Summer Blog #2

Hi everyone and Happy Monday. I have found myself writing on Monday mornings and decided I’d start writing and publishing every Monday for a few weeks.

Blog Goals

After I get you all caught up on all things Julia and cancer (such a riveting read, I know), I’m going to start a new blog series. The new series will be on what to expect and what helped me throughout each stage of my treatment, such as posts on:

• Chemo,
• Surgery,
• Radiation,
• Maintenance drugs,
• My most recent surgery,
• What it means to be a survivor,
• Changes I’d love to see made to the language of cancer care, and so much more.

I want to do this, because on the cancer Facebook groups, newbies are always asking for advice about these things. This way I have a place to send them that I trust and I don’t have to write it out each time.

I want to be supportive and offer my advice/sage wisdom when I can, but it’s exhausting to retype every single time and I simply don’t have that type of time. Those posts might be a little boring for those who have been along for the whole journey, but I’ll warn you when those posts come out, so you can skip them if you want. 

Where We Left Off Last Time

Anyway… We left off at just returning from Mary’s Place by the sea. Once I got home, three things happened before I went in for my summer-ending pre-planned lymphovenous bypass: 1) Mitch went on a work trip, 2) I found a love of e-biking, and 3) Oliver started his supervised therapy dog visits. 

Mitch’s work trip was a team-building trip to Minneapolis. The company he works for is rather small (about 10 workers), but mighty. Mitch mostly works from home (which has been a blessing through all of this), so having him go on a team building trip was pretty cool.

Honestly, I welcomed the time alone. Not because I don’t love Mitch, but because I’m fiercely independent and enjoy time alone to reconnect and find myself in the solitude of silence. Plus, I think it’s wildly important for caregivers and relationships in general to spend time apart. Absence really does make the heart grow fonder.

Wander Women

Besides sleeping in the middle of the bed and enjoying trash food while Mitch was away, I also attended an event put on by Wander Women. Wander Women is a group that originated out of Des Moines Iowa and recently started an Omaha chapter. The group is a social club of sorts that is focused on connecting women who love the outdoors through activities led by lady experts and incorporates all skill levels. Everyone feminine identifying is welcome. 

One of the events I went to while Mitch was gone was a bike shop tour and e-bike ride on the Field Club Trail. I had been wondering how I would find an accessible way to bike in Omaha after I fell in love with it again on the Jersey BoardWalk, and this event seemed like a good thing to try out. I say “accessible,” because Omaha is full of hills, wild drivers, and is not bike friendly. As I learned at the event, there is only one dedicated bike lane on the city streets in town. Good old Nebraska is always behind the times! 

Literal safety in the streets aside, I was also unsure how I could physically bike in Omaha, because of the extensive hills in town that require pretty strong lung capacity. Something I don’t talk about much is the fact that I have lung damage from cancer treatment. It’s something I don’t talk about often, because it doesn’t affect me too much and is (from what I understand) a mild case.

Lung Damage From Treatment

I have this mild damage because of the extensive life-saving radiation I received. Lung damage is normally a very rare side effect of radiation for breast cancer. This is because most breast cancer radiation is very targeted to just where the tumor was.

With inflammatory breast cancer (IBC), a larger area has to be radiated because IBC involves the skin. IBC also gets 5 extra rounds of radiation (or a “boost”) to the scar line, as that is where IBC most often re-occurs. The scar line just so happens to be right across the chest, hitting the lungs as well, resulting in again an increased risk for this typically rare side effect.

Luckily for me, my lung damage is very mild and doesn’t require extensive treatment on long term steroids. Unluckily for me I got this side effect at all. It typically only flares if I get sick, and then is pretty easy to manage in the grand scheme of things. I just go on an inhaler for a few weeks and am good to go. The other times it can flare though is if I am attempting extensive and hard cardio, like say biking up hills. Hence my intimidation.

I don’t want to be the yahoo, walking my bike all around Omaha, becoming a prime target for some distracted driver or road rage idiot to take me out. I didn’t survive cancer to be killed by an idiot! So when I got the email from Wander Women to try out e-biking in a safe environment, I jumped at the chance! Worst that can happen is I make a fool of myself or be bored. Best that can happen is I fall in love. 

I gathered up the courage to go to an event alone and headed to Ponderosa Bike Shop. I learned all about bikes and e-bikes at the shop tour. Then I only made a minor fool of myself when first mounting the bike and still fell in love! E-biking gives me the extra boost to navigate hills when I need to, but yet I still work up a sweat, and exercise these little old damaged lungs. It’s an absolute perfect exercise for me and makes biking accessible! It’s just super cool and I highly recommend finding one to try out. I also highly recommend any Wander Woman event! I made some new friends who also love the outdoors and found an environment that’s safe and free of judgment. A solid 10/10 as my friend Kelley would say. 

Science of Surgery

After spending my last few days of summer logging lots of hours e-biking all over Omaha, alas my fun was over, and it was time for yet another surgery. This time I was getting lymphovenous bypass, a very new microvascular surgical treatment for lymphedema.

Lymphedema is another side effect that is somewhat rare in the breast cancer world, but is more prevalent for IBC patients because of the extensive treatments and cancer involvement we have. While somewhat rare for typical breast cancers, I can’t think of a single IBC patient who doesn’t have lymphedema. As a reminder: lymphedema is a build up of lymphatic fluid in the lymph vessels that can cause swelling and increased risk of infection. That’s a rather simplistic explanation to this very complicated and annoying side effect. If you want more information read up on lymphedema here.

Lymphovenous bypass is a microvascular surgery. That means surgery is completed on the smallest of areas using microscopes. It’s pretty fancy and takes a highly skilled surgeon who’s received extra training in this, like Dr. Figy. In lymphovenous bypass surgery, Dr. Figy maps out which lymph nodes he’s going to use doing lymphatic mapping. Once he has mapped out what lymph nodes are working and which are not, he performs the bypass.

Using ever-so steady hands and microscopes, he attaches one of the small (size of a strand of hair), working lymph nodes, to a venule (or tiny vein) with the hope that the lymph node will eventually accept this new channel and start draining lymph fluid into this vein, reducing my lymphedema and making me a very happy camper. The results of surgery aren’t always instantaneous, as the body needs time to fully accept this new pathway and can take up to a year to see final complete results. Word on the street though is that Dr. Figy has really gotten quite good at this surgery and everyone is having pretty solid and positive results. 

Pre-Surgery 

Not one to typically complain about healthcare, I am going to here because I am a firm believer that if something isn’t being done well, people need to know so they can fix it. (Yes, I reached out to the Med Center already and told them all of this already. I’m here to tell you the story now too so you are well informed and know what to expect when receiving care there. I also hope by speaking up that it’s fixed.)

I received my pre-surgical letter via the online patient portal a few weeks prior to surgery. No one had informed me I would be receiving this letter, so getting this vital information via an impersonal way on a computer screen already started me off annoyed. Gone are the days of someone going over it with you and making sure you understand. Instead, “here’s an email directing you to a form letter that’s impersonal, quite hard to find, and easy to overlook.” Being a star student and always achieving the perfect patient award that does not exist, I did read through the presurgical letter. As the form letter on the screen suggested I adjusted my meds, and planned on arriving at the hospital at 6:00 AM. 

The Friday before my Monday morning surgery, I received a call from someone in admissions. While the absolute most kind and friendly woman, she really had no idea what was going on: she told me to arrive at the hospital at 5:30 AM and to just ask my primary care what medication I could and couldn’t take. Now I take issue with that last part for a multitude of reasons, but mostly because (per the form letter) I had to hold some meds for like a week or two pre-surgery. The kind woman had called me on the Friday before a Monday morning surgery. If I had not been holding my meds already, would I have still received surgery? 

Surgery 

Doing as the kind lady had told me to, I arrived at the hospital at 5:30 AM Monday, the 26th of June for my surgery. After waiting for an unnecessary and anxiety-producing 30 minutes in the waiting room (because the kind lady on the phone had been wrong), and the form letter had been right about a 6:00 AM arrival, I was taken back to pre-op.

Seeing as the Medical Center is a teaching hospital, I was prepared mentally to see a slew of doctors, or minions as I call them. Dr. Figy’s first minion, a terrified baby doctor on their plastics rotation, asked if I had any questions. I did—when can I bike again and what sort of dressings will I go home in? Baby doctor fumbled some answers that I didn’t trust and were in fact incorrect. But I knew, from working in health care myself, that I shouldn’t trust baby doctors, so I didn’t commit anything they said to memory. 

Next up in the succession of doctors was anesthesia. Now maybe I hold anesthesia in high regard because it’s what my sister does and she’s damn good at it, but this guy seemed very nervous. His nerves left me feeling like he had no idea what was going on. I was honestly half tempted to call my sister and ask what I should ask this dumdum or ask for another provider altogether. But much like the north star in the night, dumdum’s attending appeared and put my mind at ease. That actually proved to be a bit of a false-ease as I’m not sure the attending stuck around during my surgery and dumdum was indeed the one to do everything. Also they both left out some vital information in their little pre-surgical visit, which I wouldn’t learn about until days later, but more on that later. 

Anesthesia left and in came a very beautiful and confident plastics resident. She’s so beautiful I’m pretty sure I gasped. With her class and grace I gave her blind-confident pretty-girl trust. I asked her my questions and was elated when she said I could in fact ride a bike. Beautiful resident-happy with her pre-op assessment and me happy with her answer to my bike riding, she went to get the star of the show, Dr. Figy. 

Dr. Figy arrived with a med student in tow, who was too terrified to introduce themselves, so Figy introduced him. Of course, I then chastised the med student a bit because it’s fun to see them squirm. Plus, they deserve to be involved in the process, even if it’s just to tell them the name of my rare cancer diagnosis, “inflammatory breast cancer,” and welcome them to the party that it is. 

Introductions done, I asked Dr. Figy my questions. Much to my surprise Dr. Figy said absolutely not could I be galivanting around and biking all over Omaha, and that I would in fact not go home bandaged as I had thought. Now, if I hadn’t been so preoccupied with the shock of being told the exact opposite of everything Dr. Figy’s minions said, maybe I would have thought of more to ask for clarification, or committed what he said to memory. Alas I was so taken aback by his answers (and interested in chatting with Figy), that I set myself up for a bit of hard feelings and confusion post surgery.

To be fair and honest the beautiful resident had said she wasn’t totally sure about bike riding and to ask Dr. Figy, but she thought I would be able to. Just a reminder to always say you aren’t sure and leave it at that if you really don’t know the answer to something.

Post-Op

I woke up from surgery with a very sore throat (thanks for that anesthesia), no bandages, and what felt like less-than-stellar discharge instructions. Instructions which included taking an antibiotic 3 times a day for the next 10 days, which no-one informed me about prior to the day of surgery. This was yet another sore spot for me, because I didn’t have the necessary probiotics or carb-heavy food at home to combat the side effects of antibiotic use, and now Mitch had yet another thing he had to do for me, otherwise I would have to suffer until I’d be well enough to go to the store. 

The discharge folks also said to just talk to my lymphedema specialist for aftercare, who isn’t even an employee of the med center. This was very concerning to me, because I know it’s very difficult for healthcare workers outside the treating medical facility to get information or directions for care.

Very worried I’d have something bad happen and foolishly not trusting Dr. Figy, I sent a frantic, and still-high-on-anesthesia message to my lymphedema therapist. Of course Dr. Figy called her right back and confirmed the discharge instructions. My lymphedema therapist told me this and I felt a little bit at ease, seeing her a few days later to show off my new wounds and give me the confidence boost that someone I deeply trust was watching my care closely. Sorry for my still-high-on-anesthesia-drugs worry, Wendy and Figy! A sober Julia knows better and would always 100% trust the two of you to care for me appropriately.

Heading Post Surgery

The first 48 hours after surgery were spent in a bit of post-anesthesia daze, dealing with the side effects of the antibiotic and with very frequent hot flashes in which I felt like I was burning from the inside out. I’ve never experienced anything like that in my life and was convinced I must be going septic. Every time I checked my tempt I was fine though. Off to the shitty paper discharge instructions I went, where I read that my friends from anesthesia gave me some drug that can interfere with birth control. While I’m not on birth control, this made me wonder if the drug was interacting with any other medicine I’m on (like my hormone blocker letrozole or my hot flash blocker Effexor). A drug interaction would explain why I had hot flashes. Heck, maybe it was just a side effect of the drug I had never heard of that anesthesia gave me. Either way, nobody warned me that this could happen and it resulted in more unnecessary worry.

All of the unnecessary worry, stemmed from a lack of education from my providers, really doesn’t change my medical outcomes. But it does help solidify my opinion on Nebraska Medicine, which is: they are understaffed and only focused on seeing as many patients as possible. At first, though, one might see it as okay, because more patients get care if more patients are seen.

Yes, that is true, but when we take a step back and treat the whole patient (both mind and body), forming real relationships between provider and patient that are rooted in trust and mutual respect, research has shown patients have more favorable long-term outcomes. I believe this is because the patient feels comfortable to ask more questions and the provider knows the patients well enough to know how much education they need. But I guess favorable long term outcomes and healthy patients don’t keep bring money in the door. 

Coming down off my soapbox about the importance of patient experience and patient/provider relationships I’m now on activity restrictions for 4–6 weeks. I am not allowed to lift anything heavier than a gallon of milk, should not complete any vigorous exercise (you know, like bike riding all around town), and can not submerge my right arm at all, even for my beloved baths! This is because my body needs time to learn, accept, and use the new lymph channels that Dr. Figy made, while avoiding any risk of infection. 

This has led to some pretty boring days for me as I’m settling back into patient mode, but busy days for my rockstar caregiving husband Mitch, as he takes on more of the household chores for the next few weeks. My days are spent reading a lot, taking Oliver to his therapy dog-supervised visits utilizing only my left arm, and visiting many markets to pass my time. It’s at times boring, and not exactly fun to slow down but it’s necessary, because as we learned at the start of this year, one must go slow to go fast.

I’ll continue to try and find peace and joy in this slowed down time. Some of that joy is found in my writing again and hearing from all of you, especially grandma’s friends. I know you all have been rooting for me from the time I was born (or came into your lives), and I’m happy I can update you while helping keep her memory alive. I am certain that she is somehow living on in all of us and helping bring the magical moments into our lives. 

Now before I know it, these 4 slowed-down weeks will be up and I’ll be back to work for another school year as a high school nurse with therapy dog Oliver by my side. Hopefully I’ll have some new fancy working lymphatic channels up and running and get to take as many nice warm baths (with all extremities submerged), and bike rides as I can fit in!!!

Until next time warriors… Have a magical day.