Long overdue update

The last year and a half has had really great things as well as challenges. Survivorship is always a challenge because just because treatment ends doesn't mean life gets back to what you once considered normal. Your body can take a really long time to recover and may never get back to where it was. I have long term changes in my body from the cancer and treatment that aren't fixable and some that may or may not be fixable.

I still spend a good portion of the year anxious but that increases every 3 months for a period of about 4 weeks before and after bloodwork and scans and it's hard to look forward more than a year or two to make long-term plans. I still think about potential jobs and think, what would happen if my next scan or bloodwork showed that my cancer came back, how would that affect everyone else? I don't want to go back to teaching because I can't imagine working with a group of kids for months and then having to leave them and have them switch to a new teacher mid-year because I have to restart chemo or have surgery or both! And I still see my primary care doctor and pulmonologist each 2+ times per year and have 10+ appointments per year for follow-ups for the cancer between bloodwork and scans and actually seeing the doctor. It is always on my mind and impacts every decision I make. AND I'm incredibly lucky to be able to write this post and to be able to tell you how survivorship is hard because I AM SURVIVING.

Health-wise, I'm actually doing really well. As of December, I've had no sign of recurrence since my last update. In March, that will be 2 years from the lung surgery and 3 years from the all clear of the original tumor. I can't begin to tell you how huge that is and what a big milestone that is with Stage IV cancer. It's amazing and wonderful and I'm so incredibly grateful to be here. 

Recovery has been a long road and I'm closer to my new normal goal but I don't know that I will ever get back to where I was pre-cancer. And that's really ok! The summer of 2024 through to early 2025, I had a really bad time with my asthma control. I don't know for sure, but I believe that between the lung tumor, chemo, and lung surgery, it just got aggravated and worse and I'm not sure it will ever get back to where it was.

I'm way more under control now but I take more medication for it, and I avoid things that I enjoy because I enjoy breathing more. :) I spend more time inside in the summer (heat and humidity are huge triggers for me) in air conditioning and garden less. I avoid dogs (and I LOVE dogs!) more as well as floral perfumes (I can handle food scents like citrus, vanilla, cinnamon, etc.). My asthma isn't allergic asthma so allergy pills actually don't do anything to help with asthma control. 

The asthma was bad enough that I almost never subbed (I substitute teach sometimes) and when I did it was for a teacher that just worked with small groups because I didn't have the lung capacity to address a large classroom for an entire day without my asthma flaring. Even with the small groups, by second half of the day, I was using my rescue inhaler. I still struggle during longer days so I only sub half days. 

I was walking a few days a week this past Fall (2025) which is huge for me because I enjoy walking and also because it is helping me get more physically fit and stay active. When the cold hit, I kept walking but when the snow and ice hit, I stopped because I wanted to avoid a fall. After radiation and treatment, I developed pelvic insufficiency fractures and they have remained and are just chronic now and I'm just keeping that in mind. I've had some big wins though. Initially I still struggled to walk more than 15-20 minutes and I was walking so slow but by late fall, I was up to 25-30 minutes at a really good speed. Some days I was down to an 18.5 minute mile. Pre-cancer I could easily walk for 1-2 hours and my natural walking pace was around 3.6-3.7 mph (around 17 minutes per mile). 

I'm getting a little less anxious each time I get my scans and bloodwork done. I don't freak out as much waiting for the results or check the Roswell website hourly for days on end waiting for my results. I still have a pause and get really anxious as I open the results. 

I had a colonoscopy over the summer and they found 3 polyps but all were small and benign and removed during the procedure. I've had 3 CT's since May of 2024 (08/24, 03/25, 09/25) and 2 MRI's (12/24 and 12/25) and all were blissfully clear. My bloodwork has remained clear. My CEA levels remain low and ever since my lung tumor was removed, my Signatera (ctDNA) results have remained negative. Negative is good because it means they didn't find any circulating tumor DNA in my blood sample. Prior to my lung surgery, I did have a positive Signatera result but all tests (every 3 months) since have been negative. 

Between my appointments and kid appointments and illnesses, it's been hard to figure out what to do for work because I can't be very consistent or reliable unless it's flexible. I've been subbing from time to time and tutoring online and I'm working on a few other things to see what pans out but it's a struggle because there are just so many appointments between myself and the kids. I'll figure it out. 

This Christmas break, I cleaned my bathrooms, did a huge cleaning of my kitchen that meant 3.5 hours just at the sink (washing the sink and water bottles and my freezer ice maker and my countertop ice maker) on top of the rest of the counters, etc. Then I baked 3 different types of cookies over a few days. They all took a lot out of me and I was exhausted but it was pretty amazing to feel exhausted after doing all that because it meant I COULD do all of that within a week without huge crashes and even just that I had the endurance to put in hours on my feet like that. It's been a really long time. I haven't baked cookies since about a year before I found out that I had cancer. During treatment it was really just related to the treatment but post-treatment, it's been a combination of the asthma and just overall my body getting more active and recovering.

I went from discovering I have cancer in July 2022 to 8 months of treatment followed by 2 months of neuropathy where it was hard to walk and then breaking my right ankle before the neuropathy had even gone away completely and not being able to do much at all. Then literally less than 2 weeks after I was cleared from ortho, they found the lung metastasis on my ct scan and that started another 8 months of treatment between chemo and surgery. Prior to my lung surgery, my asthma was acting up and continued to act up through to the summer when it blew up and I spent all that summer pretty much stuck in my house just trying to breathe while taking a LOT of prednisone on top of 2 other controllers, my rescue inhaler, mucinex daily and so on and it stayed aggravated through February/March. I had a short window with it mostly under control and then the summer hit and I couldn't spend any length of time out of air conditioning and definitely not physical exercise outside and compounding triggers.

So, exercising is exhausting and I have to take it slowly and it's painfully slow progress and hard to stay motivated especially with my ADHD but I'm trying and it's helping. And I can do it. I can even spend 15 to 20 minutes on my elliptical and it feels amazing that I've come this far and I'm really happy with my progress and I'm continuing to work on it. 

My intentions for 2026 are:

1. Work on improving my sleep hygiene with a more consistent sleep schedule and earlier bedtime and less screens before bed. I'm failing on all 3 right now but I have another 11 3/4 months to keep working on it.

2. Decrease my sugar and decrease other foods that consistently increase inflammation and/or trigger reflux. This will limit some of my vegetables and proteins but I only want to decrease them, not eliminate them and I will have to increase other veggies. 

3. Stay active and keep pushing myself to keep improving. 

Hopefully working on all 3 will also help improve my asthma! It's not going to be perfect and I'm not going to do everything every day but I am going to stay mindful of my intentions and try to work on something small every day even if it's just hopping on my elliptical for 5 minutes or swapping ice cream for an apple or going to bed before midnight. I'll pat myself on the back for all the small wins because they will add up. 

Long story short, I'm doing great and always working towards doing better! I have a ways to go but as far as they can see, I'm still clear of cancer and working hard to keep recovering. 

Thanks all for reading my posts and following my journey! 

Surveillance/Survivorship is hard

Weird, right? Treatment sucks so you'd think that there would just be this wonderful easy moving forward and getting back to normal process. But it's not. 

During active treatment, you are taking things day by day or in small chunks to get to this big end goal which is, hopefully, the end of treatment and either remission or no evidence of disease. Your life has been flipped upside down and taken over by cancer but you have a goal and you are working through it and getting there. 

Then you hit the goal. You are done with treatment. Yay! Mentally though, it's still not over. You stress out with every scan and bloodwork hoping it's not going to come back. Your body takes a really long time to recover. And for me, I have no idea what to do now. Cancer has been my identity for 2 years. It has affected everything in my life. My body, my mind, my relationships, everything.

50% of my conversations with people for 2 years have been about my cancer. And I don't have an easy answer for people when they ask how I'm doing. They want to hear great, my cancer is gone, but it's not that simple. My answer involves saying that my scans are clean and my last pet scan had been clean other than the lung tumor that was completely removed by the surgery. They involve saying that my CEA levels are low and my Signatera (ctDNA test) came back negative and that I am currently in surveillance. There's no clear answer. The cancer could still come back. And that sits in my head. Cancer has taken up space in my brain. I'm working very hard to decrease the amount of space that cancer takes up in my brain but it won't ever be gone. It has moved in permanently.

So back to where do I go from here? Well, as I think and plan work and life, I keep in mind that at any time, the cancer could come back. So now I look at different jobs. I'm not looking at teaching because I can't imagine just having to leave my students if the cancer comes back. I tried to sub this year and I made it in 2 days. Maybe I'll get a couple more in before school ends but it's feeling less and less likely. So I need to look in a new direction for something that I can do from home and is flexible so that maybe I can keep doing it if the cancer does come back. I'm hoping I stop thinking like this in a few years but for now, this is where I am.

I need to come up with something new to do for work. My body is going to take a very long time to recover. My bloodwork is mostly normal other than a few things that need to get back to normal and will. I have mild fluid on my lungs and trace fluid around my heart, chronic sacral fractures (pelvis), aortic plaque, and a fatty liver. All these things are recent. None of them were around pre-treatment. My body took a pretty big hit and it's going to be ok. I'm doing everything I can to heal and recover and I will. This is my next challenge and I've got this.

Post-Treatment

I haven't written in a few weeks because honestly, I didn't know what to say. There's this weird transition after you complete treatment and it is worse after stopping it early. At least for me, anyway.

I was still struggling with my decision even though I knew it was the right one for my body. I did a lot of research and very carefully made the decision but the thing is, even though I know that it's more likely than not that the cancer will come back, if it does come back, I'll always wonder if I did enough. Would 3 more treatments have made the difference? At the same time, if it doesn't come back but I end up with significant long-term side effects on my body from the treatments, I'll wonder if I did too much. There really isn't any winning here. 

Anyway, going back to the transition, I don't know where to go from here. The cancer came back so quickly (or rather never really left) the last time, that it affects all of my decisions. It's been a VERY expensive 2 years for medical bills. We've already maxed out the family contributions to the HSA this year and insurance re-ups in September. That doesn't include the $2250 we put into the account in late December. Between doctors and dentists and cancer, between January and May we have paid more than $10,500 in medical bills and there's still 6 more months and I'll easily hit the $3200 deductible this Fall after the insurance re-ups because I still will have bloodwork and scans and doctor visits and that doesn't include anything that comes up with my family.

So, I'm really feeling the pinch to do more than just what I've been doing part-time for work during treatment these last 2 years because our savings just keeps dropping and it wasn't high to begin with. At the same time, when I'm trying to decide what to do for work, I need to find something that is more flexible. Something that allows me to still take the kids to appointments and still go to appointments myself and something that allows me to keep working even if the cancer comes back and I'm back in treatment again. I hope that doesn't happen and while I don't think it will, the very FIRST scan that I had post NED (no evidence of disease), only 6 months later, was the one that found the metastases so for a very long time, I'm going to keep worrying that there's something small still growing and we just can't see it yet. So, mentally, I need to prepare for that in all aspects of my life so that it's not so hard if it does happen. 

I'm also working myself back onto a Low Fodmap diet this week to see if I can get my stomach to feel better and to get inflammation down and to identify the things that are triggering those problems. Once I am symptom-free, I'll do the reintroductions very carefully this time to identify what foods/groups are problematic and decide what I need to limit and what I need to eliminate. Making such significant dietary changes is hard for me but I'm figuring it out.

I still have so far to go to get my body back into decent shape physically but I'm starting slowly. I've been walking once a week and trying to build little bits of exercise into my days. I'm also doing more around the house again now that I am feeling better and that helps with the physical activity as well. It's still so incredibly frustrating though. I'm so tired of being tired and weaker and now that I'm post-menopausal (silver lining from radiation) and in my 40's and have been unable to do much for well over a year and a half now, it takes a lot to get back into shape.

I'll get there but it's going to take some (a lot) of time and in the meantime, I'm still annoyed at what I can't do. I get tired after a 20 minute walk where I used to be able to walk 5-6 miles (at my former pace that was about 1.5 hours give or take 15 min) and come home and still get stuff done. Now I take a 45 minute break after swapping loads of laundry (carrying the basket up and down the stairs, folding and going up to the 2nd floor to put them away) but this is still way more than I was able to do a few months ago. 

Emotionally and depression-wise, I'm still lower than I'd like to be but it's been an intense few months and, as I said before, the transition from active treatment to recovery is hard for me. I'm still affected by the cancer but may or may not have cancer in my body. I may be done and it may never come back or it could come back way sooner than I like or anything in the middle. There's no clear answer here unless it does come back and I'd rather have no answer but it's hard to sit in a will it or won't it headspace and I probably shouldn't anyway. 

All-in-all, while I always wish it was faster (my ADHD brain wants instant results), I'm recovering well and I'm good. 

Stopping chemo

Sorry it's been so long and I didn't post since surgery. There's been a lot since then. I started back on chemo on March 12. Then I had a round on 3/26 and again on 4/9. Those were rounds 1, 2, and 3 post surgery. This past round also happened to be my 17th total chemo. These rounds were not great. 

5 days into round 2, I woke up with body aches and a headache but no other symptoms and they subsided after a day. 5 days into round 3, I woke up with full body aches, a headache, chills, and a fever. I went to the Roswell Treatment Center. They took 7 vials and 4 bottles of blood, did an EKG and a Chest X-Ray, did a nasal swab to test for 18 different respiratory viruses, and monitored my heart while I was there because my heart rate remained high. In the end, everything came back clear. Everything, body aches, fever, chills, all of it was due to inflammation from the treatment. 

I went back to the research studies I had pulled about surgery and treatment for Colorectal Cancer with a lung metastasis. I scoured back through 12 studies and focused on overall survival and disease free survival at 5 years. I also focused on prognostic factors to see where I stood overall. Then I listed the treatment problems and made a plan. 

I learned that with or without chemo, post-surgery for a lung metastasis, I have about a 30% (not an exact average of the studies, just a ballpark number) of a 5 year disease free survival. While I'm really hoping that I'm in that group, it's significantly more likely that the cancer will recur. There's nothing to show the difference between 3 rounds post-surgery and 6 rounds post-surgery and regardless, I'll never really know if it would make a difference there.

Beyond the research, looking at scans and all the information I have so far, I realized that my lung tumor was held at bay by the chemo but the chemo was not getting rid of it. I am hoping that the chemo destroyed anything small that wanted to grow into something big and anything else that could be floating around my body but I'll never know and can only hope.

I won't bother putting up my notes with Overall Survival and Disease free survival because I'd really need to include much more information because the studies vary in age and scope. I can note some of my positive factors.

Positive factors

• Clear Pet Scan
• Clear ctDNA
• Original tumor still gone
• Single Metastasis
• Normal CEA pre-chemo & surgery
• No other known spread prior or current
• Pulmonary Metastasis - no lymph node involvement
• Pulmonary Metastasis fully removed
• Relatively small lung tumor
• Suffusion during surgery

Negative factors

• Short disease-free interval
• Female
• Rectal tumor (more likely to come back than colon tumor)
• Age @ diagnosis - too young or too old are more likely to have recurrance
• Rectal tumor did involve lymph nodes

Treatment problems

• vasospasms
• fever, chills, body aches
• dehydration
• trouble swallowing pills
• nausea
• heartburn
• inflammation
• neuropathy (pins and needles weren't too bad, couldn't eat/drink cold things)
• constipation
• less exercise
• more weight gain

So, now what? Now, we look forward. Since inflammation can be a big factor in the development of tumors, especially GI tract adenocarcinomas, I work on removing foods that cause inflammation from my diet and adding some new small anti-inflammatory type things, like a little fresh ginger in my smoothies. I work on getting my body healthier so it is better able to fight the cancer and so that if it does recur, my body is as healthy as possible for surgery and/or chemo, whatever I need at that time. 

I'm not done fighting, not even close. I have no problems getting chemo in the future but right now, the toll it is taking on my body doesn't seem to be balanced out by it's possible benefits. And if I had been healthier and had more of a break between chemos to get my body back to healthy, I do think my symptoms would not be as bad as they are and I think my body would have tolerated the chemo better.

Additionally, I will go in relatively frequently for bloodwork and scans and probably still be at Roswell every other month between all the doctors I see and I will have multiple scans per year to make sure we catch it fast if the cancer recurs.

Pain Control/Narcotics

When I started coming off of my oxy, I did stretch it out longer and longer because I ALREADY knew that I needed to do this and not come off of it super fast because of my first c-section. I also knew that I missed the feeling of the pain meds more than I should so when I had a 2nd c-section, I had a very different approach. I told every single person responsible for my pain control about my experience the first time around and that I needed their support in different ways.

• I told my doctors not to prescribe more than necessary. I could always ask for more. 
• I told the nurses at the hospital that I didn't just automatically want them to give me my meds every 6 hours like clockwork. I wanted them to ask and see and sometimes come back closer to 7 hours. 
• I told my husband that when I got home, I needed him to help me watch the times and help me stretch out the pills including cutting them in half the last day or 2 to get as many days of pain relief as possible with as little actual pain medication as possible. 
• I asked the pharmacist to hold the 2nd prescription until/if I needed it. The hospital called in a second script which I found out after it was filled but I think was due to the first c-section coming home with zero pain meds and having trouble with a script that took a few hours after I left the hospital with my husband at the pharmacy and me calling my doctor and the hospital to get pain meds prescribed.
  • Hugely important side note here... a provider OR a patient can request that certain scheduled substances be partially filled. This is NOT for all medications.  https://www.ecfr.gov/current/title-21/chapter-II/part-1306/subject-group-ECFR8588b52940237ef/section-1306.13#
  • For example: Your doctor prescribes you 12 Oxycodone post-surgery. You don't think you will need that much. You can ask your pharmacist to fill as much or as little of that script as you want and then fill the rest as needed (within a certain window of time). So you can ask them to fill 4 now and then go back in a day or 2 to fill 4 more or all 8 OR just never fill any more of the script and not need to have any extra in your house that you won't use.

I've never had a drug or alcohol addiction problem but in the last 10 years, EVERY time I have needed to use narcotics, I've always been reminded about how easily I could see someone having a problem and I feel so much sympathy for people who have had addiction problems that have taken over their lives. 

I've also learned that I'm weird about pain and sometimes my pain tolerance is high and other cases it's VERY low. I fractured my elbow and ruptured a ligament doing Brazilian Jiu Jitsu and walked out of the gym laughing and making jokes while tears were streaming down my face. Then I went home and just used ice and ibuprofen and didn't realize it was more serious until it had been going on for weeks and at that point when they did the scans, there was no point in a cast and I didn't truly need a major surgery for the ligament. Now as my body was in labor... WAAAAAAAAY high pain. Bubbles up in my shoulder area from c-section surgery were miserable and worse and less controlled than the actual area of my body that was sliced open and stitched back together. You get the picture.

Fast forward to the lung biopsy. Apparently, the ONLY pain med they usually give you after the lung biopsy is generally IV tylenol. This was not ok. I could not take more than a shallow breath because the pain was so bad. I ended up getting dilaudid (which made me feel like crap at the time but ironically not nearly as bad after the c-sections or after lung surgery) and I was worried about when I got home so they prescribed me 12 low dose hydrocodone. I used 2 that afternoon/evening and the pain dropped off so by the next day I didn't even need tylenol or ibuprofen.

Moving forward to surgery. On surgery day I had been avoiding the Dilaudid because it had made me feel so badly after the biopsy. Obviously I did eventually use it because I couldn't control my pain without it and it didn't actually make me feel like crap. So when I went to leave and the doctor mentioned calling in a pain script, I told him about the extra hydrocodone I had at home and suggested he take that into account and prescribe me less medication because I can lean on that hydrocodone as needed. So when I came home I had 12 Oxy (5mg) and 10 leftover hydrocodone (5)/Acetaminophen(325). The goal was not to need the hydrocodone.

I had a really hard conversation with myself first and I still go back and forth about what meds I NEED right now to stay at a decent pain level and to keep moving. It's a little scary wondering if you still NEED the narcotics or if you just still WANT them. Even if you don't feel a high from them, you get that immediate pain relief (when it is strong enough to kick the pain) and just feel a little better. So as pissed as I was about being in so much pain at the hospital, I get that with everyone's pain being different, it's so incredibly hard for doctors to determine just the right amount of pain medication for their patients. I think open and clear communication and periodic conversations and talking to the patient about how and when to taper and when to ask for more and providing clear expectations about normal and appropriate pain levels is important.

I'm basing what I NEED on what is keeping me moving but it's removing all of my pain. Last night I used a hydrocodone. Today, all I've taken so far as 1000mg of Tylenol and it's 2 in the afternoon. Do I want the hydrocodone? Yes. Do I NEED the hydrocodone? No. My pain could be worse tonight and maybe I will need the hydrocodone to help me sleep in the middle of the night if the Tylenol just doesn't cut it. FYI - no more than 4000mg of Tylenol in a day and the Acetominophen has 325 per pill so I'm minimizing and cutting back on my Tylenol as well because using 2000-3000 tylenol a day for an extended period of time is also not great.

Pain management is very important and so is restricting opiod use BUT, finding the right balance for the patient is the most important.