Cancer – this one is not that.

June 2024

The last few days I’ve been fortunate to spend some hours weeding in the garden. And it surely needs it. The last few months, I’ve been in a battle to save my life. 

I’m learning that this cancer is not like my previous diagnosis of squamous cell in my lymph nodes that came to me four years ago. Back then, I knew I had cancer, but I wasn’t feeling physically ill with cancer. 

I’d gone in for a regularly scheduled mammogram early in 2021. Having recently received a covid vaccination, the diagnosticians were suspicious that the lymph node swelling seen in the mammogram was related to the vaccine. Perhaps my immune system was ramping up related to the vaccine. So we waited and scheduled another mammogram and ultrasound which verified the squamous cell cancer had indeed traveled from my back where I’d had a lesion excised several months earlier. Within the year, I’d completed monoclonal antibody therapy, and the lymph node swelling had decreased by half. Success to a point. I never felt ill, and life was good.

This one, this cancer, is not that. 

I’ve written much over the years—tales of travel, people, and adventure, being out there in the world. Joyful, happy tales. When I came home from Europe a year ago, I felt that something in me wasn’t quite right, and it turns out I was correct. It took months of tests and labs and scans to get answers. I shut myself off from the world. I didn’t feel enough energy or stamina or well-being to get out to see friends. I was depressed. I missed family outings. I was physically ill. I wasn’t gardening and only did a bit of reading, which eventually evolved into audiobooks. I wasn’t doing much at all.

I’d occasionally get my head above water and want to write something—I knew it was important to do so. It occurred to me recently that I wanted to write the details of my own path, really, in hopes that others who are traveling difficult physical journeys will feel seen as they navigate their own paths. Because that’s where I felt I was. Unseen.

In January 2024, I began six-weeks of radiation therapy to further shrink the squamous cells in my lymph nodes. No one could ever feel those little suckers; they just appeared in the CT scans. My terrible physical symptoms, of G.I. upset, pain, and discomfort throughout my gut, seemed unrelated and were not really addressed, mostly because I just thought it was a G.I. thing. But my pain and discomfort was increasing. Fatigue (expected with radiation) increased. 

When the fatigue is at its worst, I’m unable to keep my eyes open much of the time. I can listen to the radio or TV, but don’t have the bandwidth to actually focus with eyes open. I listen to keep my mind stimulated, and rest in quiet solitude to regroup. These days, the fatigue comes and goes, depending on my health from one week to the next.

Then one day I knew something was seriously wrong.

That early morning, I noticed a bit of bleeding from my vagina when I went to the bathroom. Okay, Kathy, now your body is giving you blood to think about, so do something about it. I was still well enough to drive, and after my 7 a.m. radiation treatment on that January 31, I drove myself 30 minutes to the Vallejo Kaiser E.R. and waited to be seen. I was triaged right away and sat down to wait. 

The next person to come in was hacking and coughing and sounded terrible, and I stayed far away from her. When I was shown to my curtained “room” 30 minutes later, she was being taken to the covid unit. 

The E.R. doctors and nurses were great. They listened, asked good questions, listened again, and ran a slew of tests, scans, and ultrasounds. I was told by the head E.R. doc that they would find out what was wrong with me by the end of the day or they’d keep me overnight until they did. I felt reassured and cared for.

I did go home at the end of the day, with a consultation in hand to a highly recommended surgical oncologist at Kaiser Sacramento. I could see the concern in the face of the E.R. gynecologist when he gave me the referral, and I think that was my first fearful sign that I was looking at something serious.

 A week later, I drove to Sacramento, met my forever good friend Lynda for lunch, and we went to my consultation. Dr. Saez went over what she knew from the scans and labs and basically said there could be at least three different things happening in my abdominal and pelvic areas. One could be a continuation of the squamous cell cancer. It wasn’t. Two, something non-cancerous. Nope. Or something more serious. We wouldn’t know until after surgery, which was scheduled a few weeks later.

An hour’s drive wasn’t anything for me then, but I knew I couldn’t do it for surgery. Lynda jumped in to come get me in Napa and take me to her house, where I stayed the night before surgery and for a week after. 

Dr. Saez performed a partial hysterectomy, clearing out as much mass and cancerous growth as she could in a four-hour surgery, and I was released the next afternoon to Lynda. It was a difficult recovery, with lots of pain subsequent to the surgery, nausea from the pain meds I needed, lack of appetite, overwhelming fatigue, and lack of focus. It wasn’t pleasant and Lynda did her best to comfort me, listen to my concerns, cheer me up, checking that I took my meds, baking me a custard, and even bringing home JimBoy’s tacos one day when I was feeling good and hungry. She made sure I drank plenty of water and watched over me, until a week later, when my son-in-law brought me home to continue my recovery. 

It took a few days for the final pathology report to reveal that this cancer was, and is, Stage 3 Ovarian Cancer. Not just another simple squamous cell cancer. There is work to be done, that’s for sure.

Right away, another best friend who lives in Virginia flew out to stay with me. Having Cristy here was heaven sent. She prepared our small meals, helped to keep me hydrated, and remind me of meds. I slept much of the time, but when I was awake, we’d watch Queer Eye on the telly—definitely a reliable way to lift the spirits. She did a lot of listening and helping me to sort out a lot of feelings and questions I was having at the time during the process of deciding whether or not to have chemotherapy. I was lucky enough too have her here when I had the sit-down chat with my oncologist about the options.

Weighing the pros and cons, I finally agreed to it because I was just so sick all the time, and I didn’t want to live like that—even if was only for another six months, my potential life expectancy with no further treatment. I knew I had to get past the days of being curled up in bed sobbing and praying for a heart attack to end it all. 

As time went by, with the cancer masses removed in surgery, I’d begun to feel better and more hopeful. The promise of relief with chemotherapy, the hope of some sort of recovery, and another handful of years to live happily and in good health is where I am now. The chemo is already shrinking the cancer—my labs show that. And I’m feeling better. Another surgery may be in the offing. We’ll see if and when that question comes up.

My first infusion was April 22, and again, another of my wonderful, forever friends traveled to be with me for a week’s worth of care and recovery. Again, having Kelley to vent with and talk to was a life-saver. It was indeed a week of lying low and getting accustomed to the new medication and side effects of this new treatment.

For me, the schedule of chemotherapy infusions seems to work like this: On infusion day, I get a ride to Vallejo Kaiser. I spend a few hours in the infusion clinic with I.V. medications dripping into me, attended to by caring and professional nurses, who bring snacks when I ask, answer my questions, and address my concerns. Then I get a ride home to start 10 to 12 days of regrouping. 

Nausea, fatigue, and overwhelming physical and emotional turmoil keep me out of commission. Then I start to see my way out. I remind myself that this is my body healing, helping the chemo do it’s work and then getting on with life.

Since my protocol of six infusions are three weeks apart and six are scheduled, I basically have infusion day followed by several days of upset, and then I get a good week or so of somewhat energetic health. It’s all up and down, and I’m learning to adjust. That’s a big lesson, let me tell you. There is so much to learn in this process. I’m coming up on my third infusion, so I’m halfway there. My most recent labs show the scary cancer marker plummeting, and I’m ready to see more of that. 

Next month, I’ll have scans to see what real progress we’re making.

Throughout my recent adventures, I haven’t lost sight of the fact that I’m extremely lucky to have the quality of insurance and healthcare that I experience on a daily basis. Very grateful. I cherish my neighborhood healers and others who have sage-smudged my home and brought me healthy & tasty meals, and other dear friends who send me healing and prayers on a regular basis.

I’ve also gone outside the box adding other therapies, something I’ve done for years when addressing my healthcare. Chiropractic and massage therapy, and I continue my long term use of CBD, but THC is too much for me now. It makes me dizzy. I have enough other side effects to deal with, I don’t need that one. I’ve started I.V. ozone (a form of oxygen) therapy, not FDA or AMA approved. It’s a bit out of pocket, but it’s important to me right now and I think it’s critical to keep my options open for my own health. My oncologist knows I’m doing this and has no objection.

Who doesn’t know that cancer will run from oxygen?  I’m just getting more of it with the help of Dr. Kim. The theory of adding more oxygen to my body is that the chemotherapy will be more effective, the negative side effects lessened, and I’ll feel better. My first two sessions were both positive—I had more energy for a good few days than I’d had in months.

In the meantime, my lovely hair has decided to take a vacation. With most of the wonderful locks gone, I ended up with fluffy bits all over my scalp and three or four long strands hanging from the top of my head to my neck. I figure that’s where Gollum’s look in The Lord of the Rings came from and said so to my daughter when I revealed my almost bald head to her. She told me that I’ll always be her Precious. 🙂

I also noted that even those strands showed me what a good cut I’d had, and the next day I trimmed them up. I’m learning to wear beautiful head coverings, brush my scalp and smooth my barely-there hair with a baby brush, and massage my head with my own handmade lavender oil. 

I’ve also made a potion of tea tree oil, aloe gel, and lavender oil that I brush on my toenails and fingernails, as suggested by one of my infusion nurses. I hope to help keep them strong. The chemo drugs attack the always evolving cancer cells, as well as any constantly evolving cells such as those in hair and nails. I’ve purchased specially made ice packs (another RN recommendation) to wear on my hands and feet during infusions to help shield my fingers and toes from picking up the chemo. Not a guarantee, but I’ll do what I can to improve my prospects.

Family and friends here locally who know I’m fighting this battle ask me to please tell them what I need, what can they do for me? When I’m feeling sick and despondent, I can’t go there, and when I’m okay, like today, I can take care of myself. Some of us are just not good at asking for help. Ever. We assume that those close to us will know what to do, and do it. Not so, not always. I am trying. I’ve shared my story the last few months with just a few close friends and family who don’t live nearby, and greatly appreciate their texts and check-ins.

My biggest problem is that during my down times, I lose my appetite. I must eat, yet have no energy or inclination to prepare anything. Knowing I need good nutrition keeps me somewhat focused on fruit, veggies, and fiber and away from those not-good-for-me snacks. With help, I’ve stocked the cupboard with nutritional soups, small packs of frozen meals in the freezer and puddings in the fridge. 

I really am feeling so much healthier, even during my recovery days. And I am healthier. I’ve shed the extra pounds I’d been carrying around for the past several years and am now at a healthy BMI of 23.6. 

If you have local friends who may need a spot of help, please, just stop by, take them one or two small prepackaged nutritional food gifts. Don’t be offended if you’re not asked in, because the patient is more than likely not up to a visit, and hasn’t done her dishes, either. If you spot a messy kitchen, maybe ask if you can please just come in and clean up the dishes. Or sweep the floor or take out the trash or do a load of laundry. Those are miracle gifts that you’ll be thanked for. They are the tasks I do best on my good days.

I’m gratefully able to welcome family to visit on the days I feel well. When I remember to ask, they will pick up things for me from the store or the pharmacy, and they gift me with tasty meals. As busy as she is, Mollie helps to schedule and often takes me to my many appointments.

Lastly, I need to tell you a story about Sue, my pre-op/post-op nurse at Kaiser Vallejo. The cancer that filled my pelvic and abdominal areas for so long pushed my kidneys around to the point that they both need attention. My left kidney has had to be stented to my ureter more than once. That’s Barbie. She does most of the work now. My right kidney couldn’t he helped internally, so for the time being, slacker Ken is draining into a small outer drain that I must pay attention to. I’m leaving out details here, so forgive me. Sometimes it’s just too much.

I can’t go for a swim or take a bath, but a shower is okay. I have to wear long and loose clothing to keep Ken in check, and then his dressing has to be changed regularly—thankfully nurse Mollie does that for me. The kidney thing is my biggest daily hassle. It’s draining in more ways than one, and I’m hoping that it will soon be resolved and Ken will be functional as he should be. Anyway, I tell you this long sordid tale because my kidneys brought me to Sue.

I was in Vallejo for a kidney issue where I met nurse Sue. We both had some time to chat. I was feeling good. She asked me what I’d done for work before retiring. I told her I was also an RN, working mostly in public health and finishing my career as a psych nurse at Napa State Hospital.  She told me her husband had recently retired from Napa State. I didn’t know him, but we connected right off. 

I told her a favorite story of my time at Napa State, when I was just about the only white woman on the unit, surrounded and supported by awesome Filipinos who taught me to fix chicken adobo and all kinds of good stuff. Sue—Filipino herself—chimed in, “Lots of potlucks, huh?” Yep. We laughed. I told her I was always standing up to some of the patients and our bosses when they called us on some crack or another, and we laughed when I told Sue that I was nicknamed Mama Bear by my colleagues, because I never seemed to back down from anything.

A week later, I received a get-well card from Sue, and along with others I’ve received, it so touched my heart that I shed those grateful tears again. 

A few weeks later, I was back in pre-op for a new stent change. It was early. I’d arrived at 7:30 a.m., I was exhausted, and I was not in a good way at all. I was taken to one of the little curtained rooms, where the medical assistant advised me to get undressed, put on the gown—closed in the back—and wait for the nurse. Twenty minutes of waiting just about did me in that morning. I was so depressed, flat on my back, near to tears, and feeling invisible. 

Just about then, I heard the curtain gliding back along the rail, and the sweetest sound in the world. 

“Good morning, Mama Bear…” 

Sue’s hand reached out to mine, she put her arms around me, and all was right with the world.