Some Days Are Just Hard

My July 1st outpatient visit was one of my rougher days to date and it was not because treatment was painful or intense but because the hospital was overcrowded, understaffed, and bad news collided with bad timing.

Here’s some of what I shared, in email, with my friends Lynn and Kathy, after bawling my eyes out on the phone to my friend Beth while getting my infusion.

“Your guess is as good as mine,” is the response I got from the infusion nurse on the 8th floor relayed through the receptionist to me when I asked when my treatment might start after waiting for hours.

“The drugs are in the pharmacy and being mixed,” is all I’m told despite the fact that I arrived at 8:15a.m. and it’s now past 1p.m.

The infusion itself only takes an hour or so to be administered but it seems there is no way I can get to the chair. I feel trapped in the waiting room and though it’s bright and sunny I want to walk out, go home, go to bed and try again tomorrow. 

I’m stretched beyond stretched. 

Appreciative is how I start the day because Kai wakes early to take me to the Braintree station and does so without complaint even though she’s in her first week of work and is adjusting to going to bed earlier. 

I’m happy because despite a crap night of sleep I feel energetic and I arrive early for my lab draw so the results will be back before I see my Dr. and the order to mix my drugs can go to the lab early. 

The receptionist at the front desk is warm and friendly. The nurse who accesses my port is cheerful and chatty. We talked about how my daughter came to the last visit. The nurse said it was lovely to meet her. I say it was  a special and bonding day. The nurse says, I’m sure your daughter worries less when she sees you are being taken care of.
I say she was 16 when I was diagnosed but she’s 19 now and a medical student so it feels the right time to share more.

The nurses ask about my radiation rash and I say it’s more itchy and annoying than painful. I show her the art I’ve tried to do with my radiation mask and she is excited. I say I can’t decide if the face will be a mirror or the plastic “hazardous drugs” bag the drugs are delivered in. 

I say, “It would be nice if they said, “Healing drugs” instead if they are going to leave the bag in the room and have patients see it. She asks if I’d like a few of the biohazard bags the labs and specimens go in and I practically squeal with delight.

“Really? Really? Really?” and “Yes, please,” I say. 

We are doing all of this as she is readying my port. She is my favorite port placer. She always says, “One, two, deep Breath: and then punctures my skin on three. It’s over before the pain registers and I thank her. She says, “Anything I can do to make your treatment better.”

I say it is appreciated as the infusion room nurses are not as good at getting the IVs in so when I have the port placed in the morning it’s a better day and worth walking around the hospital with my shirt pulled down and the port plastic sticking out.

The day before I tell my friend Beth there’s so little dignity left for me to lose, and when I’m sure I’ve hit rock bottom, there’s a new low. I’d received an email from the Integrative Clinic in Canada about my whole body hyperthermia and how I’ll need to do a mini enema hours before I arrive, while also fasting for six hours but being sure to stay hydrated, and oh, I MUST wear 100% cotton pajamas to the appointment and will not be allowed to do the procedure without having an escort to take me home. This, less than 24 hours before we get on a plan and I don’t have any cotton pj’s and don’t know how I’m going to get any enema prep fluid past security or myself to a drug store in Canada in the 8 or so hours between when we arrive, get to our AirBNB, sleep, and get to my intense treatment.

I go to CVS looking for a micro enema kit and am embarrassed that I have no idea what it is I’m looking for. And did I mention, I find out that I have to wear a diaper during the five-hour hyperthermia treatment because once it starts it can’t be stopped for any reason – including a need to use the bathroom.

But anyhow, back to infusion day. Dr. P pops into the office to say hello and he is holding out a printed copy of my draft essay and asks if he can get my autograph before it goes to press. I laugh and tell the nurse I will be published but I still don’t actually believe it will happen.

When Dr. P comes into the room and the nurse and I are sitting down and talking about Roe v. Wade, R. Kelly gets 30 years and Ghisane Maxwell gets 20. We discuss and debate the news and also get personal sharing our own beliefs and experiences (that’s another post).

Dr. P pivots to my care, asks about my neck and how much it hurts, says that the immuno might cause my neck pain and inflammation to flare up and that Singulair and Zyrtec will help and do about as good a job as steroids without the side effects. I take note because I hate how steroids make me feel. 

I ask how my liver counts are because one is still elevated (though down to 54 when it was over 200 a month ago).

“It’s taking a long time to heal?” I say, and he says, “No, not at all. That’s what happens.” 

I ask if I should limit ibuprofen and he says no but to continue to stay off the statin and metformin (off-label drug use). I say I’m also off mushroom supplements because he has told me they can also impact the liver.

I tell him I’m feeling really well, strong, back to the gym and doing all but weights. I’m in yoga classes, walking and doing the treadmill but still need to add in two days of weights because my muscles are like mashed potatoes.

He says all that, and adding the weights will help a lot with side effects. He says my belly sounds great as do my lungs despite the remaining pleural effusion. 

He asks if I’m going to travel, which feels like he’s implying I should take any big trips now, while I can, while I’m healthy – just in case – and I say yes, to Canada for hyperthermia because I still hope to get healthy. I say that I’m mostly living life slowly, savoring things and time, and feeling grateful not to have to rush. I share this is a new way of life for me, and I’ve never had so much time, rest, love, and good food.

I showed a photo of the salad I made before my friend Lynn came over. He tells me about sitting by his pool at night reading while dappled sunlight comes through the trees to soothe.

I ask if he’s writing and he says he can’t quite pull off an hour a day. I say I get that but how about he just starts with ten minutes. He says he needs time for soul restoration and reading. I say, “But couldn’t you do that for 45 minutes and write for 10?”

But, I do get how sometimes no words come and there’s no flow til there’s a wholeness or a fullness inside that it just spills from. He says, “Yes!”

But I know he’s a minister and I say, “Do you pray regularly? Don’t you have to make time and practice to notice the fullness and to invite the fullness to flow?”

He tells me again about the leather bound journal his daughter gave him. I say, “Just ten minutes. Try it. Just ten minutes.” 

I leave elated. I feel seen, cared about, respected and I also realize he’s just a human and a human I don’t agree 100% of the time with but whom I still like and respect and who likes and respects me. 

It’s 9:35am  when I leave and I have an entire hour to fill out my disability paperwork. This is a relief because the nurse asks me to be as thorough as possible as it will make the process go faster.

I sit down and I fill out the form and feel immediately resentful for having to justify that I’m sick enough not to work but am actually alive. It feels like the disability provider is suggesting I should either be working or dead, because they for sure don’t want to keep paying me. 

I have to describe if I’m able to feed or bathe myself, if I can be on the computer. They want to know my actual physical limits and I start to think I am lazy. Didn’t I just write an essay? Haven’t I made salad? Didn’t I work on a piece of art? I am starting to exercise more regularly. 

But when I get to the part I have to list all hospital visits, all specialists, all surgeries and procedures I remember why I haven’t worked.

I note two ER visits for elevated heart rate and fear of bowel obstruction. The first was a pleural effusion and the second a false alarm.

I will note five procedures. Two each to get the pleurX in and two each to get the PleurX out and one to get a port put in. 

I note the blood transfusion and the severe anemia that made it necessary.

I note the lymph node biopsy and the tumor that was discovered.

I note the 3 in-patient hospitalizations within a month. 

I note the pericardial effusion and being monitored by the cardiologist. 

I note the elevated liver enzymes, the low iron, the low hemoglobin, the fact that I’ve been moderately to severely anemic for over a year even before the transfusion.

I remember the low platelets, how they got down to 20,000 when normal is 150,000 to 400,000.

And then I list the treatments of the past 18 mos.

The carbo doxil chemo.

The 3 month regeneron trial. 

The radiation treatments.

The new immunotherapy regime. 

I note that all of my care is not curative, only palliative, meant to make me live as comfortably as possible for as long as possible and it hits me that I’ve been through so much.

I don’t even list the day in and the day out, the fevers, the vomiting, the weight loss, the headaches, the dizziness, the break-up, and things that don’t come with a clinical diagnosis. 

I realize I do focus on the here and now, most days, and am fairly flexible and able to roll with the punches. But I also get sad and scared.

The interventions have been way more frequent. Much more of my time is at appointments with ERS, cardiologists, eye doctors, the interventional radiology appointment, or in bed or on the couch in recovery/rest mode.

I go through my patient notes and have to list, using medical terms, all the things that have gone wrong or are still “off” and I finally remember to mention that I do have progressing cancer.

If metastatic cancer doesn’t make one eligible for disability what does? 

I realize how many days I’ve walked the halls of these buildings, how well I know the staffers, how familiar the lab techs, receptionists, nurses are and I’m grateful my doctor didn’t retire or quit or go somewhere else. It seems like a lot all at once. 

That morning, I’d asked Dr. P if I was his most talkative patient. 

“No,” he says.

He says 40% of people with ovarian cancer have depression, anxiety or PTSD and that’s FROM ovarian cancer. I think about how I had PTSD before, and that it was way worse than terminal cancer (for me).

I finish up the disability paper, head to the infusion center and sit.

And sit. And sit. 

Hours pass. I’m still waiting. I ask once, then twice, and then a third time when I might be treated. 

I start to feel invisible, disregarded, and dismissed. I start to go inward and feel trapped. I want to leave, walk out, feel some sense of control and I can’t.

I can’t be treated on a different day. I can’t leave. I can’t quit life saving treatment.

I feel powerless and stuck and alone.

I feel stretched and stretched and stretched. 

I’m sitting in the waiting room and hungry because I’ve not eaten, assuming I’d be in the infusion center and having lunch by 11a.m. I feel hangry and then a new lab result comes in.

It’s my CA125 and it’s almost 1000, the highest it has ever been, higher even then before I started the clinical trial in Feb.

I feel punched. 

Am I dying? Is this it? Is nothing going to work on me? Is this it?

I remind myself I feel well and strong and I’m working out. 

I remind myself my other labs are good. 

I think maybe it’s the radiation or the lupus as any inflammation increases ca 125.

I panic and then remind myself panic doesn’t help and actually how good it is I’m going to Canada.   

I want to cry. I don’t want to cry. I’m in a waiting room full of people. I close my eyes and pretend I’m alone.

Tears fall. 

A woman offers me water and I can’t speak or I feel I’ll explode into tears. I can’t pretend I’m not sad and stretched so I just nod no. I walk to the outside waiting area and let the tears fall but then people start walking by and I worry I’m scaring them. What if it’s their first visit and they aren’t terminal?

And then I worry I’ll not hear if they call my name. I won’t hear it so I go back inside and just let the tears flow in front of everyone else. 

When my name is finally called and the guy comes over to ask my name and birthdate and to bring me to a room, I can’t crawl into the bed fast enough. After closing the bed, I almost collapsed.

I’m so tired.
I’m so tired.
I’m so tired. 

I’m so sick of forms, waiting and procedures, and fear and fight. I’m so sick of feeling like nothing is working.

I let myself cry and cry and cry and cry. 

The nurse comes in.

“Can I do anything at all?” she asks and I want to snark back, “Your guess is as good as mine,” but I can’t speak. 

Eventually, I say, “I’m just having a day.” 

She said she’s sorry for the wait but it was the pharmacy.

I don’t say anything.

I say, “Give me a chair in the sun and I’m o.k. but apparently if you put me in a bed in a room by myself, I can’t keep my shit together – be warned.”

She laughs, says, “I don’t have cancer and I lose my shit some days.”

I pull out the end of my catheter as if to say can we get on with it so I can get the fuck out of here. Unlike always, I’m not in the mood for chit chat.

It’s not even 1:30 and I’ve felt all the feelings on a feelings wheel. 

Annoyed. Connected. Centered. Curious. Defeated. Dismissed. Emotional. Excited. Exhausted. Exposed. Flattered. Grateful. Honored. Hungry. Hangry. Resolved. Respected. Sad. Self-Pitying. Self-Soothing. Stretched. Stretched. Stretched. Worried. 

I know I’ll find my center. I know I’m just worried and high strung about traveling, packing, flight delays, costs, COVID, being away from Kai and the animals. 

I know I’m worried about my health and future and how long I have but I’ll find my way back to the moment, remember how happy I was at the start of the day, how at ease, and normal and upbeat I’d felt.

I know that even though I feel alone it is just a feeling and not the truth. I know I am not actually alone. I know I am loved. I know if I called people they would be compassionate and kind (and later they are). I know it all just feels like too much but it’s not too much.

I take sips of water. I eat a sandwich. I take deep breaths. I think of creativity and curiosity and compassion and they seem like balls that rolled across the road and that it’s too dangerous for me to chase. I’m all hooked up to the ivs but it’s just for a bit. I’ll be up soon, walking, and they will be waiting across the road and I will pick them up, pull them close to my chest, and get to know them again. 

For a minute, I guess I just have to remember what frustration, exasperation, and exhaustion feel like. I let myself surrender to those until I soften and feel like myself again. 

Note. Writers do send emails that long to one another. And respond with    offers to help, nesting poems, quotes, jokes, and TLC.

Lynn offers to come with me to appointments though I tell her most are fast, easy, and fairly routine.

Kathy writes words like, “There is a sturdy branch, named you, in my heart. A limb forever leafed and green.”

My friend Beth listens as I vent. This is not a one-time thing. She does it repeatedly whether I am laughing, crying, or in the middle of treatment.  Even when I am alone I never feel alone for long. This is grace, and love, and luck and something I’ve often missed even when sharing a bed or home with someone.

I am loved even as I am afraid, even as my tumor markers rise, even though uncertainty sometimes settles in deep while I sit in a waiting room.  

I know I am lucky and most of the time I feel lucky but some days are just hard.