Dayna's Cancer Angels - 2x survivor
In May of 2013, I had my annual mammogram which came back suspicious. The radiologist conducted additional diagnostic testing concluding that it was nothing. "You can come back next year." she said. 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. The biopsy 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 and then, the most beastly reconstruction ever, a DIEP flap. 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 didn't end there unfortunately. I tested positive for the BRCA genetic mutation that causes breast and ovarian cancer. The plan was to remove my ovaries as a preventative measure. Sadly, I developed fallopian tube cancer less than 12 months after my breast reconstruction and before they could remove the ovaries. The fallopian tube cancer required a complete hysterectomy followed by another dastardly round of chemotherapy for 6 months. Cancer is a gift that keeps on giving!
My family and I could use your support. I've been sick now for almost 5 years with no real end in sight. Yet. 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.
Today was "D" day. Not because of the extraordinary hearings in DC but because it was my follow-up appointment with my Gyne Onc. The prescribed amount of time had passed to assess the weeds in the lady garden.
As you may recall, at my last two follow-up appointments my master gardener saw a new weed each time that gave her pause. I opted to avoid the dreaded biopsy in lieu of time and a recheck for a host of reasons. One, I want to believe that I'm healed and whatever is going on is simply my body settling into it's new normal. Two, I am AFRAID of all things requiring anesthesia. And lastly, I don't think I have the courage to undergo any more chemo or aggressive treatment.
And like most things cancer related, the visit produced an answer that is a non-answer. She said that my garden "looks unusual but not like traditional cancer". So I am being sent for a cancer marker blood test called a CA 125 and I am to administer some estrogen cream for the next 2 weeks in advance of a recheck on October 11. IF things have not improved, I will put on my big girl panties and have the biopsy.
Another unfun day is almost over and I'm off to create some joy. Love and light to you all.
It's been 45 months since this campaign went live and more than 7 months since the last update. That's a looooong time.
It's extraordinarily difficult for me to write these updates. The reasons why are numerous. Here's a tip: if your time is limited or you're only in the mood for "fun" stuff, jump to the end to read about my giveaway.
Now onto the update...
When we last saw our brave warrioress, corrective surgery had recently taken place and osteoporosis treatments were slated to begin.
The confidently cocky surgeon did improve the hernia/ bulging abdomen and whatever wasn't fixed, can simply remain misfigured. Surgery turns a shieldmaiden into a wimp. (Where's that vibranium when you need it?)
While recovering, the Gynecological Oncologist ( Gyne Onc) insisted I visit so she could check the condition of my now empty playground. Wouldn't want any vagrants setting up shop.
Anyway, she discovered something, a lump or bump, that she hoped was a lesion caused by the catheter from my recent surgery. "I'm like the canary in the coal mine." she proclaimed. "Let's check it again in 6 months." Okie dokie then.
Meanwhile, my regular oncologist, set me up to receive twice yearly infusions for my newly diagnosed osteoporosis.
Since I can only receive IV sticks on one side and the venous scar tissue from 16 rounds of chemo is significant, it was agreed that a shot of Prolia would be a better delivery choice.
Many of you may have seen my Facebook post in April when I posted how anxious I was feeling as I waited for my shot. Although I had known for months that Nurse Ratchet and I would meet yet again, I was COMPLETELY unprepared for how sad and scared I felt to return to the infusion suite as a patient.
As it turned out, Nurse Ratchet and I stayed in our separate corners and the side effects weren't terrible. Hopefully, shot number 2 in October will be easy peasy.
In other injection news, I have developed some lovely keloid scars that require steroid injections in the hopes of making them less bothersome. Let me just say, that I have given birth 3 times with no drugs. Had impacted wisdom teeth pulled with a local only and walked down a ski slope on a broken angel. Yet, these scar injections bring tears to my eyes and make me see stars. Plus, they bleed and leave bruises for weeks. Ahhhhh.... will the joy of treatment ever stop?
Back to the weeds possibly growing in the lady garden. The spot the Gyne Onc saw in December was rechecked in late June. It hasn't grown. WHOO HOO!
However, she identified a new spot that was in the same area as my tumor. My canary started chirping softly. A biopsy was suggested but I am not ready to have any weeding done. No more anesthesia! Instead, I opted for an internal ultrasound and recheck in 3 months.
A friend asked why I chose to wait when it's best to pull weeds as they sprout lest they overrun the place. The answer that makes everyone feel better is that I have faith that I'm healed. The truth, however, is that I don't think I have the strength to go through treatment again. I'm still digging out from underneath the rubble accumulated from the last five years of war.
Which brings me to this campaign. All of you Angels have given emotional support to me and my family and many of you have also given generously to help alleviate the unbelievable amount of financial stress this prolonged fight has created.
In all this time, I have never directly asked for contributions to this campaign but I find that I cannot move ahead until this mountain of stress disappears. Soooooooo....I am inviting you to contribute for a chance to win 2 roundtrip business class tickets to Europe, Hawaii or in the US. (Restrictions apply of course. This is a fundraiser after all. ) There are other thank you gifts as well including frequent flier miles, gift cards and more.
I know many of you have given already without the promise of any thank you gift. So for any Angel that has previously donated, private message me if you'd like to put your name in the hat.
If you have other questions, thoughts, warnings or winning lotto tickets, please message me privately.
Thank you in advance Angels for all you do.
Love and light,
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
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.