Hello! This post is looong overdue, thanks to a wild couple of months and some unexpected infecciones. As you can see from the title, the biggest news since my last post is that my liver lesion came back benign! They gave me a 95% chance that it was malignant, and it came back benign. Wild, wild, wild. Of course we are very happy about that unexpected news. So, I am back to Stage IIA. There were a few weeks of trying to wrap my head around being Stage IV, and I’m not really sure I was ever quite convinced, or at least not ever quite ready to fully accept. Something about the size and shape of the mass, as well as the fact that the biopsy results were inconclusive made me hang onto a little glimmer of hope that it would be benign. And, sure enough, it was! It was quite large, and they took the entire left lobe out so they had all of the mass to inspect during pathology. The whole thing showed no signs of malignancy, even throughout thorough testing and all kinds of variable slices. The mass was consistent with Focal Nodular Hyperplasia (FNH), which is the original type of benign mass that they thought it was on the first MRI over 8 months ago now. They don’t normally see FNH’s shrink with reduction of estrogen due to forced menopause, or light up on PET, but in my case, it did both. There is some evidence out there of FNH’s having estrogen receptors, but the research is limited, so this was definitely a big surprise to my oncology team.
I’ve had some people ask if I’m upset that I had to go through this big surgery and get yet another scar just to find out this was benign. I would say that I am not upset, maybe a bit annoyed, but overall just relieved. It’s a bummer for sure that my body has had to go through all of this, but honestly with everything else I’ve gone through and all the other long-term effects that will come from this, the scars really don’t bother me too much. My liver will be ok without the left lobe, and it may regenerate (if so, it probably already is- they work fast), so I’m not too worried about that. Of course it’s not ideal moving forward for more chemo drugs I have to be on that can be toxic to the liver, but I am not going to dwell on it. I have at least 60% of my liver remaining, and my surgeon said that would be plenty to have good function, so at this point being upset about having the surgery won’t get me anywhere. We are more just relieved to have the mass out so that we don’t have to wonder anymore about what the heck it was, if it was going to grow or shrink, and if there was a chance it could metastasize.
My scar is large, but it’s healing well, and I don’t have a lot of pain with it anymore. It is pretty tight, and there is a fair amount of scar tissue, so I have to go to PT every week to work on stretching it, massage/cupping, and exposing it to different fabrics and textures (apparently nerve endings that get severed during surgery can develop sensitivities within the scar tissue, and if you don’t expose the tissue to a variety of materials/textures as it heals, it can become reactive and painful- who knew?!). I also have to do specific stretches for it at home, as well as stretches for the cording that is in my left axilla. The cording has lessened quite a bit and my range of motion is nearly back to normal, so that’s been a great benefit of PT. It mostly feels now just like I have a very tight tendon running from my pec muscle to my armpit if I stretch in full extension or try to do back bends (working on those- definitely not quite there yet). My mastectomy scars, axillary scar, and expanders continue to heal well, and don’t give me too much pain, just a little twingy at night if I lay on my side.
On the note of my expanders- they are FIRM and far apart- I basically feel like I have two baseballs shoved into my armpits! But I have gotten pretty used to them, and with a shirt on you can’t really tell that they’re expanders. My mastectomy scars do show through smooth, thin shirts, but if I wear a bra it’s not noticeable. I was afraid the scars would be extremely obvious for awhile, but at this point they don’t bother me all that much. Of course I’d prefer to have my breasts and nipples back, but I’ve come to terms with those no longer being a part of me. Again, I think with everything I’ve been through to this point, scars are just a minor part of it all (kind of like losing my hair during chemo…turned out it was one of the easier parts). I will definitely be ready for the exchange/reconstructive surgery next year after graduation, but for now I will make friends with my expanders, just as I have with Portia, my scars, and my buzz cut.
Side effect management from residual chemo effects and early menopause have become a part-time job. Daily medication, constant lotions and bandages for dry, cracked fingers, sprays and rinses for continuous nose running/bleeding and nasal passage sensitivities, supplements for joint pain and immune support, conditioners and serums for hair regrowth, products for lady-related lack of estrogen issues (I could write a whole blog on early menopause, seriously), specialized skin care for facial dryness, diet and exercise to help with fatigue and hormone-related weight changes, etc. It is insane. I never, ever imagined just how much time and how many expenses that cancer care incurs, just to try to remain at baseline levels and be able to function in everyday life. This is the most challenging and exhausting part for me.
A really fun thing that happened during my hospital stay post-surgery is that I got C. Diff (Clostridium Dificile, a nasty bacterial bug). It was awful. Actually, I seemed to have picked it up somehow two days prior to surgery, and landed myself in the ER, but they didn’t test me for it at that time so we didn’t figure out I had it until four days of that nasty bug reproducing and causing damage on my insides. Gotta love that immunocompromised life. I was planning to spare everyone the details, but honestly it’s a decent story so I’ll tell it, because what the heck, I’m already showing my crazy chopped up body and putting it all out there, so why not just be real real.
I have never been in pain like C Diff pain. During the first two days post-surgery, when my stomach started to swell and get extremely painful, the first few nurses thought I just had constipation from surgery and anesthesia. Because of this, they urged me to keep drinking Miralax, continued to give me GasX (literally nothing was moving, not even gas), and told me to walk the halls with my IV stand as much as possible to get things going and hopefully get some relief. So several times a day, I would slowly lean forward in the hospital bed, wincing in pain as my swollen guts pushed into each other, pull my little yellow smiley-faced surgical socks up, gradually move myself to the edge of the bed and set my legs down on the floor one by one, hold onto the bedside handle in order to halfway stand up (bent over at a 45-degree angle), hobble over to where the belt hung that I had to wear around my waist so that my gown wouldn’t be displaying my tush out the back, and carefully shuffle my socked feet around the loop of the carpeted hospital floor, holding onto the IV stand for dear life as I dizzily feigned a haggard smile whenever a nurse passed by. I did this 3-4 times a day for the first two days after surgery, hoping they were right and the pain would subside and I’d have a regular old BM to show a sign of surgery recovery. Little did any of us know that this bacteria was releasing toxins in my GI that were causing me to swell up like a balloon, and soon I’d be the most sick I’ve ever been, with a giant surgical incision in my abdomen, losing 14 lbs of fluid weight in less than 48 hours.
Let me tell you, when C Diff decided to come out and play, it was the beginning of one wild and crazy ride. I essentially lived on the toilet for two days straight. I could hardly get back to my hospital bed before I’d be shuffling my way back to the bathroom with IV stand in tow. Thank goodness one of my nurses thought to test me for C Diff before giving me an Imodium- things could have been SO MUCH worse had they given me one. They did a fecal culture, and it took about two hours for results to come back, but once they knew what it was they started me on Vancomycin, a heavy-hitting antibiotic, within 30 minutes. C Diff is super contagious, so they had to gown up and basically wear a hazmat suit anytime any nurses or assistants came close to me for meds, blood draws, or to help me to the bathroom. I didn’t sleep for at least 48 hours, and would sit in bed staring at the clock waiting for the nurse to come in with my next dose of antibiotics. I truly feel so badly for the patients who get C Diff in the hospital who aren’t mobile and have to ask the nurses for help every five minutes. Those nurses and nurse assistants and heroes, there is no question.
After three nights in the hospital, even though I was still super sick and contagious with C Diff, they let me go because I hadn’t slept a wink and was having terrible back pain from the hospital bed. I think my surgeon could see how weak I was and that getting home to get some sleep was going to be better than another night hooked up to a beeping, blinking IV. I tried so hard to stay positive during those few days and thank the nurses as much as possible, but let me tell you, I had some VERY dark moments alone on that toilet.
My poor parents had to see me in a pretty horrendous state. Weak, gaunt, sunken-eyed, defeated. The worst part was when the discharge nurse removed the drain that was placed inside of my upper abdomen/liver area and extended down to my lower left hip area, where it emerged to drain. The nurse who was discharging me said, “As you know from your previous drains, this will feel weird, but it shouldn’t hurt.” Famous last words.
As she started pulling on the end of the drain, it immediately felt like it was tied around my liver, yanking and snaking it’s way through I don’t even know how many organ spaces, feeling like each one was twisting as it passed by. Then, because I was so bloated and painful from the C Diff, it felt like the drain was turning my intestines around and around as it went past my lower abdominal area, before getting caught on some sutures at the drain exit that accidentally hadn’t been cut. The nurse pulled really hard, not realizing that there was still a small suture attaching the drain to my skin, causing my skin to tear and the drain to finally pop out. The whole experience was excruciating. My parents were witness to the entire thing. I tried so hard not to scream, but wow, it hurt. I normally have a fairly high pain tolerance, but I started crying, and because my diaphragm was so bruised and painful from the liver surgery I couldn’t take deep breaths. The nurse kept telling me to act like I was blowing candles out on a far away birthday cake, and to breeeeath, just breeeeath. I tried to say, “I can’t take deep breaths” through my tears but then just gave up on talking and breathing at all, and instead tried to move to a position that wasn’t giving me excruciating pain. My sweet parents tried to do whatever they could to help, but it was a pretty rough morning.
We made it home later that day via wheelchair and my Dad driving very carefully over any bumps in the road, and thanks to their heroic efforts with the dogs and getting me into bed, I was finally able to get some rest. It took me about a week to restore fluid losses and get my GI back to functioning order, and I still have some muscle loss (INSANE how fast your muscles deplete when you’re totally inactive and starved of hydration for a few days), but three weeks out I am feeling 100x better than I did in hospital. The things that truly saved my life: nurses, Vanco, Liquid IV, Bone Broth, and Cream of Buckwheat!
One other doozy during the hospital stay was that they decided for some reason not to tap my port for surgery, but instead to put about 4 catheters in my right arm and leave them in for 3 days. I didn’t think it would cause a problem, but once my arm blew up like a doughboy and they found a superficial clot in there, things got a little dicey. It’s been nearly a month since the surgery and my veins are still bruised and have become angry and inflamed and hard to the touch in several places on my right arm. I have a few small clots that I am trying to address with warm compresses and elevation (when possible- not super feasible in everyday life). It’s a frustrating side effect that could’ve been avoided, but I guess you live and you learn. From here on out, if I have another big surgery or hospital stay, I’ll insist that they tap my port instead of use arm veins for extended periods of time. Being on the blood thinner I am on should help eventually, but it sounds like these clots/venous inflammation/whatever it is may take months or longer to subside.
Ok! That was a lot, but the C diff stuff was wild, and really gross, so I had to share.
In terms of cancer things that are newish:
- I started radiation last week. I finished 8 of 30 radiation sessions on Friday. So far, I have only noticed some slight redness and tightening over my left expander, as well as some flashes of pain in my chest and ribs a few times a day. I should start noticing more acute affects within a few days to a week. Radiation is five days a week, about one hour in total for the appointment including the drive. Not too bad, but just kind of a nuisance to have it every day on top of other appointments. Most patients there are old men in for prostate cancer, and they sit in the waiting room and talk to each other about riding lawn mowers and things of that nature. I sit among them and peruse stories in Reader’s Digest about people getting nearly swallowed by whales and getting caught in quicksand. I forgot how great Reader’s Digest is. Anyway, the nurses are all very kind and my radiation oncologist is awesome. She checks my skin and my side effects every Friday and determines if we need to change the schedule, lower dosages, etc. One cool thing they do is “map” patients, where they do a CT and place tattoos on my sides and chest in order to precisely locate where the beams need to hit in order to target my left breast, axilla, and chest wall. Lots of physics involved that I don’t understand. Apparently the most common place for breast cancer to return after a mastectomy is in the skin (since there’s no way they can get every single breast tissue cell out during surgery, so some remain right along the inside of the skin- creepy), so they do this cool thing called a bolus where they place a wet towel on your breast halfway during the treatment and it helps the radiation accumulate closer to your skin surface rather than going too deeply into the chest. The wet towel acts as another layer of absorption, allowing the beam to remain shallower. They’ll do that for about another five sessions until my skin starts to show signs of burning/side effects, and then they’ll target all of the dosage deeper into the chest wall and surrounding area. The side effects vary, but the common ones that I am likely to experience are fatigue, skin color changes, rash, possible light burns, chest or rib pain, scarring, and fibrosis. The more serious side effects include scar tissue to my lungs or heart (there is a decent chance I’ll have scar tissue in my lungs, but this usually doesn’t show up clinically, and that they should be able to avoid my heart with their positioning), heart arrhythmias, long-term effects like different forms of cancer from the radiation (very low chance), more significant scarring, limited range of motion, etc. Hopefully with PT and continuation of good skin care, yoga/stretching, and strength training I can avoid the worst of them. I am due to be finished with radiation around the second week of June.
- I am starting chemo (Kadcyla) and a clinical trial (Tucatinib) on May 4th. I’ll be on this regimen for about 10 months; it’s every 3 weeks for 14 cycles. The Kadcyla is an infusion through my port, and the Tucatinib is 2 pills, twice a day. I hate that I have to do more chemo, and for almost another year, but I am grateful that I have ongoing treatment to target the residual cancer (and I shouldn’t lose my hair again). I am nervous about the Tucatinib (the clinical trial drug) since I’ll be the first patient on it here at the UC Health campus, but it is a promising drug so I am also grateful for this opportunity. Tucatinib is a tyrosine kinase inhibitor, which basically means that it is a very small molecule that helps in combating HER2+ cancer cells that like to metastasize to places such as the brain. This clinical trial is testing the efficacy of this drug combined with Kadcyla, my ongoing chemo, to see if it can reduce the chance of recurrence, specifically metastasis to the brain. They have tested Tucatinib with Kadcyla in terms of safety, but not yet efficacy, so this is why I will be the first in our area to be in this trial. Generally the worst side effect is…you guessed it…diarrhea! It seems that’s a common theme throughout the cancer treatment land. The other most common side effects are nausea, fatigue, nosebleeds, and headaches. There are also risks of liver toxicity, hand/foot rash, anemia, leukopenia, heart irregularities, and some others that I won’t go into since that just gets boring. The most common side effects from the Kadcyla (the chemo) are GI issues, nausea, fatigue, and neuropathy. I am nervous about having the combination of side effects from both Kadcyla and Tucatinib during radiation, externships and vet school, but I want to give this drug a good go of it. I am allowed to drop out of the trial if I need to, so we shall see how it goes. I really hope I can get through it, but I want to also make sure I listen to my body and don’t push myself too hard, especially during what is already going to be a very stressful and overwhelming year.
- My nose literally never stops running. Like, I have a nearly constant stream of water going from my nostrils to my lips. It’s disturbing. I have to have a pack of tissues on me at ALL times. It’s not even snot, it’s just…water. It’s so confusing. I know some of it is chemo-related, and perhaps some of it is allergy-related, and I think some of it is also just overall body-stress related, but it’s insane. It. Never. Stops. I have tried Afrin, Neti Pots, saline rinses, allergy sprays, this-meditation-will-heal-all techniques, this-stretch-and-pose-will-cure-your-sinus-issues videos, several supplements, steam-in-the-face sessions…nothing. So I just carry tissues and look like a toddler during a Minnesota winter at all times. I have also started having inflammation and pain of the inner lining of my nose over the past two months or so, where it feels like my mucous membranes are burning and they get really hardened and painful at different times of the day. Again, likely just a side effect of the chemo drugs I’ve been on and my body being hyperreactive to things (allergens, my own snot, who knows), but it has been quite annoying lately and we can’t quite figure it out.
- I’m really tired of treatment and I’m ready to be done, but I still have a long ways to go. As I mentioned, side effect management is a part-time job, and cancer appointments are a full-time job, so trying to manage both as well as class, keeping my sanity with therapy and exercise, and trying to stay in touch with friends and family as much as I can sometimes feels overwhelming and exhausting. Thank goodness for Brandon’s patience, my parents and sisters’ constant visits and help, my brother’s distractions when I need them, my Spanish professor’s support and kindness, and my boss’s extreme patience and support as I try (and fail) to stay caught up with work stuff. These last few months have been a doozy.
Ok, now fun, non-cancer newish stuff:
- The cabin is coming along! Bathrooms, roof, and flooring are all happening now. Super exciting! Brandon has been up there a bunch, delivering tile, checking in on projects, meeting neighbors, etc. I can’t wait to have a chance to get there with him hopefully once or twice this summer, and many, many more times post-vet-school graduation.
- I am planning way too much for this summer and am really excited about it all, and hopeful that I can do it amidst radiation and chemo. I’ve got some spay and neuter trips, some externships, a trip to Ireland for a wedding, a bachelorette party, a trip home to Minnesota, some Red Rocks shows, and a festival. Maybe not my smartest moves ever, but hey, you gotta live a little. Fingers crossed I can make it happen- I am so ready to get back to real life.
- I have a new fuzzy son! His name is Ned. His full name is Bed Head Ned. He was a sad case from a family that could no longer care for him. He was brought into the teaching hospital here in Fort Collins and they found that he has moderate dental disease and mites, and he is a smol skinny boi. He is five years old and it sounds like hasn’t been very well taken care of for quite some time now. He’ll need a dental in order to alleviate some mouth pain he has from not eating hay for years and therefore not properly grinding down his teeth as rabbits should. They get misaligned and this causes all sorts of issues, from pain to infections to not being able to properly groom themselves. We are working on getting him to eat hay (he LOVES veggies, pellets, crunchy treats, and critical care food, but really doesn’t want to eat his hay!), and he is just the sweetest little guy. He seems to crave interaction and loves getting pet and brushed. He is quite possibly the most adorable rabbit I’ve ever seen. He has stolen my heart in just over a week.
- We went to our first Red Rocks show of the season last weekend! We saw Galantis and 3lau, and both put on amazing sets. It was way too much fun, and Alyssa was with us which was so special. She had her first Red Rocks experience, and it did not disappoint. Neither did her outfit, or her moves with the glow sticks.
- We had Vet School Banquet two weekends ago, which was a wonderful reunion with all of my classmates who I hadn’t seen in ages. I miss them all so much, and many tears were shed. It was the first time I had drinks in many, many months, so my body was a little bit shocked the next day, but it was well worth it. Lots of fun times, big hugs, and nerdy vet student moves on the dance floor. I’m so proud of all of them for getting to where they are and being about to graduate. I wish I would’ve been able to do 4th year with them, but I am seriously grateful for the three years we all shared. I have an amazing class.
- My parents are coming back out to put some of the final touches on Buttercup over the next month or two, with new counters going in the kitchen and bathroom. The place is adorable and we all love it. The backyard has a lot of potential and they are thinking about Xeriscaping it, or putting in plants that don’t take much water or maintenance. Basically a sustainable backyard that doesn’t need a watering system or much grass. I am vying for planting a tree or two and making it a “wildlife habitat” type of backyard, but we will see. Gigi LOVES it and I can’t wait for she and my dogs to meet when they’re back out here in a couple of weeks.
Whoa, that was a long one (I guess they all are kind of long…my bad) but a LOT has happened since I last wrote! Overall I am feeling probably 75% these days…still quite a bit of healing to do, and my energy levels aren’t what they were prior to surgery, but eventually I’ll get back there. I am feeling pretty drained from treatment and am slightly dreading this next phase of chemo, but I know I have to just keep on going and take it day by day. I still go to therapy every few weeks and I feel, for the most part, still mentally strong. Just tired, and ready to feel and look like me again. It’ll probably be a few more years before I get there, but I’m doing what I can now to stay the course and not let myself dwell on the crappy parts. I vent when I need to, but just for a few minutes and then try to steer back on track. I am looking forward to all the things I have planned this summer and during vet school, so that’s what is keeping me going for now. I am nervous as hell for clinical year, but really wanting to get back to it and do the best that I can to get through it and learn a ton.
So, that’s all for now. Of course my monsters, King Z, Bed Head Ned and Brandy keep my heart happy and full of love on the daily. I hope everyone out there is doing well and enjoying the transition to spring. I have loved watching the trees blossom during morning walkies with my monsters over the past few weeks. Sending lots of love and doggie (and now Ned bunz) kisses to all of you.
2 thoughts on “13. Stage 4 No Mo”
Oh boy Amanda that was heavy , but very well told , I’ve learned. a lot & cannot imagine how you have pushed your way thru all ups & downs! You are so strong & such a big inspiration. It just shows if you have too you can get thru anything, & most important the support of humans & nonhumans in your life!! Thanks for the update , I’ll as always have you , your family in my thoughts daily💕 have a great summer with all you have planned for fun! Your 2nd cuz Tammy💕
I enjoy reading your blog. It reads like a novel. I’m ready for the “and she lived happily ever after” part.
Love you, Amanda!