Sunday, July 15, 2018

Learning to Fly

This summer has been an adventure in all kinds of ways. First, it's been the first summer I've had off work ever since I've had the girls. We've taken two trips to Battle Creek, Michigan. Olivia and I have averaged at least one day at the pool each week, sometimes more (see last week when we went both Thursday AND Friday.)

It's also been the first summer that Alyssa has been gone more than home. She and N try to spend as much time together as possible, because, duh. N works, so they have to fit their time together between her work schedule.

And now...Lyss is learning to drive. She got her learner's permit yesterday (Saturday.) She's already logged over an hour of driving with me and today she's getting some time in with her dad.

She's pretty good, actually. I try hard to be calm and patient as I'm reminding her to come to a full stop at stop signs and to maybe slow down a little sooner when coming to an intersection. I also try not to grab the door handle when she's taking curves a little faster than I think she probably should.

She's growing up and I'm so glad for her. I want her to fly. I want her to soar as high as she can and do everything she wants to do. I want her to reach for the stars and follow her dreams. I want her to know she can always come home, she will always belong here, even as she's finding other places to belong.

This summer has been the start of the gradual pull away from the gravity of your family of origin for her. She's learning that she has a life that doesn't always include her parents. And that's okay. That's good. But yes, it's hard for me and Tom.

I remind Lyss often she she's still only fifteen.

She then reminds me that she's NOT twelve. She does this with respect and maybe a little exasperation. I get it. I get that she has to pull away a little now so that in a few years she'll be more ready, more confident as she pulls away, both figuratively and literally as she goes off to college.

The teenager years are years of growth, transition, learning to fly and learning to let go, for both the teen and the parents.

We've got this. We're helping her spread her wings even as we continue to pad the nest so if/when she falls, we're here to cushion the blow and let her try again.

Sunday, July 8, 2018

Best Compliment Ever

The other day, Alyssa told me that her girlfriend, N, said that I am the soccer mom for gay kids. She was referring to my black t-shirt that has the rainbow freedom flag on it as well as the rainbow shoes I sometimes wear.

I was flattered, to say the least.

But honestly, it's a fine balance for me. I don't want to make Alyssa's life about me. I want to be a support to her, an ally as she travels this journey called life.

I want her to know that I support her, that I want her to be happy, loved and safe.

We had a bit of a...struggle the other day. She didn't want to go away with me and Liv and my mom for a couple of days to visit an aunt of mine. See, this aunt had made some pretty awful statements about homosexuality a couple of visits ago. I'd tried hard to gently steer my aunt away from her horrible bias and at the time Alyssa said she was fine.

But this time, on the eve of our leaving for the visit (the aunt lives on a lake, so we stay in an apartment attached to her house and swim for days) Alyssa declared she was uncomfortable with staying with this aunt. She was worried that Auntie would make another horrible comment (she didn't) and she said that if Auntie knew about N, Alyssa was worried that it would change Auntie's feelings/thoughts toward her (Alyssa).

I wanted Alyssa to go but I also didn't want to force her into a situation where she was uncomfortable or felt attached, even unintentionally.

It was a tough few hours. There were tears.

In the end, it was revealed that Lyss wasn't so much against going to Auntie's house, she just didn't want to go for three days and nights. We compromised, and went for two days and nights. She was happy, I got to spend time with her and Auntie behaved herself.

At one point during the discussion, though, I told Lyss that I kind of thought that if Auntie knew about N, it might actually go further in changing Auntie's mind about homosexuality rather than changing her feelings about Alyssa. I told her that Auntie loves her and I don't think finding out she has a girlfriend could change that.

I followed that statement up with something along the lines of, "I am not suggesting that it is your place to change the world or even our small part of it. I am not asking you to come out more than you are ready. I want you to do that at your own pace. I want you to feel safe in your world, whatever that takes. If Auntie says something, I need to know how much you want me to defend both you and the ideal of bisexuality and homosexuality. I want to honor your feelings, your story, your place in this world."

We hugged it out and all is well again in the Ordinary world...for now. :-)

Monday, June 25, 2018

Where I Am

I'm home these days. I'm doing laundry and sweeping the kitchen/dining floor. I'm making Olivia breakfast, a snack, lunch, a snack, another snack, dinner, a snack, another snack and a bedtime snack. I'm reading and I'm sleeping until at least 10 every single day because I go to bed at 11 and then Olivia will come and talk to me until 12:30 each night.

My toes are no longer numb except the ring toe on my left foot, and that's only occasionally. I'm very sensitive to the sun but sunscreen helps a lot. Shade helps too. My hair has been trimmed twice now.

I'm taking Liv to the pool and we pretend to be mermaids.

I'm helping Lyss figure out how to 'teen' with sometimes difficult, over-protective parents.

I'm navigating a sense of uselessness (not all the time, just sometimes) as I face each day without a job, without a place I need to be.

I guess I need to be here. I am trying to embrace where I am right this second, my chance to parent my girls in the moment, on the spot. I'm trying to find a sort of zen in the here and now.

I've sent out a few resumes. I've had a couple of interviews. I want to figure out what I want to be when I grow up and where I need to be now that I've finished treatments and have the opportunity to start over. Do I want to go back into HR? Not really.

But this is a small community, I am going to have to figure it out soon and hope what I want meshes with whatever opportunities are available to me. I pray it all works out and that I am useful wherever I end up.

Sunday, June 10, 2018

Recovery

I had my last radiation treatment just over three weeks ago. My last chemotherapy treatment was about 13 and a half weeks ago. How are things so far?

Well, I can't drink Coke anymore. There is this awful chemical aftertaste and it's just gross. The dry mouth is gone but I still have a weird metallic taste in my mouth, almost like blood. Fruit flavored things, you know, like fruit and stuff, tastes good so I frequent McD's a lot for their seasonal Tropic Twist flavored Slushie. Delicious and refreshing and yay, not aftertaste.

The numbness in my fingers and toes has abated. I can put earrings in Olivia's ears without dropping both earrings and both backs in the process. I call that progress.

My hair is obviously coming back.

The burn on my incision that was so awful there at the end of the treatments is healed. No more seeping, no more redness. The scar from my port is actually taking longer to heal than the burn from radiation. So there's that.

I don't need quite as much sleep as I was needing there at the end of radiation. Sure, I still like to sleep a lot but I don't need to as much. Shhhh, don't tell Tom.

I'm good. I'm lucky. I'm blessed, if you will.

Wednesday, June 6, 2018

It's Wednesday...

Since I've missed the last bazillion How's My Hair Wednesdays...here are the last six weeks of pictures. It kind of shows the progression of my hair growth. I can no longer be considered follicularly challenged. I mean, it's still REALLY short but it's way thicker. My sprigs are on the verge of being bangs!! How's that for progress?











Monday, June 4, 2018

Something a Little Heavy

I'm learning to be an advocate. It's a tough road for me because I want to do this right.

Alyssa has a girlfriend.

This girl is lovely and kind and she makes Lyss happy. That's all I can ask of anyone. Alyssa seems to make N happy too so there's that.

At first, my mom was VERY resistant to the idea of Alyssa having a girlfriend. She just couldn't see how it was possible.

I told her (my mom) in no uncertain terms that we are supporting Alyssa, that we love her and she has given us NO REASON whatsoever to stop loving her. She's an amazing, smart, loving, talented girl who has caught the attention of another amazing, loving, smart, talented girl and together they are adorable. There is nothing for us to 'fix' or fret about.

My mom has come around, by the way. She realized she was being horrible for a quick minute and got herself together.

I have an aunt whom I love very much. She and her son lived with my mom and my and my brothers for several years after my mom and dad divorced and my aunt and her husband divorced.

This aunt is very loving and also VERY OPINIONATED.

She recently declared that all gay and lesbian people are perverts. Why does she feel this way? Because, according to my aunt, when she was a child, a lesbian couple lived next door to where she lived with her mom and siblings. These women allegedly touched my aunt and her sister (also my aunt but deceased since I was a toddler so...) Because of these two women and their awful behavior, my aunt has decided to condemn every single gay and lesbian person in the world.

I gently reminded her the pedophilia and homosexuality do not go hand in hand. I reminded her that more people are molested by straight men than anyone else.

She agreed with me that straight men can be pretty awful but went on a bit more about how the perversion of homosexuality is something she just can't handle.

By the way, the entire time she was saying these things, she was cutting my mom's hair and Alyssa was sitting across the room.

I turned to Lyss a few times and mouthed, "I'm sorry." And "Are you okay?"

I kept wondering how long I should sit there and try to gently argue with my aunt before I got up and left the room with my daughters.

At this point, I don't think my aunt knows that Alyssa and N are together romantically. I honestly don't care if she knows. Well, wait, maybe I do care. If she knows and was still spouting that stuff, it makes it worse. But it's still awful to say it at all, even if you think everyone in the room is straight.

I need to support my daughter. I need to advocate for her and fix as much of our little corner of the world as I can because I won't make her sit through a situation like that again.

I don't want to alienate family but I will if it comes to a choice between them and my child.

When we left, my mom apologized to us for her sister's words and attitude. That was something.

Alyssa said she was fine, she told us that she and N pretend to just be best friends when Lyss visits N's work because there are some awful people there too. I hate that they have to do that but understand they have to do what is necessary to feel safe.

Yeah...they have to do whatever it takes to feel safe. Even if it means hiding part of who they are. How fucked up is that? Our world is such a freaking mess.

Friday, June 1, 2018

Fourth Grade - A Recap

School has been out for a week. The last day of school was last Thursday. I now have a sophomore and a fifth grader.

Fourth grade started out rough for Olivia and her teachers and for me. While I was home in September recovering from surgery, I was 'invited' to attend two meetings to discuss Olivia and her lack of participation/cooperation in the mainstream classroom.

During one of these meetings, her teacher suggested, gently, of course, that perhaps Olivia is playing me.

I get it.

Olivia is very smart. She comes across as very competent and so when she flat out refuses to do something that a teacher or aide requests/requires her to do, it comes across as blatant defiance.

The thing is...Olivia has connection issues in her brain. She can desperately want to do something but if it isn't connecting, she simply can't do it. I've seen this myself at home when trying to help her with homework. She'll look at me when I tell her to do something and I can see that she's drawing a complete blank. She hears my words but they don't mean anything to her.

This is not a moment of playing me. It's just that the connections aren't being made.

We made some modifications to her schedule, put her in a class with a teacher who has a PhD in special education curriculum and about seven students in total and she made some major progress. There are a variety of ages in this class, from first grade to fifth. Olivia connected on a social level with the first grader. She grew so much that she actually played at recess with this child.

This reminds me of the fact that socially and emotionally, Olivia is about seven years old. She wants to connect with people but she doesn't know how.

Just this evening I lost my shit with her. And I shouldn't have. I apologized after but I had a moment where I looked at my eleven year old and I just wanted her to act like an eleven year old.

But she can't. Because the social and emotional part of her brain isn't eleven. It's seven and that's why she'd rather play with a first grader than the other fourth graders or even the fifth grader in her class. It's why she relates better to the fourth grade boys than she does to the fourth grade girls. The girls have all matured beyond Olivia and the boys. The boys are still silly little delinquents and enjoy bathroom humor that tickles Liv's funny bone.

She won a writing contest a few weeks ago. It was during Right to Read week at school. It was the second to last week of school. Because she's Olivia, no one expected her to read her short story to the rest of the students that school. But because she won the contest, the teacher who taught Olivia in second grade read the story to the student body while Olivia stood beside her. When she got home, Liv told me, "I was a totem pole while Mrs. P read my story." She was quite proud of her totem pole status. She was also very proud of her story. She stood beside me while I read it and then took it from me and handed it to her dad for him to read it. It was very creative and well written.

I am, obviously, very proud of her. She's come so far and while I know she has a long way to go, she's doing her best (most of the time)and that's all we can ask of her.

Saturday, May 26, 2018

Place Holder

I'm here. I'm just trying to adjust to life without daily doctors' appointments/treatments. I'll get there. I'm sorry for disappearing.

The girls are out of school as of this past Thursday.

I haven't started a serious job search yet.

I'm still in pain from radiation but it is getting better.

My hair is still growing and I've taken How's My Hair Wednesday pictures but alas, I've neglected this space.

I'll get there. I still have a lot to say and not all of it is about cancer or cancer treatments. I promise.

Thursday, May 10, 2018

How's My Hair - Weeks 8 and 9

Okay, so I've become a bad blogger. I'm sorry. Really. But I'm also REALLY tired and come home from each radiation treatment and go back to bed for about two hours before Olivia comes home because I want to have enough energy to get through the evening with her and her sister and if I don't sleep, I can't be there for them. So that's my excuse.

But tomorrow is my last treatment so there's that. Next week will be a recovery week for me, lots of sleep, lots of Netflix and then I'll get on that whole job hunting thing.

But for now, pictures of my hair. Both were taken on Wednesdays, so I have that going for me.

Wednesday, April 25, 2018

How's My Hair Wednesday (on an actual Wednesday)

Picture 8, seven weeks post chemo.

I feel like my hair actually looks better in person than it does in pictures. I might even be a week or two away from being willing/comfortable going out in public without a hat, which is nice because next week is supposed to bring warmer temperatures with it. So, yeah, it's time to put the stocking caps/beanies away and let my hair blow in the wind. Hahahaha.

So without further ado:

Friday, April 20, 2018

How's My Hair...Friday? Yikes!

So yes, radiation fatigue is a real thing. I'm apparently suffering from it. Which is my excuse for not posting How's My Hair Wednesday. But again, the picture was taken on Wednesday, so that's something. It doesn't take much to take a picture. Well, I do have to take the clothes off the hook that hangs from the door and then take the hook down but even that doesn't fatigue me that much.

But getting up and moving around? Yeah, pretty tiring.

Enough of that. Here's the seventh photo, six weeks post chemo (please ignore the fact that it says post-chemom...I blame the radiation fatigue.)

Sunday, April 15, 2018

Radiation So Far

As of Friday, April 13, I've finished 13 rounds of radiation. I have 20 more to go. That means four weeks of daily, Monday through Friday, appointments.

So far the side effects include redness at the site of the radiation (ie, my left boob looks sunburned) and tiredness. I'm not sure I'd call what I'm feeling fatigue but I am pretty tired these days. Now that I've finished my round of antibiotics for strep and an ear infection, I'm sleeping through the night. It's a novel experience and quite lovely. The side effects of chemotherapy made it pretty hard to sleep through the night so I'm loving not dealing with dry mouth, sinus congestion and several trips to the bathroom a night.

But even sleeping through the night doesn't take away my need for a nap in the middle of the day. I can sometimes go without a nap for one day but only for one day. The next day requires a nap to get through the evening.

All this isn't helped by the fact that it's currently track season. Alyssa has two track meets a week and anyone who knows me knows I don't like to miss her meets. I just feel like if she's going to put in the work at practices and compete in the meets, the very least I can do is make it to the meets themselves. So on Tuesdays and Fridays, I make sure I take a nap so I can make it to her meets.

Tom is still very supportive and loving. I do know how lucky I am that he's being so great through all this.

I don't think it's affecting the girls all that much. I still help Liv with her homework and as noted above, I'm still going to Lyss's track meets and spending time with her when she's home, which, these days, isn't as much as I'd like. But then, I suppose high school is the time when kids start spending less time at home so they can get us used to the idea of going away to college. I know these next three-ish years are going to fly by.

Thursday, April 12, 2018

How's My Hair Wednesday (Thursday Edition)

The picture was taken yesterday (Wednesday) but I didn't have a chance to post it. Radiation makes me sleepy and I still have fourth grade homework to do supervise and a teenager to pick up from track practice. Between all that there are so many naps to take.

Anyway, here is picture #6 taken five weeks post-chemo.

Sunday, April 8, 2018

Out of the Mouths of Babes

Last weekend (Easter weekend) my mom invited me and the girls over to her house on Good Friday to dye eggs with Jaxon, Connor and Sabella, my cousin's daughter.

This was the first time Sabella saw me without a hat since losing my hair. She asked me what happened to my hair. I told her I'd had to take some medicine that made my hair fall out. She took that as a good enough answer and went back to her eggs.

Later, she glanced up at me and informed me, "You look like Zordon."

I had no idea who Zordon was so I just accepted her word for it.

It turns out that Zordon is the mentor of the Power Rangers. Good to know. We googled images of Zordon and...wow, the resemblance is uncanny.

I'm considering changing my profile picture to this:


I mean...I'm not sure anyone would even realize it isn't me in the above picture. Hahaha. I do so love the honesty of children. They're so refreshing.

Speaking of my hair, I tried to take a picture of the epic case of hat head I happened to have on Friday but it didn't photograph well. But trust me, it was awesome.

Wednesday, April 4, 2018

Tuesday, April 3, 2018

Some Days Are Better Than Others

Yesterday was a good one. I think part of what made it good was that I made myself get off my butt and actually do something. My mom took me to radiation (I think she misses spending every Tuesday with me.) and then we went to Walmart for a few things. I then spent most of the early afternoon with her at her house watching HGTV. That's always a positive.

I got home about an hour before Olivia did. I ended up falling asleep in the recliner. I vaguely heard her say to Tom when she got home, "Mom looks dead."

Huh.

Anyway, at 4:15 I woke up and realized it was time to do homework with Liv. I then remembered that I'd planned to make potato soup for dinner that night. I sighed with frustration at myself. Tom offered to peel potatoes. I knew he was busy. He'd been busy all afternoon and I didn't want to take him away from his work. I told him, "I can do it. I need to do it. I always feel better when I move around anyway."

And so I did. I told Olivia we'd work on her homework while the potatoes boiled and got busy.

I didn't sit back down for several hours and I felt pretty good for having kept busy and gotten some things done.

Olivia ended up eating three servings of potato soup, to it must have been good.

I'm hoping looking back I will be reminded that keeping busy and active definitely feels better than sitting around, no matter how tired I think I might be.

But gosh, sometimes that recliner looks so inviting.

Sunday, April 1, 2018

Sprigs

Okay, so I've been posting weekly pictures of my hair. I've been posting them here, on FB and on Instagram. Part of the reason I'm doing this is because I like having a record of how things are going. And yes, it's funny. I mean, I have like seven sprigs of hair on the top of my head but damn if they're not growing.

My mom swears that this is exactly how my hair grew in when I was a baby/toddler. She says I was bald until I was almost two and when my hair did finally make an appearance the last place it grew was on the top of my head. So...okay, it's coming.

But right now I feel like I look like a dude with male-pattern baldness. The hair on the sides and the back of my head is pretty thick. At least thick enough that you can't really see my scalp much anymore. But the top? It's shiny and well, kind of ugly.

Just saying.

I try to post each week without using Snapchat filters because I want to be real and honest. But I'm getting a little tired of real and honest. I know it's just hair. I know it's growing every day and new sprigs are probably popping up. But from week to week, even though the comments on FB are so kind and nice about how fast it's growing, I don't see much difference. I still see my scalp and I'm tired of it.

I don't know where I'm going with this. I guess I'm just keeping it real. Even though I can laugh about it, there are moments when I get discouraged and frustrated and just want this whole cancer chapter of my life to be over.

But you know by Wednesday, I'll be over this little moment in time and will post yet another "How's My Hair" pic. It's what I do.

And on the slightly brighter side, on Saturday, I had serious bedhead (even though I was awake from 2am to 7am watching Sharknado movies...I think my ear infection was keeping me awake) and kept complaining about how messy the left side of my hair was. I looked like a freaking baby chicken. My sweet Alyssa protested that I did NOT look like a chicken but I think she just looks at me through the eyes of love and couldn't see the mess that was on my head.

This too will pass and I will continue to laugh about more than I lament it. But I want to continue to be honest about it all, the laughter AND the lamenting. If I can't do that then what's the point?

Wednesday, March 28, 2018

How's My Hair Wednesday #4 - Three Weeks Post-Chemo

Here we are, four pictures in. Today I am three weeks past my last chemo. My hair is growing. Some say it's growing fast. Some days I wonder but then again, other days, I'm all, hey, check it out, the sides are starting to grow over my ears. Might need a trim soon. I have dreams of having hair these days. Like, LOTS of hair, enough to put it in a ponytail. Someday, right?

Tuesday, March 27, 2018

Nervous?

Okay then...it seems I'm not feeling all that adventurous.

Radiation starts tomorrow and I can't sleep. Why am I nervous about this? I sort of know what to expect. I have researched this. I know it's necessary.

But all the research in the world can't really prepare you for the reality.

The reality in my head right now is that tomorrow morning I will go and let the nurses and doctor strap me into a machine and it will burn me for about twenty minutes. I will return to have this done thirty-three times. And each time will be worse than the one before it because, like chemotherapy, radiation and the damage/curative effects are cumulative.

So...I'm nervous.

I hope in about seven weeks I can report that my fears were unfounded and it was a breeze. I really hope that's the case.

I guess we'll see.

Monday, March 26, 2018

Port Removal

Tom and I headed to the hospital last Friday for what will hopefully be my last surgical procedure ever. Please, please, please.

My oncologist felt that my prognosis is good enough that the risks of leaving the port in for any length of time outweighed the risk of needing to put one back in should the worse occur and my cancer returns.

My original appointment was scheduled for 12:30, I was supposed to be there at 11:15 for pre-op procedures to begin.

My phone rang at 9:00 that morning. It was a nurse at the hospital. They'd had some cancellations, could I be there asap for my procedure.

I told her it would probably take us about an hour since I needed to shower (using the lovely yellow Dial...ugh.) and we live about a half hour from the hospital.

She said that was fine.

So we got our butts in gear, and were at the hospital by 10.

We were home by 1:30. All went well and my port is OUT. There's been a little pain. I was a little nauseous as I was waking up from the anesthesia but all's well that ends well.

I think I might have over done it over the weekend. I'm pretty tired today. But I'm resting up now that the girls are back in school after a week off school.

Two days until radiation starts. Let the latest adventure begin.

Friday, March 23, 2018

Sleep - It's Me This Time

Sleep can be so difficult. There are moments when I'm sitting in the recliner, surrounded by my family, enjoying a television show and I can't keep my eyes open. Sleep descends upon me like a warm blanket that I can't resist.

Then, the very next night, I will be lying in bed, bundled under five blankets, unable to get warm, rolled into a ball of misery and I'm trying to wrestle with sleep, to grab it and force myself into slumber. Obviously, that doesn't work.

I like the quote from The Fault In Our Stars when Hazel compares falling in love with Augustus to falling asleep. "It happens slowly then all at once."

Olivia insists she doesn't know how to sleep. That child hasn't had a nap since she was two years old. Even during her bout with the flu a couple of weeks ago, she never napped.

The other night, she was awake until midnight. I kept telling her to go to sleep. She kept saying, "I don't know how." I would tell her to just close her eyes. She's reply, "But even with my eyes closed, I can still hear things."

I mean, sure, that's true, but sleep won't come if you don't close your eyes.

Or will it? Sleep happens even when people are trying to keep their eyes open so...there goes that rationale.

Anyway, this chemo thing/not working thing has screwed up my sleep schedule. I usually don't fall asleep until at least 1am. Then, on school days, I get up at 6:15 to get the girls up. I usually go back to bed at 7:30 once they are one the bus and sleep until at least 10:30. Yeah, I'm a mess. My whole days are spent recovering from not getting enough nighttime sleep and then I can't sleep at night all over again.

Boohoohooo.

Thursday, March 22, 2018

Cost

Did you know there is a heroin epidemic? Yeah. It's sad.

Also, a lot of people are diagnosed with cancer every single day. In fact, according to google, approximately 12.7 people are diagnosed with cancer each year.

The other day Tom was watching the news. I happened to hear one particular segment in which someone politician was saying that we need to set up clinics where heroin addicts can go for treatment of their addiction regardless of whether they can pay for that treatment.

Now, sure, let's do that.

But let's also provide cancer patients with treatment regardless of their ability to pay.

Did you know that in January, right before my third dose of Taxol, I was informed that the remaining ten treatments were going to cost me $5000 out of pocket? Obviously this is because it was the beginning of the new year and all the things I'd paid for the previous year were wiped clean and my out-of-pocket expenses were starting over. I had to meet my deductible of $5000 all over again before insurance was going to start paying.

Yeah. We don't happen to have $5000 laying around. I hope others do but I know that we don't. I mean, sure, we can pay our mortgage each month, we can pay for electricity and put gas in our cars. We are also able to pay our homeowners and auto insurance and still buy groceries each week. I know we're definitely more privileged than so many but we absolutely don't have an extra $5000 in our bank accounts.

I'm so incredibly lucky to have amazing people working on my side. The clerk at the hospital with whom I spoke about payments looked into a program for me and less than a week after I met with her, I got approval from an outside company that covered the entire $5000 for me. Again, SO lucky, I know.

I mean, let me just point out that every single blood draw I had to get prior to chemo (so, yes, weekly blood draws for anyone counting) cost $24.60. And that is out-of-pocket because they were taking place in January and February. It adds up.

I realize that addiction is as much a disease as cancer. I do. You know there's a but coming right?

But...at some point, most people addicted to heroin made the CHOICE to take the drug.

Cancer isn't a choice, at least not for most. I suppose one could make the argument that smokers are choosing to inhale carcinogenic matter into their lungs and thus choosing to get lung cancer.

But for most cancers, it is not a choice. And yet...we pay and pay and pay for our treatments.

What I'm saying, what I already said in the fourth paragraph (does a single sentence count as a paragraph?) is that cancer patients should receive treatment regardless of ability to pay.


When you're battling cancer, you've got a lot on your plate. Paying for your treatment should be the last of your worries.

Wednesday, March 21, 2018

How's My Hair Wednesday - Two Weeks Post-Chemo

Picture #3, two weeks post-chemo. Okay, to be fair, today I was wearing makeup because I had to take Alyssa to the dentist for a filling and some sealant for her teeth now that they're no longer covered by braces. And I didn't want to frighten the dentist's wife, who works as this receptionist/schedule.

So, yeah, there's that.

When I have enough pictures (like four or maybe six?) I'll post a compilation of them so we can see progression of my great white hair as it grows.

Here we go:

Tuesday, March 20, 2018

Pain

I am 12 days past my last chemo. (I'm writing this on a Sunday.) And yet, right this second, I actually have more pain than I did during the twelve weeks I had weekly chemo. My pain was pretty constant during the first eight weeks of chemo, when I was receiving the cocktail drugs. That was pretty bad. But the last twelve weeks weren't so bad.

This past week has been...tough.

It started on Wednesday, a week and a day out from the last chemo. That afternoon I noticed a weird pain just to the right of my belly button. It wasn't constant but it was definitely noticeable.

I googled this and it said that it can be a precursor to appendicitis. Yes. So obviously, I've been super aware of any and all pain in my right side.

And what do you know? There is pain in my right side. But I don't have a fever, the pain isn't constant. It's more intense at night when I'm trying to sleep. I notice it a lot when I get up to pee in the middle of the night.

My lower back is bad at night too.

I just don't know if I should say something to a medical professional about all this weird pain. I mean, it could just be the chemo making it's way out of my body. I mean, that would kind of awesome, painful but also awesome.

Then again, it could also be something different, some more nefarious.

But which doctor do I tell? I don't feel like I'm actually a patient of my oncologist anymore since I'm not actually receiving chemo. Though, wait, I do have an appointment with him in early May. So yes, he's still my doctor.

Do I just call my regular doctor? I haven't see him since he told me we should wait and see about the pain in my left breast so...I don't really have all that much confidence in that dude, even though I understand why he said what he said and I don't really hold it against him, even thought I obviously kind of do.

Do I wait until my first radiation appointment, which is in a week and three days? I could tell the doctor in charge of the radiation about all these weird pains.

Of course, I could call the cancer center tomorrow and talk to a nurse, who would tell me whether it's even worth discussing any of this with a doctor.

Obviously, if the pain in my side gets worse or if I spike a fever, I will call my regular doctor or heck, even go to the emergency room. But right this second, the pain is more of an annoyance than a real fear. Kind of.

Monday, March 19, 2018

YouTube Black Hole

Speaking of YouTube, the other night, I kind of fell into a black hole of YouTube videos. I was watching the latest update from a family member who is the caregiver for her wife. This led to some suggestions from YouTube. Oh, don't follow those suggestions...

I did, though. I found one YouTuber in particular who'd been diagnosed with triple negative breast cancer. Hers was further along than mine. She ended up dying from it.

I know.

But her videos were still helpful. She's the one I'll be watching again to prepare my skin for radiation.

One video, though, gave me goose bumps. I felt like she was speaking directly to me. She'd just told her viewers that her cancer was back, that it was in her liver. She was, at that point, considered terminal. She was still fighting though. She was going to make that damned cancer work hard to take her life.

She was looking in the camera and explaining what it meant to be terminal. She said something like, "Look, if this cancer had been a single small tumor in my left breast, if I'd had surgery right away and followed up immediately with chemo and radiation, I might have beat it. But we caught it later than that."

She made the choice in the beginning to try and fight her cancer, which I believe was stage 2 (maybe 3?) when it was found, using natural methods such as herbs and supplements rather than chemo and radiation. This gave her cancer several months to grow before she had to start the traditional treatments.

But when she made that comment about the tumor being a single, small tumor in her left breast (hers was actually in her right breast) I felt like she was speaking directly to me. I felt like she was telling me (years before I even got diagnosed with triple negative breast cancer) that I was doing everything right. That I am going to be just fine.

I have to believe that. Why else are we doing all this?

My port comes out in six days.

Saturday, March 17, 2018

Radiation

I start radiation in about a week and a half. My first dose will be on Wednesday, March 28. This is Tom's brother's birthday. I only note that because it seems like a lot of my firsts/lasts have landed on birthdays of relatives. Of course, when you have as many relatives as Tom and I have, well, it's probably not that unusual. My first chemo was on my cousin Aaron's birthday. My last chemo was on Tom's older daughter's birthday. It's just a coincidence I wanted to note.

So yes, March 28th will be my first of 33 doses of radiation.

I will receive these daily, Monday through Friday for about seven weeks. The first 28 will be very localized, pointed pretty much directly where my tumor was. The last five will be more general, pointed at my left side. It is these last five that could cause the most damage to things like my heart and my ribs.

I've been told that I need to begin a heart-healthy lifestyle when radiation is over in order to protect my heart, which could very well be damaged by the radiation itself.

I was also told that the radiation will weaken some of my ribs. I shouldn't be surprised if, a year from now, I'm coughing and feel a painful pop. It will just be my ribs cracking. Nice.

The biggest issue, though, according to my radiation nurse and doctor, is skin damage. They gave me some cream I am supposed to apply three times a day after the radiation is administered. This will help ease some of the burning to my skin.

When I took the donuts to my chemo nurse last Tuesday, I mentioned that I start radiation in about two weeks (from then.) I said that the nurse and doctor said it wouldn't be nearly as bad as chemo had been.

Kyla, my chemo nurse, said, "Don't believe everything you hear."

Huh. Okay then. Obviously, I will report often on how it's going.

I've watched more than my share of YouTube videos lately. One in particular was very helpful regarding radiation. I will be going back to that one in the next few days as I prepare for radiation to start.

So yeah, that's where we are right now.

Friday, March 16, 2018

Shrek The Musical

I feel bad that I didn't mention this earlier but well, we've had a lot going on so...that's life, right?

Alyssa participated in her school's musical this year. She was amazing. She had several roles and a couple of solos. The musical was Shrek.

Alyssa was Blue Bird (she got to pretend to explode on stage.) She was also Humpty Dumpty (she got to sing loud and proud.) She was a Dulok Dancer. She danced and sang so well in an awful yellow wig. And she was one of the Three Blind Mice, backing up Donkey during a song.

She worked so hard, as did the rest of the cast. They started rehearsing in January. They had so many songs to learn, so much choreography, so many lines.

My mom and I helped with costumes (I sort of helped, my mom did most of the work.) And I helped with makeup. That was great fun. Getting to see the behind-the-scenes of this amazing production made me appreciate it that much more.

I am so proud of Alyssa. She's really making the most of her freshman year of high school. She's taking part in so many things, from honors choirs to the musical, to track. She's gone to contest with the band, she's been in pep band, marching band, and just hung out with friends. She's enjoying life and that's what I want for her.

Now...if she could only find a rich benefactor to give her a new phone, her life would be perfect.

Thursday, March 15, 2018

One Week Out From Last Chemo

It's been a week and a day since my last chemo. There are still a few lingering symptoms, which is to be expected. Chemo is a cumulative thing, it gets pumped into your body and does it's damage to both cancer cells and normal cells.

Right this second, my toes are still numb. My fingertips are sort of numb too. My mouth is still really dry. I'm retaining water, which is probably thanks to the steroids more than the chemo, but who really knows? I'm trying to drink A LOT of water in hopes of flushing my system, getting everything out of my kidneys and helping the puffiness in my face, hands and feet.

I'm a lovely specimen of womanhood.

Seriously, though, I think I'm doing pretty well. My sleep is better than it was even a week ago. The numbness should go away. The puffiness should too.

I'm grateful for the chemo. It sucked but it was necessary and I'm so glad there are people out there so much smarter than I am who have been researching this stuff for decades. They are literal life savers.

I vacuumed my house today. I think it's the firs time I've done that since surgery back in early September. Now, before anyone thinks we've been living in filth for the past six-ish months, let me remind you that there is another adult in this house as well as a teenager. They've picked up a lot of the slack when it comes to keeping the filth at a minimum. But it felt good to vacuum to do something to take care of my family.

I get my port out next Friday, March 23rd. This is a huge step in accepting that my cancer fight is almost over. Sure, radiation starts five days after that but again, that's another step in this fight. The sooner we get radiation started, the sooner it will be done.

We're taking steps in the right direction and I'm SO lucky to be able to continue to take these steps. The alternative is all too real and I'm not taking it for granted that I will win this fight. I'm just glad to get to keep fighting.

Sunday, March 11, 2018

Flu

We interrupt the regularly scheduled bitch-sessions from this author to bring you a report that the flu, more specifically, Influenza B, has infiltrated the Ordinary household.

Last Wednesday, Olivia woke up with a fever. Obviously, she stayed home from school. She took over the recliner (I'm trying not to be a baby about this) and has actually been there ever since.

She seemed better on Thursday. I kept her home that day anyway because I thought she needed another day to recover from her fever.

The fever was back Friday and so off to Urgent Care we went.

Aside: During all this, Tom wasn't feel so hot himself. His ear hurt and he had the sniffles. But these weren't your typical sniffles, these were Man Sniffles, so he needed to rest often.

I reminded both Liv and Tom on Friday morning that, hey, guess what? While my last chemo had been just three days before, guess what? They'd ACTUALLY given me chemo!!! By Friday I hadn't had even one nap. I know, everyone feels VERY sorry for me, right?

Right. Sure. Okay, then.

So on Friday morning Liv and I headed to Urgent Care. She was sniffle, achy and feverish. I'd given her some Ibuprofen to bring the fever down.

Once we got there, they were pretty quick to see her. The nurse practitioner decided that since I'd just had chemo, a flu test was important. They swabbed O's sinuses (ewww!) and ten minutes later...she was declared positive for influenza B. She was given a prescription for Tamaflu. The NP then asked if I could get a hold of any of my doctors to get a prescription of Tamiflu for myself for prophylactic purposes. She said, "I'm not so much worried about her, I'm more worried about you getting this."

She then offered to write the prescription herself. I took her up on that offer.

As we were leaving Urgent Care to head to Walmart to get my and O's medicines, I called Tom to let him know Liv's diagnosis. He was visiting with J, his older daughter. I kind of thought she needed to know she'd just been exposed to someone who'd been exposed to the flu. Convoluted? Yes, but still necessary.

When Tom got home, he decided he should be seen by a doctor too. He ended up coming home with a steroid (join the club, Dude!), an antibiotic can Tamiflu too. While he was at Urgent Care, he asked if he could get a prescription of Tamiflu for Alyssa, just to cover the whole family.

They said they really needed to see her before giving a prescription. She had a performance of her school's musical that night, so she and I raced to town the next day between a band performance and musical performance. She's now on a ten-day regimen of Tamilfu too.

Olivia is on the mend, my cough is getting better, Tom's ear is clearing up and Alyssa is over her snit over having to take medicine when she's not even sick. All's well that ends well, right?

Right.

Wednesday, March 7, 2018

How's My Hair Wednesday - Day 1

Today is Day 1 after chemo. I'm going to take weekly pictures of my hair growth and post them. I hope it will be fun for all to see how my hair grows now the the poison of chemo is no longer being pumped into my body.

So...here goes. The state of my hair on Day 1 after chemo:

Tuesday, March 6, 2018

Anti-Climactic

I headed into chemo today thinking it was my next to last chemo.

I counted wrong. Today was my last chemo.

I'm not complaining. This is a great thing. I'm done. I did it.

Sure, I have radiation next, but one chapter of this fight against cancer is done. We get to move on to the next.

I just thought it would be a bigger deal. Or rather, I'd planned to make it a bigger deal. I was going to take donuts to the nurses and staff at the cancer center next week. I mean, I guess I still could. And I might. But it was going to a celebration.

Instead, it was just another chemo. Except, it wasn't. It was my last.

I met Dr. Z. They're scheduling my port removal to take place before I start radiation. That's a big deal too. He explained that with my chances of the cancer coming back now reduced to six percent, it makes much more sense to remove the port. The negative aspects of keeping it are greater than the chances of needing it. He explained that to keep it means I'd have to have it flushed every six week, there is a chance of infection, there's the risk of blood clots...yeah, lots of negatives. I actually didn't need to be convinced. I'll be glad to have it removed.

Today was a day of lasts.

Last chemo, last port access, last weigh-in with the chemo nurses (I was scolded a bit for losing 7 pounds from last week to this...I don't want to talk about it.)

Last time sitting in that chemo chair, last batch of steroids (Yay!!) Tonight will hopefully be my last night of steroid insomnia. My face can finally, probably slowly, lose it's steroid puffiness. My feet can lost their numbness.

I have about three weeks off before starting radiation. That will be nice. A few weeks to let the chemo work its way out of my system, a chance to maybe start feeling like myself again.

Than the next chapter starts. Bring it on. I'm ready to continue to this fight all the way to victory.

Wednesday, February 28, 2018

Heart Healthy Lifestyle

I didn't realize how quickly those three words "Heart Healthy Lifestyle" could send me into a spiral of self-loathing and shame.

I met with the radiologist today to discuss the radiation that will start about three weeks after my last chemo. I can go over all that was discussed later.

Right now I'm so wrapped up in his mention that after treatment I need to try and follow a heart healthy lifestyle. Not only will it help my heart in case there is damage from the radiation but it will also lower the chances of the cancer coming back. The chemo and the radiation will have already lowered it to less than 10% but did you know that fatties like me have a higher risk of developing triple negative breast cancer than non-fatties?

Today was the first time since my diagnosis that I felt like maybe, hell, probably this whole cancer thing is my fault. Never once have I thought that until today. And now I can't stop thinking about it.

See, I'm horrible about self-control. I don't like heart healthy foods. Protein is not my favorite thing. I could live on carbs...except, wait, obviously I can't since apparently my love of carbs and my gigantically fat body is why I got cancer in the first place.

I am also really bad about portion control. I tend to eat until I'm miserable. I know. Lovely. I'm a model of gross.

I don't enjoy exercise. It doesn't make me feel better, not physically nor emotionally. I know a lot of people get a lot of satisfaction out of working out. Good for them. I do not. I hate to breathe hard. I hate to sweat. I don't feel better, more energized after working out.

No wonder I'm fat and cancerous.




I know this is all a bunch of self-indulgent whining. I KNOW this. And yet it's what is going through my head right now. I can't help it and I'm trying to get it out because it's poison. I know it isn't helping that I feel like this. I know the fact that Tom made me a stupid sandwich this afternoon and that sandwich made me sad is so stupid. I ate the damn thing, though. I did tell him that I won't be eating dinner since I ate that fucking sandwich.

He tried to make me feel better by reminding me that tomorrow, March 1st, he's going on a diet. He wants to lose 15 pounds.

I told him, as gently as possible, "Sweetie. I love you very much. But you wanting to lose 15 pounds is not comparable AT ALL to my NEEDING to lose at least 50. So please, don't."

That man can stop eating bread and ice cream for a week and lose 15 pounds.

I can stop eating bread (I don't actually at that much bread) and GAIN weight.

Heart healthy lifestyle. What the hell does that even mean? I guess I have some googling to do. Damn it.

Tuesday, February 27, 2018

Dates, Complaints, Pulling It Together

I have all these days swimming around in my head. August 21...diagnosis. September 5...surgery. October 17...started first batch of chemo. December 19...started second batch of chemo. December 18...last day of work. November 27...Olivia's birthday. January 14...Alyssa's birthday.

February 3...Amy died. She died. She died. She died.

She died and yet I still have all these petty little complaints rolling around my thoughts.

My hands have a rash on them. It's ugly and itchy and while at play musical practice last week, I was working with some of the moms on the costume committee. One mom in particular and I were working on the horse that Farquad uses to meet Princes Fiona. We were taping a piece of fabric to this inflatable horse, trying to make it look like a saddle. I noticed how smooth and young her hands looked. She and I are the same age. My hands are gross. But I'm alive, so why am I thinking about how ugly my hands are?

I feel like it is so much work to try and sleep in my bed these days. The best sleep I get is sleeping in the recliner from about 8am to noon on Wednesday mornings after my Tuesday night insomnia. My bed makes me congested, it makes my hips hurt. I have to pee every two hours and I have to roll my gross fat body out of bed, lumber to the bathroom, pee, get a drink of water to try and alleviate the dry mouth I have because I'm so congested that I've become a mouth breather. I blow my nose and get these gross globs of bloody snot. It's disgusting. Then I go back to be and do it all over again. Yes, I'm sleeping with a humidifier next to me. Yes, I've tried Benadryl to help with both the hand rash and the congestion. It just dries me out that much more. I have five pillows in my bed to try and help with the aches and pains. They don't actually help much at all.

I'm back to sleeping in a bra because for the couple of weeks that I tried to sleep without one, my incision started to hurt. My boobs were pulling at it in a way that was painful. I'm a delight and lovely to be around.

Hats...I'm so sick of wearing hats. I'm lucky that it's winter and so no one thinks anything of my hats but my stupid head gets to hot after a few hours in a hat and when I'm in public, I'm not actually that comfortable taking off my hat, even though my hair is growing back. It's only about a quarter of an inch long, though, so not nearly long enough to go without the hat.

But can I say that when I see people wearing stocking caps as a fashion statement, I feel a rage well up in me that makes me want to go and snatch the hat off their stupid hairy heads, fill the hat with butter and beat them with it. Obviously, I don't do this but I want to because they have NO IDEA what it means to HAVE to wear a stupid had day in and day out and it just kind of in infuriates me.

I realize this is not rational. I know. I don't actually care, though, since I know I won't ever actually assault anyone with a butter beanie.

Steroids are evil. I know I need them to help keep the worst of the allergic reactions at bay. But the munchies, the insomnia, the irritation (see the above mention of wanting to use a butter beanie on fashion hat wearers.) They're tough to deal with. I've gained about six pounds in the past ten weeks. I have no energy to do anything about these eight pounds. I just want to eat waffles at 3am after taking a hot bath. Yeah, real conducive to losing weight.

I'm so tired.

I only have two more chemo sessions. Tom and I are meeting the radiologist tomorrow morning at 8. I'll know more about that after the appointment, obviously. I want to be well. I want to go back to work (sort of...) I want to take care of my husband and kids.

I know I'll get to. As long as I'm still here, I have a fighting chance. I know this. And knowing that Amy doesn't, well, it makes me feel like such a whiny brat. I will pull it all together now that I've given myself a moment to feel a little sorry for myself and get all my complaints out of my head.

I'll be okay. Hey, on the bright side, I've managed to avoid the dreaded diarrhea...I can always fall back on that.

Saturday, February 24, 2018

Being Useful

I'm learning that I'm better when I'm busy.

I'm really good at sitting in the recliner and binge watching Netflix shows. But that's not really good for me. I feel kind of awful after a few hours of sitting in that chair. Even if some of that time is spent sleeping (which is actually better sleep than in my bed...remind me to tell you about how much work it feels like to try and sleep a night in my bed...)

Last weekend an old co-worker called me. He wanted to let me know that another co-worker was turning 50 and his (the birthday boy's) parents were taking him out for pizza. I created a FB group for my old co-workers to keep in touch. The one who called me asked if I'd post on that page letting people know about J's bday and maybe inviting anyone who wanted to surprise him.

I was happy to do this.

Within a couple of hours of my post, we had about twenty people saying they'd be there. It was great.

The party was set for Thursday.

I felt pretty crappy Thursday. I spent a lot of time in the recliner. I slept, I ate waffles, I watched all the episodes of season 2 of Selling Houses with Sarah Beeny. Then I decided I was going to shower because, damn it, I wanted to see my old co-workers.

That shower was exhausting. But I did it. And then I rested. Then I got in my car and drove twenty-five minutes to the pizza place. And I ate pizza and visited with people I hadn't seen in over two months.

I took off my hat to show off my hair growth and had people tell me how great I look. That was lovely and all but the best part was...I felt better. Getting out of the house, surprising J on his birthday, laughing and just seeing people I hadn't seen in a while was so nice.

Alyssa's got her school musical coming up.

When I went to the parent meeting for this musical about two months ago, I signed up to help with hair and makeup. I mean, I do Liv's hair every single day. How hard can it be to help out?

While at the meeting the mom in charge of costumes asked me if I had any ideas for one of Lyss's costumes (she's got four parts...it was five but she had to step out of one of them due to impossible costume changes.) I told L that my mom was great with a sewing machine and that she'd be happy to make Lyss's Blue Bird costume (it's awesome, I mean, seriously amazing.) Oh dear. I didn't realize what I was signing my poor mom up for. She's made costumes for Blue Bird, Donkey, Elf, young Shrek and so many more small projects. She's been amazing.

For my part, I have attended several practices to help with whatever I can possible help with. I've sewn a few hems, ripped out a few seams, etc. But it's the fact that I'm needed, even if just a little, that makes me get up and go to these practices.

I want to be useful. I want to get things done. I want to feel good and even when I don't, knowing there are things that need to be done and people counting on me helps me push past any discomfort and get up and get going.

I think that's the best thing for me.

Heck, some days I feel like I've accomplished something if I just get a load of laundry done from start to finish. It's the little things.

I also remind myself that this part of my life is not permanent. I won't always feel awful just from trying to sleep in my bed. Only three more chemo treatments. It's pretty great to be able to say that, if nothing else.

Tuesday, February 20, 2018

Placeholder

I'm tired of talking about chemo and cancer. I'm tired of thinking about it. Maybe that's why I've been quiet here for the past couple of weeks. Sorry about that.

Alyssa has kept us busy with other things, though. She distracts me from my level 2 pain and my sleeplessness. She gets her braces off next Tuesday (one week to go!) She's so excited. I'm excited for her. It will be nice to enjoy her last three years of high school brace free. I will miss that metal mouth smile, though.

But on the bright side, Liv will probably get braces in the next year or two and I can enjoy her brace face for a few years.

Musical practice (I'm not allowed to call it play practice, per Alyssa J. Ordinary) is going well-ish. Mrs. F, the choir teacher and the director of the musical kind of stretches play practice as needed, which frustrates the parents of the kids who can't drive themselves. I've been REALLY lucky that Lyss's friend Tess and her mom usually bring Lyss home from practice. But I feel for Tess's mom because she's the one who often has to wait in the parking lot of the school for a half hour or more as practices goes over the allotted time. The musical they're putting on is Shrek. Alyssa has five parts. She's worked so freaking hard. I'm so proud of her I can't stand it.

My mom, the saint, got volunteered by someone to help with costumes. I will not confess to being that someone who volunteered her. It's not my fault she's so great with a sewing machine. She shouldn't have developed such skill if she didn't want me to brag about it and get her roped into making about seventeen costumes play musical.

Olivia is...Olivia. She's reading like a champ, struggling with math, stubborn as a mule while managing to keep us all laughing. She argues with her dad as if they're opposing lawyers in a criminal trial. She's so smart and yet sometimes, channeling that intelligences is tough. Her teachers are amazing.

Tom continues to be a source of strength for our family. He helps so much. His support humbles me. When we started this journey, I felt a lot of guilt over needing him and I felt I didn't deserve him. I've changed my mind. He's great but I do deserve all that he does for us. I'd do the same for him. That's what marriage is all about. Sometimes one person takes more than the other but at some point, I will be able to give to him and our family again and knowing that makes this a little easier.

Three more chemos. I meet the radiologist in a week. More to report soon, I guess.

Monday, February 12, 2018

A Memorial

We had my cousin's memorial last Thursday. It's tough having a memorial for a 48 year old. I mean, I'm 47, so 48 feels REALLY young to me. Aren't we basically 16? Sixteen is way too young to die. So is 48.

There was so much I wanted to say during her memorial and yet...I didn't stand up and say anything. All of The Aunts spoke. (My grandma has 6 living daughters, since my teens my cousins and I have always called them The Aunts. The Aunts run the family.)

They talked about how loving Amy was right from the start, how much she loved babies, even when she was just a baby herself. They talked about her bright, sunny spirit, her love for her family, especially her two kids. They cried and made the rest of us cry.

Growing up, there were six of us kids that were separated by about nine years from oldest (Tanya) to youngest (Jason.) We were the offspring of four of The Aunts (there were more to come, but they were basically a half a generation behind the six of us.) We were always together, always finding trouble and backing each other when we did.

After the memorial, there was a dinner in the basement of the church. Fun fact, Tom and I got married in that church. It is a block away from the house I grew up in. The Ladies of the church provided a lot of the food for the dinner but The Aunts provided most of it. Even in grief, they take charge and manage everything. It's just who they are.

I was hugged a lot during that dinner. So many people offered their prayers for my continued treatments and healing. Quite a few reminded me that Amy would not want me to indulge in survivor's guilt. Some told me that my recovery was no longer just my recovery but also a tribute to Amy. No pressure, right? Some expressed surprise that I was at the service at all, saying I should avoid crowds and germs. I reminded them that I have two kids in public school, germs are a given. I also told anyone who said anything about it that the whole point of treatment is to keep living. I can't lock myself away and wait it out.

Tom and I talked quietly during the dinner. He informed me that when he dies, he wants to be cremated and then have his ashes spread during the following family reunion. He thought that would be a nice tribute. He also declared that he doesn't want any sort of service. He said it didn't make sense to him. I will remind him at a later date that services such as the one we were attending aren't so much for the dead as they are for the living. And I'll tell him that if his children want a service, I will have one for them. If it gives them comfort and a sense of closure, well, it's the least we can do for them.

This is all assuming that he dies before I do. That is obviously not a given.

I think it was my brother who told me not to feel guilty for continuing my fight against cancer and for living. He then turned to Tom and told him he shouldn't feel guilty for my health and for still having his wife in his life. Tom shook Jason's hand and said he wasn't feeling so bad about that as much as he was fighting his own guilt over his continued good health while I endure chemo and fight to regain my health.

This was the first I'd heard of Tom feeling guilty for being well while I battle cancer. I expressed my surprise over this and he shrugged, "Well, I am older than you are. I'm supposed to be the one who gets sick."

Yeah, it doesn't work that way but it was a very sweet sentiment.

It also proves my suspicion that it's harder for him to watch me go through all this than it is for me to actually go through it.

My prayer is that my cousin Amy is at peace, that she's celebrating in Heaven with my uncles, Grice (aka Smokey) and Keith. She loved a good party and I pray they're up there dancing with the angels.

Tuesday, February 6, 2018

Toothless Wonder

Olivia has lost three teeth in the last three or so weeks. The first one was one that was loose for all of a day and a half. She ripped that one out while at school.

The second one was loose FOREVER, so long, in fact, that the adult tooth is completely through. It had come in behind the baby tooth. It drove me nuts for months, but didn't bother Liv at all.

This last tooth, the one she yanked out this evening, I didn't even realize was loose. She's been acting weird about chewing on the left side of her mouth for a week or so but she always told me it was her inner cheek that was bothering her, that she'd bitten it and it hurt. She is a lying liar who lies.

This evening we sat on the couch together to wind down before going to bed and she opened her hand for me. Clenched in her fist was a tooth incased in a silver crown.

I asked her if it had just come out. She nodded. She showed me the place the tooth had previously been in her mouth. The adult tooth is right there, almost even with the surface of her gums. Ick.

I asked her if that tooth had been bothering her for the past week and she'd just said it was her cheek so I wouldn't try and wiggle the tooth for her (I'm guilty of that, more on that in the next couple of paragraphs.) She nodded. Stinker.

There is a fourth tooth that needs to come out. It's on the top right, just above the one that had the permanent tooth emerge behind the baby tooth. This one is lose too and...the permanent tooth is also already through. This time, the tooth came in ABOVE the baby tooth. She looks vaguely vampiric. It's kind of creepy.

Each night, after I brush her teeth, I close the bathroom door and make her let me wiggle, push and kind of twist that baby tooth. I tell her we close the door so no one can hear her scream.

Yes, I'm sadistic. But wait, no. I never actually make her scream. I just say that because she's cute when she says, all outraged, "Mom!"

But I do try and work that tooth for her. She seems perfectly happy to have two teeth where there should be only one.

It shouldn't be long before she's managed to rid herself of all the late moving baby teeth and she joins the world of orthodontia. I hope so anyway. I'd rather not spend another $800 to the oral surgeon to do what I can do behind a closed bathroom door.

Monday, February 5, 2018

No Words - Or Maybe All the Words

Before I started chemo but after my diagnosis and surgery to remove my tumor, my cousin, who is just a year old than I am, was hospitalized. After a week in the hospital, she was released with a diagnosis of cancer. But they weren't sure what her primary cancer was.

The details aren't mine to share but the grief is.

She died on Saturday after months of treatments, hospitalizations, suffering and fighting. Her doctor says she probably had this cancer, whatever type it was, for more than two years.

By the time she died, the tumor on her neck was pushing into her windpipe, she couldn't breathe, she couldn't eat, she couldn't sleep and yet, she couldn't wake up.

I know my family isn't all the different from other families in that my mom and her siblings raised their kids more like siblings than cousins. We spent summers together, the six of us. My mom and three of her sisters all lived within two blocks of each other and we kids were sent outside at 9am and expected back in for dinner around 6. We were always together. Sometimes it was all six of us, sometimes, we'd separate into two groups of three, separated by gender.

I don't know where I'm going with this.

Maybe I just need to mark the day, write a reminder of all that she meant to all of us. Amy has two kids, Truman and Hannah. They're both grown now, but you never don't need your mom. My heart is broken for them.

This all brings the fact that cancer kills to the forefront of my brain. I know we caught mine early and I don't want to make Amy's diagnosis and death about me. But isn't that what we do? We make everything about us. It's all about our perspective, how we handle things as they happen. She's the closest person I've ever lost. I know how lucky that makes me. But acknowledging that luck doesn't make losing her any less sucky. I guess I'll take Julie's advice and wallow in the yuckiness of it all for a while. That's often how grief works.

She will be missed. She is loved. Her memory lives on and will continue to do so.

I will continue to fight my own battle because how can I not?

I pray she's at peace, she's resting, she's no longer fighting and suffering. I pray for her mom, her children, her boyfriend, who loved her so. I pray for all of us every single day.

Thursday, February 1, 2018

Quiet

I've been quiet the past week or so...

Last week was tough physically. I felt pretty awful on Friday, my feet are numb off and on, which is annoying and worrying but not really that big a deal. By Sunday, I felt good enough to make potato soup and chili and on Monday I baked some cookies. So I'm trying here. I'm trying to contribute to my family and our household. But sometimes, I just want to sit in the recliner and snooze.

This week has been low emotionally. I feel like all my emotions are very close to the surface, as if I'm constantly near tears.

I haven't cried much since my diagnosis. I mean, why? What's the point? Sure, it's like a release of tension but in the end, we just have to keep on keeping on. But this week...I'm just kind of sad.

And yet I know I really don't have any reason to be. I'm so, so lucky. I know this. I'm fine. I'm getting through it all. I have an amazing support system and yet...there are tears in my eyes as I watch Maury tell some dude he is NOT the father.

It's so stupid.

I met a lovely woman today at my gynecologist. She was diagnosed with stage three breast cancer about a year ago. She's still got her port and going for treatments (hormone blockers) very three weeks. She had a double mastectomy and there was cancer in her lymph nodes. She was so kind and lovely to me. She was so sympathetic to what I'm going through and yet she went through and is STILL going through so much more. I felt like such a fraud for accepting her kindness and her support.

I should have been supporting her.

Here I am...I was diagnosed with a single tumor in just my left breast. It was removed and there was no other cancer anywhere else. My cancer was stage one. I am currently cancer free and over half way through my treatments. I'm not facing breast reconstructive surgery because I just had a lumpectomy. My eyebrows didn't fall out. I never threw up from the chemo.

I'm fine! Why don't I feel fine today?

Tomorrow will be better. It always is.

Thursday, January 25, 2018

Life with 5p- Lately

How about something not related to chemo or cancer?

Life with 5p- syndrome...lately. Olivia turned eleven back in November. She's in fourth grade, mostly integrated into the mainstream classroom but pulled out for math because, duh, math is hard.

She's sleeping great these days. I can take her to her room, tuck her into her bed, kiss her goodnight, tell her I'll be back in a few minutes, leave the room and come back twenty minutes later to find her sound asleep. Can you even imagine? A couple of years ago I couldn't have. And here we are.

At the beginning of the year, she was coming home with 45 minutes to an hour's worth of homework every single school night. Today, we spend ten minutes on her homework. That included spelling and math. The difference is amazing.

She started getting pulled out for math back in September (right around the time of my surgery) and it's been amazing. Her new teacher is even trying different strategies to help her learn multiplication and division. At our last face to face meeting, though, we agreed that as long as Liv can master addition and subtraction to the point of being able to tell if someone is giving her the correct change, we'll be happy with her math education. We all know that we ALL walk around with calculators these days, so is multiplication/division really THAT important? Okay, maybe so, but perhaps not so much for Olivia.

Behaviors...well, she can have some attention issues. A lot of her reports from school are that she starts slow but builds up her endurance and almost always finishes her tasks by the end of the day. She has some stimming behaviors that we just deal with. She has to hope before she can sit down. She flaps her hands when she's nervous or when she's switching tasks.

Maybe the biggest thing is that she's a little (a lot!!) spoiled. She loves being the baby of the family. She's very indulged and, well, a little (probably a lot) lazy. She CAN totally feed herself and yet, she doesn't want to. Her hands work perfectly well, she can write quite legibly these days. But she'd much prefer to have someone shovel food into her mouth than to do it herself.

She's the baby of the family, she's quite charming and it's easy to baby her. And yet, I often remind her, she's ELEVEN. She has hands that work. She can lift a spoon to her own mouth. She fights this so much. It's an ongoing battle. She never reached that two year old stage where she insists, "I can do it myself."

She does like to remind us often, though, that she's not a baby. I like to retort, "Prove it, pick up the spoon and feed yourself that cereal."

She always just rolls her eyes and says with disgust, "Mom!"

What are you going to do?

Tuesday, January 23, 2018

Symptom Spotting

One of the biggest stressors of chemo (you know, other than the fact that they're pumping poison directly into your veins) is the list of possible side effects.

Here's a list of the possible side effects of Taxol:
•Low blood counts. ...
•Hair loss.
•Arthralgias and myalgias, pain in the joints and muscles. ...
•Peripheral neuropathy (numbness and tingling of the hands and feet)
•Nausea and vomiting (usually mild)
•Diarrhea.
•Mouth sores.

Each week, especially after the first couple of days after treatment (so, like, Wednesday, Thursday, and yes, even Friday) I sit around and obsess about every single thing I feel.

Just a few days ago, I started getting a little numbness in my toes. It was sporadic, didn't last long but still...is it the start of peripheral neuropathy? Will is spread, start lasting longer, become irreversible? Should I call the cancer center the instant I first feel it? (Don't worry, I mentioned it today to the nurse practitioner. She said to keep an eye on it, maybe note when it happens in a journal and mention it to the doctor if it seems to be getting worse, lasting longer.)

But sometimes, maybe I've just sat in the recliner too long and that's why my foot is asleep. Last night, I slept on my hand and woke up with it completely numb. I knew, logically, it had nothing to do with the chemo, but I wondered if maybe I'd made it possible for neuropathy to take effect because I'd sleep on my hand. Of course the feeling came back like it always does when you get your chunkalunk body off your poor hand.

Today when I got home from chemo, my stomach hurt. Was it because of the chemo or did the chicken BLT I had at Cracker Barrel just not agree with me? Who knows? The end result of that stomach ache was not pretty, but again, who knows what actually, REALLY caused it? After using the bathroom (twice) I felt better.

My hair...Olivia still adores my bald head. She has asked more times than I can count why my head it white. I answer her each time with the fact that last summer, I had hair. This winter, my head isn't seeing the sun thanks to the hats I wear. That's why my head is white.

We buzzed my hair back in October. There is still quite a bit of stubble there but it shows no signs of actual growth. It's still about a quarter of an inch. So, no more real loss but definitely no growth. I didn't expect it to grow back but I still watch for it. Six more week of chemo, then the hair watch will truly begin.

Mouth sores...well, let's see. I don't have any actual open wounds but my tongue hurts. There's a spot on the back, bottom left side of my tongue that pretty much hurts all the time. It's gross. My mouth is in a constant state of dryness. I have to drink water all the time to keep it moist (ick) and that just makes me pee every half hour. I brush my teeth several times a day and use Act rinse at the advice of my dentist to protect my teeth from the dry-mouth. I'm so tired of this one and I'm pretty sure it's all chemo related. There really aren't a lot of other reasons for my mouth to be REALLY dry.

Oh yes, wait, there's one that's not actually mentioned in the above list. Bloody snot. So flipping gross.

I wake up each morning with a very stuffy nose. But I can blow the stuffiness away. The ick factor is that the snot is bloody. Then, after I get the snot out, I have to keep blowing because (look away, WARNING, GROSS DETAILS AHEAD...YOU HAVE BEEN WARNED)there are basically what looks like bloody boogers that need to come out.

I've mentioned this to two of my chemo nurses and both of them recommend a humidifier in my room. Okay, fine. I'll get a stupid filter for my stupid humidifier this coming weekend and see if it happens. Never fear, I WILL update you on the state of my bloody snot. I'm most excellent at over-sharing, if you haven't noticed.

Then we have the normal aches and pains. My neck often hurts. Is it because of the chemo or because I played three hours of Candy Crush and Pet Rescue while lying in bed last night? Is it because the chemo causes aches and pains or because I'm not moving enough, getting exercise and sunshine instead of settling down on the recliner with three blankets on my and watching season three of Black Mirror?

I'm also cold most of the time. Is this a chemo thing or just the fact that's January and January is a stupid month (other than being Alyssa's and Mitch's birth month, which makes it an AWESOME month) except it actually kind of sucks because it's so damned cold outside and gray and the snow that was once so glitter and pretty is now just brown and gross.

And there we have it...all the symptoms I'm experiencing that could possibly be chemo related but also have other, perfectly ordinary, non-chemo possible explanations.


It's enough to drive the sanest person crazy.

Monday, January 22, 2018

One Month

Last Friday was the one month anniversary of me starting full-time medical leave. How has it been?

Yeah. I've rested a lot. Which basically means I'm super lazy. We already knew that. I've confessed to it over the years. I am not good with leisure time because I get nothing done. If I'm busy, I know I have to do what needs to be done now because it won't get done later. But if I have nothing to do, nothing gets done.

I didn't have a job the first semester of my freshman year. I got Bs and Cs that semester. I just couldn't get the studying and homework done. I was horrible. I had all the time in the world so I didn't do anything, ever.

The second semester of my freshman year, I got a part time job at the cafeteria of my residence hall. My grades came up, I wasn't nearly a frazzled trying to find time to study and do homework. I was busy, so everything fell into place. Weird? Probably not.

Honestly, I think we're all sort of weird but no one is probably as weird as they think they are.

I have made a tiny bit of progress in the toy room. I've also cleaned out a box that was cluttering up the floor of our bedroom. I've taken three big bags of clothes to a donation drop box. I'm taking three bags of old, crappy, broken toys to the dumpster this afternoon after Liv gets home.

I've also gone to five chemo sessions, so there's always that.

I kind of like not working but I don't think it's good for me. I could get used to being slovenly but that's probably not something to aspire to.

Thursday, January 18, 2018

Week In, Week Out

I'm not doing well at this whole being home and still blogging thing, am I? Sorry about that. I think I get tired of talking about chemo and cancer and there's just so much sleeping (or not sleeping) to do.

On the topic of chemo, Taxol is definitely easier than the first stuff I was one. But the biggest side effect, for me, of the whole Taxol process is the steroid insomnia that kicks in on Tuesday night. This week, I slept not at all on Tuesday night. Literally, not at all. I laid in bed for maybe twenty minutes, read for bit, got up and cleaned some of the clutter in the toy room, read a little more, and just...didn't sleep.

I took a three hour nap yesterday (Wednesday) and plowed through the day.

It appears I'm much more of a morning person when morning just kind of happens without me sleeping. I was quite cheerful yesterday, without the annoying sound of the alarm waking me up than I was this morning after eight-ish hours of sleep and being woken by the alarm.

So far in the time I've been home, the girls have had not even one full week of school. I'm not sure how I feel about that. I mean, sure, it's great when they're around but then I feel a bit guilty about sleeping when they're here and awake. But I'm tired from both the chemo and the insomnia so I sleep and then feel bad and then don't sleep when they're sleeping and it's a vicious cycle.

I'm still playing the go-between for Tom and Alyssa. Ugh. Those two...

Alyssa turned fifteen last Sunday. We had a birthday party for her. Because she's now so busy with pep band, play practice, solo and ensemble sessions, we didn't have a slumber party for her. This was much to Tom's delight. He never enjoyed having six or seven girls over for the night. But Alyssa loved it so much and so it was a bit of a battle this year between them. I understand both side. She only has one birthday a year, she wants to celebrate it with her friends. She has a lot of friends and never wants any of them to feel left out.

He hates company, period. But having that many people in the house for that long really bothers him. I'm not a big fan of company and the older these friends get, the bigger they all get and it is a lot of people.

In the end, with Lyss's schedule, it made more sense to have an afternoon party (noon to six!) on Sunday. It worked. They didn't stay the night, they still had fun, there was a very clear end in sight for Tom. I'm not sure anyone was exactly happy with it but the compromise worked.

This morning there was a little more chaos as they fought of cereal. I know! It's so stupid. It was the case of the mixed cereal. Alyssa hates it when he mixes cereals. For example, we have Lucky Charms and Froot Loops. Tom has been known to put some of each into a bowl and expect the girls to eat them. Olivia does so without complaint. Alyssa declares it gross.

This morning she stood at the counter and tried to pick the Froot Loops out of her Lucky Charms. He told her if she did that, tomorrow she'd only get Froot Loops. She got mad, wondering why he'd make such a declaration. She prefers Lucky Charms to Froot Loops and honestly, if you're going to let your kid eat either one, what difference does it make which one she chooses? They're both laden with sugar and pretty much NOT nutritious, right? I think one of them (I won't name names) just likes to make declarations because he/she can and expects them to be followed.

It's frustrating.

Finally, trying to defuse the situation so she could just eat her stupid cereal. I said gently, "I wouldn't want to eat mixed cereal."

OMG.

Once I'd given my opinion, apparently, I'd taken sides and one of them was mad.

But, Alyssa was happy because she got her bowl of Lucky Charms only and that made even the snarky comments coming from the other side of the room worth it.

I don't know. I hate it when they do that.

I also kind of hate arbitrary rules made simply because someone feels they CAN make rules. So there's that.

Yep, it feels like each week is just blending into the next. I start to feel really good on Sundays, knowing that Tuesday is right around the corner.

I probably need to find a job sooner than later.

Monday, January 8, 2018

Chemo Chronicals - Take...I Don't Even Know

Last week I had my third infusion of Taxol. The first two weeks were okay. I was tired from the Benadryl both times and slept for about two hours after getting home from the chemo appointment.

I think I've had a bit of steroid insomnia on the first couple of nights after receiving Taxol. I receive a steroid and Benadryl to help stave off allergic reactions to the Taxol. By Wednesday evenings (after receiving Taxol on Tuesday) I get a weird red spot on my right cheek. I take a dose of Benadryl and it goes away. So...yeah.

My intestines seem to tolerate the Taxol better than they did the cocktail of chemo from the first eight weeks. That's my polite way of saying my poop is more normal these days. Not so much constipation followed by diarrhea. That's always a plus.

This week it's taken much longer to bounce back. I've been very tired and achy for days and days. Poor me.

I cried yesterday, much to Tom's dismay. He didn't know what to do. I told him to just let me cry and I'd be okay. He held me for quite a while, which was sweet. I'm not even really sure what brought on the tears. There's a bit of stress in our house as Alyssa's birthday looms and she wants a big slumber party and Tom is adamantly against it. I'm feeling very much torn between them. And I don't like that. I don't want to be in the middle. But I understand both sides and that makes them both come to me with their frustrations with each other.

Anyway, the tears subsided and I was fine.

My mouth hurts this time. It feels like there are a couple of sore spots. I've rinsed with warm salt water (suggested by several of the books/pamphlets given to me by my chemo nurses.) I'm not sure it's helped but I know it hasn't hurt. It's just so weird to have my stupid tongue hurt.

I got the call from the nurse today that my labs look good so we're on for chemo tomorrow. Wheee!!

I feel lucky that I get to recuperate at home. These weird aches and pains and bouts of sadness crop up with little warning and so being at home where I can snuggle under a blanket when I need to do so helps so much.

Each day is one day closer to being done. I'm holding on to that. I didn't get much done around the house this week but...well, I'm getting out of bed every day. I count that as a positive.

Wednesday, January 3, 2018

No Resolutions

There will be no resolutions for 2018, at least not for me. Tom's resolved to eat less bread. I know. Whatever.

I've decided that getting through chemotherapy, finding a new job, organizing my house at least a little, well, that's enough. And I'm even making resolutions to do those things. I can't resolve to get through chemo. It'll just happen because, well, it has to. I also have to find a new job come March/April, so there's that.

The organization of the house...since I'm home with time on my hands, well, it'll happen, though probably slowly. Wait, maybe not!! I've already organized the coat tree/backpack/shoe drop area by the garage door. I packed about seventy-two pairs of Alyssa's shoes and one pair of Olivia's in a basket and deposited them in the girls' rooms this morning. I also took all the extra coats (three for Alyssa) and jackets (thirty-six for Olivia) to their respective rooms as well. Why do two children have SO MANY pairs of shoes (Alyssa!) and jackets (Olivia!) It's winter. I left both of their boots by the back door as well as left plenty of room for the coats they currently have with them at school to be hung on the tree. Now that the extra coats and jackets are off the tree, it looks much more like a tree bare of it's leaves in the winter. Ha, look me and my simile.

But the whole act of making resolutions this year feels like too much. Give up caffeine? Are you insane? Maybe when chemo is done, sure. But right now? No freaking way.

Watch what I eat? Why? I get scolded for losing a single pound from week to week by the nurses at chemo. There will be no watching calories or junk food, thank you very much. On the bright side...(I guess) I was exactly the same weight this week as I was last week. In my opinion, that same weight is TOO MUCH weight but whatever. I'll deal with that later too.

I guess I could resolve to take more baths. I do love a hot bath. But I'm currently taking probably four to five baths a week (and showering most days, so yeah, bathing twice a day quite often) so that's just silly.

I could try and be nicer to my husband and children but when you have a handy excuse as chemo brain, well, who am I not to take advantage of that? Not a saint, that's who.

So here's to 2018. The year without resolutions.