Getting ready for surgery

Going through a lot of emotions in the last few weeks. I didn't really feel ready to write about it because it was a bit overwhelming at times.

Over Christmas break, I had a significant increase in the frequency and intensity of my coronary vasospasms (side effect I get from the 5fu) which resulted in me doing a lot of sitting for a few days and then following up with the cardiologist at Roswell. He increased my amlodipine. Calcium channel blockers help open up the arteries. He also prescriped me nitroglycerin pills if the vasospasms last longer than normal or are more intense. Coronary vasospasms can lead to heart attacks but it's not likely and my arteries and veins were very clear last year when they did the heart MRI so the doctor thinks it's very unlikely for me but better safe than sorry.

I've had an asthma flare-up since December that just won't go away. I did do a 9 day course of steroids but it's still going. Then, the first week of January I had CT scan and a pre-op with the thoracic surgeon. I've had additional tests since including breathing tests, bloodwork and typing, a 6 minute walk, a PET scan and this week I have a lung diffusion test and a follow-up with the thoracic surgeon. 

Mostly though, I'm just anxious about the surgery. My surgery will be on 2/6. I've met with the doctors and anesthesiologist as well as people to talk about the clinical trial. I'm a ball of nerves right now. The anesthesiologist was very nice and said that while this is a big deal for me, it's just another Tuesday for the team doing my surgery. I've heard nothing but good things about the surgeons and I know they've got this. I just have trouble letting go of control. 

I also don't really know what to expect and how I will feel after and that has me anxious. I'll have to ask more questions at my next appointment but in reality, everyone responds differently so they can't tell me for sure how I'll do or feel or recover after. 

I just need to keep reminding myself that it's all going to be okay and I can handle anything they can throw at me. I'll be ok and most importantly, the tumor will be gone. 😁

Round 6 of 6 Pre-surgery

Well, my final round pre-surgery is here. I had infusion and was connected on Tuesday. I should be getting disconnected in a little bit. Today I'm tired and the taste in my mouth is not fun but otherwise, I'm ok.

I'm starting to get a little nervous about the next step. My first c-section was not planned and happened fast and with the second, I had already had one. And I was awake for both. I was awake for lasik and the port placement and the biopsy (which was NOT fun at all) and just barely out for my colonoscopy. 

Speaking of all that, now that this round of chemo is done, I get back to scanning. I'll be getting a pelvic MRI tomorrow morning. So I get to wake up at 6 am tomorrow to give myself an enema prior to the MRI. In the last 18 months, I've had to give myself 3 fleet enemas (for the MRI's) and at least 4 warm water enemas for the flex sig checkups (think mini-colonoscopy and you're awake for it). And there will be many more in my future, I'm sure. Honestly, they aren't horrible. Not fun, but tolerable.

The MRI's take about 45 minutes and I'm so claustrophobic so it's not fun. I have a Xanax to take but when I've had to drive myself and not take one, I spend the whole time trying so hard to meditate and to not try to climb out of the machine. My brain goes crazy. It helps to have them put a washcloth over my eyes before I go into the machine. I get cold in the machine if my arms are out but when my brain is freaking out, I have really bad hot flashes while in the machine so I have to go with cold so I don't move.

It feels very weird to post all of this. I still hold some back but I'm trying hard to be open and honest and I'll slowly get to the things I still keep to myself.

The most important thing is that I really make a point of not focusing on the negative. I focus on the plan and where I'm at in it. Counting calms my brain during stress. Yeah. I'm weird like that. When I had radiation, I counted down the days. When I was in the machine, I counted how long each rotation of the machine took. I'm counting down my chemo treatments now and I'm 1/3 of the way through my plan. Next step, surgery.

Sorry if these get a little jumbled/all over the place. I'm already ADHD and add in chemo brain and I'm all over the place. Well, my brain is all over right now and tired and doesn't want to focus and I've written enough for today so I'm out of here. 

Round 5 of 6 Pre-surgery

I was sick this past week and a half and was nervous I wasn't going to be able to get this round this week. I was also nervous about my absolute neutrophils since they had been so low the last round. As much as I do not enjoy chemo, not getting it makes me worry that I won't get rid of all of the cancer in my body and that it will keep coming back.

Not gonna lie. I had some dark thoughts. In the interest of being honest and vulnerable, this is what I wrote in one of my notes over the weekend when I thought I may not be able to get chemo on Monday. 

*****

"I’m afraid I’m going to die. I’m afraid that if I don’t stay on track with the treatments that the cancer will will. I feel like my body is betraying me. I’m trying very hard to stay on track with my treatments and even when I feel good, my bloodwork says I’m not doing as well as I need to be to continue forward on this path.

I’m afraid there are more cancer cells floating around and that we wont get enough chemo in me to kill them and they will take hold.

I am hoping so hard that any loose cells that could take hold are destroyed and all that is left is what’s left of the lung tumor that will be removed. 

I’m trying to rationalize my way around the tumor to say it should have shown up already if I had more floating around but I know that’s not true. It could still be so small and floating around. The tiniest dot would have millions of cancer cells. 

I’m sad. And am slipping lower. I’ll feel  better when I am getting chemo again. That’s so weird to say but it’s true. Chemo sucks but it’s keeping me alive by killing cancer cells."

*****

It's was hard to write as it is to read. I try very hard to avoid the negative but it's very real. I have stage 4 rectal cancer. The cancer could just end up being too much for my body and I could lose the battle. It's a very real possibility.

But I'm not going to. I'm digging my heals in and I'm staying. The cancer is going to lose, not me. I refuse to lose. 

It's so important to remember to feel the good AND the bad. Staying positive is so important in the whole process and it can be hard some days but you can't stay positive by just avoiding the negative. That is just as real and just as important to feel. I don't need to dwell on it but I do need to let myself feel everything that comes through me. It helps me appreciate the good.

I'm still so grateful for everything I have. Amazing husband and kids. Wonderful family and friends. Doctors that care about me and are invested in getting me healthy. A community of people who care about me and support me. All the wonderful staff at the Roswell main campus, the Scott Bieler Amherst Center Infusion Center, the nurses that hook me up and disconnect me with McAuley Seton. I'm fully supported with friendly faces the whole way.

All of those people are the reason I'm going to survive and thrive. I've got this.

Round 4 of 6 Pre-surgery

I didn't post after my last round. But round 3 went decently. As I've described it, the first 4-5 days of chemo, don't ask me how I feel because I'll tell you that I hate chemo, this sucks and I don't want to do it any more. But then I have a good week where it really is ok and it gives me time to recover before the next round and be ready to do it again.

Last year with the full-strength Oxaliplatin, some rounds I only had a couple days where my symptoms were really low and by the4th round, the pins and needles and trouble swallowing never fully disappeared. Actually, after round 4 last year, I was so wrecked I asked to be done after round for or to at least have for a week off over Christmas to get me through rounds 5 & 6 and they ended up letting me have it and when I went back the following week, my absolute neutrophil count was too low for chemo so I had to wait another week and ended up having 2 weeks off between rounds 4 and 5. Then we lowered my dosage of Oxaliplatin for rounds 5 & 6 and dropped it entirely for rounds 7 & 8.

As much as I feel better than I did last year, my body never truly had enough time to recover from last year and my neutrophils weren't great when I started chemo and quite a bit of my other bloodwork is either high or low. When I had bloodwork done and went for a follow-up with my oncologist on Thursday last week, my neutrophils were at 1. Generally that is the cut-off for chemo but luckily I still had between Thursday and yesterday and we were pretty sure they would go up at least a little before chemo and they did. 

Unfortunately, because they are so low and we really don't want to miss any weeks at all until I make it through all 6 cycles, they had to adjust my medication because my levels drop between rounds. So, they added on fluids prior to chemo because I'm having trouble staying hydrated. They also lowered my Oxaliplatin and dropped my 12 minute bolus of Flourouracil. Hopefully that helps me recover enough between cycles that I don't need to miss any cycles. 

I'm disappointed. I'm disappointed that we had to lower my meds after starting lower this year. I'm disappointed that my body is struggling with the treatment. I wish I could do something to fix it but it's out of my hands. I just have to move around and get some exercise but otherwise rest, eat healthy, take my vitamins, stay hydrated and positive and hope that it's enough. I'm doing my best to stay positive and support my body through this so that I'm on the winning side of this battle.

On the bright side, my symptoms are way lower and more tolerable and while they are still there, I am feeling ok when I would normally be really pretty rough today. We will see how the next few days go but I'm grateful that I'm not in too rough of shape since it will be a busy week with Thanksgiving and visiting family.

I hope that everyone has time with people that are important to them and has things they are grateful for this Thanksgiving season. 

Protecting others from the negatives of my diagnosis

So, I see an amazing counselor at Roswell who has been absolutely wonderful throughout everything. During our session today, I realized that my balancing act of always countering the bad with good was about protecting everyone around me so they didn't worry as much. That doesn't mean that the positives aren't true. It just means that I'm intentionally using them to make other people feel better about my cancer, my treatments and my symptoms. I don't want people around me to feel bad because of me. 

I'm totally going to continue doing this but I'm going to try to do it less with people in my inner circle. On here, however, I'm going to protect. Because I want people reading this who may be recently diagnosed to know what to expect in all aspects. During treatment, we have bad days and good days. Frequently the bad days outnumber the good days and the "good" in "good days" is directly related to the "bad" in "bad days". My "good" chemo days would not be the same as good days when I'm not in chemo because I still don't feel great, my brain just randomly shuts down on me, and I can't do nearly as much as I can do on normal days when I'm not in chemo.

If you are someone who is not going through this but know someone who is, don't try to force them to be more positive about it all because some days you just need to let yourself feel how crappy it is. But you can see if you can do anything to help make the less sucky days better. Yes, being positive can have a huge impact on how people tolerate the treatments and helping them get to the other side of them to get rid of the cancer altogether but when other people try to remind you of the good things with the intentional of trying to get you to feel better about it while also not knowing how crappy it all is, it's so frustrating.

It's interesting that I feel the need to make others feel better about my cancer diagnosis and treatment when other people want to help me feel better about everything. I don't want others to feel bad for me. I don't want pity. I also like talking about the cancer stuff because right now, that is my life. It's also really interesting. There are so many cool new developments in cancer research, treatment and detection that I wouldn't know about if I did't have cancer. So, the balancing act helps me be able to actually talk about the cancer stuff without drawing pity from those around me.

And I really am OK.