Category Archives: Updates

Kettle Black

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.

lorraine

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.

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Thank you, Sally Field

To combat the holes in my bones from the cancer, I have a new drug regimen.  I’m on Reclast, which I will receive quarterly.  I had my first treatment last week.

It was painful.  Not the infusion itself, but the aftereffects.  I experienced growing pains all over again, writ way large.  Luckily, I had the following day off from work as well.

The process of the infusion itself was interesting.  I was expecting to receive it in the chemo room, but when I got to the hospital, they directed me to a much cushier suite of private rooms on the second floor.  I had a very comfy chair and a TV, as well as a nurse named Ro who was very friendly and professional.

anniversary-at-hys

This month we celebrated our 19th anniversary.

I couldn’t help but remember chemo and the time period around it.  Even smells remind me of the months of chemo treatment.  At the time, we had cherry blossom-scented soap in our bathroom, and whenever Ryan would give me Neulasta shots he’d wash his hands with the soap.  If I smell the scent of cherry blossoms on someone now, I can feel my stubbly scalp in my hands and feel the needle in my belly.

I am also on a new estrogen blocking drug, called anastrozole.  I’ve had a couple of queasy days on it.  My doctor also prescribed an anti-nausea medication.  The nausea wouldn’t be a big issue if I didn’t have to work.  I dread being sick at work.

My biggest fear going into this second round was that it would render me incapable of pulling my weight at my job.  So far, everyone has been supportive.

Reminders

adriamycin-matisSometimes I think about the things that brought me here.

I’ve been introduced recently to someone who is newly diagnosed. She is starting chemotherapy soon. She is getting a drug called adriamycin, as I did. Adriamycin is known in some circles as “red devil.” At the time I was told about my drug regimen, I was unaware of adriamycin’s reputation.

It is so potent and so dangerous that it can only be administered by a nurse wearing a full nasty-stuff getup: mask, apron, gloves. When a patient gets it, he or she must chew on ice chips, lest they break out with nasty mouth sores.

At that time, I was not in a good place, emotionally. I think I might have had post-traumatic stress. So when I heard my new friend’s news, I was briefly brought back to that time. I started to feel anxious, stressed-out. I was wondering if I was headed back down that spiral. I was legitimately afraid.

oncology-cropI snapped out of it, and now, I have to say, I feel pretty grateful. I saw my oncologist again yesterday and the news continues to be good.

I am no longer on Tamoxifen, the side effects of which were a problem the first time around. Instead, I’ve been switched to Anastrazole, which I only have to take once a day.

It’s more powerful and only for patients who are post-menopausal… which, having had my ovaries removed, includes me. I managed to avoid symptoms on Tamoxifen, but I’m starting to get hot flashes after only a day on the new drug.

Because there has probably been damage to my bones, my doctor also wants to start me on an IV osteoporosis drug. I’ll have to go in quarterly for a two-hour-or-so infusion.

I am just so lucky that I’m not facing more chemo. I think of my new friend and hope she makes it through okay.

The things in between

katie-and-meI suppose I should talk about what went on in between my diagnoses.

I won’t lie; things got really dark around the time I started chemo. Luckily, some kind of switch went off when radiation ended and I made peace with my life in a way I never thought I would. For four years, I was carefree, enjoying my new lease on life.

I had reconstructive surgery in 2013.  That was a messy affair.  In retrospect, I probably had the surgery too early.  The radiation thinned my skin considerably and made the area difficult to heal fully.  I had to see my surgeon for repairs two or three times, but eventually, it was done.  I don’t regret having the surgery, not at all, but it never hurts to wait a bit. That’s one lesson I learned.

At the end of 2013, I got my first job since having a family.  I’m fortunate to be with a company that is involved in several charities, including the American Cancer Society.  I even participated in the Relay for Life when my company organized a team.  This job made me fit–walking around and carrying boxes is great exercise.  I was loving that, but I noticed that every day, it was harder and harder to recover from the day at work.  The constant joint soreness is what lead me to the see the doctor and my second diagnosis.

I feel now that I am better equipped to handle this fight than I was before.  In the last few years, I think I’ve learned to not sweat the small stuff.  And I’m hoping I’ve passed some of my wisdom onto my children.  Recently, I’ve been watching friends renew their own personal battles with cancer.  I know that despite all of the complications, I’m lucky.

As I make this journey, I’m determined to stay close to Katie.  Being a woman in this word is hard enough without having his disease looming over the horizon, as it will since there’s a hereditary consideration.  I’ve worked hard these last few years to teach her how to be herself, with no apologies.  I hope if my children, all of them, learn nothing else from this experience, it’s compassion.

Oophorectomy

img_2822There’s nothing quite like waking up after a procedure and seeing a crowd of people in scrubs around you. It’s frightening and surreal. When I woke up after the procedures, I wondered if I had made it through. I had two procedures that day, but first things first.

Shortly after my CT scan, a nurse called to tell me that alongside a looming oophorectomy, I had three good-sized kidney stones. I made an appointment with a urologist, a Dr. Thibault, and at that consult it was decided that he would zap the kidney stones with a laser on the same day of the oophorectomy. I was in a rush to get it done and was secretly hoping they’d be ready to go right there and then.

I took the week of the operation off from work so that I could go to all of my pre-op appointments. Although my bone pain is mostly gone, fatigue sets in much faster than it used to and I felt I needed the extra time off. It might not have been the right call because it’s taking me a little longer to recover than I’d anticipated. I’m on fairly serious pain medication and that helps, but I feel a little guilty for taking it.

Katie wanted to be home for the weekend and we couldn’t say no. I know it gave her a lot of peace of mind to be here. When I picked her up, we had lunch and did a little shopping and it was like she never left.

I’ve determined that there’s a certain rhythm at play during any kind of operation involving anesthesia. Kind of a hurry-up-and wait feeling, like I’m backstage watching actors getting ready for a play. Once in a while, a nurse pops in and takes vitals, and then there’s more waiting, and then suddenly all the doctors and a thousand nurses are all around and everybody needs to go RIGHT NOW. I’ve gotten used to this rhythm.

The weekend went by too fast. I was enjoying my first free weekend in a while with my family, even though I was still recovering.

Subtlety

kaiserTomorrow I have my second appointment with my oncologist, post-diagnosis. In the meantime, I’ve had a battery of tests, including a bone biopsy (to confirm that this is the same cancer as before) and a brain scan, which is both troubling and fascinating.

Apparently, the full-body bone scan revealed an abnormality on my skull. I’m not a doctor and don’t know if whatever is going on in my skull can make its way into my brain, but I guess that’s one thing we’ll find out tomorrow.

My oncologist has a few things to learn about subtlety.

I like my oncologist; he is honest and forthright and I appreciate that in a doctor. But on our last visit, he prefaced his remarks by saying, “I have been dreading this appointment.” He went on to tell us (mostly) good news, but what can one expect to hear when one’s doctor is dreading a meeting? He then showed us the pictures from the full-body bone scan and again, oddly, stated, “I was hoping I could avoid showing you these.”

The pictures, I admit, were alarming. To my untrained eye, they looked like those of a severely ill old person. Several vertibrae were dark, as was my hip bone, and a chunk of my head, places where there was a lot of bone death and growth, indicating a fierce battle with cancer cells. They went a long way toward explaining why I’d been feeling so lousy. He expressed surprise that I hadn’t been in more pain than I was.

My drug regimen now includes Tamoxifen (again), and I have to say, it’s reduced the pain quite a bit. I hardly need the gigantic bottle of painkiller my oncologist prescribed for me. Some days, I wake up and it takes me a bit to remember that I have this problem. Most of the time, I can just go about my day and not think about it too much.

Days like today, though, when an appointment is imminent, I fall into an emotion that I can’t describe and can’t pull myself out of. Oncology visits bring knowledge and a plan, but they’re also milestones that change everything.

College

ed-enoMy daughter just started college. She is attending school at a campus about forty-five minutes away from us by plane. Facing this new cancer challenge while she’s away reminded me of something that happened in my life before.

Just after I earned my Associate’s degree, I decided to move here to get a degree in Marine Science. I got into UH-Hilo, the school our daughter is attending now, and was packing my things and making plans when one day my dad came home, walked through the front door, and said, “The xray showed a spot on my lung.”

Coming to Hawaii was suddenly out of the question. There was no way that I could leave. I told my parents that I would take a year off from school and try to find a four-year school closer to home.

They were having none of that.

Dad did not have lung cancer; in fact, he was perfectly healthy and lived another twenty-three years. I moved here, meanwhile, grateful to still have my dad in my life, and never took for granted that one day, he wouldn’t be around anymore.

So it seems like some kind of practical joke that the Big C reared its ugly head just as Katie was about to leave. Life is full of moments like that.


Tomorrow I get my routine yearly mammogram. My oophorectomy has also been scheduled. When I was on the phone with the nurse yesterday, they told me that I’d need a phone appointment with the anesthesiologist first.

That frightened me a little. The OB made the procedure seem so simple, like they could do it with a minimal amount of medication, but I guess it’s all the way under after all.