Released

I was released from the hospital yesterday and celebrated my freedom by taking a long afternoon nap underneath a kitten. I experienced the giddiness that comes from being released from the hospital on a pretty spring day and the fatigue that accompanies the realization that doing well in the hospital doesn’t quite mean the same thing in the real world. On the way home, the colors seemed too bright, and the post-hospital cab rides always seem to jostle my tender organs around.

Being agile and mobile in the hospital—able to walk unimpeded by an IV poll to the ice machine—isn’t the same thing as being able to do a commute. I don’t know that I’m ready to be among the well. As we crossed over the Brooklyn Bridge, I crankily surmised that I would be released and ready to embark on my next stretch of wellness only to be taken out by a tourist’s falling iPad from the pedestrian walkway.

The kitten makes peace with this toy cat.

The kitten makes peace with this toy cat.

My hospital roommate was recovering from seven hours of surgery and her side of the room was often full of her family and lifelong friends; it filled our room with merriment and goodwill. Since my hospital stay was so short, my support was virtual but no less important. People sent so many nice well wishes, including a friend who sent a pic of her holding a “Get Well Josie” sign at the top of the Coachella Ferris wheel. I also came home to find some fun gifts. A friend had sent a Feisty Pet, a black cat, last week and he accompanied me to the hospital. Our actual black cat seemed a little concerned that this new friend would eat his food, but eventually the real cat made peace with the toy cat. Friends left a candle and a porcelain cat tray as a welcome home gift, and another friend stopped by with a pin, earrings, tote and a fun David Bowie card. My boyfriend’s parents sent a cat card and cat socks.

gifts

Fun recovery gifts.

I had hoped to be back to work by Wednesday, but I am going to see how the fatigue goes. I frantically cleaned, finished some freelance work and took care of work things so I could potentially have a few weeks to recover if I needed them. Right now, I’m worried I’m going to get a post-procedure infection and keep taking my temperature and checking on any pains that I have. I’m dealing with a lot of numbness and neuropathy, so I’m a little bummed to not feel better right away. I hope to get rid of some issues as I heal.

Applying a warm kitten when needed. Cats never seem to feel as if they should be doing something else when they are relaxing.

Applying a warm kitten when needed. Cats never seem to feel as if they should be doing something else when they are relaxing.

It’s a strange feeling, however, relaxing without the accompanying guilt that I should be doing something else. This guilt has been a constant companion, particularly in a city of achievers and where you are expected to have a side hustle. I have things I could be doing, but nothing pressing. Even the community garden blog is up to date. I read a book yesterday afternoon as I always think I will but never do. I had time this morning to do important things like vote for my top 25 Cure songs.

Now that I’m released, I am thinking again of a book I read recently: My Name is Lucy Barton by Elizabeth Strout. The opening paragraph resonated with me, reminding me of my monthlong hospital stay for my stem cell transplant: “There was a time, and it was many years ago now, when I had to stay in the hospital for almost nine weeks. This was in New York City, and at night a view of the Chrysler Building, with its geometric brilliance of lights, was directly visible from my bed. During the day, the building’s beauty receded, and gradually it became simply one more large structure against a blue sky, and all the city’s buildings seemed remote, silent, far away. It was May, and then June, and I remember how I would stand and look out the window at the sidewalk below and watch the young women—my age—in their spring clothes, out on their lunch breaks; I could see their heads moving in conversation, their blouses rippling in the breeze. I thought how when I got out of the hospital I would never again walk down the sidewalk without giving thanks for being one of those people, and for many years I did that—I would remember the view from the hospital window and be glad for the sidewalk I was walking on.”

Waiting

Waiting to leave the hospital is nothing new to me. I am mentally ready to leave. I was supposed to leave yesterday, but my potassium was too low and would put me at risk for a heart arrhythmia. This morning the doctors said they wanted to check my potassium and also do an ultrasound because my hemoglobin had dropped and they wanted to make sure that I didn’t have post-procedure bleeding.

I was wheeled down for an ultrasound, and I think it went well. In yoga classes, they often say to listen to your body, but an ultrasound really listens to your body. It sounds like an ocean with your heart as an approaching tidal wave.

Today, my numbness is bothering me.I slept pretty soundly. I woke up this morning hooked up to an IV that I don’t remember getting hooked up to. I just got word that my potassium is on the low side of OK, so I should be getting out soon.

Another Day

I was all set to go home today—my boyfriend had even taken my suitcase home—and I found out that I am spending another night. I’d packed up all my things and ordered lunch early so I would be ready to leave as soon as my boyfriend arrived after 1 pm. I’d seen the team in the morning, and the pharmacist, and my doctor stopped in to see how I was doing. When they took my blood, however, my potassium came back as really low and they couldn’t let me leave since such low potassium can put you in danger of a heart arrhythmia. Unfortunately, the fastest they could run the potassium IV drip is about an hour and potassium burns, so it had to be slowed down to stop hurting my veins so much. I was set for two bags of potassium, but I had still hoped to get out today. The tests are going to take a few hours, however, so they are going to wait until tomorrow to send me home.

In a way, it’s just as well. My boyfriend has plans tonight and as much as I want to see the cats, I wasn’t really looking forward to being home on my own (mostly because I can’t work the TV). Also, I’ve been feeling a little weird; my sinuses felt tingly and my neuropathy was acting up and my face felt numb, so I may as well be here feeling odd than home alone and worried. Hopefully, my potassium levels are better tomorrow.

 

Ablated

I’m still a little groggy, but I wanted to give an update about yesterday’s procedure, though most of you probably saw my boyfriend’s social media update. I’m wary of good news, so I’m almost reluctant to share it, but yesterday I had the best possible outcome. There was only one tumor, so the interventional radiologist was able to ablate it, using heat to get rid of the cancer cells. She showed me before-and-after pics of the tumor and of the area now that it is burned out. I can’t believe it still. So…that’s it for now. I’m going to be closely monitored, of course, to make sure that they got it all and that it doesn’t come back.

The other scenario was that if they found multiple tumors, they would do an embolization and cut off blood supply to the cancer cells. Again, I would have been closely monitored, but there seemed to be more likelihood that I would have to come in every now and then for a touch-up. Originally, the plan was to do both if there was only one tumor, but there was concern that it would put me at higher risk for infection. I’m already at risk for an abscess because I don’t have the natural bacteria barriers after my digestive system was rerouted during last year’s Whipple procedure.

I go home today. In the meantime, we’re going to keep an eye on my for risk of infection, and if that happens, I get a surgical drain. My boyfriend and I are really squeamish, so we’re hoping this doesn’t happen. These past four years have really tested and strained the boundaries of our collective squeamishness. I also have to see how I’m doing as far as recovery. Even though I don’t have an incision, the doctor explained yesterday that it’s an internal surgery so it’s more involved than biopsy recovery.

I am a little bummed I can’t attend the March for Science for Earth Day today. Science is important not only for the planet but for individuals as well. Science saved my life yesterday and repeatedly has saved my life. Accessible and affordable healthcare is important as well, and that is also in danger.

Last night, I ate without feeling weird and nauseated immediately after. I feel as if something that was trying to kill me has been removed. My potassium and blood pressure are low, but I feel better. I hope it’s not just the effects of the anesthesia. I would like to get my weight back into the nineties soon. I thought our scale was broken when 87 or 89 would show up. I had been progressively feeling more terrible, and I’m ready to feel better.

And then what? If I don’t sound excited, I think it’s because I’m in shock. I realized when I was presented with the possibility of having a longer reprieve from this cancer than I expected that I had been mentally preparing to die. Now I can tentatively look to the future.

I had just been complaining about the off-the-shoulder and "cold shoulder" cut outs in all the tops this spring, and I see that even these hospital gowns have the cold shoulder look. Also, I got this nifty hat. You can see from my smile that I was really ready to have this tumor taken care of!

Pre-procedure: I had just been complaining about the off-the-shoulder and “cold shoulder” cut outs in all the tops this spring, and I see that even these hospital gowns have the cold shoulder look. Also, I got this nifty hat. You can see from my smile that I was really ready to have this tumor taken care of!

 

Today’s the Big Day

At a friend’s event for a book about her family’s genetic disorder, she talked about how she often thinks she’s having a stroke. “So sometimes you’ll be talking to me, and I think I’m having a stroke,” she said.

As someone who suffered from anxiety, I have had my share of trying to keep it together outwardly while inwardly wondering if I’m dying. I have had strange symptoms since October, but especially within the past month, I’ve felt strange. I’ll be talking to someone and suddenly get a sharp pain in my left calf or my toes will go numb. I’ll be on the train and I get a jolt of pain in my side or I stand up too fast and feel like I might pass out because of my low blood pressure. Oddly, my main concern isn’t actually passing out or the pain, but ruining dinner out or being the maligned sick train passenger who causes delays. My last thought, if I’m lucky enough to have a peaceful end many years from now, will probably be, “I hope this isn’t too embarrassing.”

For possible work leave, the doctor had to fill out a form listing why I might not be able to return to work for a bit, and she listed all my current symptoms: fatigue, diarrhea, nausea, anorexia (the medical kind where you just don’t feel like eating), weakness, pain. I have been trying really hard to keep things normal, but seeing it all listed made me think that I’m in pretty bad shape. Plus, I have the neuropathy and an eye infection, and just general inflammation all around, it seems.

I’ve been meaning to update this blog for awhile, but last night I ended up doing the dishes and cleaning a bit. What they find today will determine how the rest of my life could go, or at least the next few years. If there is only one, then I can get the ablation; there was a change of plans to avoid infection, so they would no longer also do the embolization. If they discover more tumors, then I just get the embolization and I would have to keep getting those done. It’s almost always bad news, so I don’t want to get my hopes up. Fingers crossed that I can get the ablation and avoid subsequent infection. I’m in the hospital for a day or two and then I can return home for more recovery. Either way, I should feel better after this. Thank you for all your kind thoughts and words!

Embolization and Ablation

Last Friday, I got a call from the interventional radiologist’s office to schedule an upcoming ablation consultation for today, as well as a call from my oncologist’s office explaining what an ablation entails. As I jotted down the message, I spelled it “oblation,” which is “a thing presented or offered to God or a god,” and synonyms that include “sacrifice” or “offering.” I pictured the radiologist plunging her hand into my body, closing her fist around it, and lifting it up victoriously with both hands like the priest of an ancient tribe making an offering.

The reality is less dramatic—slightly. The treatments sound a little bit like what is used to defeat sci-fi monsters or superhero villains, including sub-zero cold (as they used to defeat The Blob, which I just watched again for the first time since when I was five or six). There’s also intense heat or even alcohol (something, it could be argued, I’ve applied to my liver on my own). At today’s appointment, I found out that my procedure is on April 21 and the most promising route is both embolization and ablation.

According to the CT scan I had weeks ago and previous imaging, it looks as if I have one tumor that is getting increasingly large. For one tumor smaller than 3 cm, they would do an ablation, using a rod to burn out the tumor and about a 1 cm surrounding perimeter. My tumor has grown to 2.5 so it’s on the larger side.

An embolization is typically used for multiple tumors to stop the growth. It’s not really curative, but it would stop the symptoms and I could go in for touch-ups. Though the scans don’t show multiple lesions, the embolization will show any that may not have shown up. If there are multiple tumors, then they will do only the embolization.

If there is only the one tumor, then they will go ahead and do the ablation for a one-two punch and have a clear idea of where to put a thermometer at the edge of the tumor. “Like a meat thermometer?” I asked. Kind of, as it turns out, though it won’t pop up when I’m done.

After that, I spend one to two days in the hospital while they give me antibiotics to lower the risk of infection. One of the main reasons they didn’t do ablation first is because the way my digestive system was rerouted during my Whipple, I’m at a higher risk for developing an abscess, a 10 percent risk. With my gall bladder and part of my pancreas and part of my bowel taken out, there’s greater risk for bacteria to get into my liver and cause an infection. If this happens, then I’ll get a drain for a few weeks.

The best case scenario is that I have just the one tumor that can be burned out, and that might give me a break from cancer for awhile. I almost don’t dare hope for that. The odds are rarely in my favor, and I always seem to fall into the unfavorable group. I’ll find out when I wake up after the procedure what has happened.