Today I asked a bit more about an updated timeline. Mostly because I wanted to know if I was going to have to meet my max and deductible next year, too. The answer (of course) is, yes.
September 12 will be my last round of this chemo-combo. One week after, I’ll have a CT scan (this will tell us that if the cancer in my lymph nodes has shrunk or not) Assuming that is all ok, one week after CT (still sticking to every other week) I’ll have my next chemo drug. I’ll do this 4 times total, during 8 weeks. Approximately 3 weeks after completing chemo, I’ll have a double mastectomy. Approximately 3 weeks after that (holy crap that’s a lot of counting) I’ll start radiation. That puts us almost exactly at Christmas. Radiation will be 4-6 weeks, Monday-Friday. THEN, we can talk about reconstruction somewhere in late February-ish.
Today the littles came to visit and see how easy this is:
This will make it so much easier to explain things to them and to ease Ailee’s mind a bit. It probably helped that Brad bought them a Twix bar, cheese cubes and grapes 🙄.
I’ve had a lot of questions regarding “accessing” my port. I took a video. BE WARNED. If you are squeamish, DO NOT CONTINUE! If you are not and would like to continue, turn up your volume. The noises are sooooooo cooooool.
And one more. I’m not sure how long this one will stick around.
Ugh. For the first time so far, I’m negatively anticipating round 3. I’ve been living my life in two-week cycles (very compairable to a pregnancy but without the human in the end). At this point, I know what to expect the days following and how I’ll respond. I understand that I’ll have a few days where I really feel like crap, and I’m just not excited for it.
Did you know that for three days, My urine is radioactive? My kids and husband have to use a different bathroom than me. I have to wash all of my clothes separately and close a stall at work so no one else uses it. It’s not too big of a deal, but it’s hard to have the kids remember not to go potty in my bathroom, and at the end of three days after that bathroom is all cleaned out again having them say things like, “no, mom! I don’t want to use that bathroom! You went in there!”
The most bizarre thing happened this weekend. We were camping in Garfield, MN. I was chilling in the camper with a puzzle (I usually avoid public gatherings) while Brad and the kids went to play bingo (bit also, I NEEDED to finish this puzzle!) when I get a text from Brad: “Bonnie is here”. OK, I only know one Bonni and it’s not Bonnie. So naturally (somewhat sarcastically? (cough, cough)), my response was, “Bonnie who?”
We ended up inviting them back later for s’mores, and with a break in the clouds, we and had such a great time ❤️
Well here it is. The culmination of everything parenting has brought me to prepare her for. Cancer has just made it a little bit more difficult.
I debated wearing a wig today. For my own reasons and for her. To save us all from the questioning looks and sympthathetic stares. In the end I just brought one with. Hauling in boxes and up stairs is bound to make me sweaty and an even more itchy situation so screw it. No wig.
The long car drive made me sick enough to give breakfast up to the rest stop bathroom. I’m also having a hard time with headaches everyday, and teary nights with the impending move don’t make that any better, but I have very little relief from it. Riding in the truck is the worst, but I’m glad to be able to make the trip.
Duluth is one of the most beautiful places in the state, and it’s about to become home for one of my babies.
This is what so confusing to me. I’m starting to feel almost normal (aside from my reflection)! I’m currently sitting on a park bench and reflecting on this incredible morning and how much energy I have. I’ve taken my earbuds out to listen to the birds sing and the mosquitoes whizz by (they don’t find me as tasty anymore).
Day four after my second round of chemo is the worst day so far. From the tippy tips on the toes of my feet to the very tippy top of my hair follicles, there is a never ending amount of nerve pain. Everywhere. It’s likely due to the injection that I have 27 hours after chemotherapy (remember the completely obscure beacon of blinking light on my tummy?!) that boosts my white blood cell count.
It’s called Neulasta Onpro, and it’s an on body device that automatically injects when it supposed to rather than having me make another trip to the clinic to have another shot. It’s quite amazing, and it has worked both times so far at just the right time. This time, however, the side effects are way more than I had anticipated.
I left work early today. Only by an hour, but I don’t think I could’ve made it a minute more. I knew I’d be ultra tired, but I wasn’t expecting much more for side effects from the chemotherapy. The past two days I’ve come home from work and just laid in bed going to sleep incredibly early. Like crawling in somewhere around six falling asleep whenever I can.
This whole fighting cancer thing is a lot of work.
I cried today for the first time in a few days, which says a lot. I think I’m getting used to this new lifestyle, this new reflection and the daily changes.
Today I’m thankful for wigs, neighbors and a prescription for Hydrocodone.
Sitting through the process of chemotherapy is So. Damn. Boring. I flew solo today since I was coming from work (and because why would I want another person to have to sit through all of that!), so I got a good bit of trashy television that I don’t seem to have time for anymore, and caught up on deleting photos from my phone (I’m pretty sure I had a billion of myself with hair. Selfies anyone?)
Today I feel ok! My hair doesn’t hurt, I’m not that sick, and the poison hasn’t really started to make me feel too terrible. I have a bad headache, but I got a good walk and a good bike ride in this evening. I’m not sure how well I’ll sleep tonight with the steroids on board, but I’ll have more tomorrow and Wednesday….. so we will see what Thursday brings.
I got an amazing gift in the mail today from a woman who is surely becoming a lifelong friend. A portrait of my family. She is a survivor of this disease, just like me. Check out the photos she created:
She also gave me the beautiful scarf that I wore today to chemo ❤️ I need a little practice tying them, but I’ve got time.
I woke up this morning with a ton of pain on my scalp. Just on one side. It was the strange kind of pain and for any people that have had long hair or sport a bun, you might relate. My head felt a whole lot like I’ve had my hair in a tight ponytail for a week and then took it out. I showered and conditioned my hair about five times hoping to soften it up, but nothing was helping. During the shampoo and conditioning process, I got another few handfuls of hair. It was time.
I went to the grocery store for the last time with hair, and when I got back I told the kids that today was the day. Ailee didn’t want today to be the day, but she bravely looked me in the eye and she said, “OK. I’m ready”. I had told them that they each had a very important job, and they were anxious to learn their part. My neighbor had a pair of clippers, so we set up shop in the garage. Brad was taking a shower, but found us just as we were beginning. I think I had hoped to do it before he was out, so that he wouldn’t of had memory of the process.
About halfway through Ailee decided she didn’t want it to happen, but as soon as she got to help she seemed to be fine. Beckham and his friend thought it was awesome and jumped at the chance to help. Brad, with a slight tremble, carefully helped them complete the job. I don’t think I remember in my vows speaking of times it like this. For real, this had to of been one of the most difficult things I’ve asked him to do.
Somehow I feel OK. I don’t know if it’s because I got to choose when my hair was gone? Or maybe it’s just not gonna hit me until I have to deal with the public aspect of not having hair? It could just be the endless amounts of support that I have felt throughout this entire ordeal.
This week we have a couple of big things coming up. My next round of chemotherapy is tomorrow (I’ll work first) and Kayla’s birthday is on Tuesday (we celebrated tonight since we weren’t sure how I would feel on Tuesday).
We’ve also had some storm damage to our house and roof, and our insurance company finally approved the claim so we have to choose new colors for the roof and potentially the siding if we can’t find a match. HOWEVER, I’m a little nervous about picking out colors right now, but I can’t imagine if we had to cover the expenses out of pocket for the damage.
I’m looking forward to being done tomorrow and trying to figure out my pattern after chemo. Will I feel good after a few days like I did last time? I’ll have plenty of time to watch YouTube videos on how to tie scarves though.
No pictures of me this time. Maybe after I get used to my reflection…
I never go swimming. Ever. I honestly think out of 50 trips to the pool or the beach, you could see me in the water maybe 5 times. Even then, you probably won’t see me as that’s how little I am in the water. The reasons as to why aren’t fun to read or talk about but it just comes down to not wanting to be in a swimsuit.
Today was beach day while camping as we normally try to spend at least one day in or on the water. I usually spend my time intermittently reading (or writing) while watching the kids swim. This time, between writing and watching Ailee search for shells, I made a conscious effort to observe how many looks I got. So I can gain an understanding of normal before I lose my hair. Some sort of a deal I made to myself so that I’m prepared.
Just after my port was placed, I knew people were curious about the fresh incisions on my neck and chest, and I had a heightened sense that I was being viewed as a specimen. This feeling that labeled me maimed in some sort of way. No longer pretty but now a woman with something wrong with her. I’m pretty sure this feeling comes with also wanting to be that overachiever, even in the ways that I can’t come close to controlling.
Well, shit. If there was any doubt about losing my hair, it was confirmed today. Two weeks and two days after I began chemo. I can no longer run my fingers through my hair without a good 10 strands coming out. Or sit in a chair with some falling onto my dress. I think I was holding out all hope that it wouldn’t happen to me, but it is. I thought I’d be the exception. The medical anomaly that would prove to be awesome. Nope. Not so much.
This will be my physical label. The one that will garner all sorts of looks, even with wearing hats, scarves and whatever else I can cover with. It will be my scarlet letter letting people that I don’t even know see that I have cancer.
I don’t want to be that person. I don’t want to have cancer. I don’t want to hear my kids tell me that they miss my long hair. I don’t want sympathy. I don’t want my husband to remember me bald. Or my kids. Or my parents. Damn it, I don’t want this.
It seems I get another weekend with hair, and another weekend where I feel pretty good. It’s been two weeks yesterday since my first chemo treatment. Monday will be my next.
We’re headed out camping this weekend so I’m hopeful that my hair won’t start falling out in handfuls (until afterwards at least!). Although, I think my long-haired cat and myself have the same length of hair at the moment, so I might just be in denial in thinking it’s cat hair all over the place (FML). My head is still incredibly itchy, almost distractingly so, which is a sign that hair loss is impending.
I’m finding a lot more aches and pains in my body, and I’m definitely not healing like I did a couple of months ago. What seems like small scratches or scrapes tend not to heal at all. Simple things like crossing my legs while I’m sitting at my desk or starting out on walks too quickly make my legs ache.
Kayla had orientation at college with aunt Chris this week. Originally Chris was going to take her since I was scheduled to have surgery on August 4 for my double mastectomy. Obviously, that didn’t work out so well, but Chris was still wanting to take Kayla and I’ve lost quite a bit of energy and self-esteem in those types of settings, so I welcomed the invitation. Frankly, I was afraid I wouldn’t have hair by then, and didn’t want to embarrass my teenager. I also get pretty sore sitting in the car for too long. Even on my car ride to work.
But college orientation? First of all, when the hell did this happen? Secondly, why couldn’t cancer just wait a few months so I could focus my time and energy on Kayla? I’m scared that I’ll forever regret not having that time with her. Tuesday she turns 18. The following week she moves away to college. I should probably pull my shit together and lighten up on feeling sorry for myself. These next two weeks will pass by in a blink.
Things that made me smile:
Bracelets from my Aunt Nancy. She always keeps it classy.
A Superman t-shirt from my neighbor. I think I’ll stand with St. Cloud Superman for a bit of competition. 🙂
Fitbit Blaze that tells me when my appointments are. Even when my doctor changes them.
At some point as a young mom I realized that the people that I looked up to the most were my mom and my dad. How could I not? They got me this far. I’m still alive, aren’t I?
I grew up in a home where we didn’t always give squeezy hugs, but my mom or dad would tuck me in every night with the same three words spoken from the doorway into my room, “night, loveyou, seeyouinthemorning.” I don’t think I ever questioned their unwavering love. Even when my dad would say, “do not tell your mother.” Or Mom would get so mad she would grit her teeth and say, “you are in big trouble.” They still loved me.
Those two people were the hardest two people to tell. I had my husband call them to break the news that their daughter had cancer. I couldn’t bear the thought of disappointing them.
If someone were to have asked me six months ago if I felt successful, I would’ve said yes. I have a great life. In fact, I didn’t even know how great it was until just a short while ago. When I saw all the people on my friends list reach out to me and surround me with So. Much. Love.
Why does this diagnosis make me feel like I’m disappointing them all? Why am I am embarrassed to pick up the kids from vacation Bible school? Why am I ashamed that I have to miss work for treatment? Why do I worry that after treatment and I have to take a day off due to the side effects?
Why does all of this make me feel like I’m disappointing someone? I don’t even know. Is it my kids? My husband?? Probably.
Tonight, I have to bury this feeling just a little bit further than I’ve had to most of the other nights.
“i’m good enough. I’m smart enough. And gosh darn it, people like me.”
-Pat, Saturday night live.
And if you graduated in the class of 1998 from Dassel-Cokato high school?