophic scarring, blackened nails, sores in my mouth, changes to my taste buds, neuropathy in my hands and feet, nausea around the clock, loss of two ribs, hot flashes, hair loss everywhere including nose, eyelashes and eyebrows, extreme exhaustion, blood clots requiring twice daily injections into my abdomen, axillary web syndrome and worse of all, "chemo brain" which means a variety of things from memory loss to a change in processing ability.
What about alternative or complementary therapies? The internet is rife with information about the latest "cure" for cancer. Everyone and their mother wants to be sure you take "the supplement" that "cured" their cousin's neighbor's co-worker. There is conflicting science about them, none of them are covered under insurance and it's a challenge to find extra time to fit in visits to the acupuncturist, ozone therapy clinic or myers cocktail infusions.
And that brings me to work. Chances are you've been sick for no more than a week or 2 at most. So now imagine having the flu for 5 months or more. My initial treatment lasted 15 months and now I'm on month 7. Would you continue working at the same pace? Would you go on short term disability or take advantage of the family medical leave act? Remember, in addition to feeling crappy and having low energy your schedule is full of doctors appointments and treatments requiring you to be away from the office a lot.
So as you're making healthcare, work place and financial decisions that all have long term consequences, you also have personal cosmic shifts to deal with. I don't think it's possible to face cancer and not be forever altered by it personally. No one ever sits in the chemo room and wishes they'd worked more or gotten that big promotion. So for me, creating memories and joy has become paramount. More important than saving for retirement, paying off debt, building up my business, maintaining an image etc.
And then there are the sacrifices. Sacrifices that all of us have to make. Like my amazing daughter cutting her study abroad time to come back to the US. Or, Earle passing up a job that would've required us to move because he didn't want to interrupt my care.
And many of you have asked how and why I keep "doing" so much. Part of it is because I must. The opportunity to create memories must be intentional and seized upon. In the end, that's all that's left. Doing "the most" or even "the same" also helps to give the illusion that I actually have some control. It allows me to pretend that things, that I, haven't changed that much. That I'm not that sick. It's an illusion of course because control is truly elusive.
We are told AND believe that if we go to the "right" schools, live in the "right" neighborhood" and have a "good job" that we are "destined for a "good" life. Maybe. I graduated from Harvard, built a 6,000 sq ft house with 2 kitchens, had a million dollar business, 3 kids in private school AND private health insurance. Then, some folks on Wall Street decided to bundle bad real estate loans, Detroit fell into a great abyss and thru no fault of mine, my business vanished, my house sold for less than I paid and ultimately, I needed Planned Parenthood and the generosity of a large circle of Angels to make it this far.
And where is here? ALIVE!!!! Finishing up the most amazing 50 Days of Fun tour and marking the kickoff of my 51st trip around the sun. Surrounded by loving family and friends. Enjoying progress without the pressure of perfection. Accepting my new normal and staying laser focused on creating joy everyday.
Last time chemo ended, I had a big party. Earle thoughtfully asked if I wanted a celebration but I think I will reserve the celebrating for April 2022. In the cancer world, reaching 5 years without another cancer is HUGE. Statistically speaking, my chances of reaching 5 years is slightly higher than 50% so I think a big party when I beat the odds sounds like a great idea. Hope you'll join me.
Special thank you's this week to the following Angels: Edward and Claudia Swan for your INCREDIBLY generous gift of love. Stacy Titens for a yummy meal for the guys and Vince Little, Marie Henson and Lisa Meserve for supporting Mason in his quest to be thoughtful and lessen the burden of sending him to an awesome STEM camp for minority students. https://www.gofundme.com/masons-summer-stem-camp-dream
Well, we finally have an answer that explains why even the act of brushing my teeth wipes me out.
I'm sitting in chemo talking to a new Shero and sharing precious time with one of my favorite Angels, when I see my doc's nurse coming toward me with paperwork in her hands. "Uh oh. That can't be good." I said.
"How you feeling?" she asked. "Like I'm in chemo. Why?" I replied. "You are critically anemic so you will have to get a transfusion." Jennifer said. "Ummmm ok. Are you going to add the infusion to my IV? I remember getting them toward the end of chemo last time." "No. You have to come back tomorrow so we can cross type and match your blood type."
HUH? WHAT? Did she say cross type my blood type? "I'm sorry. Are we talking about an iron infusion?" "No. You need a blood transfusion."
So I calmly reminded her that it was spring break with my sons and I could not return for a blood transfusion. She looked shocked. "But you need it." she said.
"I'm sure I do but I need to create memories with my sons more. Dr. Gupta cleared me to go. Are you saying I can't?" I asked. Jennifer's eyes grew as big as saucers and she said she wasn't going to go against the doctor's decision.
"What can you give me instead?" I inquired. "We can give you an injection but it will make you sore and achy for several days." Jennifer replied. "Let's do it! I can't miss this time with my kids and I'm going to feel crappy anyway." I said with great enthusiasm, happy that we found a compromise. Lemontinis from Lennon. I finished chemo, picked up the minions and off we went without passing go.
Sadly, I developed a fever which turned into a cold BUT it didn't get bad enough to force me to go the hospital. Well.... maybe I should have gone but I'm simply incapable of or unwilling to sacrifice any opportunity to have joy creating memories with my sons.
Skipping chemo last week was joyous beyond description despite being sick. Although I'm convinced they would not have cleared me anyway given my illness. Heck, they barely cleared me today. Apparently, my neutrophils are at the border of acceptable and it was double dose day. After a meeting of the minds, they agreed to keep me on schedule so I can hopefully finish on April 6th. However, I have to return tomorrow for a $10k shot to boost my white blood cell production after I start my occupational therapy for my radiation relapse creating pain in my arm. OH JOY! I remember the neulasta shot making me incredible sore and achy last time. Luckily, it's a slow weekend for my Mommy job so I might be able to stay in bed.
In other news, while I was at the airport hoping to get a seat, this adorable 4 year old little man came up to introduce himself and tell me that my "hat" was "scary". I agreed and explained that I was sick so the medicine the doctors were giving me made my hair fall out. I further shared that my chia pet look was even scarier and that's why I chose the "scary hat" instead. Then I took off my hat and let him see my sprouts. We both laughed and felt much better. I miss this kind of directness.
Did I mention that I also seem to have broken my baby toe? I slammed it into my sons iPad at 4:30am trying to get to the door to accept the pizza delivery. See? Adventure me let's them eat pizza at 5am for breakfast. Regular me says, "Oatmeal it is."
Speaking of toes, I am apologizing in advance for my troglodyte toes. I'm not allowed to have a pedicure or paint my toes until after chemo ends. My nail beds are turning black and the nails crack and peel. Looks ratchet. Sorry.
Special thank you's this week to the following Angels: to Angee for sharing her laughter with me during chemo 2 weeks ago and to the king, Earle, for having lunch with me at chemo today. Thank you to Carol Emert, Tamsyn Seimon, Brooks Ensign, Sophronia Scott, Michael Borkow, Marie Henson and Debra Wright-Francis whose generous gifts are helping us pay for battle tools. Your love and willingness to pay it forward is proof that Angels appear in unpredictable ways. Thank you for supporting me, Melissa and Mark.
Love and light,
What a week! Here's a recap.
It was double dose infusion week which hits me like a bullet train and takes me down for a few days. Since I'm getting the big stuff, I see my oncologist before heading to infusion. Here's the good news. Dr. Gupta cleared me to fly, okaying the skipping of next week's treatment. It's spring break so time to create a treasured memory with the minions. The best part is, I don't have to make it up. WHOO HOO! Assuming my blood counts are all good, my last treatment will be April 6th.
Nurse Ratchet remembers me. I thought that perhaps, just maybe, I was being overly sensitive to her bad juju. Heck, it's been 3 years since our 1st encounter and hundreds of Sheroes have passed through the infusion room since then.
However, someone sent freshly baked cookies to the infusion room and as Nurse Ratchet was passing around the plate of death, she asked the Shero with whom I was talking if she would like one. Then out of the side of her mouth, she remarked to me, "I know you don't." HA!
As I was etcha-sketching the vileness from the dark side and dreading the next 96 hours, God sent me a Shero in order to reshape my perspective. This incredible lady is in perpetual treatment for ovarian cancer. The cancer has crossed her blood brain barrier so she's had 6 ovarian cancer tumors in her brain. Five of them were zapped by targeted radiation requiring the drilling of 4 holes in her skull. The 6th tumor required surgery. YIKES!!!
So don't ask me how I'm feeling because no matter how badly that might be, I'm not getting holes drilled in my head to chase tumors.
With that in mind, I headed to Philly to celebrate my great friend's 50th birthday. My friend Liz is an inspiration for how to live a big, full, joyous life always. No waiting until a life challenge forces you to reprioritize what's really important. Stop dreaming and start doing she always says and she is correct.
I'm so tired that just getting ready for bed makes me need to sit down. I've come to believe that if you're going to feel horrible, might as well be surrounded by love and joy.
Speaking of joy, I was lucky enough to spend an afternoon with one of my favorite Angels, Danielle Borge as we thanked Planned Parenthood for saving my life at their annual fundraising luncheon. Danielle is the living gift that my original Shero Rosie left me. I also learned that Planned Parenthood is creating a survivor's network and I have been honored to be invited to join as a founding member. I'm thrilled to be able to finally have an outlet to share my story and advocate on behalf of this important women's healthcare organization.
It was a week full of contradictions and so special thanks to the following Angels whose love and light balanced out the hard stuff: Khayya Kelly-White for sending a cleaning crew to make my house sparkle. Karyna Johri for the delicious meal for the guys. Audrey Smith for your loving, generous gift. Tony Towles for checking on my twice weekly. My Sands, Allyson Brown, for making a special trip to give me a hug. Kanitra Ferguson for consistently joining me during chemo and finally, the King, Earle Fisher for all the many ways he wraps me in love and light.
Dayna, Thank you for the update and never losing your sense of humor. When I was diagnosed with skin cancer, I told the dr the sane thing. You give me one Med that results in me needing other meds to counteract it. Is it ok to share your update link on our Class of 84 Facebook page? In Matthew 19:26, Jesus looked at his disciples and said, “With man this is impossible, but with God all things are possible.” I like to meditate on that.
Love that you're trying something new. May it be a super blessing. Hugs, Shelley
I still can't imagine how you are going through...what you are going through, but please know that you are in my prayers and thoughts. Praying especially for peace for you.
How are you my friend??? I haven't seen a post from you in my newfeed since FB did their algorhythm thing...
It was a blast seeing you, my Shero
Dayna, you are so amazing. I love your candid point of view and humor. I will let you know when I am in town so I can help out...with something or anything Meanwhile, I love you
Dayna, thank you for the update. You are funny as ever!!! Lol. Seriously though--where do you life? Texas? If so, what part? Tracy and I would love to help.