Living With Cancer is Expensive
Life was never easy, but because my family has always had followed the ever popular Monty Python saying "Always look on the bright side of life" and that each challenge is as my mom loves to say "It's potential for personal growth." I always quip back, "I think I have enough personal growth for the next 5 people or so."
I've been dealing with major medical issues for most of my life. It got more complicated when I was diagnosed at age 12 with Gardner's Syndrome. An extremely rare genetic diease that to this day is not fully understood.
For the longest time I was able to work/fight through just about anything and everything... it wasn't until I got diagnosed with yet another extremely rare, non-curable diagnosis... 3 days after my 33rd birthday (that's 01/23/2013) I was diagnosised with Desmoid Tumors (originally I was told I had one tumor... I now have at least 2) these are a rare form of a soft tissue sarcoma. Shortly after my diagnosis I started on my first chemo treatment. It was an oral agent called Gleevec, which for some reason caused my tumor to grow extremely fast... ie in less than 2 months I had a tumor that felt like a golf ball initially...grow into something the size of a coke can!
I've dealt with more than my fair share of medical stuff... I've undergone 10+ major surgeries, over 2 decades of non-stop medical procedures, scans, biopies etc. This has been the HARDEST battle I've ever had to fight. It has been the MOST physically, mentally, emotionally and spiritually exausting/draining... you name it experience of my life to date!
Thus far I've undergone some of the most trying times in my life ever; this is not some statement I'm tossing out there to make people pity/feel badly for my extremely complicated life. I went into my latest cancer diagnosis thinking "Ok what to I need to do *THIS* time to beat it?" I honestly went into chemo thinking "I've got this... how bad could it be compaired to everything else I've delt with.." Yeah that was really not the best attitute to take when taking on a whole *NEW* and uncharted territory. I soon discovered that my ability to cope with the results were a direct effect as to how I came into the treatment. As each treatment was tried for (X) amount of time... I'd have numerous other issues getting added to my already extremely complicated list of issues... each treatment has it's pros and cons... and I'd soon learn that sometimes it's better to just let it be and skip the maybes and what ifs, it it means less pain, less over all extreme abuse on my body. To day I've undergone 2 oral chemo agents (1 branded & FDA approved drug, and one phase II clinical trial which honestly did way more damage to my body over all compaired to the miniscule shrinkage to my tumors. Yeah that was when I discovered that it's not just 1 tumor... it's at least 2 if not more.... YAY!!!.... NOOOOT!!!!!!!!!!!!!!!!) and I've undergone 2 IV chemo combos or agents, which had varying degrees of success, but again the issue became was were my results worth the cost on my body, ultimately no. Especially since the last IV chemo agent left me in the hosptial in Tampa for about a week or so while the doctors tried to figure out what caused me to break out into a giant lobster red rash all over my body. So yeah... I went from a person who could work 40+ hours running around a pharmacy... to a person who literally at this moment needs a walker to be able to get around my apartment (a wheelchair if I'm going somewhere very large because between my extreme fatiugue, weakening of my over all being. The most simple tasks are extremely difficult for me and I have to wonder if I have the energy to do what I need to do, or if I'm going to be stealing spoons from other days. A thing i've been having to do since I started treatment... I don't know which is worse... the disease or the treatment for it... and the fact is... I don't have a cure! I don't have a magic pill or even the option of surgery. It was brought up twice... the first time my oncologist discovered I wasn't joking about the no surgery clause in my treatment, and now my GI doctor located at Moffitt, who specializes in studying and treating Gardner's Syndrome told me in my last appointment with him; that I am no longer a surgical candidate for ANY SURGERY (unless it was life or death) because my risk of forming a new and equally aggressive tumor was way too high.
So right now my hope is to continue battling for my disability, but I also really want to be able to go to bed and night and not have to worry about do we have money for RENT, for UTILITIES, for GAS (I'm not just talking about running errands around town... we have to make trips to Moffitt usually at least twice a month :( Due to having an older SUV it means the gas mileage isn't what I'd love to have... but it runs well and gets us where we need to go... that being said... a trip to Moffitt Cancer Center in Tampa costs around $60+ dollars... also because Abe's motorcycle is in needs of repairs... he's been using my car for getting to and from school. Because he changed from getting a general BS degree to a vocational degree in applied welding (which is a 10 month program and there are JOBS to be had! one of the many reasons he changed... but with that change came the BLOW of getting awarded LESS money!!!! As it stands they didn't award him enough to even cover the cost of the materials he will need to even DO the applied part of welding... IE ALL the SAFETY GEAR!!!)
I have always HATED/LOATHED asking for help because I felt like people would think I'm just trying to mooch off the compassion of others and other senerios would play out in my head... so I'd go without things just to avoid asking. I'm putting my pride in the BIN and asking for help! Even the smallest amount makes a huge difference... if enough people just toss together $5 once and a while it adds up! And honestly when you're fighting for your life and struggling to keep afloat, it becomes really easy to lose sight of hope in any form.
Hopefully reading my story lets you know how much of a difference you'll be making in not just my life... by in my caregiver and reason I'm still alive and breathing... Abe.
Gennie FINALLY had her Disability hearing and was approved! It has taken several months for everything to happen and even with this huge hurtle finally being cleared, there have been changes, ie her premiums for Medicare were covered until something changed in May, when they started charging her the Medicare A & B premium, which really screwballed things because they took 2 or 3 premiums out of 1 month, which had she not had a little safety net; it would have meant disaster!
The challenges are many because some doctors actually demand payment in full for things... ie She's been anemic for quite some time... we met with a local hematologist/oncologist (since her oncologist at Moffitt is only willing to talk about the tumors..) so the local doctor ordered IV iron infusions... which after getting infused she had to pay over $200, which was not an expense we were prepared for... She had another infusion the next week, but thankfully for whatever reason, they let us go home, but when it was time for her next visit, we had to talk to the billing people, who of course wanted us to cough up over $200... As much as we're tired of the long drives across the state... when we go to Moffitt, we have support and after they bill Medicare, they write off the co-pays because they understand how crippling it is finacially to battle cancer... even more so when there isn't a cure.
Gen had been accepted into a clinical trial and we had some hope going into it... which was very short lived as the side effects shortly started taking over her life. She was officially kicked out of the trial towards the end of July due to concerns over the shocking and drastic drop in her overall health and well being. So for the moment her doctors have her taking a much needed break from doing active treatment. The main reason being her body is not currently healthy enough to even try something else! So hopefully in the coming weeks she'll get stronger and start to come out from the dark place she's been stuck in for the past weeks/months...
Gennie was dropped from the clinical trial after taking the new chemo medication for 5 months. It was deemed that the side effects of the medication were too dangerous for her and not worth the risk. She had a CT scan which showed little to no change in the size of her tumors.
In closing... the most important things that are a challenge to cover every month...
- Rent ($675/month) & Utilities ie power & internet (appoximately $150ish give or take depending on A/C usage) Thankfully, we are able to cover these with Gennie's SSD funds which are a meager 1,092.00 per month. This leaves very little wiggle room as we have to pay for food and gas. (she only gets $28/month for food stamps, which helps, but doesn't even cover 1 week worth of food. It's very challenging as Abe continues his search for work, it puts us even further behind the 8-ball because he has travelled literally from Okeechobee to Melbourne, which means that more money goes to gas. Thankfully the prices aren't what they use to be, but it still money that we really don't have to spend... Gennie is trying really hard to have a small emergency fund, because neither of us have credit cards.
- Genny's cellphone (aka lifeline to doctors) $55/month
- Gas (varies depending on trips to Moffitt & Abe's job searching) estimate $300ish
- Prescriptions & Ostomy supplies run to be about $400ish+ every 3 months.
Unfortunately, Gennie was kicked out of the clinical trial being done at the National Institutes of Health (NIH). The chemo that she was on caused some very serious side effects which could have put her life at risk. So due to the fact that the risk vs. reward also showed that the drug wasn't working for her, so she was taken off the trial.
Her doctors currently have her on a watch and wait with regards to her desmoid tumors. Which is CT scan her every 6 months or so. Gennie was reviewing her CT scan reports, when she noticed a trend with the wording of how each radiologist would refer to her tumors. The last 2 decided they weren't tumors, but were "post surgical changes", which of course set Gennie off on what would seem was a wild goose chase. It turns out that in at least the last 2 scans she's had done; the radiologist completely misread her tumor location as being in the area near her belly button and ileostomy site, which no where near her tumor location. We're heading to Tampa to hopefully to have productive conversations with her oncologist. It's definitely not a situation we've ever been in...
On a positive note, Gennie found a new GI specialist who is located locally and who is excited about having such and interesting patient. Gennie is scheduled to have her first scoping done on this upcoming Monday. We both feel like we made the right move. We'll know more after we get to talk with the doctor about what she saw, but we'll probably have to wait until we get the pathology to know what's really going on.
I'm still filling out the paperwork for getting reduced cost drugs and those are just really slow moving projects. If you have an idea of where else I can look for additional programs, please let me know.
Gen continues to fight hard, but has struggles dealing with coping with her new reality and the need to ask for help. She's the last person to ask for help and the first to offer it to others.
Her wish this holiday is that people stop and think how often we order coffee at Starbucks or go through the drive-thru and instead of buying a 5 dollar coffee or fast food meal, donate to help save a life.
I personally want to thank everyone who has donated. The funds have already bought much needed medication and medical supplies that are a huge part of what goes into a healthier, happier me. There will be updates coming, more photis