I’m home from the hospital and officially into six weeks of expected recovery from surgery. You might have noticed that’s twice as long as the longest expected recovery that was projected before surgery. There’s a reason for that.
The short story is that surgery wasn’t quite as simple as they had hoped. There’s part of a tumor left behind. I’m again going to have a very rough autumn. Though, good news, unless the plan changes drastically, I won’t have any chemotherapy on my birthday this year! Woohoo!
Okay, maybe that’s not enough details for some friends. So here’s the longer story.
Pre-op medications and preparations meant that I spent the 24 hours before surgery feeling like the proverbial sick dog. At one point I curled up on the couch, as miserable and pouting as a small child with the flu, and Toby surprised me. He daintily jumped onto our cocktail table, then carefully stepped onto the couch and curled up right next to my head, then began to purr. Resting with my hand on his soft, gently moving fur and hearing his rhythmic, soothing purr was the relief I needed. Toby couldn’t take away my reactions to the preparations, but he calmed me down and made it easier for me to rest.
Our friend Quinn came over that evening and helped us pack while distracting me and letting me talk. I cried to her about how much I missed my dad and how scared I was to face cancer without him. Not only did Quinn help me make sure I was ready in a practical sense, but she also helped me deal with my emotions. Plus, because she was helping me, Jarrod was able to have a little bit of time on his own to prepare himself. I might be the one with cancer, but he’s the one taking a lot on his shoulders to do what he can to help me get well again — less than a year after we both did all the cancer stuff before.
The day of surgery, our friend Becca drove us to Baltimore while playing soothing classical music and providing great conversation. We’ve known her for years (she actually played a huge role in our unusual and awesome first date) and she’s one of our favorite people.
At Hopkins, Jarrod distracted me with videos while the phlebotomist tried to get enough blood to do the day-of-surgery type and screen. It took three draws! The first dried up before they had even filled a vial. The second they had to stop after getting three of the four vials because I passed out. The nurses decided to wait a bit before trying the third time. They wanted to let me get my color back. I was grateful that I had saved some of my 16 oz allotment of fluid for water to drink since I took a few gulps to get back my courage to go through another poke. The nurses were kind and talked with me about my nephew (Jarrod played videos of him during each poke to distract me — do not underestimate the fierce love an aunt can have and the reminder that she needs to be strong so she can be part of this amazing child’s life). One nurse asked about my wedding ring because she loved the simple style. We told her about Holly Blue and our handcrafted rings that were exactly what we wanted. Apparently the nurse and her fiance were having trouble finding wedding rings that they liked. I’m hoping that Holly might be right for them.
Thankfully the third stick, when it happened, was successful and I fought off the temptation to pass out. It was decided that instead of walking to the surgical center, that I’d be pushed by Jarrod in a wheelchair — just in case. I felt ridiculous, but it did seem practical compared to the possibility of passing out in the passageways of Hopkins. Our pastor, Amanda, was waiting for us when we came out of the blood draw area so she helped Jarrod push me over to the cancer center where I’d have my surgery.
After paperwork, me accidentally mistaking a random fuzzy keychain for a tribble stuffed animal, and only a bit of Facebook perusing, I was led back to the pre-op area. Back there the nurse taking my information saw how anxious I was while answering questions. I kept apologizing, then asking when Jarrod would be allowed back because he helped keep me calm. Almost a year after our wedding and it still felt strange to say “My husband helps me stay a little calmer” as though it were some old-fashioned script about a little woman who was dependent on her husband, rather than a fiercely independent woman with anxiety issues freaked out about cancer and wanting her calm husband to remind her that she could do this.
We met the various doctors who would be involved with the surgery. My favorite was a young resident who reminded me of one of my best friends. She was sweet and kind with just a touch of awkwardness as though she wasn’t sure whether to make conversation with us or talk strictly about medical things. After she left, I asked my husband if it was weird that I felt calmer because the resident reminded me of my favorite Canadian.
Pastor Amanda was allowed back to anoint me and say a few prayers before I was wheeled back. I was awake when they wheeled me to the operating room and it was strangely reminiscent of my hazy memories of being rushed back to an operating room last year when I had internal bleeding and needed a transfusion after surgery.
My next memories are in post-op. I don’t remember yelling at any nurses this time as I was coming out of the anesthetic. In the past, I haven’t always been the kindest when I’ve been waking up. This time I was amazed when I asked for ice chips (I felt parched) and the nurse actually offered me water! Normally my meanness in the past has stemmed from irrational anger about nurses not letting me soothe my thirst with water or ice.
I have a vague memory of my main surgeon telling me about the surgery and a feeling of confusion and rising panic when he got to one part. However, I was out of it from the meds and in pain so I didn’t really understand what the surgeon said other than that he’d come by tomorrow to explain again in detail. I also remember asking when Jarrod could be brought to me and feeling intense relief as soon as I saw him.
It took a long time to get my post-surgery pain under anything resembling “control” at all. I was crying a bit and even asked Jarrod to ask one of my Facebook groups to send prayers/vibes/thoughts that someone would increase my pain medication. Despite the water, the post-surgery nurse was not my favorite. When I pressed my medication button more often than the system would dispense medication, she seemed to get angry at me and said that she’d be blamed for not having given me clear instructions. I told Jarrod that I rather assumed they’d instead take the extra button hitting to mean (accurately) that my pain was not under control and I could not keep from hitting the button in hopes that just possibly it was time for another dose of medication. Thankfully, not long after Jarrod asked for our friends’ intercessions, the post-surgery pain specialist appeared, talked with me, and immediately began adjusting my doses. I wasn’t in comfort, but I wasn’t in agony.
Our friend Chris brought Jarrod dinner and spent some time with me so Jarrod could take a quick break to eat and freshen up without leaving me completely alone. Chris distracted me with jokes and conversation, even if I barely remember any of what was actually said.
It was only a few hours later that I was moved to my hospital room where I recognized the night nurse, Nurse Abby, as one of the fantastic nurses who had taken care of me last summer. Due to pain meds, I may have been a bit overly emotional when I told her how incredibly happy I was to see her because I knew she would take good care of me. I suppose there are worse things for a nurse than heavily medicated patients crying in relief at the sight of you and telling you that they’re already feeling less anxious simply because you’re present.
The next day I not only saw the view from my hospital room windows (pictured) but I also got to see some of the same residents who had been part of my team last year were also part of my team this year. The continuity encouraged me. The doctors explained what had happened the previous day.
Essentially, when they had maneuvered the laparoscopic equipment into position, they found that the tumor was a lot bigger than expected. Roughly, it was about the size of a clementine and wrapped around an important blood vessel. That meant that the approach needed to immediately change.
The surgeons had to maneuver the equipment out and then cut me open in a more traditional fashion. In fact, it’s so traditional that it’s on the exact same line as my scar from last year. Fun side benefit — I won’t have any additional major scars because of this!
The surgeons were calm and skilled so they were able to remove almost all of the tumor-engorged lymph node. Unfortunately, because it was wrapped around the blood vessel, it wasn’t safe to try to remove all of it. Given that the blood vessel is responsible for one of my legs having blood, I’m rather grateful that they didn’t risk it.
Because some of the cancerous tissue had to be left behind, the surgeons carefully marked the outlines of it with small pieces of metal. The pieces are so small that I shouldn’t set off most metal detectors. That was one of the questions I interrupted the doctors to ask when they explained the surgery to me.
That metal will allow the surgeons to clearly and easily measure the results of any treatments and even possibly target treatments directly at the tissue if that seems the best option. I think that the easy measurement is really cool so long as I don’t think about what it’s measuring!
After inserting the metal and doing a visual check to see if anything else looked to have cancerous growths, the surgeons closed me up and sent me to the post-op recovery area. Instead of being done in 45 to 60 minutes, the surgery took somewhere between 5 and 6 hours.
I stayed in the hospital until Sunday with my friend Karen visiting from New Jersey, plus my brother-in-law and friend Rachel visiting to cheer me up and distract me. Jarrod was again able to stay with me in my room so that even at night, I wasn’t completely alone.
Now I’m recovering at home and having the strange conversations again of “so, I have cancer.” There’s not yet a full treatment plan, but some form of radiation is likely. My oncologist wants to avoid chemo because I had it so recently. She’s already set up an appointment for me to talk with a gynecological radiation specialist so that my team can come up with a plan to help me beat this and get back to health. Nothing will happen until after the six-week recovery period to make sure that my body has a chance to heal from surgery. Right now, all I can do is focus on healing.
I’m nervous about what’s to come and what radiation will mean both in terms of side effects and the practical aspects of juggling treatment with the realities of life.Apparently, it’s likely that radiation will make me even more tired than chemo did based on the types of radiation that are likely and how I reacted to chemo. I’m not eager to feel like I’ve lost another autumn.
In happy news, I did receive reassurance that I’ll be able to attend my friend’s mid-October upstate New York wedding as well as (likely at the end of my recovery, before starting radiation) a full day at the Maryland Renaissance Faire (call me a nerd, but I was sad to miss that last year — it’s fun in and of itself, plus I get to see so many friends when I’m there). I was also assured that it’ll be safe for my cat and nephew to be around me. Apparently I’m unlikely to have the sort of radiation where I become mildly radioactive. For those taking bets, I actually asked about being around my nephew before I asked about anything else.
So that’s where things stand. It’s not great, but it could be a whole lot worse, and it’s not dire. I’m still easily and often tired (why it’s taken so long to write this post). We’re working on figuring out my pain med balance at home since sometimes there are waves of awful pain that take my breath while other times, the meds leave the pain as a dull ache that I can almost ignore if I try hard enough and have distraction at hand. I’m not allowed to lift my cat and I’m not supposed to drive, twist, or bend. On the upside, I have a lot of books to read and color, plus staying up the other night due to pain meant that I’ve watched a lot of television on Amazon Prime and Netflix.
I haven’t walked further than the tables in front of our condo building, but I did get outside for the first time yesterday (pictured). Today my sister came over and helped me down to sit in the beautiful unusually cool afternoon sun while I was feeling up to it.
Overall the situation sucks, but it could be worse, it has a lot of hope, and it doesn’t erase the reasons I have to smile and laugh, even if too much laughter is obscenely painful right now.