Things I Gave To Cancer

Things I Gave to Cancer

My Hair:

Starting with my second chemo treatment, every time I woke up it felt like someone had been yanking my hair for all they were worth. Every time I woke up, it felt like that invisible person had moved to another section of hair and pulled (usually harder). When I tell my chemo buddy about this side effect, she says, “Oh yes, in a few days you’re going to start losing your hair.” Her prediction proves true. I shed more in the next week than my Husky did with three coats of hair in an Oklahoma summer.

I’ve always had a lot of hair. I always hated how unruly it could be. People have complimented me on my thick head of hair all my life, while I loved to complain that it had a mind of its own. Now I miss it more than ever, and I haven’t even lost it yet.

What I hate worse than the bald? The weeks and weeks and weeks of gross stubble as it slowly grows back in.

My Love of Coffee:

Since 2004, driving past a Starbucks, that strong coffee smell that poured out around the store was enough to lure me in as surely as a master fisherman pulling in a reluctant trout. Coffee was my lifeblood. I loved my Lattes and my sugar free Hazelnut, java chip frappacinos. At my worst, I could have 3 or 4 a day.

A Starbucks sits on the corner of the major intersection closest to my house, and the first time I pass it after my first chemo, the smell makes me want to hurl. Literally.

I’ve often said I can put up with any kind of physical illness, except nausea and vomiting. Queasiness ensures I’ll conclude life is not worth living in double time. Within 24 hours of my first chemo treatment I give up coffee.

Diet Pepsi:

Once I know for sure that the smell of coffee is a trigger to throwing up (almost instantly), I assume I can simply switch my caffeine source to Diet Pepsi which I also love.

Not so much.

The first one I try to drink makes me want to gag. I, however, come from folks who homesteaded in the last land run in Oklahoma, people who bought, and paid for land in the middle of the SW dust bowl in the middle of the depression. My grandmother could squeeze a penny 16 ways to Sunday and still have money left over.

By golly, when I pay 1.79 for a Diet Pepsi, I am going to drink it. So I do. It takes over half an hour. I hurt with every sip. It does stay down, but it does not go down easy. I feel miserable with all that carbonation sitting in my stomach. I feel even worse as it works its way through my system. Two days after my first chemo treatment, I give up Diet Pepsi.

My Addiction to Caffeine:

Within 48 hours of my first chemo, I am caffeine free. Good News/Bad News: I’m in such pain from the chemo, that in the entire first week of my 7 day caffeine withdrawal migraine, I actually only feel the migraine for about 3 hours, none of them consecutive. This first week is hell. I have no other word for it.

Barbecue/Smoked Anything:

In my second week after my first chemo treatment, believing the worst is behind me, I go to one of my favorite casual restaurants and order a burger. It comes with A1 sauce on it and I’ve discovered another no, no. I manage to eat around the sauce for the smell of it tells me I won’t choke it down.

I pay for the meal and then route by the bathroom to toss up the meal I just spent 10 dollars on. It seemed a better choice than letting the patrons watching me upchuck the meal in the parking lot (not to manage casual passers by making a note to self to never try that restaurant).

Olives and Lettuce:

I had my first chemo on November 11, 2016. On Monday, November 21, 2016, my office had its Thanksgiving lunch. I make the healthiest choices I can and enjoy my meal because I know now that I am not cooking for the holiday. My plate is heavy on salads. I regret those choices almost immediately. I am not well. The olives and lettuce passes through me completely undigested. I won’t touch olives again for 6 months. The pain caused by my experience with lettuce ensures that now, more than 2 months after my last chemo, I still can’t bring myself to try lettuce. Soon. Hopefully.

Daily Walks:

I have been diabetic since 1998. Walking, swimming, these are the ways I plod through my days to keep my blood sugar under control. Not anymore. Can’t be more than a minute from a bathroom, and me in a bathing suit in a pool where I have to race on wet tile down two halls to the stall and not make it because Taxotere weeks give me no warning? Yea that ain’t happening. I can’t walk from my apartment to the truck drive one and a half blocks to the dog park, walk from the truck to the park and return and be assured that I will make it.

Once I didn’t make it out of the gate of the dog park. Thank God it was dusk, and my pants were brown, but the Weimars knew exactly what I had done. They both looked at me and said louder than words: We went out in the middle of the park, but oh no; the human has to mess in her nest (and truck and sidewalk and house). After each accident I spend the next business day on the phone to my Oncologist’s nurse or the Infusion center nurses figuring out better ways to control the uncontrollable diarrhea that turns out, truly, to be never ending. By some miracle, the only place I don’t mess myself is at work, but several times it is a near miss.

Light Colored Pants:

See entry above. For the obvious reason, I don’t dare risk it. Goodbye tan, white, and light grey pants. Anything not dark brown or black, on a really good day, charcoal grey, is on hold for the 6 months I spend on chemo.

Travel:

For the same reason I can’t walk or swim, and can barely leave the house, I choose not to travel and don’t even drive the hour and a half home to be with family. Unless I want to pull my own port-a-potty behind me, or sit on the bed pan for the entire trip or…..well you get the idea. Travel is out at least until the chemo effects wear off.

Pride:

My grandmother was incontinent the last 9 months of her life. My mother is almost completely incontinent now. But Gran was 67 and dying of cancer, and mom is 86. Surely I’m way too young for this shit? Right? No. Early in the chemo a friend texts me this question: Do you have anyone there to help you? I reply, “Do the Weims count?” She assures me they do but says I need someone to help me take care of them. What I don’t need? Witnesses. At least living alone, if I don’t make it the 10 steps to the bathroom, there is only me and the Weims to see, and they ain’t telling. I can, and do more often than I want to admit, clean it up. I have never been more grateful that I live alone.

Friends:

The one coworker I thought of as a friend stops speaking to me sometime after my second chemo. It might be this would have happened anyway because she adores the new employee who hates me, and apparently both ladies feel like sides need to be drawn. The new employee tells everyone I’m mean to her. Some believe it, and some do not. I am past caring. When someone attacks a person going through the hardest fight of their life, the fight of their life, and then wails to all and sundry how mean that person is to her, I think it says enough about that person’s character that I for one want nothing to do with them. My so-called colleague friend chose to believe a 33-year old woman who bawls at the drop of a hat, but when confronted with hard evidence that her perception isn’t true, claims she “might have been a little off”, that is not a friend.

Some of the other surprises: the friend who was a cancer survivor who repeatedly tells me how much she is there for me. I hear from her about once every two months, and it’s superficial. This reaction surprised me, but did not disappoint me. Her cancer was advanced. She fought and fought hard for her life and nearly died during the surgery. My cancer brought up bad memories for her. We are and will still be friends.

The friends that stood with me through thick and thin: through my mother’s nervous breakdown and resulting legal and living problems; the fights to stay in and graduate from school; through jobs and moves. They stood with me through cancer so while Cancer took some friends. It couldn’t take the real ones.

21 Pounds and Counting:

I tell my friends I’m on the world’s most effective diet: Anything I can stand the smell of, eat, that stays down and doesn’t hurt too much going through and coming out is on the food plan. Ice cream and chocolate manage to stay on the food plan. Coffee, olives, lettuce, corn, and most breads are out. Soups in. Diet Pepsi out. Carrots are in as well as sweet potatoes. Irish potatoes mostly out unless it’s a really good day. Grapes and blueberries and blackberries are okay. Anything citrus – not a chance until a week after surgery. I eat watermelon like it’s crack and I’m addicted. I can’t get enough of it. I want it more than sugar. Or chocolate or ice cream. I hate the way cancer has scrambled my food choices. I hate fritos and haven’t had potato chips in years, but suddenly I crave both and eat them regularly (after swearing off all artificial foods).

My Sense of Health and Well Being:

I have never felt older, or more frail. I can’t help it and I have no answer for it.

First Week After Chemotherapy

Leanne was right. Friday remained good. Saturday was okay. Sunday the diarrhea starts, but isn’t bad. Monday is hell.

I am up before 3:00 AM running to the bathroom. I am thankful I am not throwing up. That is the only mercy. I feel like I have a long sword inside me trying to cut its way out.

I drag myself in at 6:00 AM to prepare for a class. After being vertical for 20 minutes, I am in pain (the sword that feels like it’s buried in me after 20 minutes upright feels like it is trying to cut its way out). Every minute after 20 that I remain upright, the pain intensifies. I cannot take any anti-inflammatory medicines. My only pain reliever for this misery is tylenol.

It doesn’t occur to me to call in sick. I’m not sure why, but it doesn’t. I am upright. I can dress myself, staying home won’t alleviate the misery, so why not suit up and show up for work?

For the first time since I started teaching 30 years ago, I teach my first class from the teacher’s desk, sitting in a long-back chair because I literally cannot sit up straight unaided at this point, and standing up for longer than 3-5 minutes at a time causes excruciating pain. The new employee observes in the back. With 13 learners, my class support person (a new employee) sits in the. As luck would have it, our environment has changed and I stumble. There is a screen where I am supposed to find where the student nurses can enter their data, only the field isn’t there. Rather, it shows up in a flowsheet they won’t use on the floor and that we don’t teach. I spend a more time than I should looking for it. In the middle of this episode, the new girl gets up from the back row, and “tiptoes” (literally!) to the front of the classroom to show me where the field is.  (Hint:  When a 300+ pound woman tries to tiptoe unobtrusively to the front of the classroom, she has the undivided attention of everyone in the room.) I tell her (quietly) while we are in front of students, that I am aware of that, but they don’t use that flowsheet on the floor and that is not where we should be seeing the field.

She had snapped pictures of her last row of student’s computer screens, and says again, “Look here’s the field you are looking for.” I tell her that I know but I am going a different direction. It is all I can think to say. She stands and looks at me for a few minutes, then returns to her seat and doesn’t move and doesn’t help another learner for the rest of the class. She even manages to look like she is sulking.

Class moves on. When it is finally over, I run to the bathroom. When I return to the classroom, she is standing at the first row and snaps at me to shut the door. She proceeds to yell at me that she would never correct another trainer in front of their class because that is disrespectful and she is all about the respect, but how dare I humiliate her the way I did in front of the entire class.

After 30 years teaching and classroom experience, it hits me full force how far from normal I am. I have never let anyone correct me in front of a class before, and yet, on this day, it didn’t even strike me that she was doing just that.

She claims I yelled at her in front of the class. I tell her that can’t possibly be correct as I can’t speak above a whisper except with the greatest of effort. I just stare stupidly at her for a moment, then apologize if I hurt her feelings. I assure her I did not mean to, and explain again why I did not use the screen she showed me. I also tell her that if she didn’t want to have that conversation in front of the entire class, she simply could have instant messaged me what she was seeing and I could have privately given her the answer I had.

I explain to the new girl that I feel like I am dying and have been feeling that way for the last 8 hours (it’s now noon).

Her reply is priceless: “I can tell you are not at your best. Yeah.”

I hurt so much, I feel the rage that statement inspires only vaguely and distantly. But even as out of it as I am, I know that when I think about this exchange, I will wonder why in the hell if you know someone has gone through something horrible, and you can tell they are getting their butt kicked physically and sorely from it, why would you want to make their day worse?

I tell her I have to go home now. I email my team leader who promptly thanks me for teaching and asks if she needs to take the next day’s class.

I tell her I’ll call her from home. I drive home. Take the dogs to the park, and tilt on the park bench until I am horizontal, and after about half an hour, the pain is letting up, when the young man with Asperger’s syndrome (and no dog) sees me. He comes into the bark park to sit. When he learns I’ve had my first chemotherapy treatment and feel awful, he begins to expound everything he’s learned from watching television about chemotherapy. His voice isn’t loud, but his words hit me like bullets and I feel like I’m taking a pounding my tolerance level is so low. I last less than 5 minutes before I excuse myself and take the dogs back home. I just lay on the edge of the bed moaning when the phone rings.

It is a friend of a mutual friend. Years ago she had stage 4 melanoma – a spot on her leg. She opted for surgery, but no chemo. Instead she treated her body with organic foods, and cannabis oils. That was 10 years ago. Thank God for people who have gone down this road before me. Her journey isn’t mine. She advises me to not ever take the chemotherapy (too late), but she senses immediately how awful I feel and she whispers to me through the phone and this level of sound I can process without pain.

I agree to send her my email address. She agrees to send me a link. I tell her I’m already committed to the chemo, and she (again thankfully) does not try to argue with me.

I call Sharon and we agree to play it by ear. I will call her in the morning with whether or not I’m up to teaching. Then I can say (finally) this cursed day is over.

November 18, 2016

FYI: I am not a Breast Cancer victim. I loathe the word Breast Cancer Survivor. It has become synonymous with “refugee”. Pathetic.

I am a Breast Cancer Warrior.

I intend to be a DAMN successful one.

…

Undated

To my friends: An RN on 4 Specialty reminded me today of this poem, Invictus, by William Henley, when after one leg being amputated because of TB, he was faced with losing the other leg as well. His entire literary reputation rests on this poem that my grandmother taught me as a child. It has been quoted by Vietnam POWs, Winston Churchill, Nelson Mandela, and Barack Obama at Mandela’s Memorial service; also quoted by laureate Aung San Suu Kyi. And, alas, selected as the last thing read before Timothy McVeigh’s execution for the murder of 168 federal employees, citizens, and children. st thing read by Timothy McVeigh before he was put to death:

Invictus

Out of the night that covers me, Black as the pit from pole to pole,

I thank whatever gods may be For my unconquerable soul.

In the fell clutch of circumstance I have not winced nor cried aloud.

Under the bludgeoning of chance My head is bloody, but unbowed.

Beyond this place of wrath and tears Looms but the Horror of the shade,

And yet the menace of the years Finds, and shall find me, unafraid.

It matters not how strait the gate, How charged with punishments the scroll,

I am the master of my fate: I am the captain of my soul.

 

 

First Chemotherapy

I worked 36 hours from Monday to Thursday (11-7 to 11-10) and came into work at 5:00 AM on Friday morning so I could leave at 9:00 and “flex” my time for the rest of the day. I did this two more times before I got smart and asked for and received permission to have an “adjusted” work week (Sunday through Thursday) on Chemo weeks.

One thing this experience teaches me over and over again is to not be shy about asking for help even if you don’t know what type of help you need. By 9:00 AM, I’m stressed and fly out of the office racing home so I can walk the dogs before my chemo buddy picks me up. She pulls up outside the Apartment Complex gate while I’m still at the dog park and picking up poop. She waves and I tell her I’ll be right out. I’m worried about being late, but Gayle who has been down this road before says, “Don’t worry, they won’t start without you.”

I live about five miles from the infusion center but, even though we are running late, I ask Gayle to drive by the corner Starbucks so I can get a latte before heading to the Infusion Center. I probably felt a little trepidation over what this day would be life. I hate “new and unknown”   experiences, but Sharon, Lynda, and Gayle (my three survivor friends) have all been nothing but encouraging. I stayed busy enough that I didn’t really give myself time to think about it. That strategy worked well until I was riding in her GM Rogue and we were on our way to the SF Infusion Clinic. Suddenly I have the urge to fret over everything.

Mostly, though, I feel good. I can’t tell if it’s false courage, or if I have just not thought it through. When told over the phone I had bilateral invasive ductal cancer, I hung up and cried. Then I cursed. I was grateful that I lived alone so the only witnesses to my melt down were the two Weimars who, by now, are accustomed to the occasional weeping spells. Once I decided to be open and “writerly” about it and whine to all and sundry if I felt like it, my attitude about having breast cancer improved dramatically. Somehow, I channeled a core of myself that plows right in to the middle of things and says, “Okay, we’re gonna settle this score my way. Friends tell me this quality is my most charming and irritating: It is the part of me that refuses to accept direction, either good or bad, and stubbornly goes her own way, the world and practical advice be damned. I made a decision that day in late September when I hung up the phone feeling sorry for myself: I was going to poke as much fun at Thing One and Thing Two, as I promptly named each breast, as I could. I planned to laugh my way to remission, and then on to a cure: Cancer be damned. A funny thing happened after I made that decision: my need to weep and wail and gnash my teeth and bemoan my fate shrunk significantly.

I think this payoff is what people refer to when they say, “Attitude is everything. With the right attitude, you’ll sail through this and be fine.” Attitude is not everything. Attitude alone will not cure cancer. Attitude brings no guarantee of a cure or remission or a good outcome. No one can answer why two people about the same age, in about the same condition, with the same kind of cancer, at the same grade and in the same stage, taking the same treatment will have very different outcomes. No one knows why one person “beats” the very thing to which another succumbs.

But on this morning, running late, with my latte in my hand, and my buddy beside me, already helping me laugh along the way, I feel like I’m setting off on an adventure. We arrive at the Infusion Center. Unlike my first trip there, when I told her the address, she knew exactly where to go.

I check in at the front desk. The clerk asks me if I’ve traveled outside the country in the last month (testing for exposure to Ebola and other communicable diseases). I say, “No, and not to Florida either — I haven’t been exposed to the Zika virus.” The woman refrains from rolling her eyes, but just barely and goes back to staring at her computer screen, typing as she says, “We’re only required to ask if you have traveled outside the country in the last month.” In short order, I have my wrist bands (plural), and are seated in the sitting area, waiting. I read the Tulsa Magazine with the update on the state of dog rescue in Tulsa. Gayle and I each look like we’re packed for an overnight stay. My briefcase has three books (who knows what I’ll feel like reading?), three diet Pepsi’s (It could be a long day, did I pack enough?), three bottles of water, and a few snacks (nuts mostly). Overall, I’ve brought a pretty healthy selection. I’m diabetic, and yesterday started on the Decadron (steroid) to combat the side effects of the chemotherapy. It’s been Katie bar the door since yesterday morning. Just as I get comfortable, they call me back.

To my delight, I recognize my nurse, Leanne. I taught her how to use our hospital’s Electronic Medical Record when she was hired back in April. I recognize her face and she knows me instantly, and suddenly I feel like I’m among friends. It’s a large room with five pods, four “chairs” (think of this as a cubicle with a recliner “patient station” chair).

The “chair” stations are separated by walls about five feet high. The last three to five feet are clear plexiglass so that any nurse standing anywhere in the room can see at a glance what is happening anywhere else. Not until my last chemotherapy session 24 weeks from this date will I realize the brilliance of this arrangement.

Leanne is wonderful. In the time it takes me to settle in the chair and recline (yea!) and cover myself with a lovely plush and purple throw, Gayle (my chemo buddy who suddenly feels like an old friend) and my nurse who I’m delighted to say I know and who assures me (convincingly) that she recalls my class with fondness are giggling like school girls out on a lark.

Here’s the routine:

1. The nurse, tech and any volunteers come by to make sure you are comfortable. Do you need a warm blanket? Something to drink? Are you hungry? Would you like snack baskets? (Suddenly, I’m envisioning five to six hours, once every three weeks with nothing to do but sit and get waited on. I wonder if I’ve managed to hit the jackpot and make a note to self to buy a lottery ticket.)
2. The tech comes by to take my vitals. This is remarkably painless. (Technology does make our lives easier.)
3. My assigned nurse, though no less than three or four will check on me throughout the long day, sits down with me and reviews allergies and then goes to check the labs and orders and comes back to tell me what the agenda is: Progetta first, Herceptin next, then Carboplatin and Taxotere. They save the hardest for last.
4. My Nurse Tech (Janet this day) asks me what I want for lunch and informs me that Schlotskys will cater lunch.
5. I begin to think that I will love this once every three week chemo and immediately begin plotting how I can arrange to come every week (well okay maybe I didn’t love it that much, but I did think that chemo had been vastly under-rated).
6. In short order, Gayle and I break out our respective novels, and begin setting up “stuff” on the side trays attached to my recliner.
7. I promptly knock over the first Diet Pepsi I opened and set on my tray. I barely miss showering Gayle. I have visions of chemo buddy letting me walk home from treatment, but she is a perfect doll. She goes for towels and help and in no time, my Nurse Tech and RN have mopped up the Diet Pepsi and repeatedly assured me it is no problem and everything is fine.
8. Then I knock over my second Diet Pepsi. Gayle responds more quickly this time, and my tech and nurse are laughing as they help Gayle and me mop up. Well mostly her. Me they insist should sit down. (I think I catch a hint of “before you do anymore damage” but they control it exceptionally well. It’s hardly noticeable.)
9. When I accidentally spill the coffee Gayle brought me, I’m mortified, but by now, the staff treats me like I’m a favorite idiot relative. I can’t help myself. Gayle makes the “banning me from the Cancer Center a joke. I wonder how bad that would really be, but make sure I don’t wonder that aloud.

We are well into our “spa day” jokes and I’m thinking I’m going to really enjoy this experience: 5 or 6 hours to kick back in a recliner with a buddy and chat and laugh and drink lattes, while I get re-acquainted with nurses who tell me how much they enjoy my class. What’s not to love? They even cater lunch from Schlotsky’s. And while I brought my purple velour throw, I don’t feel like I need it. The room is cool, but not cold.

They hang the drugs in this order: Zofran; Amend; (anti-nausea), Progetta (1.5 hours), Herceptin (1.5 hours), Carboplatin (1 hour), and Taxotere (1 hour). Things go swimmingly until about 20 minutes into the Taxotere drip: when I start feeling flush. My chemo buddy spots the reaction before I do and waves the RN over. She stops the drip and switches to saline. Thirty minutes later, she restarts Taxotere at a much slower rate. My reaction: I felt flushed. My forehead was dripping like I was in a sauna, and a red rash looking reaction had started to crawl up my neck. I am more grateful than ever that I have a chemo buddy.

At six O’clock that evening, Gayle and I are the last remaining “patient/chemo buddy” in the Infusion center. Leanne disconnects the Carboplatin and hangs the saline drip and then asks me if I have any questions. I tell her, “I understand Saturday and Sunday will be hell.” She looks at me and shakes her head. She says, “No. No. We really don’t like sick people here. We’ve loaded you up with enough meds for the side effects, you will feel great tonight, and pretty okay tomorrow. Sunday may be rough around the edges. Monday, Tuesday, and Wednesday will be hell.

My jaw drops. “Leanne, I’m teaching RN 100 through 200 Monday through Thursday next week, and training a new trainer.” She just shakes her head sadly. Gobsmacked, that’s me. Gayle bundles me out and drops me at home. I walk the dogs. Now I have nothing to do but wait and hope Leanne is wrong.

Reunited

I almost called this entry, Homecoming. But today, April 7, 2017, is memorable for two reasons: Toby and Ruby come home even though I am still not sure I’m up for walking them to the dog park three or four times a day. But I need them home, and here we go. I get the first installment of the pathology report right before 5:00 O’clock on Friday evening.

Gayle brings the babies around noon. I am prepared. Ruby is bouncy and we expect both dogs (about 90 lbs each) to be excited. I am sitting down with a pillow over my lap. I needn’t have worried. Toby comes straight to me and stands front and center with his head leaning towards mine while I pet him. He doesn’t so much as twitch for a full 10 minutes. Gayle refuses all help unloading and brings in their food, their medicine, their snacks, etc. I keep petting Toby while Ruby circles and checks in: Pet me, okay time to check out the bedroom. Yes, it’s still there. Pet me mommy. Toby’s tail is a whirligig while it goes 360 degrees. Ruby’s tail whips back and forth as she patrols each room, stopping by me and Toby on each pass to get petted and fussed over.

After the greetings are over, and Gayle brings in the last load and sits down, both Weimars abandon me to fuss over her. Toby stretches his neck up to her while looking adoringly at her. His tail has a furious momentum all its own. As she bends to pet him, one eye rolls toward me to ensure I’m catching this moment. Then Ruby takes her time fussing over Gayle and dancing around her, stopping momentarily only to eye me and make sure I see this. Gayle says they are pouting over being abandoned by me. I’m not so sure. It’s possible, but they have been watched before, and mistreated by someone I thought sure would care for them. I conclude this is Weimar talk, for “She treated us real good mom; keep this one.”

Gayle and I talk for a while with the dogs going back and forth between us. She takes me to pick up my truck. The rest of the day is lounging: one quick walk to the dog park where I reconsider whether or not I’m ready for this, but we find an accommodation. I let them walk with me off leash to the park. They follow me. I take snacks to ensure they stay close. They walk on leash back home and even Ruby pulls less than she normally does.

Around 5:00 O’clock Dr. Gibb’s physician’s assistant calls and I know from the way she asks, “Are you ready for some news that the Path report is back and some of the news, at least, is good.

The endometrial uterine cancer was contained within the uterus; the ovaries had only benign cysts on them, and no lymph nodes in the groin were compromised.

Good news indeed. I send some group texts sharing the news, and the Weims and I spend the rest of the evening cuddling. And walking out to the bark park

One Week Without Weimars Makes One

Weak. I miss them terribly, Ruby and Toby. They watched over me faithfully through all the chemos, all the sad slides from sitting upright on dog park benches to laying horizontally on them like a homeless person with Toby standing nervously over my head and Ruby patrolling a small perimeter around the bench.

My chemo buddy watches them. She lives on three quarters of an acre with her 99 year old mother and a standard poodle Louie. The first night there, Toby sleeps in Gayle’s bed. He has never done that before and I’m jealous. Ruby takes the two shirts I send with them, lets Toby sniff them, and then trots off with both of them to her bed. Gayle calls me with nightly updates which leave me wanting to cry when I hang up. I know, however, that if she pulled me to the park now, I’d be in trouble. I have to give it a week. Some folks are saying two. I won’t last that long.

Gayle sends me pictures of Ruby’s “laundry sorting skills”, which has Ruby’s unique stamp. By day three, Ruby is challenging Toby’s right to be in the bed. By day six, both of them move in. When I ask Gayle if they left her any room, she says, barely.

Post-Op follow ups.

Day Seven: I was supposed to measure the fluid in my drain but that quickly goes south. Most of the time it is “scant” — not even close to half way to one cc, which is where the measuring starts.

The drain under my left arm comes out. Dr. Johnson pronounces everything fine. At the gynecologist’s appointment, the physician’s assistant looks at my incisions. Almost all of the laparoscopic incisions are completely healed.

In other news, I lost another 6 pounds the first week after surgery.

I tell my chemo buddy everything is going according to plan. The Weimars come home tomorrow.

The only problem is that I still hurt. Everywhere. All the time. I’m close to being out of pain meds. If I want to get out of bed, I have to think about it and plan it for a few minutes before trying it. Then I have to try it. Same for going from sitting to standing or standing to sitting, or even climbing into bed.

If I am up for two or three hours, even for just riding around in a car, I have to lay down for six. I still feel old and frail though now I am convinced I am going to get through this, and, for the sake of friends I want to continue to call by that name, I curtail my incessant whining.

I can’t wait till tomorrow. The Weimars never care how much I whine and they are the only animals I know who can still out whine me.

Going Home

I don’t feel much better on Saturday, April 1, 2017. Rita is gone. My sister comes in. I still hate the food. They can’t get the consistency of oatmeal right. But today I’m allowed an omelet of sorts.

Around 9, they pull me out of bed for my “walk about”. I have to restrain myself from groaning like an old woman. I’m creeping around the hall like the old woman I feel I have been transformed into when my gynecological surgeon walks up and way too cheerfully says, that’s what I like to see: my patients up and walking. Great. She says I will go home today. I DO NOT feel ready, but am sick of being here and am exhausted from having my sleep continually interrupted.

A supervisor comes to disconnect the port, but then realizes that two other surgeons have to sign off on my discharge. For what it’s worth, I tell her that the lead surgeon has signed off and the other two were “deferring” to her all along. The port doesn’t get disconnected then.

Blessedly, the monitor does, and the incessant beeping and honking it has been doing for the last two days ceases, and from about 10 to about 1:00, I get the best nap, I have had while in the hospital.

Then I am home minus the Weims whom I miss horribly. But I can sleep. Karen sees me settled and splits to get lunch and go back to her hotel.

She comes back with supper. A chicken avocado sandwich with fries. I am starving and real food seems adequate compensation for going home before I feel ready which leads to another surprise. After six bites, I’m stuffed. I have always had an appetite. Always. No one is more surprised than I, but of course my sister has a name for it: early satiety.

I sleep some more. I take my pain pills regularly. I make it to the bathroom when I need to. My bowels have still not woken up from surgery and I’m sucking down mylcon up to the allowed amount per day. Nothing.

The Worst Day

Friday, March 31, 2017.

I wake at 6:30 AM with a hand on my shoulder: Dr. Johnson. He appears to me as though I am dreaming him, but tells me that from his perspective the surgery went great. He thinks he got clean cells on the lumpectomies and only 5-10 lymph nodes on the left arm. Everything’s great.

I get to order breakfast after shift change at 7:00. Runny oatmeal and overcooked, bad toast. Yummy.

I see Dr. Beligk at around 2:00 PM and he is all smiles. His part went swimmingly. Do I feel any pain? I put my hand on my lower right side and feel a bandage. He looks at it and says, “Oh well, my dear, you just had major surgery there.” It feels like a giant hole in my gut. Then he informs me he also took my appendix?

Why, was anything wrong with it? No. I’m exasperated. Why? Because 100 percent of the patients whose appendix he takes don’t get appendix cancer, and I’ve already had 3 kinds of cancer.

I can’t argue with that logic.

Dr. Gibbs we see around 5:00 PM. Everything is fine.

Of course they, and I, know that we won’t know if everything is “fine” from surgery until the all-important path report comes in. Did we get all of the lumps in the breasts? Did we get all of the uterine cancer with the hysterectomy, or had it already “moved out” into other body parts as yet unknown?

When Dr. Gibbs hears that I have gone to the bathroom twice and sat up for lunch in the chair by the bed, she tells me she wants me walking twice more today. I groan. I don’t feel like walking. I want to whine, turn off the monitors, sleep for about 12 hours and then start over.

What sticks out for me from this day is the “long” stagger across two or three feet to the bathroom. But I can make it on my own, though I have “assistance”: I have to ring the nurse. I get the unit secretary. I wait for a tech or RN to come and let the bed rails down. Then they ask if I need help. They are young and healthy. I have to sit and think and sit and think about how I am going to move before I attempt it and that lurch of two to three feet makes me feel like a beached whale trying to walk on sand.

But each time I make it. Each time they cheerfully inform me I am doing great. Each time it feels like hell and I quickly learn to time the walks and bathroom excursions to just before due for a pain pill.

My sister brings dinner from the White Lion which is heavenly but my appetite is such that with 4 bites I’m full. Then I have to venture out into the hallway. I make it to the nurses’ station and despite encouragement, turn and hobble back to my room. We do it one more time around 10:30 PM that night.

The whole experience leaves me feeling weak, frail and old. I hate it. Hate it, hate it, hate it. No one seems to believe I am going home today, and indeed, Dr. Gibbs confirms one more night when I see her right before supper.

My sister leaves around 9:00ish. Rita doesn’t leave until she sees me take the second walk at 10:30 PM. With an early flight in the morning, I won’t see her again before she flies home. After she leaves I spend a lot of time fretting that I didn’t tell her enough how much she means to me.

The Big Day

I almost titled this blog, The Open Moment.

I can barely keep my eyes open between walking Rita back to her hotel parking lot after supper at the White Lion and getting myself home. I hit the bed instantly, and only roll out around 11:00 to (gross alert) take the enema required and load up on Vitamin C, and then, you guessed it, I can’t get back to sleep.

I recount all I have left undone: at work (a document undone); at home (trash not carried out, cleaning not done); in my writing. I’m exhausted. I feel like I should sleep, but I cannot. Then I decide screw it, I’ll have plenty of time to sleep on the table tomorrow (like it or not), so I read. I putter. I do one more load of laundry. I doze lightly, and am still up and taking the dogs walking at 5:00 in the morning.

By 6:45 AM, Rita and I are exchanging texts. I swing by the hospital first to see if I need to do anything with the Easter baskets for the friends and family who are coming. Nope: A coworker has them all packed for delivery.

I still don’t even know how long these surgeries will take. I had imagined all three surgeons working on the different areas of the body, but of course that doesn’t square with reality (Three surgeons barking orders in the same room at the same time? Yea, not so much.) They will go in relay. Dr. Gibbs will go first. After all, it’s her OR and her robot. She will do the laparoscopic assisted hysterectomy: Everything, including ovaries and fallopian tubes which appear perfectly normal. Except for that strong history in our family of Ovarian history and no annual “Ovariangram”. It is almost always caught in stage 4. I only really got on board with the hysterectomy after being assured Dr. Gibbs had plans for the ovaries also. Doctor Beligk will follow Dr. Gibbs. His surgery is different: He will be hunting for the lymph nodes in the groin. Hunting is the right word. I still get queasy when I think about it, but I’m not on board. We will do what we have to, and I am still in it to win it. Dr. Johnson (my first surgeon of record) will go last. He has the two lumpectomies, the sentinel node in the right arm and the sentinel and axillary nodes in the left arm. His surgery will take the longest.

But on the day of surgery, the first person Rita and I encounter is the RN who takes less than 5 minutes to get me stripped and into the gown (stepping out briefly for privacy), and then back to access the port, and hit a vein in my arm (was never sure what that was about).

The first surgeon I see is Dr. Johnson who shakes my hand. I don’t know where all my fear went. Dr. Johnson wears a royal purple shirt and tie and I tell him he is wearing my lucky operation shirt color.

I see Dr. Beligk next. He is all smiles and I like him even more now than the first time I met him. He is the one who informs us that I’ll be out for between 5 and 7 hours. Yikes!

Dr. Gibbs I see last, already gowned, and she barely sticks her head in.

We were told to arrive at 8:00 AM. I was there at 7:30 AM and prepped by 8:00 AM.

We wait.

We wait some more.

Surgery time was 10:00 O’clock. It comes and goes. I’m still in Pre-op.

My sister Karen joins us, and then Peppi who managed to get lost on her way to Tulsa. (Don’t blame her, I’ve spent 20 years getting lost in this town.) Neither can believe that they are getting to see me before I go in. The word is one surgeon wasn’t prepared, so Dr. Gibbs moved on to her next surgery.

I have not eaten since 8:00 PM the night before. I’m ravenous, and getting grumpy. It’s a small room. I’m trying not to drive out the people who matter to me most. We start subtracting “stars” from our “review” of this hotel. The thin cotton gown? Definitely subtracting a star for that. The uncomfortable bed I’m left stewing in while I wait? We’re past three stars and falling fast. The lack of room service? Oh dear…..

Around noon, my sister starts to panic that my chemo buddy and dog sitter is not here. Rita has the key card and spare. I make an emergency reservation at Bouse Fur House. I call another friend as back up pick up. Gayle walks in. I text Linda the dogs are taken care of, and Rita quietly steps out of the room to cancel the dog kennel reservation. Gayle had called no less than 5 times to say she was running late and my phone didn’t get the text/calls because of the maze that is this place.

At 1:00 they come to get me. With the hematoma, Dr. Beligk had ordered a gel foam mattress on the OR table, and a donut for my head to not aggravate the scalp hematoma. I’m actually comfortable on this table. This must be a first and I make a note to tell Rita that we’ll have to add a few stars back in on our rating.

 

The next thing I know I’m having the most wonderful dream of great food when someone calls my name and pulls me out of it. I wake up grumpy. It’s about 8:30. The recovery room lights are darkened. I’m the last patient in, and clearly, folks want to go home. I did not end up in 2 West. I am roomed in 4 Tower which is not quite, but almost an ICU because of the 7 and a half hours I was out.

Peppi had to go home earlier (which I expected), and Mary Lou has arrived to spend the night with me. I’m in my room by 10:30. I do recognize my Nurse as a former student, and she remembers me. The rest of that night is a blur of a monitor alarm that will not stop going off as neither the arterial blood pressure line nor the leg pressure cuff will give an accurate blood pressure reading. The pain when the leg pressure cuff kicks in is excruciating despite morphine and Percocet.

What do I feel? Woozy. Confused. Am I oriented to time, date, place, and who I am? Yes. Can I answer the RN about what surgery I had? Sort of. She asks what I had done, and I answer, “You want the list?” But I can answer lumpectomies, hysterectomy, and that was all she needed to know.

Do I hurt? Distantly, I am aware that I am uncomfortable and feel differently. I could not even have told anyone where I was bandaged. My right pinkie and the finger next to it are tingling and numb. Yes, I am hungry. Great ice chips.

I remember this night as long. Lots of fussing from my nurses as the monitor alarms seem to go off every 15 minutes. Each time Mary Lou wakes up, goes to my tray and feeds me ice chips and water. Each time I apologize that this time is not as fun as when we were spending that first night with each other’s hospitalizations around the turn of the century. In the early morning light, she looks exhausted, but she reminds me that we are both 15 years older this time around.

Bottom line: Not my finest hour, but this hurdle has been crossed. Now I need only get on with the recovery.