13. Stage 4 No Mo

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.

My parents hugging just after we found out that I’m not Stage IV 🤍🤍🤍

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.

Fun times with C Diff. I set my phone up to take this so that in a year I could look back and see how far I’ve come from my lowest point

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.
Ned LOVES his cronchies
  • 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.

12. Livers n Cords (mmm)

Hello everyone, and welcome back. I am exactly one month out from my mastectomy and ALND surgery. My incisions are healing very well, and I have been in for 3 of my 4 expander fills. My remaining pain is limited to the bottom corners of the expanders cutting into muscle and/or areas of my ribs, mostly on the right side. It feels like what I would imagine a pencil being stabbed into the inner, lower side of the breast where it meets the rib. I am starting to be able to sleep on my side, but because of the expander pain I usually can only sleep in that position for an hour or so before moving onto my back again. Tylenol helps somewhat, but not entirely. I can’t currently take Ibuprofen since I am on a blood thinner for the clot in my heart, so I am trying to figure out the right combination of Tylenol and CBD to help with the pain that seems to increase in the afternoon and at nighttime.

The fills themselves are not painful, and usually go pretty quickly. The PA who has done the fills finds the expander port using a magnet, and then injects sterile saline with a needle and syringe. So far they have injected about 75 cc at each visit, and 100 cc were put in at the time of surgery. They do this in a stepwise fashion so that it allows my skin to stretch for a week in order to accommodate each subsequent injection of saline. It feels tight for the first day or two, but the actual skin stretching isn’t nearly as painful as the edge of the expanders cutting into the muscle or along my rib. Luckily, it doesn’t seem to be getting worse with more saline injected; it seems to just be the positioning and suturing of the expander to my chest wall. Hopefully this will lessen over time, since I likely won’t be getting reconstructive surgery for about a year (I’ll have to get through radiation, more chemo, and 4th year of vet school first).

I have developed something called “cording”, also known as “axillary web syndrome”. This is a common post-operative side effect following an ALND surgery, and results from lymphatic vessels hardening after being severed during surgery. It feels exactly like what you’d picture based on the name- a tight bundle, or web, of cords that extends from my upper pectoral muscle to anywhere from my mid-bicep to elbow, depending at which angle I am holding or stretching my arm. It feels like a thick, extremely tight guitar string- they are STRONG. I was referred to physical therapy, which has been starting to help quite a bit. So far, I’ve had two PT appointments where we do a number of different stretches, range of motion exercises, fascial massage, and cupping. I am also supposed to do 10 min 3x a day of specific stretches at home- I’ve been bad about doing it 3x a day every day, but on the days I don’t have a bunch of appointments I’ve been managing to get most of it in. It sounds like if I stick with PT, the cording should mostly be resolved in the next few months. It may recur throughout my life, but right now is the worst that it should be. I love my physical therapist, and she has taught me a lot already.

So, onto the big stuff…as many of you know from social media, the latest bad news in this wild reality I’m living is that the mass on my liver lit up on PET scan a few weeks ago. This led my primary oncologist to change her estimation of this being a malignant mass from 75% to 95%. Of course this wasn’t the news we were hoping for, but it’s the news. So, since my oncologist wants to take the aggressive approach still with curative intent, she strongly suggested that we move forward with a liver lobe resection, also known as a hepatectomy (“hepatic” being the root word referring to the liver).

Liver mass on PET

Her reasoning for this approach (rather than doing another biopsy) is due to the fact that the last biopsy came back inconclusive, and if we were to get the same indeterminate results again, we’d just continue to push my radiation and chemo back again, which risks recurrence of my breast cancer. She also didn’t want to just wait and watch it, since if this is malignant, there is a chance that it could spread. Brandon came with me to this appointment, and he and I both agreed right when she left the room that we were totally comfortable moving forward with the surgery. At this point this mass has given us so much confusion, and although it isn’t the typical shape or size they’d see with a breast cancer metastasis to a liver (usually they’re smaller and in several different areas rather than one large mass), it’s just too ominous not to remove at this point. And, with her prediction of 95% chance that this IS a malignant mass, I feel at this point that it would be irresponsible and risky not to have it removed.

Liver diagram- left lobe is the one against the stomach

Of course this is terrifying, but at this point I don’t really have any other choice. And, the good news is, it’s isolated to the left lobe of my liver, so the surgeon will remove just this lobe and won’t have to touch the right (larger) lobe. This means I’ll have about 30-40% of my liver removed, but should have 60-70% remaining after surgery. The liver has regenerative capacity, but when I met with the surgeon, she said that my liver may well not even need to regenerate since having about 70% left should be sufficient to carry out the usual liver duties:

  • Bile production and excretion
  • Excretion of bilirubin, cholesterol, hormones, and drugs
  • Metabolism of fats, proteins, and carbohydrates
  • Enzyme activation
  • Storage of glycogen, vitamins, and minerals
  • Synthesis of plasma proteins, such as albumin, and clotting factors

In regards to the oncology surgeon who will do the surgery, she is basically a goddess. Brilliant, kind, and beautiful. I totally trust her recommendation and she seemed extremely confident that this was the right course of action. She and my primary oncologist talked at length about the size of the mass (it’s big) and whether doing surgery now vs. later would be best, and they both agreed that doing the surgery now is much better. She said she hasn’t done a hepatectomy like this very often in young patients, just a few, but does it frequently in elderly patients, and even those patients recover very well from it. She said that the younger patients she has performed this surgery on have also recovered very well from this type of surgery. I’ll be in the hospital for 2-5 days, and total recovery time is estimated to be 4-6 weeks. However, I’m hoping that I’ll feel relatively back to “normal” after 3-4 weeks (my recovery from the mastectomy makes me hopeful for the lower end of this time frame).

The surgery itself will entail going in through my abdomen (the incision will be under my ribs on the right side), ligating a bunch of vessels that feed the left lobe, resecting the lobe while cauterizing the edge of the right lobe, and then possibly putting in a drain (only if my gallbladder gets punctured, which she doesn’t anticipate happening).

The surgery is on April 1st, so I’m hoping because it’s April Fools day this means that the mass will come back as benign 🙂 As with this entire experience, I am going to hope for the best, but be prepared for the worst. If it is malignant as my oncologist suspects, then we have taken it out and we pursue further treatment (radiation and chemo) to try for curative intent. What that looks like for now is what we would have done whether or not this liver mass reared its ugly head, and includes radiation starting in the next few weeks as well as further chemo, immunotherapy, ovarian suppression, and endocrine therapy. So, although this could come back as malignant and mean I am Stage IV, at least it doesn’t drastically change any treatments in the near future (at least that I know of at this point).

I have one more fill appointment, one more physical therapy appointment, and a radiology consult appointment before surgery on the 1st. I have been staying as active as I can with walks, modified circuit workouts that avoid too much arm stuff, and just general movement throughout the day as much as I can. My wonderful and beautiful and amazing friend, Olivia, came out to visit last weekend which was fantastic. She is such a light in my life and on top of dinner, hiking, dog walks, and coffee dates, we started to plan a trip together for post-cancer and post-graduation. I am so lucky to have had her as a boss, a mentor, and now a dear friend.

Some other good news which I just received today: Frankie’s lesions came back as benign! I found a few dark spots on his lip last week, and due to him having a malignant melanoma on his snout last year, we were very suspicious that these new lesions were malignant melanomas as well. Oral melanoma in dogs is very aggressive, so I was pretty worried. But, he had them removed with a dental cleaning the other day, and they just came back as benign melanocytomas. YAY! Some good news that we desperately needed around here. An expensive diagnosis, but I am so happy that they’re off of there, he got another really thorough oral exam, and we don’t have to worry about him also having cancer. Whew.

Ok, I think that’s all I’ve got for now. There are some lingering chemo side effects that have been annoying lately, but I don’t need to go into detail on those since they seem to be so minor compared to everything else going on. Mostly just allergy-related nonsense (oh, and the hot flashes are still a fun rollercoaster each day and night). The clot in my heart is still there but I’m still on the blood thinners so this too has kind of been pushed to the background as of late. All in all I am doing pretty well and am just ready to get this next surgery out of the way. Thanks as always to all of you for being interested in this journey and for following along. It means so much to me and to my family. Sending love and (non-cancer) doggie kisses to all of you!

11. Chopped

Sliced n diced, slashed, cut, hacked, split, slit, or severed. Any of the above descriptors would probably work to describe how my body feels at the moment. It’s been one week since my double mastectomy and axillary lymph node dissection, and oooo dawggie it’s been a trip. Yesterday was the first day that I’ve felt about 75% independent in that was able to take a (semi) long walk by myself, can now cut food and prepare meals on my own, can reach upwards at about a 60 degree angle above my head and can do simple things like make my bed, fold laundry, etc. I still can’t hold the leash to walk my dogs (in case they pull or make a sudden movement sideways), so my parents were still walking them for me while I walk alongside as of this morning, and Brandy and Alyssa will help with me the same for the next few days. Before I dive into the details of the surgery, pathology and recovery over the past week, I have to say a giant, extreme-sized, enormously huge THANK YOU to my amazing parents for taking such excellent care of me and the monsters this week. They have been incredibly helpful and have been to my place 3 times a day, if not more, every single day to walk the dogs, help me with my drains, take photos of my incisions for monitoring, help log my meds, prepare meals, and comfort me during any menty b’s (only one menty b so far in recovery, so I’ll take that as a win). They are the absolute best and I am so so incredibly lucky to have them.

Also a giant thank you to Brandy for being there for me from 5 am on surgery day to when I woke up that evening, then delivering an exhausted and loopy me the following day to Fort Collins and showing my mom how to take care of my drains as I was pretty much still in an anesthetic stupor. Also, thanks to my big brudda for picking me up in FoCo to make the drive down to Anschutz for surgery and to my sister and vet school friends for organizing and being on deck all week in case we needed extra help with the doggies. I am so lucky to have such an awesome team of helpers! I am so so so thankful for all of you.

Ok, so onto surgery day. We checked in at 5:30 am and my surgery began right around 8 am. There was tons of prep beforehand and I even got to experience a bilateral paravertebral block (pictured below- I asked Brandy to document as I thought it was pretty cool). My surgeons (Dr A & Dr C, “deconstructive” and “reconstrcutive” surgeons, respectively) both came in just prior to surgery to say hello and to ask if we had any last-minute questions. We didn’t, but since I was feeling a little loopy on feel-good drugs already I decided it was appropriate to tell my female surgeon (Dr A) that I thought she had beautiful eyes and her scrub cap really brought them out. Pretty sure I probably told her that eight more times in the recovery room, but that’s neither here nor there. Anyway, they wheeled me away and I kissed Brandy goodbye in my cushy yellow hospital socks and party hat (aka surgical bonnet) while chatting to the anesthesia team about dogs (what else) and all I remember after that is seeing the surgery suite, realizing how many damn people it takes to do the surgery I was about to have, and seeing them wheeling basically a meat hook looking contraption toward me that I realized my arm would probably be hanging in for the next 6 hours. They put my mask on and I was out like a light.

The surgery took about 6.5 hours and then I recovered for about 2 hours before they wheeled me to my overnight room, which basically consisted of two thin walls and a curtain between me and the hallway. I remember peeing in a bed pan at some point and thinking I was hilarious when the nurse asked me my boyfriend’s name and I said, “Brandon, but he prefers Brandy.” She understood the assignment, so she actually wrote that up on the window and I was very pleased with her and myself. Soon after that I saw Brandy’s cute little face pop up in the curtain and I said, “Dr. Brandy!” and then I think I just talked in anesthetic loops about weird stuff for the next 30 minutes or so. I also promptly told him that the patient in the room next to me was “very loud” and “very extra” and that her TV was really annoying (she blared it all night long, so to be fair I was not making this up. She was VERY extra). Nurses came in and out for the next few hours and checked on my pain levels and drains (and taught me how to “milk” and empty them (barf)) and it was all a little blurry and goofy for awhile.

I ate some yogurt which tasted amazing and Brandon sat on my bed and hung out until it was time for visitors to depart. He told me later that I looked like a frail little sick grandma when he walked into the room and it was the first time it really hit him just how sick I really am. He was right- I looked like total shit and my body was hardly able to move so I don’t blame him for being a little shocked. I was white as a ghost and could barely get out of bed without assistance, so I certainly felt it. I spent the night laying awake with these anti-clot puffer things constantly pulsing around my lower legs and the bed moving up and down automatically every few minutes and the patient next door’s TV roaring Jerry-Springer-like shows all night long. I stared at the wall clock for hours waiting to fall asleep but it never really happened. I ended up making friends with one of my nurses who told me all about her adorable rescue dog, Ragner, who was a bait dog in fighting rings and incredibly fearful, but now the love of her life. She even gifted me his photo from her desk to aid in my recovery so I ended up staring at his face from about 2 am-4 am until the hospital started to wake up again. That nurse and Ragner were definitely a light amongst the dark parts of that first night.

Brandy returned in the morning to scoop me up, and after some more pain meds, a visit from the anesthesia team to make sure things looked ok, a hug goodbye to my sweet and funny nurse Sue, and some help getting dressed, they wheeled me out and we were off to Fort Collins. My mom was here to receive me and amidst some very excited doggies we managed to take care of my drains as a team and then get a first look at my incisions. I must say this was definitely a different experience than what I imagine a first look at a wedding would be. Quite the contrary, I would assume. I undid the tight pink Velcro bra they had strapped onto me and opened my shirt with the drains hanging out the sides and looked at Brandon and my mom’s faces as they saw my post-mastectomy body for the first time. They both looked a little shocked, but surprisingly calm, so that was reassuring. I think they were both surprised at how little bruising I had, but also realized in that moment just what my body had undergone. I couldn’t quite look at the incisions yet on day one, but was able to take a look the next day in photos. We started taking pictures right from the start in order to monitor the incisions for infection and healing, and it’s been interesting to see the changes that have happened in just one week.

Ok, so about the surgery itself…I had both breasts removed, as well as an axillary lymph node dissection, which basically means they went in through a big incision just below my left armpit and they took out a few of bundles of lymph nodes embedded in fat. All in all they removed 15 nodes, and 3 of those nodes tested positive for cancer. One of those positive nodes was within a bundle of “sentinel” nodes, which is the first bundle that the lymph would travel to from my breast, and the other 2 that tested positive were in bundles just beyond the sentinel nodes. When they removed my breasts, they removed all the breast tissue and my nipples, as my tumor was close enough to my nipple that there was a chance that the nipple could have retained cancer cells, and could grow cancer later on had I kept them. So, for this reason, I decided with the guidance of my surgeon to have a “non-nipple sparing”, or what they call “skin-sparing” mastectomy. Aka- the type of mastectomy with the large scars across the mid-section of the breast. Because my tumor was in my left breast and ran from behind my nipple up along the outer edge of my breast and into my axillary region, and was located quite high up, my surgeon explained that she would have much better access to removing all of the tumor if she could go in through the center of my breast rather than from below. That was all I needed to hear in order to decide to give up the nips. On the right side, they removed all of my breast tissue and nipple as well, but since they didn’t have a reason to need to access as high up in order to remove a tumor (as they did on the left), the incision is lower. In the end, these scars should heal well and blend somewhat with my skin, and they will even things out as much as possible once I have reconstructive surgery next year. After I heal from that, I hope to get some cool tattoos that incorporate my scars (I have a few mastectomy artists in mind, and love the work done in the photos below by an artist that I follow in Chicago).

The type of cancer that I have did not change from my original biopsy done 7 months ago, which was “Ductal Carcinoma In Situ” and “Invasive Mammary Carcinoma”. The cancer came back as “triple positive”, meaning that it is receptive to the hormones estrogen and progesterone, and it overexpresses the HER2+ protein. The only difference from my original diagnosis is that they did not find that one of the tumors was HER2-, which they had found previously. I’m not sure what this means in terms chemo moving forward, but I should know more after next week. I don’t anticipate that it will change the treatment plan, since I have always had at least one portion (the larger part) of my tumor growth that was triple positive.

One crazy thing I learned this week is that chemotherapy apparently doesn’t touch the cancer that is “in situ” (aka “in place” in the milk ducts), only the cancer that invades other tissues and that you feel as an actual lump, so although on imaging my tumors had decreased in size by quite a bit, there were still 8 cm’ worth of “in situ” cancer in my milk ducts and 2.4 cm of the “invasive” type as a tumor found in my left breast tissue (this surprised me! I did not know this about chemo until they explained it to us yesterday). So, basically if you feel a lump you are not feeling the “in situ” cancer, 99.9% of the time it is the “invasive” part of the cancer that has invaded other tissues outside of the ducts that you can feel. My right breast had no tumors and all tissue appeared to be benign on pathology (this was expected as nothing was seen on mammogram at time of my original diagnosis).

The other interesting part of the pathology report that is worth mentioning here is the “Residual Cancer Burden” calculator (from the MD Anderson Cancer Center) that is used to compute the Residual Cancer Burden:

“Residual cancer burden (RCB) is a continuous score that captures the amount of residual cancer after neoadjuvant chemotherapy and predicts disease recurrence and survival across all breast cancer subtypes. Six variables are included in a calculation formula. The calculated RCB index value can also be categorized as one of four RCB classes: a value of 0 equates to a pathologic complete response. The following three classes: RCB-I (minimal burden), RCB-II (moderate burden), and RCB-III (extensive burden).

This link brings you to a very readable and easy-to-interpret article summarizing the details and prognoses associated with RBC: Residual Cancer Burden is Prognostic of Outcomes. Based on primary tumor area, percentage of the tumor that is invasive cancer, and the extent of lymph node involvement, I fall into RBC-II (moderate burden). The text within my path report that specifically reports this says:

“Grossly we measure a 5 cm by 3 cm densely fibrous area consistent with a tumor bed; histologically, we find invasive tumor throughout this entire area. The tumor is variably cellular within this tumor bed with an overall estimated cellularity of 10%. Incorporating these figures into the Residual Cancer Burden Calculator from MD Anderson Cancer Center, we compute a residual cancer burden of 3.175, which provides a residual cancer burden class of RCB-II”

Had one more lymph node been positive for cancer, I would fall into RCB-III (I only know this because my surgical oncologist explained it to me and because I used the calculator, found here): RCB Calculator. So, not great, but pretty much what I was expecting (and I am glad that my primary oncologist prepared me for this).

Helpful table showing stats of event-free survival at 5 and 10 years for different breast cancer types (mine is the 3rd row- triple positive)

The lymph nodes removed were quite a few, which is not ideal for chances of lymphedema, but they did a cool procedure called a “lymphovenous anastamosis” which helps reduce my chance of lymphedema by up to 30%, so I am really grateful for that. My reconstructive surgeon (Dr C) did this portion, which entails suturing my lymphatic system to a vein (with a teeeeny tiny suture) so that the lymph has somewhere to go. It is a relatively new procedure but they’ve had a lot of success with it, and he was willing to take the extra time to do it, so I was very excited when they offered it as part of my surgery.

Ok, so the recovery portion. The weirdest and most difficult part right now is the numbness and tightness from my left axillary region to the middle of my left tricep area. It’s basically numb and/or feels very bruised in different sections, and I may not regain full feeling along the back of this arm. They are having me start doing light massage a few times a day to the tricep area with hopes I may have eventual nerve regeneration in that region (massage is painful but manageable right now). I can’t extend my left arm fully forward yet and only can really touch the top of my head. I can reach behind my head slightly and can do small arm circles, but it will take quite a bit of time and physical therapy to regain full range of motion and mobility and strength in my left arm. I can’t feel any of the incisions (either on my breasts or under my axilla on the left) but I can feel the center of my chest and around the lateral edges of the expanders. Everything feels very tight and stapled, but the pain is mostly gone so long as I don’t do any sudden movements and don’t extend my left arm past certain points. The first few days were pretty painful and rough, but I only had to take the Percocet for about 3 days so it wasn’t too terrible. The drains are clunky and itchy and annoying, but all in all not too bad now that I am down to two. I had two removed on Thursday at my recheck appointment and have two remaining (I will include a video below of one of the drains being removed for those who want to watch- kind of cool). Once these are out I will start to feel a lot more free and able to do most “normal” things again (besides intense workouts) for a few more weeks or things that put a lot of strain on my axillary region or pectoral muscle area.

🤢

For the reconstructive part, Dr C placed expanders under my pectoral muscles that are basically like really stiff fillable round containers/pockets that will be filled with saline each week starting this Monday (for four weeks). They injected 100 cc’s in at the time of surgery and will fill them with another 300-350 cc’s of saline slowly over the coming month to allow my skin to stretch to accommodate the eventual implants they’ll put in when they take the expanders out. The expanders are sutured into my chest wall and will be exchanged for the implants in about 9-12 months, depending on how I heal from radiation.

Radiation will begin in a few weeks, after I meet with my oncologist to discuss next steps next week. I will have to get little placement tattoos for radiation and will be going to the cancer center here in Fort Collins Monday through Friday for 6 weeks or 33 sessions of radiation. It will be applied to my left breast and left axillary region, and sometimes extends a bit up the neck. During this time I will begin PT for my arm and chest (and whole body) as well as start a new more mild form of chemotherapy and continue immunotherapy to try to eliminate any remaining cancer cells in my remaining breast cells and lymph nodes. I will also start on ovarian suppression drugs (Lupron) in order to keep my ovaries from producing estrogen until I can get a total hysterectomy at the time of my reconstructive surgery. My ovaries have been turned off because of the more intense chemo I was on, but they will start to wake up again soon, so the Lupron keeps my estrogen levels low so that I have less of a chance of cancer recurrence, since my type of cancer is fed by estrogen. One weird thing I noticed this week is that my hot flashes have been less intense, and we think it’s just because my body was in such shock from the surgery. They were gone for about 3 nights (and it was amazing), but they have come back over the last 4 days or so. Gotta love hormonal fluctuations! Always a blast.

In terms of recovery, they told me the first two weeks are the hardest and I should be mostly healed by 4-8 weeks (I am hoping closer to 4 weeks). I feel like the worst part has been the post-anesthesia bloating and fatigue, and just the annoyance of having to sleep upright and empty the drains 3x a day. You have to strip the tubes of the tissue and blood inside of them and push it all down into these flexible plastic bulbs, which then are emptied into cups to measure the total output. Once the output is under 30 mL per day, they’ll remove them. So on Thursday, since two of my tubes were below the output, they were able to be removed (hallelujah!) and I am hoping the other two might be removed this coming Monday. My mom helped me do this task for the first 4 days after surgery, 3x a day, which is truly a heroic effort considering just how gross and tedious of a task it is.

The fatigue is lessening now that I am off of the Percocet and able to go for longer walks. I am sleeping decently well, not great but not terribly, so that’s not been as big of a challenge as I expected. My dogs have been so sweet and comforting and patient as I had to spend the first few days kind of lazing around, which they’re not used to. My parents walking them has helped us all SO MUCH, and it’s helped me to get out and get moving as well. It’s helped a lot to get back on a more regular schedule again and do three walks a day with Spanish and other computer tasks or projects in between. I feel like the days are going by fairly quickly now that I can move around a bit better and it has helped me mentally as well.

Emotionally I am up and down. Overall I feel like I am staying as positive as I can, when it feels like I am able to be. When I feel down, I let myself feel down, and I had a good cry with Candy V the other night which was cathartic. I am just so sick of this cancer crap and it feels like I’ve been living this nightmare for a really long time now. I am trying to be patient and stay the course, but sometimes it’s hard. I see all my friends and classmates and family and partner continuing their lives as normal and accomplishing goals and moving forward, and I feel like I am just in this weird in-between limbo that I can’t get out of. I know I have to continue to battle as hard as I can, and eventually I’ll get there, but sometimes when I think about the daunting road ahead and the chance of recurrence I get overwhelmed and pretty down about it. But, at this point there’s no other choice for me but to push on and keep doing the best I can to get through this.

As for right now, the next big thing is a PET scan this coming Wednesday to determine whether or not the mass in my liver is cancer. I am pretty nervous about this appointment but trying not to get too in my head about it. I am feeling hopeful that this will be some weird benign growth that we can take care of relatively easily and it won’t continue to be an issue. But, that is to be determined in a few days, and for now I will just focus on continuing to heal, walking, and getting stronger.

I will keep updating with the reconstructive photos as I go, since I’ve had a lot of people reach out about the whole process and how it works. Even though it’s terrifying and surreal having it all happen to my own body, it’s also fascinating to me. I hope documenting all of this continues to educate and inspire those of you who have chosen to follow along and who have reached out with kind words and appreciation. It means more to me than I can express in words and I am eternally grateful for all of the support and love. Sending love and doggie kisses to all!

🤍🤍🤍

10. Inconclusive

That word! That damn word! We could not be more tired of hearing it. I’ve had yet another few weeks of inconclusive results, this time not to do with my heart, but with my liver.

During my very first CT, a large mass was seen in my left liver lobe, so my oncologist had me do an MRI so that we could better visualize the tumor. At that time, the mass was 7 cm x 4 cm, which is quite large, but based on the echogenicity (essentially the “brightness”) and the shape, the radiologist who read that report surmised that it was “focal nodular hyperplasia” (FNH), which is a benign tumor. My oncologist and a few others that she spoke to agreed that it looked to be a FNH. She also told me that in her entire career as a breast cancer specialist, she had never seen breast cancer metastasize to the liver to form a single focal tumor such as mine. Generally, if breast cancer metastasizes to the liver it shows up as multiple, small tumors spread over a diffuse portion of the organ. So, at that time we decided to move forward with chemotherapy and assume that the liver mass was benign, meaning that I was still considered Stage II. Fast forward to a few weeks ago when I had a repeat MRI of the mass to assess how things were looking. Turns out the mass has shrunk from 7 x 4 cm to 5 x 2 cm, which was alarming to both my oncologist and myself, as this means the mass may have decreased in size in response to chemotherapy (and hence, could be malignant). The other thing that it could have been is something called an adenoma, which is a rare but benign tumor that is hormone-responsive. If it were this, it may have decreased in size due to me being in forced menopause from the chemo and my estrogen levels tanking. So, after another meeting with my onc, we decided that a liver biopsy was now warranted (I had asked about a liver biopsy and PET scan when the mass was initially found, but I was told at that time that the MRI would give us a lot more information than a biopsy, so we held off).

Liver mass (central photo, with measurements prior to chemo)

Well, I had the biopsy two weeks ago, and after landing myself in the ER (thanks to my amazing friend Danni for driving me back to the hospital after fainting in her car and then sticking with me ALL day as they stabilized me), we got the results back and they read as follows: “The sections of liver demonstrate reactive features including a lobular mixed inflammatory component, glycogenated nuclei, features of early ballooning degeneration, and sinusoidal dilation. The findings are favored to be reactive and could be secondary to medication/treatment related changes. Alternatively, these findings may be seen adjacent to a mass or more worrisome process. Clinical and radiographic correlation is required.” They also confirmed that no signs of focal nodular hyperplasia or a hormone-responsive adenoma were noted. This part was a huge bummer, as I was really banking on it being a benign adenoma. Unfortunately, ’tis not the case.

What this all means is: the tissue is very angry about something, and what that something is, they don’t necessarily know for sure yet. It’s either a reaction to chemotherapy (which would mean the mass is malignant) and is “stunned” from the chemo, so not currently rapidly dividing and therefore not showing obvious signs of malignancy, or it may be that it is still one of a number of rare but benign adenomas. I met with my oncologist yesterday to discuss these results and get some more clarity.

Here is what she told me:

Based on the characteristics seen in the pathology report, the fact that the tumor was present prior to chemotherapy and then shrunk during chemotherapy, and the fact that they ruled out FNH or an obvious adenoma, she and my surgical oncologist agreed that there is a 75% chance that this tumor is malignant. There is a 25% chance that this tumor may still be benign. This means that there is a 75% chance that I will be reclassified as having Stage IV cancer, and a 25% chance that I will remain classified as Stage II. Stage IV cancer is considered “incurable”, although if this is a HER2+ type of tumor (if that’s the type of cell that escaped my lymph nodes and made it to my liver), there is a 5% cure rate. This means that 5% of the time, people who have HER2+ breast cancer that metastasized to the liver will undergo enough treatment that the cancer disappears. 95% of the time, this is not the case and those patients will never be cancer-free. If this is a HER2- tumor (one of my tumors is HER2+ and one is HER2-), there is no known cure.

The options for treatment are complicated and widely vary depending on a number of factors. If this does indeed come back as malignant, I will be referred to two liver specialists at Anschutz in Denver to discuss next steps. One type of treatment is called ablation, where they would surgically resect the tumor, and another is radiation. There may also be a combination, and either treatment would be decided upon by the liver specialists, my oncologist, and myself. Neither treatment option is a very good one, and outcomes are generally not terribly effective. Unfortunately, the prognosis for Stage IV breast cancer is not very good. There is limited research on metastatic breast cancer, but the general consensus as of now is that “patients with metastatic breast cancer may live for years, but generally not for decades.” We didn’t discuss prognosis too much yesterday because it was already overwhelming enough to receive the news that she suspects the tumor is malignant, so I couldn’t really go there just yet.

As of now, my primary oncologist and my surgical oncologist have decided to move forward with me undergoing a bilateral mastectomy and axillary lymph node dissection. Generally with metastatic breast cancer, they don’t recommend surgery as the prognosis doesn’t change much and it’s a huge surgery to undergo if it isn’t really going to affect the long-term outcome. However, because of my young age (well, for a cancer patient) and because we don’t 100% know yet if this is malignant, my oncologists and I agreed we want to move forward with surgery. We can’t do a PET scan right now because the tumor may be stunned from the chemo so it wouldn’t light up just yet, but in a few weeks once I get my drains out, if the tumor is malignant, it will have started to grow again, so at that time we should be able to see it on a PET scan. For that reason, my oncologist ordered a PET scan for me to do on March 9th, exactly two weeks after my surgery. I’ll still be healing and have my drains in, but we wanted to know as soon as possible so we can make the appropriate decisions moving forward. We may or may not do a follow-up liver biopsy depending on what the PET scan tells us.

Some of you may be wondering if I am upset that I wasn’t given the opportunity to do a PET scan or liver biopsy back when I was first diagnosed and we found the liver mass on the CT. I am not. My oncologist brought this up and apologized for it, which I appreciated, and she also admitted that she and the other oncologists she met with were 99.9% certain that the tumor couldn’t be malignant based on shape, size, and appearance on the MRI. She also made a great point that is the reason I am not upset…had we done a biopsy or PET scan at that time, and determined that this was malignant, she more than likely would not have recommended the chemotherapy that she did, and she would not have advised I undergo surgery. Because we thought it was benign this whole time, I underwent chemo which drastically reduced the size of my breast tumors, and they are still wanting to move forward with curative intent surgery with hopes that there still may be a chance we can beat this. So, all in all, it may have been a blessing in disguise.

Ok, so that’s all I’ve got for now. I am pretty numb with the news and still trying to process everything. I cried a lot yesterday, and I told Brandon and my family right away. We are still hopeful and although I am devastated, I know that right now I need to focus on preparing for surgery next week and just be patient. I don’t have a lot of capacity for doing outside research or asking questions of those who know others living with metastatic breast cancer, but I’m sure I will soon want to find out more. Right now I am just going to do my best to get through the days and try to maintain some semblance of normalcy. I have a number of appointments with surgeons, anesthesiologists, some support services, and another injection over the next few days leading up to surgery. Amidst all of this we will be celebrating my big brudda’s birthday this weekend which should be fun. I miss my friends and normal life so much, all the time. It’ll be awesome to see a few of their faces, if even briefly this weekend.

Love to you all, and thanks as always for following along. I couldn’t do this without all of your love. Sending love and doggie kisses to everyone out there!

9. A/C & Taxol…check!

Hello again all! Thanks for coming back for more BOTB updates n funz (or something like that). I just completed my heavy-hitting chemo infusions and am within a few weeks of surgery (end of February), so I figured it was a good time to blog it up!

Everything with my heart is still about the same- we are monitoring and I am still on blood thinners. I have an echo coming up in early February and a follow-up appointment with my cardiologist, so that will likely tell us more about what might still be going on in there. I also have a liver MRI coming up in order to assess if the (hopefully) benign tumor found on my liver at the beginning of chemo is staying the same, growing, shrinking, or any other changes. I will also have another breast MRI in a few weeks’ time to assess the size of the tumors now (they continue to shrink from the chemo, yay) and determine my final surgical plan. It’s still looking like there may be residual disease at time of surgery, so they’ll likely remove at least a few of my axillary lymph nodes in addition to the bilateral mastectomy. The number they remove will be determined by whether or not the pathology of my “sentinel” lymph node in that area comes back positive or negative for cancer cells on the day of surgery. I am expecting that it will come back positive, but hoping for the best. Ideally the pathology will come back negative and they’ll only have to remove 1 or 2, but more realistically it’ll probably test positive and they’ll do the full “axillary lymph node dissection” which means they’ll remove quite a few more nodes. I will find out just how many when I wake up from surgery. I also have a few surgeon appointments coming up mid-February to talk about final plan and go over all the anesthetic drugs I’ll be on and what to expect post-surgery.

Another procedure I have coming up tomorrow is something called a Savi placement in my sentinel lymph node (the main node that was biopsied and tested positive at the time of my diagnosis). This is essentially a tiny radio transmitter that they place inside the node so that at the time of surgery they can locate it precisely and ensure that they remove the correct node. This is important because since this node was the first one they detected cancer in, they want to absolutely be sure they remove it, even if the chemo has reduced the amount of cancer within it. When they first biopsied this node, they damaged the nerve in that area, so I have had a weird tingly numb area in my armpit and on the back of my left arm for the last 5 months, Recently the nerve has been healing so I have been able to feel areas in that region again, but I expect that when they put the Savi placement in they’ll have to go through the nerve area once again and have I’ll have some more damage. We shall see. It’s a really weird feeling to push on the area where the node is in my armpit and to have the whole back of my shoulder go numb. Not overtly painful, just uncomfortable- especially when stretching or doing yoga.

Side effects from chemo lately have continued to be rough, but not debilitating. I have had continued GI effects, frequent hot flashes from the forced menopause (they’re incredibly annoying), ridiculously dry and itchy skin (rashes have resolved thanks to meds), acid reflux, dry mouth, mild muscle and bone pain, mild neuropathy in fingers and toes, some mild double vision, many bloody noses, and overall fatigue/exhaustion by about 3 pm every day. I have been trying to stave this off by keeping up with walks, yoga, stationary biking, short runs when I can, the occasional circuit workout on a good day…exercise seems to help with the fatigue, but I am still in bed by about 9 every night and need to sleep for about 9-10 hours to feel energized enough to get through the day. I am terrible at napping and gave up on the idea after the first few weeks of chemo, but have been sleeping decently well at night lately due to some THC/CBD gummies that Brandon found for me. The neuropathy isn’t too bad, just a few tips of fingers and toes are numb, and the double vision is from muscle fatigue not allowing the muscles in my eyes to fully focus. This usually only happens in the mornings and evenings (luckily) and is more annoying than inhibiting.

The hot flashes definitely wake me up multiple times a night, but they’re less frequent than they were a few months ago. I generally have about 4-5 per night that I remember in the mornings, and during the day I have them about every 45 minutes. That’s one thing I really wish someone would have told me earlier on when I was first diagnosed- that the early/forced menopause with all of this is half the battle. It’s almost as bad as the breast cancer itself. I am finding that if you look for it, you can find a decent amount of information about early menopause and menopause in general, but overall there is such limited info out there and people don’t like to talk openly about all that comes with it and just how isolating and miserable it can be. The fluctuating hormones and sudden tanking of estrogen due to the chemo causes all sorts of side effects- physical and psychological. It’s a LOT to deal with, and no joke. Meds can help, but without being able to take estrogen, the meds that are provided aren’t all that effective. Exercise, diet, sleep, and other healthy habits can help, too, but not a whole lot (at least in my experience so far). The most frustrating part is that the hot flashes can last for years, so this is something I am just trying to get used to/deal with the best that I can. Since a ton of chemicals are released when hot flashes occur, I get this weird feeling of anxiety every time I have one too. I don’t know if this is attributed to cortisol release or something else, but it’s not a fun addition to the heat. I’ve chatted with a few fellow female breast and ovarian cancer patients about this and everyone seems to agree- the forced menopause and hot flashes are a bigger deal than what we expected, and they definitely affect sleep, overall happiness, and quality of life. So men, if your lady is going through or has gone through menopause, whether it was in her 40’s, 50’s, or way too early due to cancer, PRAISE HER. BEING A WOMAN IS REALLY EFFING HARD.

Today was my last day of Taxol (!!), and after this I will get immunotherapy combined with a less intense form of chemo once every three weeks for about 9-12 months. The ongoing chemo is due to residual disease, and is called Kadcyla. This chemo/immunotherapy combo will help continue to fight the HER-2 positive protein as well as any remaining cancer cells in my lymph nodes or elsewhere. I’ll keep my port in for the duration of these infusions with the hopes to get it out sometime next fall or winter, probably around the time of my reconstructive surgery and hysterectomy. I am really excited to be fully through the A/C and Taxol,,,all 16 infusions and 5.5 months!

Done with AC and Taxol!

Overall I have been dealing fairly well with chemo, and I am grateful that I’ve been able to continue to walk my dogs and feel relatively decent compared to a lot of patients who have it much worse. I definitely have existential crises multiple times a week and a general feeling of sadness, depression, anxiety and fear, but I know this is all a very common part of cancer treatment. I hope it eventually goes away and I get back to feeling happy and positive about most things, but for now I just try to stay busy and occupied and active in order to quell the worst of it. With surgery coming up I have had more and more sadness about the big changes coming my way, but I am also trying to stay hopeful that things will eventually be healed and I will feel like myself in my body again. I think another thing that tends to give me anxiety in all of this is the thought that even though I’ll eventually complete chemo, surgery, and radiation, the effects will be long-lasting. I don’t know that I’ll ever feel like this is “over”…and that makes me sad. I feel like I am starting to process the loss of my old self in a way, which is really really hard. But I will keep trying to do my best to stay as healthy and proactive as possible to mitigate whatever long-term consequences are in my future, and in doing this hopefully my future self will be even better in some ways.

Brandon and I had a fantastic few days off the grid at a tiny cabin in Marble, Colorado over New Years. We were gifted a giant snowstorm for 3 days straight so we snowshoed 9 miles and enjoyed every bit of watching the dogs go crazy bounding through the powder. We played Monopoly, read books, watched moves, ate lots of snacks, had a bonfire inside a teepee, and drank hot chocolate. It was just what the doctor ordered.

I am staying busy with another semester of Spanish for Vets class, remote work, paper writing, planning fun design and renovations for the cabin with Brandon, helping my parents get their place here in FoCo set up, spending time with my sister when she is out here visiting, walkin the ‘hood and nearby trails with the dogs, and looking forward to post-surgery time when my body and immune system starts to heal. Next week I’ll be starting to volunteer in the Vet Services department at the Larimer Humane Society as well which I am really excited about. It’s one thing that will help me feel like I’m transitioning into “real life” again as I start to heal after surgery and move toward being back in school and doing what I love.

This Friday we also have an event called “Bigger Than Basketball” that is a combined effort between CSU and UC Health to honor certain cancer patients during the CSU men’s basketball game. One of the players (Isaiah Rivera #23) will wear my name on his jersey and they’ll do a little halftime special to honor 14 cancer patients from UC Health. I was fortunate to meet those patients as well as the team and coaching staff over Zoom this week and they all seem wonderful. I was asked to do a little interview before the game as well so that should be a lot of fun (and my sister gets to join)! I feel really honored and grateful to have been nominated for this event and it’s definitely been a welcome distraction and something to look forward to! We are excited to be there in person and get to know everyone. Go Rams 🙂

Bigger than Basketball team and patient meet n greet

Ok, that’s all I can think of for now. Thanks as always for your continued love and support; I truly couldn’t get through this without it. Sending love and doggie kisses (and happy post-heavy-hitting-chemo vibes) to all of you!

A loaf in his natural environment

8. Heart Times

Welcome back! It’s been a minute; my apologies. The last 8 weeks or so have somehow both crawled by at a snail’s pace and blown past faster than Micahl J Vegter on his rollerblades. I had an infusion today, so I know that between the steroids and frequent chemo-induced trips to the bathroom, I’ll likely be painfully awake for the foreseeable future. Therefore, I am taking advantage of this opportunity to write some updates and fill people in on the latest and greatest along this horribly fantastical and totally crazy cAnCeR jOuRnEy.

In no particular order of importance:

1. I have something weird and new attached to the inside of my heart. I’ve now had three “regular” echocardiograms (ultrasound of the heart from the outside), one trans-esophageal echocardiogram, or “TEE” (they put me under and slid a tiny camera down my esophagus to take photos of my heart), and a heart MRI to analyze this mysterious being living inside my right atrium. The right atrium is the location where my port line enters my heart and delivers the chemo drugs to my bloodstream. They thought it was a blood clot at the first “mid-chemo check-in” echo about 6 weeks ago, so they infused me with a “clot-busting” medication that did nothing (the clot was still there at the time of the repeat echo a week later), so they scheduled me for the TEE which happened two weeks ago.

I went in last week for a follow-up with my cardiologist after he reviewed the images from the TEE, and it looks almost as though the tip of the catheter might be rubbing up against the wall of my heart every time it beats, and this might be causing irritation and scar tissue to form along the wall. However, he still couldn’t tell for sure if it’s potentially a mass or a clot, so they had me go in for a heart MRI so they could get more detail on the shape and size of it. Results of the MRI showed that there is something with a stalk (it looks like a mushroom) adhered to the wall of the atrium, and the cardiologist who read the MRI reported that they suspect it is made up of tissue rather than a blood clot. So this wasn’t exactly the news I was hoping for. However, my cardiologist and oncologist agree that it would be very odd for a cancerous mass to grow within a span of just a few months right in the location where the port line is spewing cancer-fighting drugs into my heart, so they are still hoping that it’s either a really dense clot that looks like tissue or a benign tumor of the heart called a myxoma. If cancer metastasizes to the heart, it is normally to the outside of the heart, and my oncologist has never seen breast cancer metastasize to this area, so we are all still hopeful that it’s not cancer in that mushroom. It still is a really frustrating and unnerving part of all of this, but for now the best we can do is monitor with echos every 2 months until I can get my port line out in about 9 months when I am fully done with the chemo infusions. If it grows during that time, we will likely have to go in surgically through my ribs to remove it. But for now, we will focus on continuing the chemo, staying on blood thinners, and prioritizing the breast cancer over addressing the heart issue directly.

2. That brings me to some news I received today that was also kind of unexpected, but good to know sooner rather than later. My oncologist can still feel the lymph node in my armpit, and due to this and the size of my tumors at time of diagnosis (although they are shrinking quite a bit), she suspects I will still have residual cancer at the time of my double mastectomy. This is not uncommon, especially when the cancer has spread to the lymph nodes. I was expecting that, but she did also mention that if we do find residual disease at the time of surgery (if my lymph node biopsy comes back positive that day), I will have to continue a type of chemo every three weeks by infusion for about another 9-12 months. Because of this, I have to keep my port line in for the duration of that therapy. So, every three weeks for about the next year, even once I am done with these initial 5.5 months of chemo, I will be getting three drugs- Herceptin, Perjeta (or “HP”, which I currently get with the Taxol) and Kadcyla (the chemo drug), via my port. I don’t know why, but I had been thinking the Kadcyla was a pill and that I could get my port out at the end of these first months of chemo and just get the HP as an injection rather than IV. I’m not stoked about this info, but I’m glad I know it now and can somewhat change my expectations for a timeline. This also means that my reconstructive surgery and hysterectomy will likely be farther down the road- I was hoping for next fall, but it’ll likely be closer to spring 2023. This is something I’ll have to figure out with my vet school clinical year schedule once I know more about how much disease remains post-surgery.

3. I met with my breast surgeons down at Anschutz over the past few weeks (2 of them) and I love them and we have a new surgical plan. They don’t think it’s necessary for me to do the latissimus dorsi surgery, since they think my capabilities for healing will overall be pretty good, so we are going for regular double mastectomy and removal of whichever lymph nodes need to be removed rather than involving my lat muscle. The surgeon I am going with said that it’s a great surgical option as a last-ditch effort for those who really need it, but it’s a bigger surgery and involves taking a lot of that muscle out, and he’d like to avoid doing it if we can. So I am happy about that. So, double mastectomy it is. At the time of surgery they will sample my lymph node to see if it still has cancer within it or not- if it does, they’ll take out more lymph nodes, if it doesn’t, they’ll take out just a few. Based on my oncologist’s news today, it’s looking likely that they’ll do the axillary lymph node dissection (removing more) rather than just the sentinel node. The bigger risks of taking more out are lymphedema and longer recovery time, so I’ll for sure be doing as much PT as possible, no matter how many they remove. They’ll be placing a little Savi (radio transmitter thing) into my lymph node in a few weeks so that during surgery they can be absolutely sure that they are removing and sampling the correct node in order to assess whether or not there is residual disease. My double mastectomy is currently scheduled for Wednesday, February 23rd at Anschutz in Denver. Prior to surgery, I’ll have 5 more weeks of the current chemo infusions, meet with the surgeons one more time to finalize the plan, another MRI done of my liver, another breast MRI, another heart echo, the Savi placed in my lymph node, and hopefully some time to heal a bit from the initial 5 months of chemo.

4. I met with an OBGYN at Anschutz to talk about having a total hysterectomy/oophorectomy (removal of my uterus, cervix, and ovaries). Because one of my tumors is estrogen-fed, my oncologist (and OBGYN) highly recommend having my ovaries removed. Unfortunately this means super early menopause which can lead to a number of issues down the road, including poor bone health, heart disease, anxiety/depression, sexual dysfunction, dementia, and some other things. However, these are all lower risk than the risk of my breast cancer recurring if I were to keep my ovaries. They are all able to be addressed through prevention, medications, and other methods of management. So, although early menopause really blows, I just have to do it to lessen my chance of having breast cancer again. Right now I am in “chemopause”, as the chemotherapy drugs have shut down my ovarian function, so I am going through some of the symptoms that women in menopause experience. I have hot flashes in the evenings and during the night, and have a really hard time regulating my temperature. I also had some exceptionally anxious/depressed days a few weeks back and couldn’t figure out why until my OB told me that the shutting down of ovaries and loss of estrogen are the root cause of depression/anxiety for most women going through chemopause. So they put me on an SNRI (Serotonin and Norepinephrine Reuptake Inhibitor) medication that is supposed to help address both the hot flashes and the anxiety after a few weeks of taking it. I am starting to see lessening in the hot flashes- they aren’t all night every night lately- so that’s been a huge help. Most days, if I get ok sleep and stay busy, I don’t feel the intense depression/anxiety tied to the hormone fluctuations. However, I think the meds will really help as I continue to move through these hormonal changes as well as the rest of chemo, surgery, radiation and beyond. The estrogen will be absent through the rest of this initial bout of chemo, and then they’ll put me on an estrogen-suppressing drug until I can have my ovaries removed at the time of reconstructive surgery, whenever that may be.

5. Now for some GOOD news…Brandon and I closed on a cabin just outside of Breck last week! We are beyond excited. It’s in an awesome area called Blue River that is about 10 minutes’ drive from downtown Breck, but removed from the chaos and up a fun winding mountain road. It has a view of the forest and Quandary Peak, one of our favorites. It’s 3-bed, 2-bath, has a hot tub and a fire pit and tons of potential to be an amazing space. We are getting it all spruced up and ready to rent out on AirBnB hopefully by spring. We’ll be able to enjoy it half of the time and rent it out half of the time. I’ve been doing a lot of research on running a successful AirBnB, Brandy has been super busy getting all the inspection stuff addressed, and we have been planning some cool bathroom, kitchen, and fireplace remodels. I am super excited to enjoy cozy cabin nights, tons of snowshoeing, skiing, biking, and hiking, sharing it with friends and family and making lots of awesome memories there.

Cabin Lyfe 🤍❄️🤍

6. I spent a wonderful few days this past weekend with my family (and Brandy) celebrating an early Christmas at a cabin in Granby, Colorado (near Grand Lake) where we had lots of fun cross-country skiing, having snowball fights with shields, sledding, running around with the pups in the snowy yard, and playing lots of Monopoly Deal. It was a week of feeling pretty good with decent energy levels and only moderate side effects, so I was able to enjoy the activities, albeit at a slower pace than usual. My family was super understanding of my nighttime exhaustion and the need to get to bed at 8 pm rather than staying up for family games, and they even fanned off my bald head with placemats when I’d have hot flashes during card games 🙂 My nephews were really sweet, even when seeing me bald and lash-less, and the night I wore my wig for dinner my youngest nephew asked in astonishment, “Whoa! How’d you grow your hair back so quick?!” I had him tricked, if even for just a few seconds 🙂 It was a lovely getaway and a welcome distraction from the current cancer patient existence.

Whew- if you’re still reading this, thanks for sticking with me. It’s hard to remember all the fine details, feelings and emotions over the last few months as I write this because I feel like every week is somehow so much the same but yet so different based on side effects and new information that scans and tests bring in. Some days I wake up and feel like I can handle all of this, and some days I feel a crippling fear knowing that my life is changed forever. Cancer and the myriad of ripple effects that it will have both physically and emotionally is still something I grapple with on the daily. As surgery gets closer, I feel more and more anxious about losing parts of my body to this disease and harboring the scars and residual pain that will remind me of it for the rest of my life. As side effects wax and wane, I feel the frustrations of losing control of my body and not knowing what to expect from one day to the next. I am trying to walk as much as possible, meditate every day, do yoga when my body is up for it, continue acupuncture and oncology massage, and have met with an integrative oncologist to discuss natural supplements and options that can aid in managing chemo side effects, early menopause, surgery recovery and radiation effects. I managed to finish my Spanish for veterinarians class with an A and absolutely loved the course, so I am signed up to take the next two installments of the course over the coming semester. I still try to work whenever I can, and the company I work for continues to be incredibly patient and supportive and understanding. Brandon and my family have been there for me every step of the way, and continue to dole out unconditional love, even when I appear at the breakfast table looking and feeling like a naked mole rat with a bloody nose.

So I let myself feel the crud and sit with the darkness when it happens, but I continue to be grateful for all of the support and love that I feel every day. And of course, taking care of my dogs and my hopes for completing vet school and helping more animals after this sh*t is over gives me a reason to get up and get moving every day. Sending cozy COVID-free holiday vibes, love, and doggie kisses to all of you!

7. Let’s not “Walk It Off”

Hello out there! It’s been some time since I’ve posted…so many things have happened (I’m pretty sure I say that every time I post, but really this time)! I have lots of updates- some cancer related, some family-related, all wacky and weird.

But first, let me start with a story.

One time, I pooped my pants. Well, technically I pooped my soccer shorts. This was the most embarrassing moment of my life. And now I’m writing it on a public blog that everyone from my 5th grade teacher (Hi Mr. O) to my boyfriend’s parents (Hi Jim and Jane) read. So, that’s uncomfortable. But hey, I’m trying to be as open as possible about this whole cancer journey, so why not just throw it all out there at once and let go of fear and shame. Anyway, back to the story…so I was at soccer practice, and my dad was the coach. I had just gotten over a stomach bug and it was nearing the end of practice and I felt the all-too-familiar feeling of, “Oh no. This is not going to be good.” I shuffled over to my dad and asked if we could end the practice a bit early since there were no bathrooms on that particular field and I wasn’t feeling well. He told me, “Nope- practice isn’t over yet. Walk it off.”

“Walk it off.” These three words struck a particular cord, as they had been a staple of sorts in the Vegter household throughout our childhood. This seemed to be the general mentality of the time and place in which we grew up. Maybe it was the Midwest upbringing, maybe it was my parents’ history of being strong, independent farm kids, maybe it was the “tough it out” mentality that continues to be pervasive in youth sports both then and now…I really don’t know. But whatever it was, it was the mentality that we were taught time and time again, and on this particular day, it was what I was told. So, I tried to walk it off. And about two minutes into my efforts toward walking it off, I found myself running full sprint to the nearest thinning pine tree, pulling down my shorts, and pooping myself. The worst part was that all my teammates’ parents were arriving to pick them up right as it happened, and I had to side shuffle my way past several of them to make it to my dad’s vehicle and shamefully get inside. My dad opened the driver’s side door, got inside, looked at me in disbelief, and, to the best of my recollection, said something along the lines of, “Wow, you really had to go. Sorry about that.”

I don’t tell this story to blame my dad for that incident, I really don’t. I could easily have bucked up and walked into the woods on my own accord and gone to the bathroom behind a much larger tree at an earlier time, but I decided to listen to him and at least attempt to walk it off and make it through practice. I could have helped myself in that moment more than I did, and I should have, but I chose not to. So this is not to place blame, but simply to tell a story as it relates to recent events, and to highlight the “walk it off” mentality that so many people hold which I believe can be to our detriment more often than not.

About a month ago, my parents drove out to Colorado for my second infusion. I don’t want to talk much about my infusion since it was not that eventful and to be honest, talking about anything related to infusion day makes me feel incredibly nauseous (as do most things these days). It was extremely kind of them to come out again and it is always lovely to spend time with them, whether it’s here in Colorado or back in the Midwest. However, this time we had a bit of a predicament. My parents arrived on a Monday evening, and we had my head shaved the following day after infusion day was complete. We went ahead with the head shave and all was well, but my dad unfortunately wasn’t feeling well so he stayed back at the AirBnB. As the week went on he waxed and waned, but overall just felt super crummy the whole time. He spent most of his time working in my garage space despite me asking him to rest since I knew his body wasn’t 100%. By the time Friday rolled around he had had a COVID test which came back negative but was still feeling very out of sorts- short of breath, intense lower back pain, confusion, fatigue. The doctor who had seen him for the COVID test attributed his symptoms to altitude sickness, which to some extent I agreed with, but this seemed more intense than your run-of-the-mill altitude stuff. After a few short discussions about symptoms which never really yielded much info, and he not appearing to be totally himself, I started to get pretty worried. When he started stumbling around in my garage and saying things that didn’t make sense, my mom and I tried to convince him to get to the doctor again. But in typical Johnny V fashion, he insisted he was ok and that this was all just altitude; the doctor said so; he’d be fine with drinking more water and some rest.

We had to get into a bit of an argument (ok, in reality, I had to threaten to call my sister and brother and have a family conference to convince him to go in) before he finally began to consider that this might be more than just altitude. I had to pull the “If you’re not going to go in for YOU, then please think of ME, because I’m immunocompromised” card before it seemed to sink in. My mom and I left to run an errand, and I think it was finally during this 20-minute time period that he felt extremely sick and ultimately realized that he was putting both himself, and possibly me, at risk. Thankfully, after calling a few urgent cares in the area and speaking with a very kind nurse, he finally conceded and said he would go in. Oh, but to be clear- “Only if they can get me in and out in 30 minutes. I don’t want to spend the entire day there.” I’m not entirely sure if this was all related to my dad’s mentality of toughing things out, or if he felt that being here to take care of me took precedence over any of his own health concerns, but either way, it basically took us four days longer than it should have to convince him to go in and seek help.

By the time I heard from my parents that afternoon, they were being admitted to the ER. The urgent care doctors quickly realized that my dad was not in a good way and needed some serious help. Once they got him to the ER and after a CT scan, an MRI, and bloodwork, they realized he had a horrible kidney infection, a kidney stone, septicemia, and brain edema. Read: REALLY BAD NEWS ALL AROUND. That evening he had emergency surgery to place a stent in the severely infected kidney, tons of IV fluids pumped to restore his kidney function which was at near-failure levels, and an immediate IV of Vancomycin, a heavy-hitting antibiotic reserved for septicemia and similar cases of severe infections. All in all, a terrifying evening and likely one that could have led to death had he not gone in that day.

I won’t go into details about the week and a half he spent in the hospital here in Fort Collins since so much happened and it all seems like a total blur now. In the grand scheme of things, all that matters is that he is ok. We are just so grateful that he is alive and that he had such amazing care while in the hospital. My mom has been with him every step of the way, asking the right questions, pushing for more answers, booking AirBnBs to extend their stay, and administering his IV antibiotics through a newly placed PICC line that will be in his arm for approximately 6 weeks total. My brother graciously drove my parents home to Minnesota when my dad was discharged from the hospital, so they have now been safely home for two weeks and Johnny V is healing up well. My mom is taking excellent care of him and he is resting as well as doing his PT, which is awesome. He had the stent and the stone removed from his kidney this past Thursday and all went well with that, so we are relieved.

I am super proud of my dad. I am proud of him for finally going in; I am proud of him for listening to the doctors and nurses; I am proud of him for staying strong and continuing to fight to restore his health. He is an incredible dad and he always has been. He and my mom have always supported us in every goal we set forth; they provided us with an enriching and safe and wonderful childhood; they raised us to be adaptive, resilient, kind, and honest people. But I won’t pretend I wasn’t frustrated with him when this all went down, and that I don’t worry about him. I won’t pretend that sometimes I fear his stubborn attitude and his lack of awareness around listening to his body and realizing he is not immortal. I won’t pretend that my siblings and I dread this happening again, and that his “walk it off” mentality may never go away. What I am hoping is that this is a lesson to all of us- to me, to my dad, to my mom, to my siblings, to our family and friends- to NOT just “walk it off”. To listen to our bodies, to take care of ourselves, to listen to others who care for us and are trying to help. I am so grateful my dad is here, and that we can look at this as one hell of a giant teaching moment for all of us, but dammit Johnny V, let’s not walk it off.

Ok, onto less story time and some cancery things instead…

In other news: nausea is a big, fat, b*tch! But also- thank goodness for nausea meds. If I didn’t have those I think this would be a lot more miserable (although nausea meds = constipation which is also no bueno…so actually now that I say this I’m not really sure where I stand on the matter). I’m continuing to try to stay grateful for the moments that I am not nauseous, the fact that I haven’t had horrible mouth sores yet, and that no rashes have reared their ugly heads yet. Speaking of ugly heads, I am getting more and more patchy by the hour. It’s crazy how much more alien I look as my buzzed head turns into a smooth gleaming scalp. I was fortunate enough to see Brandon’s parents three weekends ago for dinner before I got too patchy, and they were amazing about being comfortable with me going to dinner with a buzz cut. It was also his birthday weekend so we met up with a few friends which was great- it felt good to be able to go out in public without too much baldy shame. But now as it gets colder and my scalp becomes more bare, I am rocking the winter beanies every day. I can’t quite see myself doing the full gleaming scalp bald thing, so winter is a good excuse not to feel like I have to. And let’s be real, I am loving wearing my periwinkle wig from time to time.

Two weekends ago, a dear friend who owns a beautiful cabin in Breck generously offered it up to us for a little chemo getaway. It was much-needed and so wonderful. Think wood-burning oven, movies, apple cider, and hikes with views on views on views (albeit the hikes are much slower than usual these days). We brought Meli and got sitters for Frankie and Waldo (thanks Danni and Paul!) and because of that, it was just the relaxing retreat that we were hoping for. My sister joined us for the first night which was wonderful- she came back out for my third infusion and has been spoiling me with continued work on the garage, great homemade meals (when I can stomach them), and sister time.

Some more very recent news is that my parents closed on a house in FoCo! Through all of the hospital chaos, we continued to look for cute little cottage homes in one of their new favorite cities, and we found success! The adorable little yellow home is named the Buttercup Cottage, and it’s right here in Old Town next to the ol’ Poudre. We love that it’s quaint and sunny and has lots of coffee and river walks to come whenever the ‘rents or sibs are in town visiting.

I have a few other big updates but a few things are still TBD, so I will wait on those for the next post. All in all I am surviving chemo pretty well, and although things have gotten a lot harder over the past two weeks in terms of side effects from this 4th infusion, I am hanging in there. I have noticed a big drop in my cardio capacity over the last few weeks and a lot more nausea, fatigue, and bone pain, so I am really looking forward to getting through the next week of AC and moving onto Taxol/HP (Herceptin/Perjeta- two drugs that target the HER2+ protein). We had our ChemoTeach for Taxol last week (sweet Brandy Boy was with me for every minute of it) and it sounds like the worst of the Taxol/HP will be neuropathy in fingers and toes, possible rashes all over, some creepy nailbed stuff, and diarrhea. Although that all sounds highly unappealing, I will be super happy to move on from the constant nausea. Tomorrow I have another echocardiogram to check my heart and ensure that it is still functioning well, so I am hopeful for good news.

I hope everyone out there reading is having a lovely week, and waking up telling themselves a few things to be grateful for each and every day. Sending love and fall doggie kisses to all of you (and HAPPY HALLOWEEN)!

6. Bald and…Breezy?

Hello everyone! Thanks for coming back to the cancer party. I hope everyone out there in the world is doing well and enjoying the transition from summer to fall. I know we are around here…Colorado can CHILL on the summer temps, please. My new photosensitive skin would really love that.

So, the latest around here is that I am now on Cycle 2 of the first half of my chemo adventure, that which consists of the AC drugs. My parents are in town again so my mom came with me to this second infusion which was nice. She got to meet another great nurse at the center who wasn’t quite as spunky or sweet as Colleen, my first nurse, but was kind and patient nonetheless. The infusion went about the same; they gave me anti-nausea meds and steroids as premeds for about an hour, then some IV fluids, and then the Red Devil followed by Cyclophosphamide. All in all it took about 4 hours from start to finish. My oncology nutritionist was able to pay us a visit during the infusion to check in on side effects and talk about what foods I’ve been able to stomach and what aversions I’ve had. The eating thing has been interesting- some days I can eat the exact things I normally would, and other days the thought of even one bite of yogurt or a sandwich makes me want to vomit. I’ve mostly craved salmon, my usual salads with hard boiled eggs, chicken sausage, spinach, etc., caprese salad, and Subway for some very odd reason. Tomatoes and salmon have helped cut the nausea more than anything else. No idea why…

I haven’t yet had nausea strong enough to warrant taking all of the meds they prescribed to me, so that’s been good. It’s been more of a chronic, mild nausea that seems to well up at certain hours of the day. What helps me the most is always keeping a small amount of food or protein in my stomach, working out, and taking walks outside for fresh air. I have also learned to eat a small amount of food even when I don’t feel like it, because that usually helps me feel better. Fatigue usually hits around 3 pm and I need a nap if I am to function that evening. I’m getting better at forcing myself to lay down even though I’d rather not. Each time gets a little bit easier.

The other thing that’s new around here (and a lot more exciting than nausea) is that I am officially bald! Well, technically not yet totally bald, but mostly there. I have a VERY short buzz cut at the moment. I’d say it’s a pretty easy breezy style.

We tried to make it “fun” (if any of this can be considered fun) by having a champagne and shave party at a local salon on Tuesday evening, the night of my second infusion. The reason I scheduled it for that night is because I was told that my hair would start to fall out probably around Day 14-21 of chemo, which would have been this week. Since we have always had a thick head of hair, I hesitated to go forward with the shave, hoping I might be able to hold onto it a little bit longer than expected, but sure enough, I woke up this past Monday (the day before the shave) and my hair was pretty much coming out in clumps when I would comb it. So, it was the right decision to have it done when I did. I was hoping to maaaybe hold onto it until Brandon’s birthday next weekend, but turns out his birthday present will be a bald, breezy girlfran.

My parents, sister, brother, boyfriend, and three close vet school friends were there. I brought champagne, we popped a bottle, and my new cancer-hair-help-girl Alex went to town. She let me cut off a portion of my long blonde (and a little pink) locks to save (which I now have hanging in a pink bow on my fridge and honestly it’s a little creepy). We also took a few minutes to check out how I’d look as Skrillex (a DJ), and to be honest it was kind of a lewk. Definitely not totally opposed to the one-sided head shave with long hair on the other side after this is all said and done. Anyway, after a few minutes of laughs and getting the best Skrillex angles, Alex surged forth and we completed the job. A few light tears were shed but it was mostly just, “Wow, come look at this” and “I can’t believe I’m getting my head shaved” comments with some laughter mixed in (also mixed commentary on Britney Spears and her baldy episode back in the day, of course). Once it was all said and done, we took some photos, experienced a few more subtle dewy eye moments, and stepped out into a cool fall breeze on a baldy head. Truth be told, as hard as it is to be forced by cancer into losing my hair, being bald the last few days hasn’t really bothered me. I am super lucky to have gotten a bunch of cute hats from friends and family, and not having to do my hair or worry about putting it up for workouts or errands has actually been pretty nice. Of course I miss it and wish things were different, but it’s been a lot less emotional than I expected. My badass breast-cancer-surviving friend Erin texted me the day of, when I had mentioned to her that my hair was starting to fall out, and she said, “I learned that in many cultures women shave their hair as a symbol of beginning a transformation!” Coming from her it means a lot more than from someone who has never had to go through this. So, I guess here I am, beginning a transformation.

That’s pretty much all from the cancer chronicles for now. I am continuing to learn how to best deal with side effects and trying to get into a solid daily routine that I can tweak as needed when side effects get worse over the coming months. Right now I am keeping busy with dog walks, oncology appointments at the cancer center such as acupuncture, massage, blood draws, recheck visits, etc., a few hours of work and a few hours of class per day, time with family when they are here, yoga or some other type of workout, bedtime meditation, and eating well. I was also fortunate enough to get to my one of my favorite places on earth- Red Rocks- with some of my best friends last weekend prior to my second infusion to enjoy one of our favorite DJ duos and lots of dancing. My dear friend Nick, who is an amazing photographer in San Diego, even brought up some lighting and equipment to do a pre-cancer journey photoshoot for me the day before the show. We found the most amazing space in Fort Collins and had a blast! More on that to come in another post.

Thanks, as always, for your unending support and well wishes. Sending love and doggie kisses to all of you!

5. I’ll take the Red Devil with a side of nausea, please

Hello again! I’m 5 days into Cycle 1, Week 1 of chemo. The lovely, wondrous chemo.

I guess it makes the most sense to start from the top with Infusion day 1, which was was quite the adventure. My sister was with me and we started bright and early with a 7:30 am check-in to the Cancer Center. I made sure Portia was all prepped and ready with lidocaine cream 45 minutes before check-in and I even adorned her with some lovely Glad Press n Seal, as recommended by the oncology nurses. When we arrived they brought me back to prep Portia, which basically consisted of a nurse telling me to take a deep breath as she put the needle into the port (it didn’t hurt at all since I was all numbed up). She then used a bunch of tape and gauze to keep everything in place and voila! I was ready for action. They drew blood for my labs to ensure that levels were ok for chemo drugs, and then sent me upstairs to check in at the infusion desk.

The infusion center is big, but not overwhelmingly so, and has probably 50 or so chairs spread out in two very large rooms with a huge nurses’ desk in the middle. They have chairs with massage and heat, provide warm blankets, there are snacks and coffee available…really pretty nice. I had a wonderful nurse, Colleen, who treated us like friends and gave us a primo seat next to the patio so we could look outside all morning and take in the trees and sun. Colleen explained to us that she’d be administering the premeds while we waited for labs to come back prior to giving the actual chemo drugs. She also reassured me that any time I come in I am allowed to feel all the feels- happy, sad, mad, scared, etc. She said sometimes people come in and they are ready to relax and enjoy their four hours in the chair, and other times people are feeling terrible and just need to cry and be angry. All the feels are welcomed. So that was nice to hear, as I’m sure there will be some infusions down the line where I am just dreading being in those chairs, knowing what’s to come afterwards.

After giving me premeds which consisted of steroids to help with energy and pain, anti-nausea meds, and fluids to help with supportive care, she printed out my labs and we went over the parameters together. Most of it looked normal (including my lipid panel, which is great because we were a little worried after seeing the mild atherosclerosis on my coronary artery) except for my white blood cell count, which was fairly low. These are the cells that help to fight infection, and unfortunately also the cells that get annihilated by chemo and why chemo patients are immunocompromised, so we will have to keep a fairly close eye on those little buggers as I continue to get infusions. They were at a level that was ok to receive my first infusion, and luckily because of the Neulasta patch which I will talk about below, I’ll have some help in maintaining those numbers at a (hopefully) decent level.

Once labs were cleared and premeds were finished (took about one hour), she told me we were going to start the first of two chemo meds for that day, Doxorubicin (aka Adriamycin, aka “The Red Devil”). I had no idea Doxorubicin was called this until Colleen told us, and let me tell you, after a few days on it, I understand why it has gleaned this name. This drug is a heavy hitter in that it really depletes white blood cells and causes a number of side effects. For me, it’s mostly caused nausea, fatigue, and dry mouth so far. It also makes you pee red for the first day or so, which of course is a bit alarming, but luckily they warned me. The craziest part about getting Doxorubicin was that Colleen came out holding it while dressed in a full hazmat getup and adorning a plastic hazardous waste bag for it’s disposal. So, needless to say, the first drug that went straight into my heart vein is not exactly benign. BUT, this is what I need to save my life, so I welcomed the little devil into my life the best that I could.

After Doxorubicin came Cytoxan, or Cyclophosphamide. This drug took longer to administer; about one hour in total. This drug causes many of the same side effects as Doxorubicin and a few other fun ones that luckily I haven’t experienced yet (ex: bladder irritation). Neither of the drugs hurt going in; just the occasional feeling of my heart rate increasing or having to work harder than normal due to the increased amount of fluid being pumped into my body. Overall though, really a smooth process. I was in the chair for a total of about 4 hours on day 1, and we were out of there by 11:30 am.

On a steroid high from the premeds, my sister and I decided to hit up our favorite local nursery to get some indoor plants for the new garage workout space. During our visit to the nursery I got a call from the genetics counselor with the results of my full genetics panel, which were negative. All negative. So, still a mystery as to why this happened to me. In my brain, it’s just science. There is a certain percentage of creatures on this planet who will have wonky cells that turn into cancer, and I just so happen to be one of those creatures. So, I guess I’ll make the most of it and try my best to beat it so that I can do something good for the world and keep enjoying life after all this is over. I don’t feel like this is a test, or a punishment, or anything like that. It’s just science. It’s a huge bummer part of science, but life is weird and here we are.

Once the steroids started to wear off late afternoon, the nausea set in. Luckily they prescribed me 3 different types of anti-nausea pills that can be taken at 4-hour intervals during the day in addition to the anti-nausea meds that were given IV, so I started those night 1. Eating small, high-protein meals also helps with the nausea, although I will admit the first two days I had basically zero appetite. Luckily my sister is a cooking wizard and made a bunch of delicious meals from the Living Kitchen Cookbook and the Cancer-Fighting Cookbook that I was gifted by my wonderful friends Danni and Bri (highly recommend both of the cookbooks)! I managed to eat about half of my normal meal size nights 1 and 2, and snack on some good stuff in between when my stomach would tolerate.

We stayed busy with garage stuff, yard stuff, trying to keep up in Spanish class (which I am loving), figuring out more details with school and medical stuff, more appointments (including a wig appt!), and some time exploring FoCo and hiking the canyon together while I was still feeling good. I did have a brain scan last Friday, which came back just yesterday as clear for metastasis, so that of course was awesome news. They did find a small cyst or benign tumor on my pituitary gland (the gland that regulates some hormones, sleep cycles, etc.), but as of right now it is considered another incidental finding and something we will check with another MRI in one year. My oncologist didn’t seem too worried about it so I won’t be either. So- yay for a clear brain! Well, until chemo brain sets in.

As for side effects, days 3-5 were definitely the hardest for me during this first round. I would say overall the nausea has been mild to moderate, sleep has been ok beyond having to wake up to pee constantly from all the fluids I’m trying to drink (recommended to stay super hydrated), dry mouth has been super annoying but not terrible yet, and fatigue is there but managed so far by a daily nap late afternoon. Napping is a totally foreign concept to me, so that has been tough since I hate wasting time during the day. But as my counselor and many others have said, it is not wasting time when your body desperately needs it. So, I am trying to lay down for at least 45 minutes every day when the wall of exhaustion hits me, even if I can’t fall asleep.

Since the nurses and my oncologist told me that AC infusion effects are cumulative, I am trying to enjoy the things that I enjoy as much as possible right now before rounds 3 and 4 hit me like a ton of bricks. Apparently round 2 is usually still somewhat mild to moderate, and then rounds 3 and 4 people don’t really bounce back during the “off” week of chemo (which I am in right now since it is day 6 from my first infusion and I am doing chemo every other week for these first two months).

As for the Neulasta patch, it’s a pretty cool little guy. Colleen attached it to the back of my arm and set it up to release the drugs 24 hours after application. It hurts like a B when the needle first pops in there (they say “rubber band snap” but it was more like “snapping turtle beak taking a small chunk of your skin out” snap), but after that it doesn’t hurt, even when the meds are dispensing on Day 2. It stays stuck to your arm or stomach for the first 27 hours or so, and once the drugs are in you can remove it. This helps stimulate white blood cells from the bone marrow so the numbers don’t drop too low. In turn it can cause bone pain in the long bones, but for reasons I mentioned in a previous blog, Claritin works to combat the pain (which I still think is super cool and weird). No bone pain yet beyond one or two small rib/back pangs that I’ve noticed.

So, all in all first round has gone pretty well. The low-grade nausea at all times is definitely tiring, but I am trying to enjoy still having an appetite and feeling not constantly nauseated while I still can. I know it’s likely to get worse, so I just do what I can to convince myself I’m not nauseous and eat food whenever I am up for it.

Brandon took me out to a nice sushi dinner the other night at a new place we hadn’t tried yet (and yes, I am technically supposed to try to avoid sushi while on chemo, but I was craving it so we thought what the heck, just this once…) and it was SO delicious and totally hit the spot, so that was really nice. He and I are just trying to savor the good moments whenever we can, since we know there will be lots of tough ones ahead. Also, he is amazing and has helped me a ton with the garage project, managing appointments, keeping track of calendar items, telling me that he’ll still love me when I am a bald swamp basement monster, etc. I love him so much (hi B).

I’ll be losing my hair next Tuesday the 28th! I am having a “Champagne and Shave” gathering at a local salon that does head shaves, wigs, etc. for chemo patients. The woman I am working with there to get set up with a wig is amazing and she is coming in after hours to help me go bald so I don’t have to deal with the horror of chunks of hair falling out during chemo round 2 next week (apparently it happens in 1-2 days which sounds horrendous- gimme the buzzers). So- stay tuned.

Sending love and doggie kisses to each and every one of you. PS- Meli’s birthday tomorrow! My clown is 6!

4. Literal Side Boob

Welcome back! As always, thanks so much for caring about me enough to tune in and read about the latest happenings. Today is the last day of my life without having gotten chemotherapy. So that feels weird. But it also somehow feels a lot like any other day. My sister being here this week has helped a lot with that. We’ve been staying busy working on the zen garden (I love it so much and she’s put SO much work into it), working on the workout garage space (also love it so much and again, she and my parents have put so much work into it), going for river and city park runs, enjoying funky little coffeeshops, catching up on class and work, going to doctor appointments, sharing fresh peaches from a farmstand, and spending too much time perusing plants at the nursery. Pretty much a perfect sisters’ week (well, minus the wine we would have at one point been sharing, but these days alcohol is certainly not the priority).

So I’m sure some people are wondering what the strange title of this blog entry means- it’s referring to the type of surgery I will likely opt for, which I’ll explain below. I had to steal it after my hilarious friend Ryan sent it to me after he learned of my intended surgical plan. I had my third of five meetings this morning with a breast surgeon, and I think I finally have some clarity about the route I’m going to take. The reason there are so many meetings is because with breast cancer, you essentially have a “deconstruction” surgery and, if you choose, a “reconstruction” surgery (and potentially a few in between for a variety of things). Because I am young and hopefully still have many years ahead, I will choose to have reconstruction done.

So, essentially you meet with a “deconstructing” surgeon, then usually meet with another for a second opinion, and same for the “reconstructing” surgeons (I’ll just type decon and recon from here on out because those words are far too long to continue typing over and over). So far I have met with a decon surgeon down at Anschutz who I really liked, but who will still be on maternity leave when I am likely to need surgery (late winter), so they’ll be referring me to another decon surgeon there to meet soon. I have a meeting with a recon surgeon down at Anschutz in late October, and I have met with both a decon and a recon surgeon here in Fort Collins at the Cancer Center. They essentially work in tandem, each specializing in different parts of the initial surgery, and then the recon surgeon comes back and does the later revision surgery alone. As I mentioned last week, it’s absolutely wild some of the things they can do and parts they can use for reconstruction. I’ve included a few photos here of cartoon depictions of the different areas they can get tissue, muscle, and fat from to relocate to the breast region to aid in volume and also in healing power.

In my case, since I am most likely opting for a double mastectomy for peace of mind that this doesn’t occur down the road in my right breast, and because I don’t plan to have biological children so I am not worried about breastfeeding, I have a few options that fall under the “immediate reconstruction” category:

  • I could have both breasts removed with no autologous tissue put into either side (autologous tissue just means tissue, fat, or muscle from your own body), expanders put in for a few months, and then revision surgery to replace the expanders with implants 3-6 months after the initial surgery.
  • I could have both breasts removed with autologous tissue put into just the left side (cancer side) from my latissimus dorsi muscle (aka the big side/back muscle used for things like tricep dips and pulling- known as the “lats”), and have the right side removed but instead of using the lat on that side, they use something called “ADM”, or acellular dermal matrix, as replacement for the breast tissue that’s been removed. Both sides would have an expander and later be replaced by implants (same time frame as above).
  • I could have both breasts removed with autologus, latissimus dorsi muscle/tissue used on either side, expanders placed, and implants replacing the expanders at the same time frame as above.
  • I could also go the route of using stomach fat or gluteal muscle/fat instead of my lat muscle, but the doctor said I’d have to eat a ton of pizzas before that would be possible and he didn’t recommend that during chemo treatment…plus I’m not really sure how I’d feel about taking muscle and fat off my bum to stuff it into my boobs (sorry for the visual, but hey, it’s weird and cool so I had to mention it).
  • Side note: all of these would include removal of either just my “sentinel” lymph node or removal of multiple lymph nodes at the time of surgery. They do a biopsy of my node during surgery, and if it comes back positive for still having cancer in it, they’ll likely remove more- probably between 5 and 20- this is called an “axillary lymph node dissection”. If it’s negative for residual cancer, they then just remove the main affected lymph node (the sentinel) and do more radiation after the fact to try to reduce to potential for recurrence in any nodes.

There are a few advantages to the second option in italics- using my lat muscle/tissue on the left and the ADM on the right- the biggest one being related to radiation. Since I have to receive quite a bit of radiation to my left breast and axillary region for 6-7 weeks following the first surgery, and radiation really messes with skin and underlying tissue (think fibrosis, scarring, tightening, burns, etc.), the skin desperately needs good vasculature for blood flow and oxygen to the tissues to help it remain viable and heal. So, the lat muscle/tissue in that region really aids in healing and viability, and it lessens the chance of major damage to that area. Since my right breast won’t need radiation, it’s not necessary to do the lat muscle thing on that side. The ADM on that side will provide plenty of replacement for the breast tissue, and as long as my body allows it to heal as it should, I won’t need the enhanced support that the left side will need to aid in combating the forces of radiation.

As for the negatives, it obviously affects my lat muscle on the left side, and it’s a bigger surgery to recovery from, but he did say that many active, strong people who have this done go on to have minimal trouble with the affected side as long as they continue PT, working out, massage, acupuncture, etc. They do remove 1/2 to 2/3 of the muscle to move it around front, which again, is totally wacky, but he said people do really well. And it sounds like I’d have a really cool 23-cm scar just behind my current Western Hemlock tattoo along my left side, so he said I’d just have to get a second tree tattooed back there (which of course I will happily do, and my sister will get another matching tattoo, and we will finally convince Micah to get his matching sibs tree). So, I may never be great at tricep dips on the left side, and my upward dog may always be a bit crooked, but if it means better healing potential and reduced effects from radiation, I am down.

Extremely nerdy photo of Alyssa and I showing off our matching western hemlock tattoos…although you can’t really see mine with this swimsuit on, the 23-cm scar would be just behind this and slightly diagonal.

So, I’m probably going with the second option above. And in that case, I would have a literal side boob (for those of you who don’t get it, just know that my boob won’t actually be on my side).

One last thing to touch on is the different options for nipples- so many options for nipples! I couldn’t believe it. There’s nipple sparing, nipple-taking-away, nipple tattoos…so cool. A lot depends on whether the tumors are close enough to the nipple to determine whether it is “oncologically safe” to keep them and have them put on during reconstruction, or if there is a chance that there are cancer cells too close to the nipple that it’s safer to remove them completely and replace with nipple tattoos or not at all. I am still undecided on this part of it- I’ll likely just go with whatever the pathology report says when surgery time is closest. If it’s safe, maybe I’ll keep the pink ladies; if not, let’s toss them and I’ll get some sort of really cool half-sleeve-extending-across-the-chest tattoo (or maybe some amazing nipple tattoos).

Whew- so much info again. I hope this made some sort of sense. I think the biggest thing that’s been hard to stomach when meeting with these surgeons is that my reconstructive surgery (probably will take 3-4 different surgeries by the time it’s all said and done) will definitely extend into a year and a half or even longer from today. I likely will have to get the first big surgery in late winter- March or April 2022, then heal, then radiation for 2 months, then start my clinical year up again in the fall, get a few months of rotations and externships in, and then somehow figure out how to take time off to have reconstructive surgery done in the middle of 4th year (the “new” 4th year). So that’s going to be pretty rough, and I’ll still be on some level of chemo at that time (that’s a topic for another blog entry), and I’ll also be deciding whether or not to have a hysterectomy (uterus removed) during that timeframe as well. So, it’s a lot. But it’s also great to have options, and it’s wonderful to have so many people around me who know what I’ll be going through and who have been and I’m sure will continue to be understanding and patient as I navigate these decisions and what they mean for my future.

Ok, that’s all for now! Chemo starts tomorrow- my infusion appointment is bright and early and we will be there most of the day, so I’m sure I’ll have many more updates to come soon! Sending love and doggie kisses to all of you.