December 21, 2021 – Time flying

With the pandemic happening I find myself losing track of time so much. Then I feel like I need to rush to get as much done as I can in the life I have left. I keep having this feeling that I need to make sure my family is prepared for me to not be here anymore. With this feeling I also notice every little change in my body. Color changes in my breasts and arm pits. How my lungs feel; how my cough is and whether it is changing. I’ve noticed grey spots in my phlegm when I have any to cough up in the mornings. I notice every new little pain and tight spot.

I also notice all the little things in my life, how my husband does things around the house that helps me. How my kids continue to grow in their adulthood. My grandson and how he changes every time I see him. Which birds like to hang out in our trees; how the changing of the seasons changes my views when I leave the house; go to work, or run errands. What wildlife I see on a daily basis. How frequently the owls visit our neighborhood at night.

I notice the changes to the flowers and the trees in my neighborhood. I notice the changes in my neighbors as they walk their dogs. I notice the hummingbirds and how some have changed their territories.

I notice my dreams are changing too. I dream more of old friends I have not seen in ages; of having gatherings with them to celebrate life. I dream of family past and present. I dream of things we did and things I would like to do.

I wake up thankful for every new day; with that nagging urgency to get everything done.

I don’t know why that urgency is there. All my tests are still showing everything is clear. I have concerns I have voiced to my Oncologist, but he doesn’t seem to think they are real concerns and treats me as if I have nothing to worry about.

I have lost people in my support group because they were told not to worry about subtle changes. I have lost people because doctors didn’t follow up. I will continue to lose people because their cancers have advanced beyond curing. They will live until the advances in medicine can no longer control their cancers. I am thankful for everyday they have to live and grow until that point.

Despite my underlying nagging worry, I live each day. I enjoy all the things that I come across in my life that bring beauty and I strive to be productive. I love having my husband make me laugh; and my friends in my life that remind me life is beautiful.

I am looking forward to crossing another item off my bucket list. My mom has invited me to join her on a cruise to the Bahamas. Despite that there is a new variant to the Covid-19 virus out there I am going. My dragon whispers to me daily – live life now. Do all the things you want to do NOW. So I am embracing life to the fullest NOW and enjoying it all.

One of the girls who was in support group, but when the pandemic started and we went to ZOOM meetings she stopped participating, she is dying. She has Triple Negative Inflammatory Breast Cancer. She made the comment to another in our group “My world is becoming smaller”. She meant that what she focus’ on becomes a smaller circle every week. The therapies are no longer working and the side effects are not worth the little help they provide. That statement resonated with me. There are times when I feel like my world is slightly smaller as the things I am willing to let into my world are becoming more limited. With my little dragon whispering in the background, to let some things go as they are not worth my efforts.

For my birthday this year I decided that my efforts would be spent on communing with rescued farm animals, with an emphasis on cows. There is a rescue barn close enough to where we live that we were able to go visit. I enjoyed all the animals I got to interact with, but the cows were the best. Many don’t realize that cows are generally giant dogs, that want to be petted, brushed and sit in your lap. Obviously they don’t fit in our laps, so a compromise is made. They lay on the ground, we cuddle up to them and then we commune together. It’s a peaceful, restful feeling. It filled me with joy.

As we prepare for the final holidays of this year, I am constantly reminded how much my family and friends mean to me. I am thankful we still have time together and I relish each moment I have with them all.

Life is beautiful and fleeting

Wednesday, November 28 – Joy is Disneyland

I know I have been absent, but I have not been hiding.  I’ve been working on finding my joy.  Using my tools under the direction of a therapist to help guide me out of the vast sea of despair I was lost amid, and back to my path towards love, life and laughter.  I have been using affirmations, meditation, breathing, stress relief, art and prayer.  I’ve made myself do things that I previously found joyful and fulfilling, even though all felt empty.  I’ve had to acknowledge my fears and faced them head on knowing there are no answers for them at this time.  I faced them anyway, acknowledged them and asked them what they needed. I have felt where they dwell in my body, and slowly learned to recognize my physical reactions so I can work on releasing whatever is trying to overwhelm me before it happens.  It’s been hard work, but I am starting to feel stable again.

My last post was when I was attending Renaissance Faire in Escondido.  One of the things I did, even though my brain was screaming NO NO NO NO!  I love participating in faire and made myself do this even though I still had that part of me that still wanted to withdraw from everything because it no longer brought me joy.  I went and despite all my misgivings, had a good time.  It was not quite the same joy as before, but it was better than I imagined it would be during this period of recovery. My Guild surprised me the second weekend with the honor of being named “Caption O’Day”.  The back-story to our group is we are all pirates visiting a “tavern” in Tortuga Bay.  There is no “Captain”, only “Mistress Regina”, the owner of the Tavern where we are “drinking”.   They made me cry with how they bestowed this honor on me the second weekend.  I love all these people who love me!   Based on how well I did this fall, I am now anticipating spring season to be even better.  Despite the neuropathy, that still plagues me, I went the whole day in garb (costume), but naps were necessary.

I dyed my hair purple as part of my therapy to find my joy again.  I loved having the hidden layers of “galaxy” colors in my hair before I lost it all.  So I decided to try dying what I have grown back so far one of my favorite colors from the hidden layers.  I love it. Swimming pulls all the color out, as I am only using wash in temporary dye.  Because it is a wash-in temporary dye, it is easy to put it back after I swim.  Just wash my hair again!

I do not know why I needed someone to assign me “homework” to get me out of that vast ocean of bleakness, but I did.  I know all tools I have used them before.  I have been in dark places in my past, allowed myself to wallow for a short time, and then used my tools to guide me back to the light, back to my joy.  I could not do that this time.  Moreover, that petrified me, made me feel like I would never feel all the colors of the wind swirl through my life again.  But my therapist has been wonderful, has helped my find guided meditations that address whatever aspect we were working on that week and made me accountable to someone else who knew how to guide me back to where I knew I should be headed.

I have seen the Psychiatrist, Dr. R, three times now.  I am still giving him time to manage my neuropathy even though I am still not sure he is the right fit.  I am not off the Gabapentin yet, but he is slowly increasing my dosage of Cymbalta to make sure I have no adverse side affects, and to see if it has any effect on my neuropathy before we start reducing the Gabapentin.  I look forward to the day I can stop taking Gabapentin.  I am still not convinced Cymbalta is the correct answer either, but I will work the process with Dr. R and see how it goes over the next month or two.  If I still am not comfortable, I will start the search for a new psychiatrist while Dr. R continues to manage the meds for the neuropathy.

I met with my boss and HR as well to let them know I was ready to come back to work.  My previous position is no longer available, but they are willing to have me come back part time at first helping out with clerical work until I can work myself back to full time.  I am glad I can still go back to this company.  I went to work for them for a reason, I believe in this company.  I like their employment ethics.  In this industry there are so many that take advantage of employees, my boss can be hard, but he also believes in fair compensation.  I like this about him.  I like him as a person as well.  He tries to be gruff, but he has a big heart.  I like the people I worked with as well and I look forward to working with them again.  I start back part time on December 10th.  I’ll be working 4 hours a day, 5 days a week.

I continue to have dreams of family and friends from my past and present.  Not every night, but at least once a week I have a dream about visiting with loved ones.  Like I am reliving old memories and creating new ones at the same time.  I find these dreams comforting.  I also recently dreamed of being on a ship going through a lock system (IE: Panama Canal), and we stopped at the first lock, and had a chance to disembark.  It was at a beach, and the water was so clear that we could see sea creatures.  Fish, anemones, crabs, starfish, giant sea bass, and smaller surf fish.  All different colors and just wonderful to watch from the shore.  There was also a good size octopus, it was red.  The sea was calm, as well as the water in the locks, even when one lock was draining to bring the ship to the next level.  Usually as the water is drained to lower the ship to the next level in the system, the water on the other side of the gates is turbulent, but in my dream we could see just little ripples on the other side of the gates as the water was drained.  I know that dreaming of water is a symbol of how you feel your life is going.  Turbulent or rough waters is a symbol of feeling unsettled emotionally in your life.   So having calm, clear waters in my dream early this week was a good indicator that I am well on the road to emotional recovery.

We celebrated our wedding anniversary earlier this month by going to lunch at our favorite Italian restaurant in Huntington Beach – Mangia Mangia.  It still is the best food even if it takes forever to get there.  We also planned Thanksgiving at our house again this year.  This has been the tradition for many years now, with my Dad and Mom#2 coming down to celebrate with us.  One of my brothers and nephew started coming down two years ago, but this year chose to head back to his in-laws for Thanksgiving since he hadn’t spent the holiday with them in two years, since his wife and passed away.  Last year due to chemo, the kids, my brother and my dad took over the kitchen, while I took mini naps on the sofa.  This year I did most of the cooking.  Neuropathy still bothers me if I am on my feet to long, even with medication to help control the symptoms, so I premade a few things so I did not have as much to do on Thursday.  I also put my Dad to work on a few little projects, chopping the onions and celery for the stuffing and making gravy.  I took breaks to sit as well so my feet were not completely trashed by the end of the day.

We had planned to go to Disneyland on Friday with my parents.  It felt weird to have to purchase tickets again.  This was the first time in almost 23 years that we did not have annual passes to Disneyland Parks.  After the visit in September we had discussed getting passes to an amusement park, and felt that the cost of passes to Disneyland vs. other parks (Knott’s or Universal Studios) combined with my neuropathy, as well as the need for a place to constantly sit so my feet are not overly irritated, causing me to start walking like an old lady, would negate getting passes to Disneyland for another year.  In addition, in September, as much as I enjoyed my day, I was not finding the joy I had always felt going to the parks.  Friday found us up early to head to the park before opening to insure we secured an EVC from the Disney rentals outside Disneyland.  Years ago you could reserve a wheelchair, ECV and/or stroller as needed.  Now it is first come, first serve for any of those wheeled conveyances.

I rented an EVC, and the parks opened by the time I was situated in my rented scooter.  We had agreed to meet my parents at the Starbucks in Cal Adventure, but had not heard from them yet so entered that park and started to explore.  We headed into the Wilderness Exploration area because I love the smells and sounds in that area.  The park was still relatively empty so that early time in the morning would be a great time for me to take an ECV through without having to try and navigate around throngs of people and kids.  In the back, they had a kiosk that sold Hot Bourbon Cider, regular Hot Cider and Hot Cocoa.  Of course, I ordered a Hot Bourbon Cider. Robert chose a Hot Cocoa, and we got in line to get a picture with Santa.  We had a great time laughing in line, teasing each other about various things.  I felt good to be back in the park.  It was joyful!  I had to maneuver the ECV around a tight corner to park it so we could get our picture with Santa and did a quick whip around that corner.  Robert thought for sure I was going to head up the rocks and overturn the ECV.   He told Santa on me saying I was already “drinking” before 9am and almost crashed the scooter.  Santa said I was on the Naughty list and Robert was on the Nice list, but I had 32 days to get myself straightened out!  We laughed so hard.

The day continued to fill me with so much joy, I felt like my face would split from smiling so much.  My heart swelled and I was happy.  Mom had never seen the Holiday Parade, so we made sure we picked out a spot on Main Street and waited for the parade. Robert, of course had to tease me about watching this parade, AGAIN.  I have made him sit hours on the cold ground waiting for that parade every year on my birthday.  Every year I HAVE to take pictures, even though I have seen this same parade for 23 years in a row.  Robert could see the true me shining all day, and by the time we were ready to head over to the bar at the Grand Californian to wait for our dinner reservations it was decided we would apply our ticket purchase to new passes.  It felt right, and my heart soared.  We can go back to the parks whenever we want (well, except the last two weeks of the year and the first week of January, but we don’t normally go then anyway!).  Going back for my birthday, I can hardly wait.  We ended our time at the parks with dinner at Napa Rose, which is also a tradition now.

There are some new girls in my support group, one is a 40 year old woman who is dealing with metastatic ER/PR positive breast cancer.  She was originally diagnosed at 35 and had a double mastectomy due to her risk factors.  She has been on Tamoxifen the last five years, to reduce her estrogen/progesterone production, as this fed her cancer.  About a year ago, she noticed a lump starting to form under her arm, and it was getting painful.  She kept telling her oncologist about it, but her doctors kept telling her everything was fine.  However, it was not.  It was her hormone receptor positive cancer spreading in her lymph nodes.  Once they figured it out, and she went through scans, they also found a spot in her neck.  She went to Radiation therapy, both lumps have shrunk, and she is pain free again.  Her doctor has her on new hormone therapy drug (probably Evista), since her cancer spread even though she was on Tamoxifen, and she is on Ibrance.   She has a beautiful smile and is so upbeat.  I love having her in our group.

Last night we discussed our first time at Support Group as it seems we have scared a few ladies off.   I recounted how my first time broke me.  I kept myself together until we (Robert and I) had walked out.  He kept asking me how it went and I just kept shaking my head no, biting my lip, trying to get away from all the people exiting Cancer Support Community so they would not see me broken.  Once we made it to the car, I started crying and sobbed on him for a long time.  I was so overwhelmed that first time.  I was terrified and had yet to come to terms with my diagnosis.  Listening to all these women talk so frankly about the good, the bad and the ugly of cancer treatment put me over the edge.  Nevertheless, I went back the next week, and continued to go.  It got better and easier, and these women have helped me face a tremulous period of my life.  These women continue to uphold me and support me in my recovery.  Another woman said the first time she attended our support group, she saw me sitting there and then I pulled my knit cap off my baldhead.  She was horrified that would be her shortly.  She was traumatized at the thought of losing her long, lovely hair.  However, the following week she saw me again, just being normal with no hair, and again the following week.  Then she realized she no longer thought of me as “bald” or “sick”, she just thought of me as me, another woman fighting breast cancer and making it work.  It made her feel stronger and inspired her to face her chemo with a positive outlook.  She always wore a hat, but seemed to be able to accept that the bald would not last.  Round we went, reminiscing about our first time attending this group.  It was interesting to hear everyone’s first impressions.  I love these women and cannot begin to imagine how I would have managed these past 14 months without them (and so many others!).

Life is finding Joy