Post-Surgery

This one is REALLY long so good luck! :) 

I probably should be updating more frequently. I was very anxious prior to surgery. The PET Scan came back clean from head to mid-thigh other than the tumor that would be removed. The scan they did on my blood for my tumors ctDNA came back low (but still positive and it only takes 1 cell to take hold). And the CT scan in early January and the MRI in late December together showed the original tumor was still under control and the new tumor was growing but the chemo had slowed its growth and i didn't have any other visible tumors in my chest/abdomen/pelvis. All of these are really good things.

But the surgery... so nerve-wracking. Also, not fun. 

So, I got a call the day before that my show-up time was 5:45 am. After I laid down with the kids to put them to bed and they fell asleep, I showered, waited an hour to fully dry, then used special wipes to wipe down my body. I let the solution fully air dry (I turned on the ceiling fan in my room and held up my boobs and belly roll to speed up that area drying out so THAT was funny looking) and then I got dressed and went to sleep. We had washed sheets, blanket and pillow cases that day so they were fresh too! I fell asleep around midnight and set an alarm for 4:15 am. 

Day 0 Surgery Day (Tuesday, 2/6/24)

4:15 am, I woke up (barely), drank the juice they told me to drink 1.5 hours before arrival, and went back to sleep until 5 am. Then I got up, grabbed my bag, peed and walked out the door. We got there at 5:45 am, put my name down on a sheet and 20 min later they called me up to get a wristband and do final paperwork and find out who notifications of different surgery stages needed to be made to. 

Around 6:15/6:20, they brought me back to pre-op and I had to pee in a cup (I'm in menopause and haven't had a cycle in almost a year and a half and they still needed to make sure I wasn't pregnant), wipe down my surgical area with the cloths I had used the night before and get into a surgical gown and grippy socks. Then they brought Kyle back in.

They started setting me up at this point and doctors, started popping in to say hi. They used my port for fluids but they were taking forever to drip in that they took some by syringe and pushed them in a little faster. The clinical trial/suffusion doctor was first to arrive and we talked for a bit and then he had to sign my left shoulder with a marker though I told him it wasn't a cast. I don't remember the order of everyone else, but the surgeon came by to check in as did the anesthesiologists, 2 research peeps who would be in the surgical room, and the surgical nurse. I asked at least 4 doctors and a nurse if someone could just do 1 selfie of me out cold in the operating room with everyone else behind me (ok, 2 pics, 1 serious and 1 goofie) but I got nothing! 🤣

The anesthesiologists also gave me some other meds to help prep for surgery. When the last of the fluids had finally dripped in and everyone had said hi (also, 1 pee break in the middle because you can't give me a bag of fluids without me needing a pee break every 20-30 min), I was rolled out of there and Kyle went back to the waiting area. I believe this was around 8:10. I wasn't in the operating room long before they knocked me out but I remember it having a lot of things in there. 

Kyle wouldn't send the status texts from my point of view. Some examples could have included...

• "in surgery now and that scalpel looks sharp so I may need to put my phone down and check back in later" and
• "what a weird feeling to have someone deflate your lung and fill part of it with a toxic chemical and just chill out like that." or
• "suffusion is done...should I worry about the smile on the doctor's face while he takes a good-sized chunk of my lung out. Is he enjoying his job TOO much?") 

Kyle refused. What a jerk! 🤣 JK He's no jerk, he's one of the most amazing men I've ever had the privilege of knowing. 

Anyway, timestamps of the different stages of surgery were:

• In Preop Area - 7:30 am
• Procedure in Progress - 9:00
• Nearing Completion - 12:52
• In Recovery - 1:02
• Complete - 2:22

They had a nice little board that also showed the stages but I had set Kyle up to have text notifications as well. Somewhere around 11:30 am, the Suffusion doctor came out to tell Kyle that his part was done and they had moved on to the resection. I think Kyle said I was in a room and he joined me around 3/3:30 but it could also have been 2:30. I don't remember. I was barely awake for any length of time for the rest of the day and it I was woken up for meds or anything else, I was actively fighting falling back asleep. And my pain never dropped below a 7.

As far as the surgery goes, the clinical trial surgeon blocked off the blood vessels going in and out of the lower lobe of my left lung. I'm not sure when my lung was deflated but I'm assuming it was prior to this step. Then, the blood was drained and the chemo meds were manually pumped into the blood vessels. At this point, they let the medication just sit in that part of my lung while doing other tests and other things they need to do for the research study. When it's sat for half an hour, they undo whatever they are using to clamp off those blood vessels and let the meds just drain back into my system and get processed out normally. Then the surgeon doing the resection removed a wedge from my lung and they closed me up with a chest tube in. The whole procedure was done VATS so I just have 3 pretty small incisions. 

Day 1 Post-surgery (Wednesday, 2/7/24)

Pain control was a MUCH bigger problem the day after the surgery. Since doctors do rounds at 6:30 am, my nurse was in my room at 5:45 moving me to the chair in the room. Unfortunately, the bulk of my pain was actually in my shoulder and side from how my body was positioned during surgery and while I could rest my arm in the bed I couldn't get a supported position in the chair so as the day went on, my pain just got worse and worse. I may have dropped down to a 6 once really late in the day after both dilaudid and oxy not too far apart but my pain was out of the control most of the day. 

In the morning when the PT came in to walk with me, I couldn't even move or talk and I was crying because the pain was so bad. I had resisted dilaudid up to this point so some of that was on me but I had been telling them since the night before that the Oxy wasn't even touching the pain. This amazing PT said, well, we definitely aren't walking now and she immediately went and got an NP who brought Dilaudid and I dropped back down to an 8 which I was tolerating - ish. 

So then, doctors went through and my arm hurt more and more as they day went on because it wasn't getting supported but I was doing great otherwise and wasn't on oxygen and they removed my catheter and the chest tube. I was doing really good and they were thinking that would help significantly with the pain and it did but no more than dropping me from an 8 to a 7. They were talking about me getting out of there that day and my pain was still all over the place but not below a 7 at any time yet. To get me out of there, I had to be off of IV pain meds (dilaudid) so they cut off that prescription and had me only on oxy and tylenol and neigher came close to dropping the pain at all.

I was sleeping a lot and stayed in the chair and avoided moving because it hurt so much. I was avoiding the spirometer and coughing because the pain shot up when I moved, coughed or tried to breath deep. I had another moment that night where the pain hit a 9 again and I had to write a note to the nurse on my phone saying that I can't talk because the pain is so bad and had to show it to her when she came in because when I tried to talk or move when the pain was bad it hurt worse and then I started hyperventilating and couldn't breathe because I was already short of breath. The NP immediately got the dilaudid re-ordered and gave me some and I started doing better. Then I got back into the bed and between the meds change and what they were alternating with and the chest tube out, and sleep, I started doing better.

Day 2 Post surgery (Thursday, 2/8/24)

I woke up this day at around a 6 on the pain scale with any small movement (including breathing) so this was a huge improvement. So early in the morning they told me I could go pretty much whenever I wanted to that day so I had Kyle meet me at the hospital at 10:30. Took a bit to go over everything and to get out of there but I was happy to be going home. They gave us instructions and called in scripts and the first concern I had was that to get down to a 6, I had been taking 2 oxy at a time and had still been using dilaudid and they had prescribed me 1 oxy every 6 hours (12 pills total - but I had let them know that I had about 10 leftover hydrocodone from my lung biopsy) with 1000mg Tylenol 2x per day. NOT COOL.

So the rest of this day I mostly stayed upstairs in my bed sleeping or just resting with limited movement. Most movement was shortly after pain meds and I did push myself to do a little walking back and forth and use my spirometer every time I got up to pee and if you know me at all, that's at a minimum hourly, if every 20-30 minutes when I'm awake.

Day 3 Post surgery (Friday, 2/9/24)

Started a little rough but around noon, the pain started dropping and the tiredness from the anesthesia started wearing off so I put on my apple watch and did a lot of movement and spirometer and coughing up as much crap as I could. Can I tell you how weird it is to be happy about coughing up blood? Every time though, I was proud of myself because it hurt to cough it up but my body wanted that excess blood from the surgery getting out of my body. It was mostly darker at this point anyway. 

I stayed upstairs this day and I did rest a little in the afternoon but for the most part, I tried to use my spirometer frequently and to walk around to keep moving. I ended the day with 1310 steps and my breathing was definitely improving. I was also getting better at supporting my left arm when it wasn't used and holding it against a pillow when I coughed so it didn't hurt as bad. 

I felt gross since I hadn't showered so Kyle helped me shower before bed and it was amazing to feel clean and to just wash off all the crap from the surgery and hospital. I also was able to take off the dressing from the chest tube area and the dressing from where they inserted the tube into my groin area to go all the way up to my heart to pump in the chemo medication. 

Day 4 Post surgery (Saturday, 2/10/24)

Still used the Oxy every 6 hours and the Tylenol 2x/day to stay on top of the pain and was still sore by the end of the day BUT I woke up around 9 and got up and went dowstairs and spent the day downstairs. My pain well-controlled (by well-controlled, I mean it's generally pretty low at around a 3 at rest, between a 3 and a 5 when I'm moving around, and around a 7 - 8 when actively coughing, which I do a LOT. This allows me to do a lot of moving around and really push the coughs and stuff out of my lungs, and use the spirometer to help me breathe deeper and deeper. I actually overdid it a bit because my sister was helping clean my kitchen and I wanted to chat and needed to move so I just did some slow walking back and forth while we were talking. I had set my watch to track it but didn't think anything of it and when I looked at how long I had just been walking back and forth, it was over 25 minutes. I ended the day with 1923 steps.

Also, as much as you all wanted to know this, with the pain down and moving more and being more comfortable, I had the first 2 bowel movements that I've had since before the surgery.

I'm still very forgetful so Kyle's been giving me my meds all along and keeping track of them for me and has been giving me the shots to avoid blood clots. No naps today so I was definitely wiped so I headed upstairs by 8 pm and was probably asleep by 9:30 pm.

Day 5 Post surgery (Sunday, 2/11/24)

I had pushed myself too much on Saturday so I stayed in bed until around noon before going downstairs but then I headed downstairs for the day. This time I went up and down the stairs more than once and I really should not have. I was feeling it. However, I had a good day, had another bowel movement (sorry but it's actually quite relevant to my recovery), used the spirometer a lot, moved around a lot (1764 steps). I had slowly started stretching out my meds earlier on Saturday (every 8 hours-ish) so I only took the Oxy 2x today.

Day 6 Post surgery (Monday, 2/11/24)

So, I really need to make better choices. I did 5 flights of stairs today and 2,361 steps. But I also was able to take my kids to school (my sister drove) and walk my younger son up to the playground (~30 feet from the door he enters) and we were able to let him swing for 5 minutes before the door opened and he had to go in. I stayed home at pickup but it was just so nice to be out and in the fresh air for a few. Otherwise a similar day to the previous days. Always lots of coughing that hurts. Always breathing just a little better than the last day. Always doing too much and regretting it. But getting a lot in. 

So one difference though is I had big decisions to make today regarding pain medication. I was sent home with 12 oxy and I had 2 on the day I left (Thursday- stuck with every 6 hours), 4 on Friday, 3 on Saturday, 2 on Sunday and 1 Monday morning. I also had 10 leftover hydrocodone from the pain from the lung biopsy. I'm going to save that for a separate (AND SHORTER) post because I think it's an exceptionally important discussion to have. 

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.