It’s finally surgery day!

So here we are, July 2nd, the night before the surgery. And while I’ve decided to have the surgery instead of the wait and watch protocol, I’m still scared. I don’t like making big decisions for myself because what if I’m wrong?  I’ve had a million “what if”s in my lifetime.  My stepmom once told me my dad’s biggest disappointment was when I didn’t go to college at Fort Lewis in Durango, Colorado.  Guess what?  He could not have been as disappointed in me as I was in myself.  I feel like that about a lot of things.  You can never judge me as harshly as I judge myself so don’t even try.

Again, it’s July 2nd, I’m having surgery on July 3rd because nothing says “happy independence day” like a stay in the hospital.  And I’m sure the hospital staff on a holiday weekend is going to be stellar.  It’s a Tuesday night and I’m working.  Why am I working the night before surgery?  Well, because I thought I could.  I didn’t  think I would completely freak out and have to call my boss and tell him how scared I was.

My boss is interesting.  I don’t think he likes me, but we only have a telephone relationship.  Maybe I’m better in person.  I once told another boss that I don’t think my boss likes me very much, and she said, “I don’t think your boss likes me much either.” And then I realized that’s probably just his personality.  Anyway, I called and said, I cannot finish my last file because I’m terrified of my impending surgery and can’t concentrate and he said, “Say no more because I’m not that interested and take the rest of the night off.” Or something like that.

I went to the kitchen and Moonshine said, “I can’t help you if I don’t know what’s wrong,” and I just started crying.  It’s hard to be strong for your kids and also terrified as a cancer patient.  I’ve had a lot of that.  A lot of, “it’s fine, I’m fine, don’t worry,” and then crying because I’m so scared.  I’ve never had surgery before, it’s all terrifying, but I also don’t want anyone else to worry so I’m strong.

Pre-surgery Selfie

My sister is coming in again and Anna is meeting us there at the butt crack of dawn because I wanted to be the first surgery where Smarty Marty is fresh.  Hopefully he’s gotten a good night’s sleep because I certainly haven’t.  They take me back but only a couple of people can come back at a time.  My entourage is five deep so my sister and Tenderheart come back to get me settled and then they’ll tag in the others.  My nurse is Carol and she is, how do I say this, seasoned.  She appears to take no BS from anyone, but when I tell her I have three kids, she doesn’t make me Sophie’s Choice them and says they can all three come back.

There is a lot of commotion back in pre-op.  There are a lot of people poking and prodding and talking and there’s questions and things to sign.  It’s very chaotic.  But Carol is not to be rushed.  She’s very by the book.  Someone comes in to do something to me and she says, “I’m not ready, come back.” Okey doke, Carol.  But then it gets hopping and they’re moving Carol along and when my sister goes to get Sun and Moon Shines and someone else is talking to me, Carol starts asking Tenderheart questions.  Well, Tenderheart heard the anesthesiologist say I wouldn’t be able to walk (with the epidural in) and she started crying.

My sister was gone less than five minutes, and Tenderheart is in a heap in the chair bawling because she can’t answer Carol’s question of if I snore, I certainly do not, and she thinks I won’t ever be able to walk again.  Tag this chick out, she is not helping keep me calm.  Sun and Moon come over, Anna wishes me luck, and takes Tenderheart out, and I tell Carol I do not snore.  I’m strong, I’ve got this, the Shines wish me luck, tell me they love me, and everyone goes.  I’m alone and terrified.  People start coming in to take me and I start shaking.  Carol puts my shower cap on and touches my forehead and tells me I’m going to be okay.  I’ve never been more thankful for someone in my life.  She was the calm in the storm that was going on around me.  Everyone was very clinical and down to business and Carol was compassionate and kind.

I was wheeled back to the operating room and I immediately asked to be put under.  They should do that when you walk in the hospital.  Just put me under.  Everything is so stressful and scary, just a little something to take the edge off as you park your car maybe.  I found my guy, the anesthesiologist, and Smarty Marty, so let’s get this thing going.

Next thing I know I’m in recovery and I’m wondering why all these people are in my house.  I’m worried because my house isn’t big enough for all the people in there.  I open my eyes and say, “Why are you in my house?” And my recovery nurse says, “Well, hello.” Then I remembered.  The girls come in and I immediately say, “You’re the best thing I’ve ever done with my life.” They thought it was the anesthesia talking, but I wanted to tell them that before the surgery, but I couldn’t get it out without crying.  My recovery nurse said her dad had the same surgery I just had and he was doing great. We were so thankful for her telling us that.

I have encountered some amazing people in this journey.  Everyone I met at the hospital, all the nurses and staff were all so kind.  I did have a bad experience I’ll get to when I went to the emergency room, but that’s because I was on a general floor and not the colon surgery floor so they didn’t have the supplies for an ostomy and didn’t know where to get them, but I don’t want to get ahead of myself since we’re still in July.  Maybe I’ll finish this story by the end of the year. Zzzzzzzz

Back to recovery.  They told me before surgery they’d have me up and walking that night.  Okey doke, let’s do it, I thought.  However, have you ever had your abdominal muscles cut? You don’t realize how much you use your abs until you don’t have them.  And listen, mine are not great, more like a keg than a six pack, but at least I could use them.  My favorite thing to do during that time was rock back and forth on my back and cry, “I’m a turtle.” Because that’s exactly how I felt.  So “walking” after surgery turned into just sitting up on my bed and even that was hard, where’s my pain button.  I had a catheter and an epidural, what more could I need?

My sister was adamant that someone stay with me in the hospital.  She said you get more attention when you have a family member there.  I didn’t want anyone to be inconvenienced by having to sleep on the hospital couch, but I was never more thankful that someone did.  Every night I had someone stay with me and sleep as much as I didn’t because of all the comings and goings and the machines beeping in the middle of the night and IVs that needed to be changed and no one sleeps in the hospital.

I’ll have to finish this tomorrow because I’m crying remembering Carol.  This is why I couldn’t write when I was in it, I feel like I was detached just going through the motions, just surviving because I didn’t know what was coming next.  And what came next was 8 of the worst weeks of my life…

 

Curveballs coming at you

So imagine this — it’s the week before my surgery. Let’s just pretend it’s still the end of June and I go in for my pre-op appointment. My sister flies in and we know the drill. It’s scans in the morning, blood work, then lunch, then meet with the doctor about my surgery. We have our questions and concerns ready because we’re old pros at this by now.

Moonshine moved home so she takes us and we wait for the CT scan.

Then I go get bloodwork and off to Chipotle. It doesn’t have to be Chipotle, it could be Noodles or Smash Burger or the deli, but on this day I was feeling Chipotle. Even though I know what’s going to happen. I’m going to go back and talk to the doctor and get a “digital” exam not with a camera so he can see how high the tumor is. Knowing all that, I still had Chipotle. I’m ready for whatever they throw at us, or am I…

We go back to the hospital and meet with Smarty Marty my surgeon who has too much chest hair for my liking. He’s very dry. I don’t think he gets my humor. Where my radiologist thinks I should be a comedian, my surgeon might have to have my jokes explained to him. I don’t really care though as long as you get this cancer out of me.

What I notice when we get called back to our exam room is sitting on a table is a super long scope. Da fuh? “What’s he going to do with that?”, I wondered aloud.

He walks in and tells me that based on the scans that morning, there’s no evidence of cancer. What’s that now? There’s no cancer. Apparently I had a complete medical response to the chemo and radiation and they’re not able to see the cancer on the scan anymore.

Well, I have no idea what to do with this information. But I’m having surgery next week. I’m ready for surgery. I’ve been preparing for surgery since last November when they gave me a plan. I love a plan. Chemo, radiation, surgery, surgery. That was my plan. I have no idea what to do with “no cancer detected”. And by the way, why is that scope in here?

Well, the CT scan didn’t show cancer but he wants to get a peek to make sure. Ummm…could someone have told me that before Chipotle? That would have been super helpful. I don’t want to be too graphic, but that scope is only going to show one thing…beans. They talk me through an enema and I’d almost rather die but I give it a go, and I know it’s been a long time since I asked, “Can I handle anymore humiliation?” But the answer is still a resounding, “Sure can.”

Again, not to be too graphic but he can’t get a good look so here are my options: I can do a wait and watch protocol where I don’t have surgery and come back every three months for scans and go from there. Or I can still have the surgery, the ostomy bag for 8 weeks, and then a reversal. My sister and I looked at each other like, “What do we do now?” We were only prepared with surgery questions, I don’t know what to do with a wait and watch protocol.

During my disastrous enema episode, my sister starts googling to find out statistics on people who don’t have the surgery. But to be honest, I’m not a wait and watch kind of person. That part of my body has already grown cancer and I want it out. I’ve wanted it out since November 15, 2018 when I found out it was in there. I’ve gone through all this year thinking it’s going to be out of my body, and I’m not comfortable keeping a part of my colon that’s already betrayed me. I decide to go ahead and have the surgery.

And doing research, we found that most people who decided to wait and watch were people where the tumor was so low, they were going to have a permanent ostomy bag. That wasn’t me. I was going to have a bag for 8 weeks and then a reversal. Let’s see how that goes.

Time flies whether you’re having fun or not

Doesn’t time just fly? I had to read my last post to see where I left off. First thing’s first, I met with the gyn/oncologist and made the mistake of going alone. I was in a lot of pain from my radiation side effects and extremely emotional and couldn’t stop thinking about how much he reminded me of Paul Rudd, so I had no idea most of what he said except that I don’t really need a hysterectomy and there could be more complications because of the radiation. I left crying and with my head spinning after refusing to let him look at anything because I was in so much pain.

The last few weeks of radiation were the worst of my life, including chemo. Because they were shooting the radiation at my pelvis, the skin on all my underparts felt like I was on fire. All the time. And because they were shooting at my colon, all the mucus membrane that’s normally in my colon went away causing me to have urgency issues. I’ll be honest, it was a successful day if I didn’t poop my pants, and I didn’t have very many successful days. I stopped wanting to eat anything because I knew what was going to happen.

And listen, my house is not that big. It’s not like I was running to the east wing bathroom. I couldn’t make it from the kitchen to the bathroom and it’s about 10 steps. I didn’t want to leave the house because of it. I can’t even describe the kind of depression that comes with that. It felt like my lowest point (so far). This went on for a few weeks after radiation because it stays in your body. So now, it still hurts when I poop but the urgency is gone and I can make it to the bathroom and leave the house. Small victories.

More side effects, I can’t feel my fingers and toes or my calves. They say it’s normal with the chemo and will go away in time but for someone who works on a computer all day, not being able to feel your fingers is not ideal. And not being able to feel my toes makes me a little unsteady. I’m not a fall risk but I certainly get around slower.

So what’s next? For my one reader who’s been clamoring for a new post, here you are. Next Wednesday I go in for my pre op appointment with new scans to see where we are. I get another “digital” exam. Not with a camera. And then Thursday I meet with anesthesia to talk about the logistics of the actual day. It’s go time. I’m having this taken out on July 3rd. I’ll have an ileostomy bag, which completely freaks me out, for two months while it heals and then two months later they’ll reverse that. God willing. Although the past few weeks I have been thinking how nice it will be not to poop for two months.

Some good things, at the end of my radiation, Moonshine graduated from college. I took a day off from treatment and flew down on Thursday night. I was on super duper anti-diarrheal drugs because I did not want to poop my pants at the Lloyd Noble (Oklahoma reference) or at her party. Friday night was a ceremony for the whole school. It was really nice. No incidents. Saturday was her party. I was dealing with my stomach and my extreme fatigue but I powered through and she had an amazing party.

Then Saturday night was her graduation and it was amazing. I was so proud of her. After a really nice Mother’s Day Sunday, we flew home, still hopped up on those anti-diarrheals so I wouldn’t have to use that airplane bathroom.

Then I finished treatment and two weeks later, finally started healing. My urgency wasn’t so bad, my skin healed, I was able to leave the house more. I helped Tenderheart move out of her dorm and into a sublease for the summer. I went to dinner for my birthday and didn’t get sick. Baby steps.

Also, my gyn/oncologist Paul Rudd called me and apologized for throwing so much stuff at me in my appointment and he talked me through the pros and cons of a hysterectomy and I decided against it. One because I don’t really need it. My cells came back non-cancerous. And two, there are more complications from the radiation in that area. Basically all my tissue down there is mush and he threw out the word “fistula” and I said, no, thanks. One surgery at a time and if I need it later in life, I’ll have to do it then.

I’ll have more info after my Wednesday appointment, which my sister is flying in for, so I’ll know recovery time and all that jazz. In the meantime, Moonshine moved home to start her job, which she loves. Sunshine is looking at places to live for grad school in Chicago. And Tenderheart will be moving back into the dorms to start her second year of college after staying up there and working all summer. Life goes on whether I’m pooping my pants or not. I can’t wait to never have to talk about my poop again. I’m counting the days.

In the meantime…

A lot has been going on with my colon, but there are some other ailments that have raised their wicked head to get attention.  Specifically, my cervix. Read ahead at your own risk.

The week before I started radiation, my radiologist asked when my last pap was.  What are you, my sister? My sister has been telling me to get one forever.  I said, “2011.” What? Is that not normal? It was the last time I had good insurance. My radiologist was appalled but also thinks I’m hilarious.  She also said since I was getting radiation in the pelvis area, I needed a pap to make sure nothing else was going on.

Backstory: In 1994, I had some abnormal results on some paps and had to have a couple procedures for abnormal pre-cancerous cells.  I was also trying to get pregnant at the time.  My gynecologist was 4′ 2″ with a pornstache.  The first procedure was a colposcopy and there were more abnormal cells so I had to have a leep procedure where they cut off the end of my cervix. It was horrifying.  To say those procedures were invasive is an understatement.  In fact, 9 months later when I had Sunshine, I looked for characteristics of that gynecologist, but she didn’t end up 4′ 2″ with a pornstache, fortunately or unfortunately. You decide.

Remember that fertility doctor who inserted his own sperm into his patients so he had a bunch of kids?  Anyway, I was terrified of that.

Slow forward to a couple of weeks ago when I had a pap and it came back with abnormal cells.  Then last Friday I had a colposcopy, which is basically shooting vinegar at my cervix and shining a light on it to make sure there are no more bad cells.  Well, listen, if I’m going to have anything shot at my cervix, it’s not going to make me smell like I’m coloring Easter eggs in my vagina.

But wait, that’s not all.  Not only did he shoot vinegar and shine the light, he couldn’t get a good look at my cervix so he had to get a hook and pull it forward.  Did your uterus just cringe?  Because it was like no pain I’d ever felt, and I’ve had three kids.  Then he found a polyp on my cervix and clipped that off for a biopsy.  Then he scraped some cells further up.  All this after saying, “I’m just going to look.”

Remember a couple weeks ago when I asked if I could handle any more humiliation?  Apparently I can and I did.

Then my radiologist said we might as well do a hysterectomy when I get my first colon surgery because she doesn’t want to leave anything that might cause me problems in the future.  Oh, good.  So let’s get all of it out.  What’s my appendix doing?  My gallbladder? Do I need my spleen? Anyone need a kidney? Can we put my bladder back where it goes?  I mean, really, while I’m open, let’s just fix everything that could potentially be cancerous or fall out in the future.

So May 8th, right before I leave for Moonshine’s graduation, I’m meeting with the gyn/oncologist to talk about that part of my surgery and hopefully come out with a plan that doesn’t lengthen my recovery process or involve shooting anything at my cervix.

 

Where everybody knows your name

I went to a bar the other day. I go every day now. And when I walk in, everyone shouts, “Christy!” And they’re all excited to see me. It’s exactly like “Cheers.” I’ve already pre-gamed my chemo pills so I don’t get a beer.

The hostess with the mostest Jane gives me a pager you’d get at any restaurant and tells me to have a seat. It goes off when my table’s ready. I’m kind of a VIP now since I’ve been going every day for a week so when my pager goes off, I return it to the basket and walk on back.

It’s kind of a maze back there but I know where I’m going. There’s a children’s play area as you first walk back on the left, and I pass a couple tables where they’re working on sick people. I’m sure they’ve just had too much to drink. I take a left then a right and get to my table, which is already all set up with my plaster of Paris leg mold.

I drop my coat and my purse and take my shoes off. This place is super casual. I’m wearing sweatpants without metal so I can just pull them down on the table and not have to change into a special gown.

The waitresses are so nice. They prefer to be called radiation techs, and they make sure I’m comfortable and that good music is playing and then they leave the room so I can get down to business. The business of radiating this cancer.

Exactly eight minutes later, they come back with some small talk. I tell them it was a piece of cake, only to be made better with actual cake. They need to work on their dessert menu. I pull up my sweats, and off I go. They have to get my table ready with the mold of the next person. I go back out past the sick people, the children’s play place, maybe some babies, which is heart wrenching, and on to the parking garage where I’ve had to fight for a space about 20 minutes prior.

And I go home and work, only to be back every week day until May 15th to hang out with my people where our troubles are all the same.

Wouldn’t you like to get away? I sure would.

A Break in the Clouds

I feel like my last post was a little dark so I want to start this week and my radiation with some positivity. Some great things have happened in the last almost five months since I was diagnosed. So here we go…

I love my port. I have terrible veins and my port, except for three times which I assume was user error, has worked beautifully.

I have had some amazing nurses. Except for one who was rough with my port and one named Kevin who Shelby wasn’t a fan of, they have been absolutely amazing. A special shout-out to the one who was in charge of calming me down and shooting the barium up my bum. She deserves a raise with what she had to see do. But seriously, being an oncology or radiology nurse has to be really hard.

Sitting there during infusions, I started the day really positive. I dressed up, I did my makeup, I tried to wear eight different outfits so I could get good pics. And as the chemo went in, I could feel the light leaving my eyes. And as the appointments went on, it got harder to stay positive and not vomit by the end of the appointment. But every single nurse except Kevin was absolutely amazing.

My sister is awesome. She set up my GoFundMe, which has been a godsend. She came in for my diagnosis and for chemo and stocked my freezer and changed my toilet seat. She deserves a medal. Several of them. She also got a colonoscopy and came back with a clean colon. Have you had yours?

My best friend Anna missed work to go to chemo appointments, always bringing food from her and her mom for my freezer and one day brought me Chinese in the middle of the day from my favorite place because I was craving fried rice. She’s the kind of friend who doesn’t need small talk and will just sit there for hours watching the light go out of your eyes while entertaining Tenderheart so she doesn’t freak out.

Now, you may think I’m motivated by food, but it never occurred to me how nice it was not to have to worry about dinner when you’re just trying to not vomit. So I guess I am motivated by food, but I really appreciate everyone who has brought me food or given me a ride or has been there to talk to or just reached out to me.

And believe me, I understand it’s hard for people to talk about cancer. I hate that I’m all cancer, cancer, cancer, but it’s that or I talk about my kids. I really don’t have much more going on right now.

When people say, “Let me know if you need anything,” I believe that and I will let you know, but most of the time, I don’t know what I need until I’m in it and I need it now, like when I’m texting with Paige about my constipation and she offers up some products that might help me and brings them over. That’s a friend you need. I remember a time when I didn’t have to be so concerned about my poop, also known as the good old days.

My mom has come in for appointments and she’s coming back for my first week of radiation. I’m so thankful she’s still well enough to travel and come up here because I’m sure it’s hard to be so far away when you find out your kid has cancer no matter how old she is.

Sunshine is an advocate at a domestic violence shelter. She already has a stressful job and then having to deal with me on chemo weeks wasn’t ideal. She’s been so amazing through this. Tenderheart giving up her spring break to come in for my last treatment and taking me over her Christmas break. Her name is “Tenderheart” for a reason but she’s been a champ even though I still won’t let her quit school. Moonshine and her boyfriend spent a Thursday over Christmas break in the oncology ward. I take my people to the most exotic places. But I’m so thankful to have so many amazing people in my life. You don’t know how badly you need people until something like this happens.

My cousin Cindi took me to dinner to celebrate my last chemo and we talked for four hours about true crimes. We didn’t solve anything but we might one day.

And I could never forget Toni or my cousin Gayla who have sent get well cards and motivational things. My old boss Julie who texts almost every day to see how I’m doing, all the comments on Facebook from people I don’t know reaching out, along with everyone who has contributed to my medical fund.

I’ve said it before but knowing this is curative and I’m not going to go bankrupt has been such a blessing. Just having the regular financial stress and not the medical billing stress has been amazing.

If I didn’t mention you specifically just know that I appreciate you, truly.

So this just shows you and me that the last five months haven’t been all bad, and even though I have a long way to go with five weeks of radiation and two surgeries, I got this. I have so many people in my corner rooting for me, so even though it’s overwhelming, I’ve never felt more blessed.

What’s Next?

So I finished chemo.  Eight rounds in 17 weeks and it was exhausting.  I rang the hope bell and told the nurses I would not miss them a bit. 

A couple of other things I won’t miss: the nausea.  Oh, I guess that’s just one.  Wait, and the constipation, which is mostly brought on by the anti-nausea pills.  So really, pick your poison.  Literally.

I won’t miss the infusions, the shared bays, the smell, the anxiety, the canned soup, the  two and a half hours where I can’t concentrate on anything, the cold sensitivity, the nausea.  I’m so tired of being nauseous.  I’m usually better the Monday after chemo, but last week it lasted until Wednesday, with Tuesday bringing on a migraine I had to work through.

On my last chemo appointment, I met with my oncologist Doogie Howser’s younger sister who told me about the next phase, which is radiation.  I said, “I got this.” And then she said, “You’ll get a call about your chemo pills you have to take during radiation.” And I said, “What’s that now?” Wah-wah.  So I’m not done with chemo, just the infusions.  I still have to take the anti-nausea and the chemo pills until I’m done with radiation in five or so weeks.

Then I met with the radiologist last week who told me about a wealth of other side effects that were to come.  Oh, joy.  I get why people just die.  I’m not saying I’m going to, but I get it.  I told Tenderheart that, but I meant, I get why older people say, “I’ve lived a good life. Jesus, take the wheel.” It’s a lot.  Some might say too much.  Tenderheart thought I meant I wanted to die and she had a total breakdown, and I didn’t mean me, but it’s a lot.

And the hits just keep on coming.  I had to get mapped last week so they could radiate only my tumor and not my whole body.  Stop reading here if you’re squeamish.  I would.  They shot barium up my bottom to radiate the part where my tumor is.  I said, “Literally, just shoot me.” Can I take another humiliation?  Apparently I can and I did.  And the nurse was so amazing, but really, it’s a lot.  Then they did a plaster of Paris on my legs to make a mold so every time I go in for radiation, I just stick my legs in that mold and lay exactly like I was laying today so they can radiate my insides.  Awesome.  Can’t wait.

And I get it.  I’m fortunate in that I can get the care I need and I am so lucky this is curable, but just when I think it’s the worst, there’s something else.  There’s a vaginal dilator so my vagina doesn’t close up during radiation, there’s barium up my butt, there’s too much talk about my butt.  I’ve spent my whole life trying to ignore it and now it’s front and center in the spotlight.

And then this put it into perspective.  For my infusions, I was on the adult area of oncology with a bunch of oldies getting treated for various cancers.  I was one of the younger ones.  However, on the radiation floor, it’s all ages.  There was a teen who was there for the first time sitting with her mom. There was a 2-year-old who was going to have her last radiation treatment the next day.  There was the bald 10-year-old skipping out with her sister and mom. There were all ages.  Cancer doesn’t care.  It doesn’t care if I’m uncomfortable or if I’m old or young.  It literally affects everyone indiscriminately. And I know this took a dark turn, but you get what you pay for.  I should just shut up about my barium up the butt and thank God this isn’t worse.

So here’s what’s next. I have radiation every week day starting next Tuesday. Supposedly it will only be about 15 or 20 minutes a day and the longest part will probably be the valet if there’s no parking in the garage. I booked my flight for Moonshine’s graduation and took that day off, and I’m praying I’m not too fatigued on her graduation weekend. Prayers still accepted. Let’s get this next stage going!

Just a bunch of musings

What happens when a cancer blog doesn’t have new posts? Do people assume you died? Not me, I’m alive!! And I’m currently at my 7th chemo infusion.

My sister flew in for the 4th one and made me a bunch of dinners to freeze. My bff Anna came to my 5th and brought me a bunch of freezer meals. And my mom flew in for the 6th and you guessed it, filled my freezer. The way to my heart is meals I don’t have to think about.

Let’s see, what was I not prepared for the last few weeks. My hair to keep falling out. I thought we were done and only the strong hairs had survived but it never really stopped so I cut it off. The thought is that as soon as I’m done with chemo it will start growing back, so fingers crossed the gypsy curse is done.

I wasn’t prepared for the amount of snot I would constantly make or the pain in my esophagus or the vomiting. When I thought of chemo, my first impression was the movie “Dying Young” where Campbell Scott hired Julia Roberts to be his nurse and he threw up all the time. I was assured with my three variations of anti-emetics that not only would I never have the hair of Julia Roberts, but that I wouldn’t be throwing up like Campbell Scott.

Let’s just say I’ll never be able to have Italian seasoned chicken or a grilled cheese again without thinking of it coming back up. And really, when’s the last time you’ve vomited? Not told your boss you couldn’t stop throwing up so you couldn’t come to work, but were actually throwing up. And listen, I don’t want to talk about poop let alone vomit but here we are. I couldn’t remember the last time I actually threw up but now I won’t forget it.

When my kids were little I think they didn’t think they could throw up without me. They felt like they had to come to my room first to tell me and then I’d go with them to the bathroom. Sometimes it was pretty close. And listen, feel free to go without me and I’ll meet you there. Do you need an audience? I’d personally like to throw up in peace or not at all if it was actually up to me.

I wasn’t prepared for all the outside stress. Life doesn’t stop when you have cancer. Your bills don’t stop coming, other people’s lives don’t stop, your landlord can still sell your house, my cancer doesn’t stop anyone else’s life from going on. And there’s very little concession from other people’s high sense of urgency. I’m scared all the time. Of everything. I’m stressed about everything except medical bills thanks to my go fund me.

And now some musings from the waiting room. It snowed last night and an old man just walked in wearing shorts and Birkenstocks. How did he even walk from his car? My boots were covered in snow, how are your feet not freezing? Also, you have to give your birthdate for everything and a man walked in with a 1989 birthday, which is the year I graduated from high school. The next guy was 1986. So young.

There was a woman last time and she was on her 8th treatment of the chemo I get and she looked haggard. Just like tired and sick. You know I have a fear of looking sick. And my mom said she was much older than me but she wasn’t. She was only five years older. Am I going to look haggard after two more of these? I feel like I already look haggard.

And now Fox News is on in this waiting room. What is happening? I’d almost rather die than listen to it, but I shouldn’t say that too loud.

This man is in the waiting room with his maybe 30 year old son, and the dad says, “My lady friend is here so I’m going to go get her. Text me what room you’re in.” He went down, got his lady friend, his son went back, and the dad is here in the waiting room chatting up his lady friend while his son is in the back getting chemo. What is wrong with people?

My life is a comedy of errors

Last week I had to go to the emergency room. Now, if you know me, you know it takes a lot to get me to an emergency room. It took me seven years just to get to a doctor, and a knee that wouldn’t extend for three days to get me to an urgent care. I do not go to the emergency room. Ever. In fact, this was my first time in my adult years to go to the emergency room for myself.

So it was bad. I thought I was dying. And actually what I thought was that I was having a fake heart attack like they had warned me about in my first chemo. Then I called the cancer clinic and they started throwing around words like “pulmonary embolism”, and you have to know besides my appendix bursting, an embolism is quite possibly the scariest thing I can think of.

And now that I’ve said that, it’s an aneurism that’s the scariest thing because there’s no warning. I would never go to the emergency room for a headache, I’d probably just die of an aneurism.

So I was having chest pain. Like right in the middle of my chest. And severe pain like I was doubled over and having trouble breathing. And it came on fast. I had just had lunch with Heather holla! She brought me a calzone and we chatted for a couple hours. Then as I was signing in to work, the pain started. I thought I could breathe through it because I didn’t want to waste a sick day or anyone’s time but it got so bad, I had to call.

The cancer center told me to call 911 or go straight to the emergency room and I was like, “Nah, it’ll pass.” And then they said heart attack or embolism and it didn’t get better in 10 minutes so I called Heather holla! to see if she’d drop me at the emergency room.

Here’s the deal. I don’t want anything to be wrong with me, but I also don’t want to waste anyone’s time, including my own. So if I’m going to the emergency room, I want it to be for something they can fix and tell me, “You were smart to come in.” I don’t want them to tell me it’s heartburn and go home, or worse yet, tell me it’s nothing.

And let’s not even get into how expensive the emergency room is. There’s a reason people don’t go unless they think they’re dying.

So I get dropped off and go in and have to wait in a security line to be checked in. I don’t know why there’s such security at an emergency room, but there’s obviously a reason. I wish they could just read my scan from the X-ray machine and save me the copay. I get checked in and they put me in a room and do an EKG, which took about 10 seconds.

At this point I call Sunshine to tell her where I am and to pick me up after work. I don’t want her missing work, but she yells at me to find out where I am and says she’s on her way. “Yells” is a strong word but she had a high sense of urgency to find out where exactly I was. I was fine. I was having severe chest pain but I was in a hospital, what could go wrong? Whelp, I have neutropenia so I’m more susceptible to germs, so that could go wrong. Mask securely on.

My EKG was fine but they admitted me anyway because they have to find a way to bill me. I walk back through two more security doors to a hive of rooms that you could easily get lost in. They make me put a gown on and a resident comes in to find out what’s going on.

Because my life is a comedy of errors, one of my curtains is gone and the glass wall where everyone walks by is just open to watching me change. They come in to try and fix it while five doctors are standing over me doing an ultrasound on my heart and throwing around words like “effusion”. Someone from housekeeping definitely saw underboob, but this is what I saw:

Turns out my heart was fine but because it’s a teaching hospital, I had to get a couple more doctors in to tell me there’s no effusion, whatever that is.

Then they do an X-ray of my lungs to make sure they’re clear, but they can’t tell if they’re actually clear unless they do a CT scan with contrast. I’m not sure why we didn’t just start there, but they saved the best for last.

They came in to do an IV and I said I have a port. Then they left because they didn’t know how to do a port. Listen, the only good thing about having a port is it’s convenient and my little wrist vein doesn’t have to do any work. It’s been through enough. The problem is they can’t get my port to work correctly (Sunshine said, “User error”) so they had to call my little wrist vein up from the minors and take blood from there.

However, because it’s a comedy of errors, they can’t do the CT contrast in my wrist vein so it has to be from my elbow or my port, which they can’t figure out. I wish I would have known that before they put the thing in my freaking wrist! After a lot of uncomfortable manipulating, they finally get my port to work and I get the CT scan with contrast and I’d only been there 5 hours at that point. Listen, they are not in any hurry to get you out of there, nor do they offer dinner in the emergency room.

The CT scan comes back clear except a little node on my lung that they’ll send my oncologist. That doesn’t sound terrifying at all, but it also doesn’t explain the pain, which I actually figured out on my own. More on that in a second. The main doctor comes in and tells me I can go as soon as they unplug everything and tells me to come back if it happens again. No, thank you.

7 hours in the ER and no one knows what the pain was but I’m leaving. I’m starving and exhausted. They don’t let you leave until you pay that ridiculous copay, so I do that and we’re on our way. But as I get to the car, my lips start feeling funny, like numb.

They had made me drink this drink with lidocaine and mylanta or something as disgusting earlier in the night that made my throat numb but that had worn off and this was just my lips. Then the right side of my lips started swelling. Well, there was no way I was going back into that ER but when I got home, I looked like this.

Okay, I’m a white woman and maybe it wasn’t that bad but there was definite swelling. I called the hospital and said I was having an allergic reaction to something and asked if I could take Benadryl. They said sometimes the contrast has side effects that don’t show up on the first one, but do show up on the second one. Great. I had had a CT scan with contrast in October and didn’t have any trouble. I took the one Benadryl I had in the house and the swelling went down a little.

The next day I woke up and my lips were swollen and my legs were covered with hives. The hits just keep on coming. Like, come on. I already have cancer, it’s enough.

Long story long, I had to go get a stronger hydrocortisone cream than the one I had and more Benadryl. And on the way to the pharmacy I slipped in my garage and wrenched my knee, however, I’ll probably die before going back to the emergency room. I’ll live with the limp.

Oh, and the pain, it was my esophagus. It’s a side effect of my chemo. But at least now I know my heart is good, my lung has a node, and I’m allergic to contrast. And the ER housekeeping crew knows I have very little underboob.

A Simpler Time

I got a postcard from Sunshine today. Where’s Sunshine been, you ask? Europe…over three months ago.

Aww, October 2018. It was a different time. I didn’t know I had cancer. My goal for the month was to get a doctor and get through the series “The Vampire Diaries”. Not a season, mind you, the whole series. And Sunshine was in Europe for three weeks of the month.

I was also dreaming about the lottery. Remember when it was really high around that time? Instead of looking up shady doctors, I was on Zillow planning which side of the park I was going to live in a four bedroom in Manhattan for two years. Picture of the floor plan? Yes, please.

It was a simpler time. And I don’t want to be all cancer, cancer, cancer but it has consumed my life…and my colon. And I’m off schedule by a week. Remember my tight timeline to get this wrapped up before Moonshine’s graduation? Cancer doesn’t care.

Picture this, Tenderheart and I go to Joann’s to get yarn because we’re going to my chemo and are going to knit/crochet. She knits, I crochet. We’re ready. We have my chemo bag, my new “Knit Happens” reusable bag, and a bunch of yarn. I go to get my blood taken and then wait. “Hurry up and wait” should be the slogan of any hospital.

We finally see the PA, which was okay because the appointment two weeks before, the oncologist made me wait 45 minutes after my appointment time. I hate it. All of it. She quickly tells me my neutrophils are too low to get chemo that day.

I don’t understand, we have yarn. And I feel good. Is there really such a thing as “neutrophils”? Sounds made up.

Apparently it needs to be at 1,000 and it’s at 800, which doesn’t sound terrible but she is unmoved. “But I feel really good,” I tell her. And then I burst into tears. “I’m on a tight timeline.” “Moonshine’s graduation.” “We brought yarn.” “I have people flying in to come to chemo appointments with me.” Un. Moved.

Tenderheart had a look of panic and tells me it’s okay about 100 times. I think if she tried to say anything else she was going to burst into tears too. I tried to be strong. I tried not to cry but the truth is, chemo sucks. And I hate it and I have to psych myself up to go every single time. I can taste the saline flush they do and have to have mints, my mouth tastes metallic, I’m nauseous, it’s awful, so the fact that I show up should be enough of a requirement for me to get it. And the fact that I couldn’t get it was just too much to bear at that moment.

I pulled myself together and Tenderheart and I walked back to the valet to get our car. We felt like we got a half day. And if it hadn’t thrown me completely off with my work schedule and people flying in, it would have been a really nice time. Tenderheart said she felt like I got her out of school early to hang out.

And I know in the whole scheme of things, it is what it is. It’s completely out of my control, which is the problem. I’m not that great of a “go with the flow” gal. I like a plan. Unless, of course, I win the lottery and live in a little flat overlooking Central Park for two years. East or west, doesn’t really matter to me. Then I’ll be as go with the flow as you like. But until then, I’m at the mercy of my “neutrophils” and my white blood cells and my oncologist.

And if you’re wondering, I sure did make it through the entire series of “The Vampire Diaries” in October. It was a simpler time.