I'm making the most of my feel-good health time because I don't know how long it will last.
I met with Ohio State yesterday and am in the process of setting up an account to fund new kidney cancer research. The goal is to produce data on genetic characteristics and mutations in tumors and on each mutation's response to treatment. Other cancers are way ahead in this area, while virtually nothing has been done for KC.
So yeah. I'm going to start fundraising for research soon. I'm excited but scared because I've never done anything like this before. But, it has the potential to help someone else like me down the road. Maybe I can help find a cure, and keep some other kids from losing their mom (or dad).
That's the big news.
The other news is that I'm taking the family to Hawaii over spring break. I've been promising the kids I'd one day take them for years,I had always envisioned it being when they were in high school, but since I'm not guaranteed a future, I've decided to do it now.
Hotel is booked. The cost will come out of this paycheck. Then I'll start looking for flights. Eek so spendy! But, it will be worth it for memories, especially if I drop dead soon!
This month is definitely money out out out.
I'm trying to take care of a lot of big house projects too because my ADD hubby doesn't really notice when the house is falling apart. I swear he's meant to live in an apartment.
We have to have a 60-year-old maple with a split trunk removed, to the tune of nearly $4,000. It requires a crane because it's over the house and the electric line leading to the house. It's been dropping branches for a couple of years, so it'll be a relief to get it out of there. I'm amazed it hasn't fallen on the house yet.
We also need new siding. We have the original cedar shake from 1957 on the house and the panels are splitting and falling off. It's obvious a previous homeowner did some half-ass repairs. It's gonna set us back $14,000. (I'm getting insulated board and batten style, for energy efficiency and to make the house look more mid-century modern.)
It'll be a total transformation, and we have the $$$ in savings, but it feels weird to spend whole big chunks of it at once!!!
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I'm making the most of my feel-good health time because I don't know how long it will last.
Like many people, my family and friends are at a point in our lives where we have all we need and don't need stuff. Of course, that means thoughtful gift ideas are hard to come by this time of year.
Given my terminal cancer situation, my family has hinted that they'd like me to make them things so they can have something personal when I am gone.
Today, I obliged.
I made Star Wars Christmas ornaments for my sister out of salt dough and think they turned out fairly well!
I followed the recipe and instructions here:
Other than the cookie cutters ($10), this was a super cheap project, as I already have the acrylic paint.
I also did small (6x8) paintings of me and my best lady friends to give them as gifts. Drawing people isn't really my specialty, but these paintings kind of sum us up in a cartoon way. I hope they like them. Pardon the picture quality, as they're already framed in glass.
I also make almond poppy seed bread for all of my neighbors. It's super easy and delicious.
We're probably a pretty weird family when it comes to Christmas decorations.
Both of our trees are aluminum, one silver, one purple. Our Elvis bust lamp gets a Santa beard. Our tikis and our Creature from the Black Lagoon mask get Santa hats. We have giant inflatable Christmas trees and snowmen dotting the yard.
Our mini Christmas village is always under attack. This year, it's a recreation of the battle on the ice planet Hoth from Empire Strikes Back. Last year, Mechagodzilla attacked and the year before that Ultraman had a Kaiju battle.
Okay. I know, I know. It's tacky. But so am I. I mean, who keeps the Creature from the Black Lagoon AND Elvis in their house year round. Yep. Me.
Overall, I just hope my kids learn to be creative and that holidays should be fun, no matter what form it takes! Here are some pics...
I just got Cat scan results, after 3 months on immunotherapy, so here's the latest cancer update.
I'm happy to announce that my tumor has shrunk nearly 50 percent and has not spread to other areas AND I feel like a normal, not sick person now. I've also gained back 20 of the 40 pounds I lost in the first 6 months after diagnosis. ( at 5'9", I was down to 119 pounds and I didn't have any more weight to lose .I was all bones. It was scary.)
It probably doesn't change the long-term (terminal) ending of my cancer, but I have been given the gift of more time, and the bonus gift of feeling-good time.
I have joined the lucky club of being one of the 40 percent of patients to get any sort of response to the drug. Now, if I can only get into the lucky 10 percent of those whose tumors disappear completely, I will be seriously over the moon.
Life with cancer right now is better than I ever hoped it could be, and I am taking full advantage.
I'm talking to the research department at my hospital, trying to determine if it's possible to fund new kidney cancer research, but that's in early phases.
I also miraculously haven't gone bankrupt yet fighting this cancer. Thanks to the Affordable Care Act, my insurance HAS to cover cancer care, and my out of pocket has been less than I expected,so yay. In addition to worrying about how my family will survive without me I at least don't have to worry (yet) that I will leave them bankrupt as well.
Thank you for all of your support and encouragement.
Hi all. I figured it was time to check in.
I was pretty depressed this summer, with all the setbacks and hospitalizations, but life has settled into something pretty close to good.
I've had 4 of the immunotherapy infusions (yervoy/Opdivo. You've probably seen commercials, and the developers just won a Nobel prize). And at least on the outside, it's changed my life. I feel normal. as in, not sick. I've been able to basically live my life like I did before I had cancer. Well, mostly.
I've spent the last month eating as much as possible in an attempt to gain back some of the 40 pounds I've lost since December. (I have no more to lose. Literally. I was down to bones. at 5'9" and 120 pounds.) finally, I've gained a small amount, only 5 pounds but enough to give me hope that I do not have cachexia, an incurable cancer wasting syndrome that is just as deadly as cancer itself.
So yeah. I feel good, and I recognize it as temporary and have been taking advantage. Taking the kids places, going out with friends, eating food. Putting up Halloween decorations and planning our annual trick or treat party. All of it.
I'm not a religious person, but I pray it lasts. I hope the medication is working as well on the tumor as I feel on the outside. The thought of going back on another pill that makes me feel awful is crushing.
So that is the update!
We had some big setbacks this summer. My cancer medicine gave me a rare serious side effect called PRES syndrome. I went to the ER thinking I was having a stroke and had three seizures, then the doctors were convinced the cancer had spread to my brain. Good news; I survived. No cancer in brain, just the Syndrome. I was in the hospital for 8 days.
My first round medicince has stopped working. The tumors didn't grow gangbusters, but they grew enough. Now I go for immunotherapy infusions every 3 weeks. I've had one, and ended up in the hospital for 5 days with a Urinary Tract Infection. I felt like they would just not let me go, and they treatments they gave me there just kept me getting sicker.
The hospital is very good. They leave no stone unturned, but when you only went to the er because the nurse line wanted to be cautious and we feel otherwise fine, it's just too many stones.
For instance I had to have two blood transfusions because all the IV fluids they gave me were bringing down my blood numbers....Ugh.
Spending 13 days of july-aug. in the hospital really did change me. It freaked me out. I don't want to go back again. I don't want to spend the rests of my life going in and out of the hospital. It's not how I envisioned it. I thought I'd just be normal until hospice, then I would decline at home. That' how it went for my dad and grandpa and I hope I get the ease of the same.
I got an email from Ceejay the other day that was very touching. But, it also made me realize I haven't posted in a long time, and when you drop bad news like I did, you better be darn sure you're updating!
So here's the scoop. I started the meds for the kidney cancer in January and had to wait until April 30 to get a CAT scan and results to see if they were working.
My doctor warned me that 'success' was defined as the tumor staying the same, and not spreading. If the tumor shrinks? That's basically a miracle.
I got the miracle, at least for now. The tumor became less dense and had holes in it, indicating shrinking. It's still huge, but marginally less so.
It's still gigantic and it's still terminal, but at least the meds bought me a little more time.
The meds are rough, though.
I thought I understood cancer, I really did. I took care of my grandpa and my dad as they died from it. But I was missing a huge piece. I 'understood' cancer in the context of elderly men who refused treatment and were content to go because their work on this earth was finished.
I'd never personally experienced the fight. The hospital visits, the horrors that cancer treatments bring to those with the disease. fighting tumors is hard. Surviving the treatments is hard. It's like chemical warfare in your body. it isn't pretty. It isn't easy. it hurts.
Every month I get a new bottle of pills from the pharmacy, and once I pop the lid, I know I'm in for even more life-altering side effects. It's like a surprise pack: hold tight. You don't know what you're getting this time. The longer you take the pills, the more you have to deal with. For instance, all of my body hair has turned white. even my eyebrows and eyelashes. My skin, nose, mouth and throat are so dry they hurt. And let's not even talk about what's happening in the bathroom!
And I'm starving to death, at least according to my blood work. Because the meds suppress my appetite, and if I do actually try to eat, the meds have killed my taste buds, so everything tastes bitter like brussel sprouts. Oh, and my mouth hurts, so it hurts to chew and it hurts to swallow. Then, my stomach gets upset. Ugh! see what I mean? If the cancer doesn't kill you, the treatment will.
I apologize if I sound like I'm complaining. It isn't my intention. I just wanted to convey that I'm on a road with no map, and it's a real challenge.
In the meantime, I'm trying to make peace with my mortality. wrap up loose ends. I'm also trying to sort and give away extra stuff, so my family doesn't have to deal with it.
But it's a minefield. I have to do it in secret because dh gets upset if he thinks I'm preparing to die. His skin has not grown any thicker, as I hoped it would, as he had more time to adjust.
I really only break down when I think about the pain I'm causing and will cause my children and my family. And I realize a huge part of the rest of my life is managing other people's feelings and trying to put THEM at ease.
Particularly DH and my Mom. They get super angry and/or crying upset/stressed out if I'm not doing or acting the way they need me to in order for them to be okay. Did that make sense? It's like I have to put on a show for them when they are around, doing whatever they associate with me being well, so they don't epically break down.
It's frustrating and exhausting, but I understand why they need it. They hold on to ultimate hope I will somehow be cured, because if they didn't, they'd be swallowed whole by devastation.
My social life is harder in weird ways, too. I'm making an effort to go places and do things I used to do if I am even remotely able. But the side effect? When I run into social friends, many of them don't know what to say to me, or they look at me with sad eyes. I want to shake them and scream "I'm not dead yet!" but I hold back because I know they mean well, they just don't know what to say.
I mean, who does?
So yeah. This is my new life with terminal cancer. Glamorous, isn't it?
In financial news, we aren't spending much so we've managed to squirrel away extra money, and I'll do that as long as I can. I'll have to spend some on house projects, but that's okay.
Well, I've been on my cancer meds for two weeks. I had my first check up yesterday. I'm doing great as far as side effects. Didn't get any of the scary ones-- yet. But, sadly, I did get decreased appetite. On top of my already decreased appetite. which really sucks. I didn't even realize I was having a side effect until I called the doctor's office asking for help with food, and they put two and two together.
Sigh. I lost more weight, which is bad, but now that I know what I'm up against with food, I'm approaching it was food is fuel and I'm drinking a lot of my calories, since solid food is a tough sell for me. Drinking lots of Ensures (bleck...) and eating the same solid foods at the same time every day, just trying to get enough calories in to stem the weight loss.
These last few weeks have been tough, because I'm basically relearning how to live. I won't probably ever feel 'good' like my normal cancer-free self. So I'm learning to how to still get up and accomplish things and live some sort of basic functioning life while not feeling good. Boy. Learning to be chronically ill is not easy.
But, I'm not giving up. I can't.
Yesterday we got some early possible good signs. Although I won't know if the medicine is working on the tumor until the end of April ( I can't believe I have to wait that long.)... my bloodwork had improved this visit. Something approaching closer to normal levels. The doctor said it could be a fluke or it could be an early promising sign. He is cautious. I like this approach. He doesn't spread false hope.
So fingers crossed it's something good happening in me, and not a fluke.
In other news, my will and healthcare papers are signed and legal and finished.
And, my credit card number was stolen, and someone charged $2000 worth of hotel rooms. I didn't catch it for a week because I haven't been online as much. I called Saturday to cancel the card, and we're still waiting for replacement cards.
Well, my treatment medicine arrives tomorrow. I'm both in a hurry to start and terrified at the same time. Fingers crossed I can handle the side effects.
Of course, the good news is that the insurance is paying for the newer, stronger, and potentially better medicine. ANd OSU went a step farther to make it cheaper. My copay would have been $80/bottle. But OSU went ahead and got a copay payment card from the drug manufacturer which brings my out of pocket per bottle to $10.
I literally sobbed for a minute when I hung up the phone. I'm so scared this is going to bankrupt my family, but round one has worked out. I consider this the first small miracle.
Now guys, wish me luck. Let's hope the medicine actually works and the tumor shrinks (best case) or doesn't grow (considered good.).
Tomorrow, it all begins.
The new doctor and his staff at OSU were WONDERFUL.
My prognosis is still bad, but I left with tons of information, all of my questions answered, and a giant bag full of samples of nutrition drinks (like ensure, but hopefully not as gross to me.)
They didn't mess around.
Sadly, though, my tumor is gigantic, filling my entire left abdomen where my kidney used to be. The liver tumors might not be tumors at all, but something I've always had.
It's obviously aggressive, since it grew back so fast after surgery, but it might not have spread. I forget the terms but it ranked 20 percent on an aggressive type test, which is bad news, but way better than if it were 80 percent.
The dr. is starting me on a more aggressive medicine because I am young and should be better able to tolerate it. It has a survival rate 6 months longer than the other pill.
Of course, the survival rate isn't great. If the treatment works, it only works for about a year, then you have to try something new, and if that works, you might get another year. etc. There are only 4 or 5 things to try, each with diminishing returns, so I'm looking at 2 to 5 best case unless a miracle happens.
I'm still profoundly bummed, but I'll take every good day I can get.