On February 23, 2018, I received the news no woman wants to hear: “I’m sorry, but the biopsy shows that you have breast cancer.”
Like I said, no one wants to hear that, and certainly not at age 41. Not when I’d finally gotten the good job, repaired my credit, and was on my way to putting my life back together after the previous 11 years of constant struggle.
But that was my reality. Stage 3B, triple positive Invasive Ductal Carcinoma with metastasis to the lymph nodes. One of the most aggressive forms of breast cancer had taken over, and was trying hard to take me. Had I waited a few more weeks to be screened, it would have already progressed to Stage 4.
It’s been quite a rollercoaster ride since then. Physically, I’ve been through 18 weeks of aggressive neoadjuvant chemotherapy (to help shrink my large tumor and stop further metastasis to the lymphatic system); a double mastectomy with Phase 1 reconstruction (expanders) and removal of 7 lymph nodes, 3 of which still came back positive for cancer even after all that chemo; 25 rounds of radiation, which caused serious second degree burns and emotional scarring I’m still trying to get over; and 30 more weeks of “maintenance” chemo, or immunotherapy, which I’m still going through until the end of next month.
As a result of some of the treatment, namely the surgery and radiation, I now have a permanent condition called lymphedema. It’s basically a backup of lymph fluid due to tissue damage and not enough lymph nodes to move everything along. The affected areas – my arm and chest – swell with fluid and become numb and heavy, causing a lot of discomfort and inability to use my arm, among some of the symptoms. Since my cancer was on the right side, my dominant arm and hand have been affected. As a writer, artist, and creator, this has seriously impacted what I can do with my art. I’ll find a way to adjust to this, but let’s just say life with lymphedema has really changed how I approach things.
Where We Are Now
Treatment-wise, things have been moving along as well as they can. This chemo, while not as difficult as last year’s, still comes with its fair share of issues. But I’m grateful that I’ve been able to work throughout these past 7 months, even if it’s on a very limited, part-time schedule.
There have been some concerns, however. In my last heart ultrasound (necessary due to the heart toxicity that one of my current chemo meds may cause), it was noted that I have several cysts on my liver. Though this is supposedly quite common, in my case, we need to make sure the cysts are benign. And because of the extreme vision problems and constant headaches I’ve had all year, there was concern that the cancer had metastasized to my brain as well.
I was scheduled to have an MRI on both, but due to some administrative errors, that didn’t happen. I did have a CT scan on my brain, but had a severe allergic reaction (laryngeal edema) to the contrast dye and was nearly hospitalized. The good news is that there were no visible masses in my brain! The not so good news is that I definitely need new glasses. I have the prescription, but I can’t afford to buy them yet because of how specialized my lenses need to be. So the headaches and vision problems continue to worsen. And we still can’t image my liver because of the allergy I have, another contrast CT scan could prove fatal. After fighting cancer for almost a year and a half, we definitely don’t want a diagnostic scan to ruin my progress!
So, the plan is for me to have a PET scan after my last chemo, which is coming up quicker than I imagined. While this is the scan I was hoping to have, it does come with a little bit of “scanxiety” as we warriors call it. Since this is a full body scan and much more detailed, it will show everything. I am confident that it will be clear, but still nervous.
In the meantime, I need your help.
How You Can Help:
There’s a common misconception that once you’re on the tail end of treatment, you’re pretty much “cured” or “okay”. I am NOT. None of us ever is. Especially because the end of active treatment doesn’t mean the journey is over for a breast cancer patient. I have to take a pill for the next 10 years in order to reduce my chance of recurrence, and I have a big reconstruction surgery to prepare for, as these expanders are temporary place holders. Regardless, cancer bankrupts you physically, mentally, emotionally, and financially. While the essence of me is still intact, I’m not quite the same person I used to be. I’m exhausted all the time, I have a permanent disability that affects almost everything I do, I’m in constant discomfort and pain due to the expanders, and I’m flat broke.
In March, my state disability benefits were terminated because I’d exhausted the amount allotted to me. This wouldn’t be too much of an issue if I were working full time. However, I am only well enough to work 25 hours a week, and with chemo happening every 3 weeks, I’m not even working each month in its entirety because of the recovery days after my infusion.
While I’m still in treatment and have a new disability that is directly impacting my job, the state does not offer benefits extensions. My claim for disability due to the lymphedema was also denied this week, causing another huge blow. The Social Security Administration does not consider Stage 3 breast cancer as disabled enough (you have to be Stage 4 to be considered), and my lymphedema does not currently require surgery, so I don’t qualify for SSDI either. And because of what I make on paper, I don’t qualify for a lot of the benefits offered through various agencies. Even if I’m only taking home about $400 a paycheck (who can live on that these days?!), I am not considered to be “in need”.
If they only knew.
As I said, I’m only bringing home $400/paycheck. My rent is more than what I take home in an entire month. In addition utilities and food, I also have new expenses I never had. Namely, the compression sleeves for my lymphedema. I found out yesterday that my insurance has denied the request for coverage (though I’m appealing that), but they are absolutely medically necessary for the rest of my life. Each set (sleeve & gauntlet) costs $150, and need to be replaced every 2-3 months. I’m at the tail end of my current set and have no way to afford new ones until September, when I can start working full time again.
Many of you also know I haven’t had a car for over 12 years. Because I am still in chemo, I am not currently taking public transit, in order to prevent catching infections and viruses that could severely impact my treatment. So, I’m taking Lyft to work every day, and that is literally draining most of what I earn. Each ride is about $12-13, so I’m spending $25 PER DAY just to get to and from work. That’s $600 a month just to get to work alone (!!!), not to mention other places I may need to go. I’m fortunate to have some friends and the American Cancer Society to help with rides to appointments, but when it comes to being able to work or run errands, I’m essentially stuck.
And I need new glasses. :( My oncologist is confident that this new prescription will help reduce or eliminate the headaches and vision issues. But as I mentioned earlier, the types of lenses I need raise the price to something I can’t currently afford ($300), regardless of vision insurance discounts. I have done my due diligence and inquired at several online outlets that friends had suggested, and they all tell me the same thing. It’s not the frames that are causing the problem; it’s how bad my eyes are and the advanced lenses I require.
I have left no stone unturned. I did not want to come on here and start a new fundraiser because I was hoping my new disability claim and insurance requests would help cover some of what I desperately need. So I made sure to explore every avenue before coming here to ask for help. But now that I know for certain I will not have this assistance (at least not any time soon; I AM still appealing these decisions, but they take months to get through), I have no other choice but to ask for help in getting me to the finish line.
As I’ve said several times, I am going to be working full-time again in the next few months. My goal is to return to as close to “normal” life as I can, and that includes working more. It may not be a full 40-hour week at first, but I am looking forward to having a little more breathing room. So, please don’t think I want some permanent handout. I’m looking for help getting me to the end of active treatment, and through the next couple of months. I just need to get back on my feet. I've been through hell and back, primarily alone, but I am ready to move forward from this and live my life again. I should be cleared to start working full-time in September, so this is temporary. It’s just a very scary temporary time. The last thing I need is to have fought and (hopefully) beaten cancer, only to lose the apartment I’ve fought so hard to keep for the past 6 years.
I’ll list the most important expenses I need help with in a separate update for those who don’t want to scroll down this far, but I’ll list them here as well, if you’re still with me. This way you can see an exact breakdown of what you can help with, and see that ANY little bit helps. Seriously! It all adds up!
- New glasses: $300 (I could use a 2nd pair as a backup, but I will be more than happy with 1 pair for now!)
- Lymphedema compression sleeve sets: $150/each (need to get the next one within the next month, as the compression on my current ones is almost depleted)
- Lyft rides to work: $25/day for the next 3 months (for those who would prefer to donate electronic Lyft gift cards, please use [email redacted] (dot) com or message me for details.)
- Rent/utilities assistance: Rent is $900/month, but I don’t expect anyone to fork over that much. Still, ANYTHING is a huge help, because I can use that to supplement what I earn at work, then turn it over to my landlords. Utilities (phone, electricity, gas) come to about $200/month, now that we’re in the summer months and I have to keep the AC on all the time (thanks, lymphedema!).
- StuKitty help: Stuart, age 16, has been my pride and joy since we adopted each other 15 years ago. He is my son AND my ESA (emotional support animal), and a huge part of my treatment and recovery. His supplies and meds cost around $80/month, and while might not seem important to some, it would be a huge help to have some assistance with his expenses over the next couple months.
I’m not worried about food, clothes, or anything else right now. I’ll figure the food thing out somehow (you know I can, even though I don’t currently qualify for SNAP, but I may soon), and the only garments I desperately need are the ones for my arm. I just want to cover the most important things, and that’s what I’ve listed above.
Thank you, from the bottom of my heart, for getting this far. I know it’s a lot of information, but I’m the only one who can properly explain what I’m going through and what I need. Future updates will be much shorter, I promise!
Before I leave you, though, I just want to stress that if you can’t donate, PLEASE consider sharing this link within your personal circles! Sharing really is caring, and the more eyes on this campaign, the quicker (hopefully) I can reach my goal and start getting the things I need.
Links to other ways to donate and help will be provided in a separate update, as I know there are several of you who would prefer to donate directly. I will try to post those in the next couple of days.
Thank you again to all who have stuck by me through this entire journey! Fighting cancer is a marathon, not a sprint, so I truly appreciate those who have been there for me. I’m tired, I’m weak, but I’m SO hopeful for the future! I have so much more to give to this life and this world. With your help, I will get to the finish line and start the newest chapter of my life – with no evidence of disease. :)
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