I’m home now. I was admitted to the hospital on Thursday, January 21. It’s taken me a few days to rest and feel semi-normal.

..

Because of chemo, I have to watch out for the usual symptoms. I’m supposed to go to the hospital if I have a fever of over 100.5. I wish I’d just gone the first time I’d gotten a fever. Fevers are a very common side effect of the chemo drug I was getting and I don’t particularly like hospitals, so I didn’t report it at first.

When I finally did report it, the natural first thought was COVID-19. So they cancelled all my appointments and had me come in for a COVID-19 test.

It was negative. My fever subsided. It took days to get my chemo schedule back on track.

Then I got another fever. And chills and the shakes and body aches. And when I reported it this time, my doctor was unequivocal: go to the ER right now.

I thought I’d be checked out, given some drugs, and get sent home. Instead I was admitted for the night. Then the next. In the end, I was in the hospital for 10 days.

I can’t remember ever being so scared, unhappy, lonely. FaceTime is no replacement for being at home.

It was a staph infection. And the first few days was spent trying to nail down how it stated. Respiratory or skin? Too many tests ruled out respiratory, the most common, so attention turned to my port, installed in the center of my chest to make chemo less painful.

If you recall, I had a port until I finished chemo back in 2012, but when chemo resumed, I had to have another one put in. The second port never quite…healed, I guess? The insertion site was always kind of pink and itchy, despite getting doses of antibiotic cream. Of course, I ignored it too long and paid the price.

My hesitation to just go in and have someone look probably allowed the infection to get worse. It took quite a bit of testing to even figure out which bacteria was in my system and then it hung on against the antibiotics like a champ.

Meanwhile, they were worried the infection had found refuge in my heart valves, which is apparently something staph does, which would be bad news.

Fortunately my heart looked good. But at this point, they knew I was going to be on antibiotics for the long haul. They had to clear the infection, though, in order to put in another IV line to deliver the medication I’ll be getting for the next six weeks at home.

By the way, it’s an IV, but it’s called a PICC, and basically it’s a pipe that goes from my arm right down my middle and into a major heart valve, so the antibiotic can diffuse in my blood correctly.

Ryan went in to get trained on administering my antibiotic and handling my PICC, which given where it goes is not something to be careless with. Now he changes the antibiotic “bulb” every day, fitting a shower between connections, waterproofing my IV each time.

He started drawing eyes on the bulbs to cheer me up. Then he bought some googley eyes from the craft store. We’ve decided to name the bulbs “Cyril.”

We’re on Cyril the Fourth now. We’re going to meet Cyril the 42nd when this is all over.

…

Hospitals are the worst. There’s no way around it. Nurses rule the world and should all be sainted. Health care is a fundamental right. But hospitals, as a concept? It is impossible to get any rest in a hospital.

There was a schizophrenic patient who would start screaming and cursing precisely at 7:30 every night and keep going until he felt like it. One of my neighbors talked loudly on her phone all day as if she was poolside at the Halekulani, treating medical professionals like cocktail servers.

All of the staff were extremely competent and wonderful, though. I wouldn’t be here if they weren’t.

So everywhere I go for six weeks, I have to carry around a plastic ball tethered to a spot in my heart that receives a steady dose of medicine. I don’t plan on going far anyway. I was hoping to get COVID-19 vaccination, but that might have to wait until the treatment is over.

Fortunately, my husband, daughter, youngest son and mother in law are getting vaccinated.

My kids are awesome, my life force. My family is my sanctuary. More on them later.

…

Some good news: radiation went very well. I was noticing increased mobility by the fourth treatment. I hardly remember the pain now. I didn’t end up needing any of the stuff I ordered and don’t even bother with the parking placard. I feel like it’s good karma to save it until I truly need it.

I am now the proud owner of a walker, a cane, and an appointment to get a handicapped parking placard.

About a month ago, I had a weird pain in my leg that felt like sciatica. I’ve had sciatica on and off for a couple of years and it’s no big deal; usually some ibuprofen does the trick, but after a few days the pain was brutal. I couldn’t get up the stairs in my house without help. Even moving around in bed took forever because my leg hurt so bad.

Since the cancer in my bones is an issue, we knew we could’t fool around with it, so in short order I had tests done. I had an X-ray on the same day as my chemo appointment with no waiting and left with a ton of paperwork.

I was under the impression that cancer patients can only get radiation therapy once. It turns out I just can’t ever get radiation on my chest again, But I am going to get a short, easy course on my left leg, just above my knee. Once a day for ten days. In and out in five minutes, easy peasy, no Stephen King horror movie skin under the bandages this time.

I have been feeling better the last few days, but am still hoping for even a little bit of relief, since it comes and goes.

It’s scary to feel helpless at this age. I’m not young, but I’m not close to surrendering. It’s not even an option. I still have a family. I’m not even fifty yet.

Sometimes I’ve felt like my doctors aren’t entirely forthcoming about my condition. This is one of those times. I didn’t get to see my X-ray, and the words my oncologist uses now seem vague, like what he had to say might seem too frightening. My bloodwork has been improving, so the news of a growing tumor is confusing and upsetting.

If I didn’t have my family, I don’t know where I’d be.

My youngest has been driving me to appointments when it’s been too hard to drive. One day, as we were driving back from an appointment and I was feeling particularly sorry for myself, he said, “My friends all think you’re amazing. You’re the strongest person I know.” Whenever I think I’m being wimpy or useless, they’re around me, lifting me up.

This was a banner weekend.

It seems so long ago now that we were daydreaming about the time when our six- and two- year old children would be graduating, one from college and the other from high school.  Who could even have even thought then that we’d be in the middle of a hundred-year pandemic that would severely delay or alter graduation day for both of them?  Zachary was able to walk in a “drive-by” ceremony, which was, all things considered, surprisingly efficient and even kind of nice.  He wasn’t keen on participating in a ceremony or a party, wanting to save money to go on a trip to visit friends in the summer.  The drive-by ceremony was a nice compromise.  Meanwhile, Kate will have a ceremony in December, hopefully.

I counted on being utterly ecstatic this weekend, and I was truly happy, but I’m also very scared.  I have a biopsy of my liver on Thursday.  I’m not afraid of the procedure itself, but of what it’ll tell us about my future.  I am truly lucky to have lived to see this last weekend.  Just twenty years ago I would have succumbed by now, so to have made it is testament to medical science.

My hair is falling out again.  What I’ve read about my new treatment promised that my hair would start “thinning”, but it’s a bit worse than that.  It’s not coming out in handfuls like it did before.  Still.  It’s depressing.  I’ve been looking at wigs on the ACS website, contemplating life as blonde.

Stay-at-home orders are still technically in place here in Hawaii, with beaches slowly opening back up with restrictions.  In the past two months, we have only left the house for grocery runs and doctor visits.  We really, really needed to get outside, if only for a little while.  We headed to the west side, to Poka’i Bay.  It was a lovely day.  The ocean water was, as always, healing.

I’ve been unemployed for a couple of months, but I’ve been putting the time to good use.  In fact, it’s been nice.  Ryan and the kids have all been home since the outbreak, so we’ve been spending a lot of time together as a family and we still all like each other.

Take-out and delivery meals are expensive, so I’ve been cooking pretty much every meal and I’m enjoying it.  I haven’t been experimenting as much as I’d like to, but I’m maintaining a routine and usually have plans for at least two days ahead.  I’ve always liked cooking.  I don’t know if I’ll ever be as good as a professional chef, but practice makes perfect.  Mostly, I just like being sure that everyone is fed.

Having Ryan home is reminding me of why I love him.  He’s working hard from home and I think would forget to eat, so I bring him his breakfast and lunch.  When his day is over, we relax and watch TV.  This last week, we’ve been watching filmed versions of Broadway musicals with Kate.  Before I met Ryan, I had no knowledge of musicals, but he grew up loving show tunes and he introduced me to all the big ones:  Les Mis, Phantom of the Opera, Evita.

Since high school when I started to enjoy writing, I’ve had ideas in my head, never fully formed enough to write a novel, but seeds of stories, and about a year ago I figured out a way to bring them together.  It’s coming along slowly, but more reliably now that I’m home every day.  I find that my protagonist has a mind of her own, though, and I’m having to wrangle her a bit.  Sometimes I’m more inspired by random things that end up as short stories.

The world outside our home is a scary place currently, so I’m grateful that we have each other inside.

Unfortunately, the news isn’t so good.

Three months ago, a notable jump in tumor markers in my blood prompted a change in strategy, including a switch to a harsher chemotherapy drug called capecitebine, in the hopes of turning the tide.

Yesterday, I was called in at the last minute for another CAT scan and bone scan, when my latest bloodwork saw those numbers double in the last month. In addition to those markers, the cancer in my bones is now spreading and the troublesome spots in my liver are growing. Add in a few more aches and pains lately and the overall trend is troubling.

We still have a few options to try, which is good, but I will also need a liver biopsy to be sure that we’re not dealing with a different problem than the one that first emerged in 2012.

Starting next week, I will be receiving another type of treatment, this one in the chemo room again.  I was hoping I’d never have to go back in there.  I still have memories of getting the “red devil” (adriamycin) and feel queasy at the sight of ice chips.  I met interesting people in the chemo room, though, and have thought about writing about them. Now we’ll be spending time together again.

I lost my job at the beginning of March, when this whole COVID-19 thing started to happen.  I won’t have a hard time getting back and forth to treatment but things are difficult without my income.  I’ll need to get another job, but I have to see how well I tolerate treatment.

It’s hard to feel optimistic on any kind of level these days.  Even my daughter’s college graduation is bittersweet.  She’s so happy to be done but sad that we can’t celebrate, at least not right now. At least our middle kid isn’t at all broken up about his postponed high school graduation.

I’m starting to think about what will happen to my family when I’m gone.  I tried so hard not to think about that before.  I thought that if I thought about it, I’d just make myself sicker.  I’m actually imagining my memorial service.

I’m frustrated now that so much time was wasted between November and January.  That’s when things started to accelerate.  As much as I loved our vacation, I wonder if I accidentally hurt myself.  I just have to make up for it now.

 

I was hoping to meet a guy in Hawaii. I wasn’t counting on it, though.

I moved to Hawaii from a small town in Florida in 1993. I knew that I didn’t want to spend my life there. There was so much out there that I needed to see; besides, I needed to be away, so I could date whomever I wanted without judgment from my family.

My husband Ryan walked into the cafeteria (and my life) the day before classes started at the University of Hawaii at Hilo in January 1994. He was wearing slacks and a dress shirt and slacks. He looked older, like a grad student. I was sitting with my group of friends, all women, when a male friend of the group came to our table with him. He looked so interesting. He spoke confidently about computers and was showing us something he’d done on his computer.

He was fascinating. He was so different from everyone else I’d met in Hawaii. I caught myself staring at him and I didn’t know why. I looked at him and I swore I was looking at my future. The only problem was that he had to have had a girlfriend and I didn’t know who she was, because he hung out with a lot of girls. One day he mentioned that he lived in the room that had “a bunch of green stickers on the door”. I found myself going back to my dorm the long way around to see if I could find his room. Meanwhile, we chatted whenever he’s join us at dinner.

This was around the time that “Schindler’s List” came out. I had seen it with my friend Sherry and she talked about it at dinner when Ryan was around. He said, “Oh, I haven’t seen that yet. I’d like to”.

That was my chance! I knew I had to act fast because I didn’t think the film would be playing for much longer. I kept an eye out for Ryan, waiting for my chance to get to talk to him. The gods were on my side, because I caught him the very next day at lunch. I approached him, where he was sitting with a girl.

“Sorry to bother you. I was wondering if I could come by later.”

He said sure and told me where his room was. I was so nervous, like I was about to skydive. To me, he felt inevitable. I was sure he liked me, too. This was my future.

I asked him to see the movie with me. He said yes, and we made plans. He asked if I’d like to get dinner before the show, because he knew this nice Mexican place. I said that sounded great.

We went out, and it felt like he was an old friend who I was catching up with. The conversation went on all evening and I felt so comfortable with him.

He started coming over, just to hang out. We watched The Simpsons, talked about music, went for walks. But we were just friends. Just friends. Everybody knew we were just friends. The thing was, though, was when he wasn’t around I missed him. It was nice just to talk to him, because he was so smart and interesting.

He told me about his ex-girlfriend who also lived on campus. He didn’t like to talk about her but I knew it was possible that maybe he wasn’t over it yet. I started to feel jealous of her. In fact, I got so jealous of her I nearly went crazy.

Spring break came and I had plans to go to Maui with one of my girlfriends and a guy who had a crush on her. I hadn’t been to Maui before and was excited. Unfortunately, I was also sick. I had come down with a bad cold. On the day before we left, I was still pretty sick, so Ryan came over with a cup of soup. That did it. I had fallen,

We drove around the island on the first day and came to a place where O’ahu was visible on the horizon. Ryan had gone back to Honolulu to visit his family. I looked out to O’ahu and wondered what he was doing. As we drove around, listening to the car radio, I realized that I missed him. I decided to see him on Sunday night as soon as we came back. I went over to his room and we talked til after midnight. I was exhausted the next day, but it was worth it.

By now our friends knew we were together, but somehow we didn’t. We hung out together all the time and he started telling me about his friends back home and they me. One night, the group planned to drive up to Volcano and one by one everybody cancelled but our friend Sherry, Ryan and me. We decided instead to just have dinner at Ken’s. About halfway into the conversation, Sherry asked us, “Are you guys together?”.

He and I looked at each other. I was afraid he would say no. He was afraid of the same thing.

I finally said, “I would say so, yeah”.

We quietly agreed to talk about the conversation with Sherry. We went back to my room together a little after midnight. We ratified our relationship.

The next day, we spent the day at Hapuna beach on the Kona coast. We played in the sun until after sundown.

So I finally did see the doctor.  As usual, my procrastination and fear of bad news bit me in the ass, and I’m back here to say that more changes are ahead.

The fulvestrant hasn’t been working for the last few months.  Initially, it was working very well, and then in September the bloodwork figures started creeping back up.  The situation was not helped by my oncologist leaving last fall, nor by our vacation.  The result was a one-month break from treatment and a lot of lost ground and some considerable fat off my body.

My appetite has been bad.  My anniversary ring is threatening to slide off my finger and I no longer have pants that fit.  Most women would be thrilled at this development, but all I can do is gaze at food and wish that I wanted to eat it.  I have a coconut cream pie in the fridge right now and I’m hoping to eat it later, if I don’t fall asleep too early.

I’m not doing well emotionally, and I don’t like sharing that.  I feel like I’m supposed to be a beacon of hope and good vibes to people who read this blog, but right now, I’m a little lost.  Especially because I felt good and thought things were okay.  I chalked my weight loss up to my activity at work without really noticing that I barely ate most days.

When I finally reached my doctor on the phone, he sounded shaken to the core.  I can’t figure out if it’s because he’s young (he’s my age) or if the situation is really that bad.  I remember the day I was diagnosed and the sound of my then-doctor’s voice.  It was the same.

I’ll be getting a new chemo drug in pill form. My doctor says that the side effects are minimal and that it’s been effective.  Sounds simple.  Too good to be true?

February and March have been crappy months for me the last few years.  The anniversary of Mom’s passing is coming up.

Grief never really ends.

After getting the news that my prognosis had changed, Ryan told me that he would do his best to allow us to check as many items off my bucket list as we could.  We went to New York City two years ago, and this year we elected to do a kind of American Revolution tour.  We’d visit Boston, Philadelphia and Washington D.C., stopping in New York again briefly to catch Hamilton.

We had a great time, but the best discovery was that I just love traveling with Ryan.  He has a knack for plotting visits and making plans.  When I’m feeling worn down, he doesn’t mind taking it easy.  He gets just as excited about things as I do.

We flew into Boston but did a quick turn around to Washington.  We spent a whole day at the Smithsonian museums and didn’t even scratch the surface.  We ran into a demonstration across from the White House.  Washington, at first glance, is hip and younger than I anticipated.  I also didn’t expect as much city, weirdly. We stayed at this hotel called the Pod, which boasts small rooms and fewer bells and whistles.  It turned out to be just what we needed.

After that, we were off to Philadelphia.  We took Amtrak, which I had never done before, believe it or not.  It had been a long time since I’d seen that part of the country and seeing it in the autumn, with all the bare trees and signs of winter coming on, was lovely.  In Philadelphia, we did the Liberty Bell (which was quite small, actually) and the tour of the historical buildings.  Ryan had managed to snag not only tickets to Hamilton in New York, but also to the last show in Philly.  We caught the show and headed straight to the train for New York.

I really fell in love with New York.  Alas, we were there just long enough to see the show and then got on the train to Boston.

Boston was my favorite. Our stay was cut a little short because of the detour to New York, but that’s okay.  We were in town long enough to do the Freedom Trail and a great dinner on the North End.  Boston is incredibly beautiful.  I remember very little of Massachusetts from my childhood.

I’m hoping that for our 25th anniversary, we can go to England. It’s been my #1 bucket list item since I was a child.

 

 

Life is continuing.

I’m glad you’re still reading.  I like writing and sharing but sometimes it’s hard to open up about my illness.  I’ve said that before but now that my cancer is metastatic, I feel sometimes like I’m being pursued by something horrible with claws and talking about it wakes it up.  I feel like if I ignore things, it’ll go away, which I know is very unhealthy.

Today all the stuff I usually sweep under the rug came crawling out, rushing toward me in a big way, and I started crying at breakfast, convinced I was having an emotional breakdown.  A song playing on the restaurant’s PA reminded me of the day I had the biopsy, and I was also reminded that it’s coming up on the second anniversary of losing my mom, and I just started blubbering.

So I’m here, hoping to gain some clarity.

I miss my mom like crazy.  She was my confidante and my conscience, letting me know when I was being ridiculous.  She loved me exactly for who I was, never judging.  Nobody will ever love me like she did.  It hurts so much when I realize that I can’t call or text her.

I so need to see my doctor.  Isn’t it crazy how someone could be afraid to see someone who is trying to help her?  I’m not even having a particularly hard time with the treatments.  I’m getting a new treatment, basically a shot in each hip once a month.  There are some signs of progression in my bones, but not much.  The bloodwork has been improving overall.  I just had a rough patch last summer when I was experiencing pain.  I’m also on Ibrance.

Sometimes, the kids will all end up in the room while I’m relaxing or reading or whatever and we’ll all sit around and talk about nothing in particular and laugh.  Those are the times I live for.  I feel thankful that I still have them.  They are doing so well.  Kate is graduating from college and Zac from high school.  I know they all love me.

I’m still working.

I like work.  It keeps me going.  I’ve met great people.  My best days at work are when I’ve truly helped someone.  I had a customer the other day ask for a hug after I’d helped her.  She was a young woman, trying to patch a hole in a wall, and I had a suspicion about how it got there, but I didn’t ask, and her relief told me a lot of things.

Every single person I know at work makes things better.  I am friends with all of my coworkers.

Except for one.

When I know that I’ll be working with this particular person, I literally feel sick to my stomach.  This person makes me feel like at best, like a naughty third grader, and at worst, like gum on the bottom of a shoe.  I realize that there are horrible people at every workplace, but this person has the power to not only get under my skin, but also ruin everything for me.

I’m good at my job. I kick ass. I work with good people at a good company. I know I shouldn’t let one person ruin a good thing but the dread I feel on the days this person works is so visceral.

I’ve gone to HR about this person. Many others have cited this person in their exit interviews. I know this person drives turnover in an already tight job market.

I guess this is the downside for a company that’s loyal to all of its employees.

 

 

 

So much has happened. It’s lame to start an entry that way, but so much has happened in the last 20 months that I don’t even know where to start.

My dad died. Then my mom died. In fact, my mom died because my dad died. She ostensibly died of cancer, but she really died of a broken heart. I was able to visit her in November, and then near the end of her life in January, and it’s something that I will never get over. I dream of them almost every night, and in my dreams there might be a way to save them if I try but I can’t quite do it. I know that in reality I could never save them; that she needed him and she was just waiting to be with him again.

I spent the last weekend of her life with her, just sitting with her, feeding her, bathing her, and it was the most profound few days I’ve ever experienced. I’ll never forget them.

My in-laws, who have always loved and cared for me, helped me to say goodbye.  They organized a memorial service for her.  They invited all of the aunts and uncles and cousins, made all the food, and prepared remarks.  I felt very blessed.

I left my job. I’m much happier now. Though I miss my friends there, I’m being a housewife again, and things are so much better. I’m focused on the kids, and they are getting good grades, and I put a hot home-cooked meal on the table every night. I’m cooking and I’m liking it. I have a huge collection of cookbooks that I largely ignored while I was working but have turned to once more to find inspiration. I have a fantasy of cooking my way through Alton Brown’s books and blogging about it.  In the meantime, though, I’m tweaking old recipes and trying new ones.

Part of the reason for this change in employment status was that I was in constant pain, and in the course of my treatment, I’d become a little bit too fond of my pain medication. The pills were helping me get through the day while I was working, which was not an ideal state of affairs. I would take them just to feel normal.  I was making money, but I was constantly exhausted.

Here at home, I am attempting to kick the habit. I’m hovering just over half the daily dose I started with. Ryan has had to play bad cop, which can’t be fun, but he helped get things under control (spreadsheet and all). Most recently, though, I am making progress through herb-based pharmaceuticals, if you catch my drift.

Medical marijuana is legal here in Hawaii, and with a medical record two inches thick, I was able to get a card. From there, all one needs to do to obtain it is to find a dispensary. I looked at reviews and heard from friends, and picked one. I’ve tried different products and varying delivery methods, limited as they are in Hawaii. I’m figuring out what works and what doesn’t, but cannabis is more complicated than I anticipated… and of course much more expensive than those tiny white pills.

Because I have led a square, boring-ass existence up until this point, I have very little experience with drugs. I started with homemade brownies from a friend, which were a delicious introduction. Then I got some gummies from another friend, and they were very high in THC, but because I’m a dummy, I didn’t realize how potent they’d be. Using them has been an exercise in learning about my tolerance.  I’m not looking to get loaded.

Between the constant ache in my joints and the anxiety I have, I need something, but obviously, opioids aren’t the answer.  It’s hard for me to get used to the idea of using pot though, because I grew up in the age of ‘Just Say No.’  I’ve never liked feeling drunk or high or out of control to start with.  Through experimenting, I have learned that I don’t need to feel high. There’s a balance that I’m finding that keeps the pain down and my mood relaxed and mellow, and I’m usually able to skip the last pill of the day.

Another lifestyle change is my gym membership. One condition of my staying home was that I exercise three times a week. Through a program at Kaiser, the membership is basically free after forty-five visits. I just got the notice today that I hit the target and that they’re sending us a check. I got there a lot sooner in the year than I expected.

I don’t know if I’ve lost any weight, but I feel accomplished, which counts for a lot.  Sometimes I even feel a little sore after workouts and I’ve come to like that feeling.