Health-wise, anyway. I’ve been doing okay. Part of my plan is avoiding people mostly, except I’m throwing that out the window this weekend for one last big onsite captioning job before I finish treatment - hopefully in February - and have surgery - probably in March. I’m excited about the job, but also know I need to still avoid anyone that shows any signs of illness. I can’t get sick.
One more trip for the ninja mask! And on Halloween, no less. Perfect.
Other than that, we… got a new roof. Our previous roof was put on in October 2018. Two bids later - one for $3,000 to replace the obviously leaking part, and the other for $9,000 to put on a new roof because they felt that the whole thing was deficient, and we have a new roof. We ended up paying an additional $800 for plywood and things due to all the damage. The roof had more damage than it had when we’d gotten it replaced last year.
WTF?
We are starting the process to get compensated from the first roofing company, but in the meantime, I’m sitting on two roofs on my equity line. Hopefully nothing else breaks or we’ll need a bigger line.
Again. Thankful for friends who helped with my deductible. That might have been on the equity line and then I’d have to get much, much more creative to pay for a second roof in two years. Anyway, wish us luck. I don’t want to have to get mean about the crap roof job, but I'm prepared to. Which is why my husband is handling it currently. Angry Amanda is not something you want to experience.
Yesterday we got our downspouts from the house correctly routed to the street so we can avoid flooding out the neighbors. Oops. That was just over $3,000. That will be paid for by the insurance monies we had received to fix the inside of the house from the water damage most likely caused by the crap roof.
The inside will get done eventually. At the moment? Focus on fixing the exterior of the house so that we can feel safe inside for the winter.
Next month we get to pick out our new insurance plan. We received the notice of if we do nothing what our insurance will be. Oh! The premium is going down by around $20/month. But. The deductible is going up $500/person per year. The math tells me that the cost is still going up on that plan, although it is fairly minimal. We will check out other plans using the comparison tools on the Marketplace. Talk more about that soon.
Time to work and then pack before heading off tomorrow. I hope everyone has a good Halloween! I’m sad I’ll miss handing out candy this year.
Our roof is leaking. I mentioned this one before, I think. We’ve gotten one quote, awaiting another. The first one is around $3,000 to fix the spot that needs fixing. The second roofer said that the original job is so bad, they just want to redo the whole thing.
We will be asking the original roofer for our money back. This is ridiculous. Stay tuned on this one.
We need to get the brick front of our house fixed. It’s cracking, probably due to settling, but not severe enough for our mine insurance to kick in (yes, we have insurance to cover damage from mines - most of western Pennsylvania was mined at one point or another). Cost? $3,000-$7,000. Depends on if the lintel is damaged or not.
Let’s aim for no lintel damage. Steel is expensive.
Last, we have two downpipes that needs re-routed. That’s another $3,000. We want it done right and it involves trenching and all sorts of fun stuff. Anyway, what the hell. Might as well just do it.
We bought an older home. It was built in 1964. We’ve been trying to make sure it’s taken care of, but holy crap. Anyway, we will pay for this slowly over time. This is the kind of stuff I’d like a foundation to help people with. Not everyone can draw on credit or be able to finance this kind of stuff. Cancer shouldn’t make you have to make a decision between leaving your home a wreck or selling it and paying your medical bills. No illness should make you have to make decisions like that.
I’m forever grateful for the help that we had to meet deductibles this year from friends, family, and strangers. I wish I had been diagnosed and treated earlier in the year though. Health insurance resets January 1.
I’m holding out hope that perhaps my cancer will reset too!
Not counting on it.
This is the next stressor too. Right now we pay $695.26 per month for health insurance. That covers two people. We are not eligible for any subsidies and buy on the private market since I am self-employed. Each individual deductible is just under $7,000 for each of us. I’ve met mine. Let’s not ask my husband to meet his. Then there is an additional $1,000 or so that is is ‘out of pocket maximum’ - the only reason I haven’t met that is my clinical trial is paid for by the drug company. I meet with my surgeon next month. Let’s see if I can hit that goal! ...that I had no intention of hitting. Oh well.
November 1st the new plans become available. Obviously, I’m going to meet my deductible again. So, we have to do math. It’s possible that going with a much higher monthly premium will actually save us money over the long run. I guess this is some excitement to look forward to? Because we haven’t had enough lately.
I will put up information on the health insurance marketplace after November 1. If you are needing to buy on the private market, it’s a good place to start because you can easily compare plans.
I’m glad I have been able to keep working. We will make it through this little hump, I’m sure. It just really sucks.
Yep. I’m two months into my treatment. Monday of this week, I gave the phlebotomist half of my blood supply that she extracted into 10 vials. She did advise me that some people have even more vials - I can’t imagine. It did take two pokes, which was the first time she’d had to do that. But it’s okay. Hopefully we are only at monthly sticks from here on out instead of every two weeks.
Okay. I’ll admit it. I cried a little after I left on Monday. Two pokes was not what I wanted that day. It’s weird how the little things can kind of make you more upset than the whole overarching, “I have cancer” thing sometimes.
Tuesday was a visit to the oncologist. By that time, I had much of my blood work results back. My RBC is lower than it was 15 days ago and on the low side of normal. No one seemed particularly concerned, but I think if they stopped stealing all of my blood, maybe it’d go back to normal? The oncologist still felt nothing. I’m secretly glad that I didn’t miss a lump or bump - I was terrible at doing self-checks.
I don’t bother with self-checks currently. I have professionals for that.
So, two months of treatment are in the rearview mirror! What does that mean? Instead of every 2 weeks, I get to go to the oncologist every 4 weeks instead. Yay! They’re very nice in the office, but I hope to just pass all my tests and do what I’m supposed to and have no surprises. This is the next part and we are moving on to it as expected.
Of course, November will also be the real beginning of my surgery talks. On November 11th, Veterans Day, I’ll be at month three almost. I’ll have blood work that morning and then we drive downtown and park at the hospital parking garage again. I note this, because I’m curious if anyone else will hit our car in there again. I think I forgot to mention - there was a new dent after our last visit down there. Not that it matters. It’s on the same side as the dents I put on it and the car is getting older. Battle scars.
Back to the narrative. That day I will have my first full ultrasound downtown. I am moving my ultrasounds from where I have been getting them to the hospital just to make it easier on my surgeon/I didn’t want to go for two ultrasounds in one week. One of which I’d have to pay something for most likely. My clinical trial covers all of the required ultrasounds. It just so happens that I have one due the same week I had one scheduled for my surgeon to review. Sweet.
That’s the Monday. Tuesday, November 12th, oncologist appointment! That will be the halfway point of my treatment. Let’s hope the numbers stay steady. November 18th is back downtown for my first real surgical consult. I have to make a decision soon. I still am 100% sure I do not want implants. They require upkeep, and I don’t like the idea of foreign things being added to my body if it’s not medically necessary. So, do I just go flat with no reconstruction? That is the fastest recovery time. Or do I go for the more invasive surgery which is like a tummy tuck but instead of just getting rid of the fat, they make you new tatas? It has a longer recovery time for obvious reasons. You’re being cut open in more than one place. And the surgery will be much longer.
I’m lucky I live in a place where this second option is an option, though. Not every plastic surgeon is capable of doing this type of surgery.
The neighborhood is starting to show fall!
I’ve looked at pictures of both. The reconstructions look pretty good most of the time. Except… it’ll still never be 100% normal. I’ll never be 100% who I was before. It’s weird to think about.
I’m doing okay. I had blood work and oncology appointment last week. Didn’t ask for my results and they haven’t been posted. Oncologist still hasn’t felt a darn thing. In particular today I feel a little bleh. I’m assuming RBC and maybe WBC counts are starting to go lower. Especially RBC. It was already low last appointment, and my blood pressure was low for me. Oh well.
So, what keeps breaking? Oh… the house. We had a contractor fix the old damage from the roof leaking. We’d replaced the roof in October 2018, so better late than never!
Except. Then it rained, and our year old roof leaked. It opened up some of the cracks in the ceiling again - the ceiling is vaulted to it’s easy to see because it basically runs along the roof line - and bubbled some of the paint.
And while looking at that in despair, we also notice damage around and under the window on the inside of the house. We had the mortar on the front of the house patched last year for what we thought was just normal wear and tear. Nope. Or yes, but worse than we thought. Our lintel above the garage is probably sagging. We had noticed that the repair work done last year was starting to open up. It needs to get fixed.
At least the spider finally came out! Maybe she was holding the house up?
Good luck finding anyone to call you back to fix stuff like this around here. We did get one company who said they’d get us a quote - time will tell.
We called our insurance company and they sent an adjuster out. They will help cover the inside repairs, although we have no idea to the extent of repairs needed around and under the window on the inside. They will not cover any of the exterior repairs. Our roofer is coming out Thursday or Friday this week - the leak happened on Monday - to hopefully fix it once and for all. So, that’s good. But we are on the hook for whatever repairs need to be done to the front of the home.
I’m glad I took out more than we needed in an equity line when we were needing the roof. I’m hoping the costs won’t be excessive, but not holding my breath.
See, life doesn’t stop when you have cancer, or any other illness. It just keeps going. Stuff keeps breaking. It’s frustrating. I’m glad we can fix this. Other people have to make a choice that should never have to be made: Do I fix my home, or do I pay for my meds? Or fix this, or eat? Fix this, or pay my bills?
So, while this is a huge inconvenience, we will get through it.
We need changes so no one has to make a decision between taking care of their health, or taking care of their home and family. I don’t think just because someone makes enough money to pay their bills or has enough friends who want to help them stay afloat that they have any more right to life, liberty and the pursuit of happiness.
But until such a time that health care is not a for-profit business, we will need to help each other. I really hope I can help others soon.
Me. To other people going through breast cancer treatment. Just hear me out.
Everyone I’ve talked to who is going through this has been going the chemo route or chemo plus radiation. And always surgery. No one gets out of here without at least a lumpectomy. There are many different types of chemotherapy treatments. I was supposed to do neoadjuvant chemotherapy. That means that I would be treated for cancer via chemotherapy prior to surgery. At the time of surgery, the doctor would be looking for the cancer to be gone or significantly reduced in size. Hopefully gone, or what is called a complete pathologic response.
They want this because this is a very aggressive cancer that I have. If it reappears in the future, we need to know that the treatment works.
This chemotherapy regimen would have been much more of an upheaval to my life. I likely would have had three months of AC treatment followed by T, otherwise known as AC-T. AC are drugs called doxorubicin and cyclophosphamide and T is a drug called paclitaxel. It would have been six months of treatment, the same as I am currently doing. The AC would have been given every three weeks for three months, and then the T would have followed as a weekly treatment after that. I think. It’s all jumbled in my head what drug was where when. But the timing is right. Six months, three months on one drug; three on the other; every three weeks; every week.
Chemotherapy treatments can pretty much eat up a whole day. Some require blood work that day or the day before to be sure you are healthy enough. They all involve hair loss and a list of other symptoms including but not limited to: low red and white blood cell counts, infection, nausea, loss of appetite, mouth sores, diarrhea, fatigue, heart damage, neuropathy - this is the one I was most afraid of due to my line of work, it means loss of sensation in parts of the body. I was so afraid of losing feeling in my fingers. I could deal with my feet being numb or something like that, but I use my fingers every day for work. Not an option.
Accurate.
Instead, I’m enrolled in a clinical trial. All of those side effects were listed, except neuropathy, and I’ve had barely any of them. Fatigue, but I’m able to get around that by sleeping 8-9 hours per night. Loss of appetite, but I’ve never had a problem eating. I know that in order to care for myself and keep working, I need food. So, I eat. Even if I don’t want to. My hair is still intact. Including my leg hair since I’m not allowed to shave. It’s getting a little out of control. I had two days where I had some nausea early on. Since then, I’ve maybe had stirrings of nausea, but not bad enough to even take a Zofran. Zofran is an anti-nausea drug that is a cancer patient’s best friend. I’ve take two. I’ve been on talazoparib once a day for 1.5 months.
Talazoparib is a PARP inhibitor. I know I’ve gone over this before, but just to recap: PARP = poly ADP-ribose polymerase enzyme. ADP = adenosine diphosphate.
Explanation from breastcancer.org:
"PARP inhibitors, such as Lynparza (chemical name: olaparib) and Talzenna (chemical name: talazoparib), have been approved to treat advanced-stage HER2-negative breast cancer in people with a BRCA1 or BRCA2 mutation.
The poly ADP-ribose polymerase (PARP) enzyme fixes DNA damage in both healthy and cancer cells. Research has shown that medicines that interfere or inhibit the PARP enzyme make it even harder for cancer cells with a BRCA1 or BRCA2 mutation to fix DNA damage. This makes it harder for the cancer cells to survive. In other words, a PARP inhibitor makes some cancer cells less likely to survive their DNA damage."
So, I’m trying it for lower stages. I meet all the criteria for the trial, fortunately/unfortunately, so we are giving it a shot. And it appears to be working. Instead of hours in a chair getting an infusion, instead I pop a pill every day. The first two months of treatment, I'm required to go for blood work and to see my oncologist every two weeks. After that, it’s down to once a month.
This is George.
So far I’ve had some low RBC counts, but I feel like this week I should be better on that since I have been feeling pretty good. Or I’m adjusting. Either way, I feel good enough to help put together our epic Halloween display. Maybe not epic, but pretty darn good. I also started back on some workouts yesterday. Admission: I haven’t worked out since I started other than walking the dogs and jumping on my spin bike once. I’ve done the last two days, hopefully I can keep it up this week even though I have a pretty brutal work schedule. It’s a five day a week program, so I decided ‘Monday’ for me should instead be Saturday because I tend to work less on the weekends. So far, so good.
So, yes. I am annoying in that I have to spend less time and am having less side effects. But. I hope that this trial will lead to better and less harsh treatments for others with this particular type of cancer in the future. Who knows? Maybe one day they’ll just treat it with a pill and you won’t have to have a double mastectomy and salpingo-oophorectomy.
That is my hope. I just wish it were the reality already.
