In case you were wondering, the cheeseburger casserole was quite nice.
Hey! I’m here! I’m still alive! Whoopie!
I’ve been busy these last few months. Let’s see, what’s been going on?
I decided to stop taking Tamoxifen back in August. I just could not do it anymore. For one thing, I could barely see out of my eyes because I was so swollen they were almost shut. I also could not breathe. And I spent most of my time sleeping. It was really strange and awful and finally I decided that I would rather be dead than spend the next ten (TEN!) years taking this gnarly drug.
I knew that stopping tamoxifen would mess with my survival odds. I ended up going to this site called Cancer Math and plugging in my stats. Guess what? My odds of survival stink anyway. Too many positive lymph nodes. It’s scary to see it on the screen. That I should possibly be dead already but there it was.
But here was the interesting thing, stopping Tamoxifen according to CancerMath would take 6 years off of my life. But getting my ovaries removed would add the years back.
I had my blood tested in July and I was testing post menopausal. Chemo messed up my ovaries bad. Fried them in fact.
So I decided to get my ovaries out. I had a baseline ultrasound this summer that found a nasty looking cyst on my right ovary anyway. I’m done having kids. The ovaries are kaput anyway and if it really makes my odds of survival better, why not?
So I had the surgery in September. It was fairly easy. Two tiny incision on either side and a tiny hole in my belly button. It was all good except that for about eight days after surgery, it felt like I was being stabbed on the left side of my abdomen whenever I moved! Stabbed hard with a twisty knife. If I was reclined, I was absolutely fine but if I sat up or moved at all, the pain shot to a strong NINE. It was rough. Pain killers didn’t even touch it.
So I watched a lot of tv. I binge watched Scandal which I found to be mostly good. I wish Olivia Pope had more facial expressions than *constipated* but otherwise, it’s a good show.
I swear I could not even stand up for more than a minute. It was really, really unpleasant.
And then one day, I was suddenly fine. Almost no pain at all. My husband thinks there must have been some internal glue that dissolved over night because it was a miraculous recovery.
Still, I spent 10 days inside my house. Seriously. I did not set foot outside of my front door for ten days. And to be honest with you, it was kind of nice. I understand now why people become agoraphobic. It’s nice to just be in your house, in your pj’s with people coming to visit you. It was pleasant. Really pleasant. A girl could get used to just staying in the house. What the heck is wrong with me, right?!
It was different from getting chemo. The day after chemo, I’d have to go back for my neulasta shot. Then there were check ups and all that. I was out and about with chemo. With this surgery, it was nice to just stay home. really nice. Almost too nice.
Anyway, back to the ovary removal. I was concerned that there would be more menopausal symptoms with the ovaries gone but it seems they were truly, truly fried because, if anything, my symptoms have improved. Less anxiety, less hot flashes. It’s one of the best things I’ve ever done in fact. I feel pretty good. I feel more like myself than I have since I was 12 and got on that hormonal roller coaster. It’s pretty awesome to not feel cray-cray every month.
And I am trying a different anti-hormonal drug, Arimidex. I have had some joint pain but it is easily fixed with Aleve. Other than that, I feel pretty good which is a nice way to feel especially after the 8 months of feeling like a truck had run over me on Tamoxifen.
Quality of life matters to me. I am not being glib when I say I’d rather be dead than spend 10 years feeling like something my cat bashed around and then pooped on. And I was useless. On Tamoxifen, I was an invalid. Who wants to be that? Not me.
Especially if this cancer free stuff is simply a respite. Because you know what the first line of defense if I end up with cancer in my organs or bones? Tamoxifen. I’m not going to torture myself when I actually have the potential to feel good. Does that make sense?
A lot of other stuff is going on. We went to Disneyland! I assistant directed a play! I got a new preschool gig! I found more of my shoes! But I’ll have to wait until later to tell you about it. I have to go make this Cheeseburger Casserole. It looks yummy and I am intrigued by the pickles in the ingredients.
I will let you know how it turns out.
Waffle and Dr. Warlord (their camp names) returned home from camp today. Those were the names they chose for themselves and used all week. Both boys had huge smiles on their faces. Both boys gave the camp 10 out of 10 stars. Waffle’s only gripe was that the first night Warlord got homesick and ended up sleeping in the teen cabin with him. Eventually Warlord started sleeping in his own cabin on the third night. Waffle claimed annoyance. Dr. Warlord said it was all about love.
They told us that there was one part of the camp where they talked about hopes and wishes and everyone cried, including them, but they said it was a good cry.
For two boys who were extremely reluctant to attend this camp, they felt pretty happy about the whole experience.
We picked up Waffle’s, class schedule this week since he was away at camp. What a social gathering! It was nice to see everyone and weird to be there without children.
My boys are already back to their computer games but I think after that we shall play a game or two and maybe I can sneak in a snuggle. It’s good to have them home.
This is the week the boys went to Camp Kesem.
This is a magical place for children who have had a parent with cancer. It’s a place for them to just be kids and enjoy themselves. We met the counselors in May at their informational meeting and the boys were excited to go. But the night before, they both were a bit unhappy about being gone for five nights. We assured them that it would be a good experience for them and a chance to bond with other kids going through the not so fun experience of having a parent with cancer.
We dropped them off on Sunday and will pick them up on Friday. This is the inaugural year for the Santa Clara University Chapter so they kept the camp small at less than thirty campers. There are 16 staff members so the ratios are excellent. I have seen a few pictures and it looks like the kids are having a good time. My younger son, I think I will call him Ferdinand, was a little homesick the first night. The counselors checked in with us and we helped them with ideas for easing his homesick feelings. So far, they seem to be working.
There are many branches of Camp Kesem throughout the country and it is a completely free camp. If you know of children who have a parent who has been through, is currently going through or has passed away from cancer, please send them a link to Camp Kesem.
It’s been really quiet in our house. Too quiet. I miss those boys.
But I know they are having a good time and that this is a great experience for them.
My first thought when I was diagnosed was for my boys. I was so concerned for them. I actually felt like I had failed them as a parent by being diagnosed with breast cancer. I was so down on myself about what my illness would do to my boys.
And we had a rough time. We bonded as a family but it was all still very rough. The hardest thing for me is not being able to be the active and energetic mom that I used to be. I know we all do the best we can but my best is not great at the moment and not at all what I envisioned for them.
And one thing I have learned is that having a parent with a serious illness can make you grow up really fast.
And that is why I am so thankful that an organization like Camp Kesem exists. I hope my boys have taken full advantage of the opportunity to just be kids and enjoy themselves.
Because this stuff is really hard when you are a little kid. And everyone has commented on how supportive my boys are and how well they have handled my illness, but that in and of itself is a concern when you think about it. I mean, it’s great that they have been so awesome but it is hard to see them acting so grown up. It’s not normal to have to grow up so fast.
But it is a reality for so many kids today.
I just know that this cancer stuff was never in my game plan. When they were babies, I never once even entertained the thought that something could happen to me. I was just trying to keep the two of them alive, you know?!
I miss those two so much and I don’t like the quiet that has fallen over the house. I can’t wait for them to come home to us.
But I hope they are having the time of their lives.
I am back to feeling pretty crummy most of the time. I had stopped Tamoxifen before my last surgery and felt better almost immediately. I started it back again at the end of May. And now it is August and I have taken that white pill every night for two and a half months and I am back to feeling awful.
The first week I was ok. Then things started to hurt. Then I started gradually to wheeze again. And then there was a bit of malaise which turned into fatigue which turned into exhaustion.
I feel not great all the time. I feel like you feel when you are about to get the flu. Kind of achey and run down. Only the flu never comes and I just keep feeling lousy.
I am also wheezing again. I have difficulty doing anything remotely strenuous. It’s a challenge to just get off the couch without being short of breath.
I am also quite un-Tiggery most days. I’m just back to being an Eeyore.
And I am supposed to do this for ten years.
I don’t think I’m going to be able to do that.
And I know there are people who will say that having a recurrence is much worse than Tamoxifen side effects and I agree. To a point.
There are plenty of people who take Tamoxifen for the prescribed years who still end up with a recurrence. It’s not like Tamoxifen is the magic answer. All Tamoxifen does is lower my chances from like a 20% chance of a recurrence to a 15% chance.
It doesn’t work for a lot of people.
So I’m taking this drug that increases my chances of endometrial and ovarian cancer, it increases my risk of blood clots and it makes me feel like a mildly stinky pile of poo most of the time just to cut down my very likely chance of recurrence by a mere 5-8% points.
I don’t know if it’s worth it.
What would you do? Would you spend whatever time you have left taking a drug that *might* prolong your life and/or might give you cancer in other places and at the same time has some really gnarly side effects like the ones mentioned above?
Or would you rather spend your respite feeling good? Feeling human.
Because guess what they give you if your breast cancer recurs?
Anti-hormonals like…you guessed it Tamoxifen.
Right now. I have no energy. I have shortness of breath and I ache everywhere. I don’t feel like I am really living any kind of life.
And I keep going back to the fact that all that time when I had cancer and didn’t know it? I was running marathons and half marathons, I was working a job that required a lot of energy and I was actively raising my boys. I felt great.
I felt great while I had cancer. And now I am doomed to ten years of feeling like I have the flu? What’s the freaking point?
If they were able to say to me, “If you take this drug for the prescribed time, your cancer will not come back. 100%” I would be more apt to keep taking it. But nobody can tell me that. Nobody.
It’s all, well MAYBE it will work…it works for some people.
And I keep taking it because I am scared. Because I am hoping that it will do it’s job and keep the cancer away.
But what is the point of being here if I am just a lump on the couch?
I am tired of feeling badly. I am tired of this. I did what I was told. Surgery, chemo, radiation and anti-hormonals. I have not felt good in a year and a half. I am tired of being a patient. I am tired of feeling horrible. I would like to be able to breathe again.
But I don’t want to die. And I really don’t want to die the horrible death that is death by breast cancer.
Although, I probably will anyway regardless of what I do.
And I can talk myself into circles of this for days. And I keep taking the meds. Even though they make me feel absolutely miserable.
The fear doesn’t end.
I don’t know what I’m going to do.
I am not the world’s greatest gardener. My thumb is brown. Two summers ago, I gave up and planted nothing. Last summer, my younger son planted the garden with his grandma and it flourished all summer. They planted tomatoes. Just tomatoes. And it was glorious.
My son got kind of tired of it though. There were just so many tomatoes to pick.
“I swear Mom, I am going to rip those plants out by the roots!” he said by the time September came and there were still tomatoes to pick.
This year, we planted again. Tomatoes, jalapeno, cucumbers, lettuce, sweet peas.
It was looking pretty good early on:
I was optimistic. We got a few cucumbers…
And then the cucumbers fizzled. I go four of them which is four more than I’ve ever gotten so I am still marking it as a success.
The lettuce was ok. Younger son would just go out and eat it straight from the garden so it didn’t last long.
The sweetpeas I planted never grew.
We got a lot of tomatoes again. But not as many as last year. Oh well.
The jalapeno grew but never produced any peppers. What’s the deal with that? I fertilized and watered and composted and nothing. It’s frustrating.
But we have lots of tomatoes.
Younger son (I need to come up with a name for him on this blog) has discovered the culinary ambrosia that is clam chowder. I decided to make him some in my crockpot as a special treat.
But here’s the thing, 3 out of 4 of us in this house are avoiding dairy. My husband has developed a definite allergy, my older son and I have a definite intolerance.
Dairy free clam chowder? Will that even work?
Well, yes, mostly. I started with some frozen chicken broth I made about a month ago. then I added celery, green onion and potatoes that arrived in our CSA box.
Then I decided to go really crazy and added some tomatoes from the garden.
I used two cans of whole clams from Trader Joes and let that all steep for a couple hours.
Then i added a can of coconut milk ad while digging through my pantry, I found a jar of Trader Joe’s green curry simmer sauce so I threw that in too and let it cook in the crock pot a few more hours.
I ended up not eating it the day I made it and reheated it the next night for dinner.
It turned out pretty nicely.
My older son said it was sweet and spicy. My younger son was disappointed because it was not a traditional chowder. But they liked it. My husband wouldn’t eat it because apparently, he doesn’t like clams. Married for 14 years, never knew that.
It’s difficult when you have spent a lifetime consuming dairy, to suddenly be without. Goat cheese (we only avoid cow milk) pizza is not the same as good old mozzarella. We’ve tried cheeseless pizza but it can be a bit depressing. Plus pizza with no cheese is messy. The toppings won’t stay put without the cheese to glue them down!
Don’t even get me started on how much I miss real cheese!
I liked the soup. It was not a true clam chowder but it was still good and very flavorful. I think sometimes you just have to play pretend when you are cutting out foods from your diet.
It was better than a poke in the eye with a sharp stick, regardless.
I would like to know what it is about certain people and their ability of inability to garden. I try but nothing grows well for me, but my child can grow anything! I think from now on, I am putting him in charge of the garden.
Hey! Long time no talk! Hope all is well.
Me? Huh? How am I doing?
Mostly ok. Mostly.
What’s been going on?
Well, we’ve been enjoying the summer. The boys have had a couple of camps. We’ve been swimming a lot. We’ve watched some movies. The boys have played a great deal of Minecraft. And I let them. Although I have figured out a trick. If I want them to be outside, i don’t give them a choice. For instance, if I want to go to the pool, I just pack up the swim bag and put it in the car and when I pick them up from wherever they are, i just drive them to the pool. It’s good to have choices sometimes but when you’d rather sit in front of a computer for 48 hours with no sunlight, Mom has to step in.
Oh and this happened:
Isn’t he a doll?
His name is Kevin. Originally, his name was Slater but no one liked that name. Then for about 5 minutes, we called him Shadow but that didn’t fit. And then the boys said let’s call him Kevin. And my husband said something about not wanting to name the cat after one of my ex boy friends. And then we sent a picture to my sister who immediately responded with, “You should name him Kevin.” Which was weird because we hadn’t told her we were considering the name. And the next thing we knew, we were all calling him Kevin. Who cares about ex boyfriends from twenty years ago anyway?! Am I right? Ex boyfriends don’t get to monopolize a name!
We’re taking it back!
He was so itty bitty back then. He was just 6 weeks old. Now he is 4 months old and he is still as adorable and fun as ever.
I missed owning a cat.
The dog was not happy about him at first but now she is somewhat fond of him and they play together. Kevin kind of took over which was unexpected but really kind of funny.
We went to an awesome camp for children with limb differences called Camp Winning Hands. I didn’t get to go last year because of being sick and bald and nauseated and everything. The boys came back from it last summer without much to say so I went in this summer with no expectations but it was awesome! There was good food, excellent entertainment, fun activities for both of my boys and lots of great people to meet. The camp was staffed with professional people from the medical field (not the prosthetic field which is good) and the volunteers were all young adults and adults with limb differences themselves.
Why were we there? Oh! If you didn’t know, my youngest son was born with a limb difference. He was born missing his left hand and part of his left forearm. He also was born with open wounds on his face and on his leg. It was a very scary time for our family. We were told that it was unsure because of the leg wound, if he would ever walk.
But he walked and can do everything, every other kid does. He even taught himself how to do monkey bars!
I once had a blog when he was little that talked about our life together. It was actually kind of popular for a bit. But blogging is weird. People can over-step boundaries and think they know you when they don’t. And people who know you can get weird about blogging. It got weird. Eventually, I got tired of feeling strange blogging about my kids so I shut it down. But I missed it.
And there are times when having a blog is good. Because I have stories to tell about the
jerks sweet little darlings that harass my kid sometimes. Like at the end of the school-year. My son’s soccer team came in second place in a tournament and on Monday morning after, some kid on another team who goes to my son’s school came up to him and said, “You only won because you got lucky…you no-armed kid!!!”
Yes. The kid said that to my kid.
I pointed out that the kid was inaccurate considering the fact that my son actually does indeed have two arms.
“Yeah Mom, I know!” my son replied, “I told the same thing to my teacher and she said to ignore the kid because he was just a sore loser. At least I think she said sore loser. All I heard her say was ‘loser” but I don’t think teachers are allowed to say stuff like that about other kids.”
I think this particular story is a perfect blogging opportunity. Nine years. Nine years we’ve had a kid who happens to have a limb difference and he is still getting stuff like this said to him. It boggles my mind, the stupid stuff people have said to my kid just because of a silly thing like missing a hand. And once you get to know him, you can see pretty quickly that there is so much more to my kid than the hand he never had. And I love how the teacher didn’t make a big deal out of it. Just chalked it up to another kid being a sore loser.
Anyway, Camp Winning Hands is a great place for my kid because he gets to be around other kids just like him and he gets to see older kids with the exact same limb difference doing well and sharing their life.
And the food is good.
And did I mention, it was free?
Here is a video about the place:
So we did that.
There have been swimming lessons and play dates and barbeques. It’s been a nice summer.
Things are pretty ok in Cancerland too. My breathing has improved though it is still not perfect. I am slowly losing weight by watching my food intake (cupcakes make you fat, yo!) and exercise on the My Fitness Pal app.
It’s really helpful to track what you eat.
Food. It’s such a cunning thing. It it meant to nourish you and keep you healthy but that warm fuzzy feeling food gives you can well…make you fat. I’ve been complaining about my weight gain during chemo but the truth is, if I eat smart, which means avoiding dairy and carbs (including cupcakes) and eat lots of fruits and veg and lean protein, the weight slowly goes away. Duh! But it’s hard when you are stressed about…life. It’s hard to always make good choices.
I’ve been walking a lot. Unfortunately, I fell on my face 2 weeks ago while walking the dog. I had her leash in one hand and I had my phone in the other because I was listening to an Audiobook. I tripped and tried to catch myself but the dog just kept pulling me forward and eventually, I hit my head really hard on the sidewalk. I ended up with a bump on my head, a black eye, two skinned knees and a scraped elbow.
It was an epic fall. Epic. I wish someone had gotten it on video. *SMACK* I just laid there on the sidewalk moaning at first while the dog licked me. Then this guy got out of his car to check to see if I was alright. Bless him! By then I had found my phone and was calling my husband. My head was bleeding a little and my eyelid was swollen shut. It was an amazing experience. One I would not like to repeat.
Here is my eye about 4 days after the fall:
What else? Oh, I got a baseline ultrasound of my lady parts because Tamoxifen has been known to increase the risk of ovarian and uterine cancer. I got the results yesterday and they weren’t horrible. But I have a cyst on one ovary that they want to recheck. And it’s a little scary. But we won’t really know anything until I get the recheck in 6-10 weeks and we will go from there.
I kind of wanted to cry when I got the result of the weird cyst but really, there is nothing for me to do about it other than wait for the recheck. Worry is a wasted emotion. Having cancer taught me that. Worry isn’t going to change anything and it might make everything worse.
We’ve had some bumps along the way this summer but we are together and we are happy and life is good.
I promise to write more tomorrow.