Waiting for Savasana

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The Hospital

I spent six days in the hospital. I don’t remember a ton. They put me on steroid injections and it was wild. I was exhausted but could not sleep, at all. I was up all night the first night watching tv. I am careful with tv in the hospital. My youngest was an emergency c-section baby who landed in the nicu with complications. You should have seen me. I was such a bad ass. They had me hooked up to all this stuff and I was all “Take me to my baby!!!”. C-section? What C-section? I just spent my days pumping and bringing the kid colostrum and stalking the doctors. But I was alone in my room at night. I tried to sleep with the tv on. Turned out to be a big mistake. I was awakened at 3am to a movie where I believe Sandra Bullock was being murdered. She was screaming and I think being strangled. It scared the crap out of me. I grabbed my iv pole and headed down to the nicu to see my kid. I don’t watch movies in the hospital. I see no need to be awakened to terror. I don’t even know what movie that was. So I had some gentle things on tv and just watched them as I tried to rest. I think I watched ocean waves all night, It was all I could handle. Leave Sandy alone!

I almost got to go home on the second day but they were debating about doing a biopsy…of my brain. Yikes. They wanted to drill a hole in my skull and get some samples of one of the tumors. So they kept making me fast and then letting me eat and then making me fast again. And then I thought I was going home but then they decided drill hole in the head biopsy for sure. Great.

So I had stuff going on the next week, I was supposed to fly to California and help my sister with her kids for a week. I love those kids. We were all looking forward to it. I had to call her and tell her the trip was off because I was in the hospital. I got her when she was pulling out of Starbucks. I gave her a brief description of what was going on. She started crying. Like really crying.

“Pull over!” I said, “Don’t get in an accident.” She pulled over and we continued our conversation. She lost her mom (my birth mom) eight years ago to stupid cancer. I hated doing this to her or my brother. Cancer is just the worst. It messes with families.

We got off the phone, the next thing I knew, she was here. My sister. She got on a plane and came to me. And she brought me a blanket. I am under it right now. It is big and plush and pink and soft and kind of heavy and it is perfect. I’ve known my sister for almost two decades now we have slowly built a relationship but when she pulled that blanket out of her suitcase, I knew. That is truly my sister. Only my sister would have brought me a blanket from her house. She stayed several days, hung out with my boys and helped me so much. I was told when I was a child that I would never get to meet anyone from my biological family. I am so glad it did not work out like that. We met when I was thirty-four and she was seventeen and we both gave each other a lot of side eye for a long time. Now she is thirty-four and I am the age our mother was when we all met back in 2006…and my sister, she’s my sister.

So the hospital was the hospital. Lots of tests and shots and blood draws. It is a blur. Husband was by my side but had to care for our menagerie of pets too. Eldest flew up from college, youngest was home for Spring Break. How is that for a cruddy Spring Break? You come home and your mom has a recurrence of cancer you haven’t gotten over dealing with eleven years ago?! That is no fun. He should have gone skiing instead or something. It is like I said, Cancer messes with family. He was seven the first time. My kids already went through this. Now? After eleven years?! Not cool.

I finally had the surgery where they drilled a hole in my skull. I got a lot of rest the next day. My sister went back to her family. My sons and hubby were hanging around. I finally got to go home. The day before I went to the ER was actually my eleven year cancerversary. I already find it annoying that I got diagnosed initially on April first but having the recurrence diagnosed on the 2nd, it’s just like, What?! Really?! This is stupid.


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Don’t look at me. I thought I had long covid.

So yeah. Just going to sit in this a second. I have a big story to tell. Way back in August of 2023, we took our youngest to college at a fancy school in New York and the experience was kind of a poop show. See, some genius decided that 5000 freshman and their parents could stand in line together at the Ithaca mall and wait in a huge line that stretched for over a mile and wait 4 or 5 hours together to get a room key for their dorm room. It was ridiculous and just, just, just, unbelievable and out of the 1000’s of people there only about 4 of them were wearing masks. In the whole building. There was a brief point where I went to Target to the Starbuck’s and I told myself to buy a mask but I did not see any so I didn’t.

So we endured the 4 and a half hour line, our kid got what he needed and we got him moved into his dorm. We ate at this amazing dining hall where they daily serve four kinds of Dole Whip cuz that is all I care about. My kid is going to an ivy and I just care about Dole Whip. Can you blame me? I kid. I kid. The reality is that I am incredibly proud of both of my boys. They are now 22 and almost 19 and they have been through it. They been through it! and I adore them and they have worked so hard and they are brilliant, amazing people whom I am fortunate to have loved and known and raised and they are just the best ever. So there is that.

My husband and I did Cornell stuff with the lad and then after awhile, we headed home to MN. We got some good ice cream on the way out. It was lovely and kind of scary leaving our youngest in New York but we did it. Then I began to feel sick and it got bad fast. We stopped in Ohio where I could not find a covid test in a pharmacy which I thought was weird but oh well. Eventually we got to my mom’s house in Indiana and she had a ton of covid tests and I tested negative but then a few days later, I tested again and it was positive and covid was no fun. It just kept going. Eventually, I could mostly function and work and stuff but the fatigue and exhaustion and headaches were just taking over my life. Until November, I thought I was finally feeling better.

In December, a couple days before Christmas, I fell on the stairs. Like my foot just flew out in front of me. I landed on my hip on the edge of a stair and wowza it was crazy painful. It was a low key Christmas. My husband cooked. We played Uno with the kids and watched Paddington Bear 2 which is the weirdest movie ever I think(Paddington in *Spoiler Alert* Prison?). The day after Christmas, I had a doctor appointment and got a covid booster. The next day my arm hurt like an MF right down to my hand. I have had the covid boosters before and my arm has never hurt…at all. The day after that, I felt terrible and basically have ever since. My doctor and I thought I had long covid. What can you do? Take vitamins and sleep? because that is what I was doing. For six months.

April 1st was my eleven year cancerversary. I went to a water fit class. I had a headache. My balance, not great. The last couple weeks leading up to my cancerversary had not been great. Things were getting kinda weird. My entire forehead was constantly inflamed. It just hurt. All the time, but there was this one time that it hurt and then I drank coffee and it didn’t hurt so then we thought I was having caffeine withdrawal so that was ok, right? Then my handwriting changed. It started when my ring finger kept shaking and then It was harder to write but I thought my ring finger was injured so, you guys, I bought pencil grips. Like for elementary students learning to grip a pencil. I thought it helped but it didn’t help and it was weird because I have to write things down for my job and I could no longer read my own handwriting. We actually started throwing Parkinson’s around. I have a family history. It was possible and a little scary.

But there was other stuff too. I’ve had migraines since adolescence and about two years ago, I had what we thought was a visual aura with migraine. Basically I get sparkly stuff in my field of vision which makes it so I can’t see for awhile. I got it at work and my boss thought my retina had detached but it turned out that my retina did not detach and my eye doctor just said probably visual aura with migraine. I don’t know. I didn’t think anything of it.

Then I started slurring my speech. This was the end of March. A lot of things went wrong in March. My personality got…intense. I was highly anxious. We had an easy-help the kid thing- going on with the youngest and it was freaking me out so I told my hubby I needed him to handle it and he just did not understand why it was causing me so much anxiety and I lost it! I kept saying I don’t feel like myself. Long covid was just too much? I was losing it.

The day after my cancerversary, I was working from home and I suddenly could no longer see my computer screen. Visual aura had taken over. I finally picked up the phone called my husband and said, “I need you to come home and take me to the ER.” It was ten in the morning.

We got there and walked in. There were about 3 very upset people in front of us in line who were not behaving very well and I am not sure why they were there. It was bizarre. Like weird stuff was happening with them and the people checking them in were trying unsuccessfully to keep them in line and I don’t know really what was happening. I was standing there, with my work bag on my shoulder and my teddy bear under my arm so who am I to criticize, you know? But I looked around and I thought to myself “I think I am the sickest person in this waiting room.”

I was.


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And Sometimes There is Weirdness

We all know that a major illness can bring out the best and the worst in people.  It can also bring out weirdness.

People say and do weird things and as long as it it not hurtful, it usually doesn’t bug me. I often laugh at it.

My friend who has been through this cancer stuff told me early on to expect people to abandon me.  She said they would say they were going to be there for me but then disappear about half-way through.

Have we had that happen?  I don’t know.  I kind of just want to be left alone at the moment.  I am glad people are not banging down my door.  My husband and kids and those friends in my *inner circle* have not abandoned me so I’m good.  Heck many in my outer and middle circles are still keeping in touch.  It doesn’t take much to keep me happy.

Like my husband has said, I am not always a big fan of *people* anyway.  Don’t get me wrong, I like people but I also like my privacy.

There is a woman who for YEARS stalked me.  She was relentless.  She made up stuff about me and my kids.  She was always parannoying about me and what I was doing.  She followed us around to the places we would go.  The worst was the rumors she would start about me.  The last rumor (but by far not the worst) being that when we had moved to our current home six years ago, we’d had a housewarming party and not invited people, when in fact we were to lazy/tired/antisocial to ever have a housewarming party.  This person called good friends of mine and told them I’d had a party and not invited them. Then they started calling me and I had some explaining to do.  Can you imagine having to deal with that crud on top of just moving?!  Those friends and I, we laughed and laughed…awkwardly.

Anyway, I always told my husband that my stalker had a definite misconception of me as a person.  I’m not very social nor do I care to be.  I spend most nights in my pajamas with a good book.  The joke is on her.

Don’t get me wrong, I like being invited to parties and whatnot, it’s just I often don’t go.

It IS nice to be invited though.

But to get back to the point, things are pretty quiet around here but I do not in any way feel abandoned.  I’m sick.  It’s summer.  People have things to do.  The world does not revolve around me.  I get it.  I’m cool.

I don’t even want to be a part of this.  I never did.

The stalker?  Oh yes.  She tried making contact.  And if I didn’t want to talk to her when I was healthy, why would I want to talk to her when I am sick?  Really?!

Facebook is a funny thing.  I have gotten some new friend requests.  Some I have accepted.  Some I have not.  One was a former friend of mine who dumped me several years ago.  This was a person I once cared deeply for and then suddenly, nothing.  She even stopped sending holiday cards.  It was hurtful.  We have mutual friends on Facebook and have never friended one another.  One day, after my diagnosis I get a friend request and a message.  Heard about my diagnosis and wants to follow along.  Hmm.  Huh?  All I can say is

Photo Courtesy of Grumpy Cat and JediGunship

Seriously?  I haven’t heard from you in years and NOW you want to follow along with my “cancer story”?  Why?  So you can watch me die and say you were my friend?  That is gross.

If you sincerely want to be my friend again, get off your tush and stick a card in the mail.  Offer to pick my kids up from school.  Come over and sit with me for a morning.  I’ll even make the tea. You could even pick up the phone and call me, texts are good too.  I like texts.  You want to “follow my story”?  Why?

Sister, I am not that kind of cancer patient.

And anybody who knows me even a little, should know that.

Creeped me right out.

I don’t know.  I like attention just not too much of it. And I am so, so very sick.  And honestly, my illness is really not about anybody but me.  I have no qualms being a grumpy cat when I need to.

Look, I know we are part of this voyeur nation but I don’t feel like being a part of some twisted reality tv show.  If you want to “follow my story” and not actually be my friend I guess you can read my blog.  Just remember, comments are moderated.


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Lots To Do

Wow.

I’ve been a busy bee.  I met with my “Nurse Navigator” yesterday for 3 hours.  Got the lowdown on what they know from my pathology report and what to expect.  It scares the heck out of me.

One ray of light is that the tumor is “normal differentiated” which means it is slow growing.  Fingers crossed… and toes.  I don’t know much else about the tumor itself.  Not all of the pathology has come in yet.  Ugh.

Tomorrow I get an MRI then meet with the plastic surgeon and then we are meeting with the oncologist.

Yes. I am scared.  During the day I can handle it.  Night time is tough.  I wake up and I am sad and terrified.  There’s nothing like being faced with one’s own mortality to really freak you out.

But life goes on.  And I still need to make dinners and take kids to appointments and get things done.

Telling people is also exhausting.

This is really, really hard.