SoCS – My Heart is Breaking

“Your Friday prompt for Stream of Consciousness Saturday is: ‘last thing that broke/you had to fix.‘ Think about the word that best describes the last thing that stopped working for you and use that word any way you’d like. 

I’ve been in a terrible funk. The world is broken. I didn’t break it and I can’t fix it. I can just deal with it, the best I can. While I am doing what I can to severely limit my news intake, the harsh realities are still hurting my soul. Just as I think I am making progress dealing with family and personal issues, another war breaks out. The sky actually is falling. People around the world are dying because of heartless villains. This world of uncivilized evil beings make it hard to find peace.

How can it not affect us? I’m experiencing a difficult sleep pattern now. I am lucky if I get three or four hours of sleep at night. When I wake up, I have to drag myself to get to appointments. Typically. I could still function with very little sleep. Not now. Almost every day this week I tell myself to not take a nap. Then, I end up dozing off for three hours. I can’t fall sleep until very late. It’s frustrating, to say the least. After my water physical therapy, I was exhausted. But I managed to not take a nap today. It’s past 1 AM and my body still cannot fall asleep. My head is spinning.

I was having a heartfelt conversation with my dear cousin today. We were discussing the history of abuse and condemnation of Jews. The trauma in our DNA is real. We talked about who, specifically, we were donating funds to. We discussed our fears for family and friends in Israel. I explained that while I do not typically wear a kippah, I shall again wear mine in a show of support. It is a little thing that makes me feel a connection.   

I admit to feeling guilty about sometimes being overwhelmed with all the emotional pain, physical pain, and ailments I’m dealing with. I have it so much better than so many others. I work hard to find some joy every day. It’s an odd way to live.

I read numerous blogs this evening. David from The Skeptic’s Kaddish, wrote an expressive poem that touched me. The comments he received were very supportive. David included the 10 minute video below in an answer to one of his comments. It brought tears to my eyes. 

 

 

Trying To Reframe

I woke today at 4 AM. That part is not unusual or odd for me. The crazy part is that I fell asleep yesterday at 6 PM. I slept through the entire night.. I was physically and emotionally exhausted.

I’ve been working on and off, on prepping my house to be sold. I’ve been here since 1984, if my memory serves me right.

Ode to my home.

I will miss you, my home, but not your stairs.

I will miss your gorious bookcase, but not the dusting.

I will miss all the special upgrades I have made, but not the empty unused rooms.

I will miss the joyful memories you hold, but not losses.

I will miss the sunset views you provide, but not the sounds of coyotes catching prey.

I will miss the ways my life has changed while I lived here, but hopefully another family will find joy here.

 

It is no exaggeration that I have had thousands of “moments” in my home. I’ve shed tears of joy, tears of sorrow, tears if excitement, tears of loss, tears of pain, and tears of fear in my house.

I’ve had birthday gatherings, Passover gatherings, Christmas gatherings, Hanukkah gatherings, wedding gatherings, Labor Day gatherings, family gatherings, 4th of July gatherings, as well as countless moments of joy.

I’ve learned, with the help of others, that I sometimes have to reframe my thoughts to survive and move forward. I have learned to do this fairly well. But yesterday, I got stuck. I am still stuck.

I did some research Friday evening about my PARP inhibitor medication. My spouse and I celebrated our 27th year of marriage. He bought our favorite In-N-Out burgers and I bought our favorite Cheesecake Factory desserts. His was cheesecake with fresh strawberries and mine was chocolate cheesecake. We were discussing my nausea and how unpredictable it was. I am forever worried about what may trigger it. I have no clue. There lies my reason for doing research.

As predicted, the information I read, said that nausea is just one of the side effects of the medication. There is no rhyme or reason for it to occur. Unfortunately, I kept reading. I greatfully know that I am currently in remission. I also know that remission means that it might, or will return. The statistics were staring me in the face, and I cried. Because my cancer was at stage 3 when discovered, I have a 75 to 90 % chance that it will return. I am trying to reframe those numbers. I feel like I am in quicksand right now. If I struggle too much, I sink faster. I need to reframe my thoughts, not panic, and find a way out.

Yesterday, we decided to make the long drive to my daughter’s house. I had done some yardwork, so I didn’t feel guilty about taking off. I was giving my young grandson, Z3, the tabletop kid’s pool table he likes. He enjoys playing pool a great deal. I was taking a storage container for my daughter to use. My spouse was bringing Swedish Cars candies for the grandkids. I was also delivering all my Sizzix towers of cutting plates and my Sizzix machine. I am trying hard to downsize. My daughter had mentioned that she has a co-worker who is just getting into scrapbooking. I asked my daughter to ask her friend if she would like my cutting system. Her friend said that she would be delighted. Again, a win-win situation.

Traffic was horrible. The hours in the car were hard on my body, especially my tailbone. It was great to visit them though. My daughter allowed her untrained, attention starved, 120 ish pound golden retriever to come in the house. Hoops loves coming in the house where his family are.  We are dog people and happy to enjoy Hoops. He has very few manners, but we adore him. He climbs all over you with a tendency to mow you down. Both my daughter and my spouse, helped me keep him from trampling me. I laughed at his antics. He did calm down some, eventually. We were both willing to be covered with Hoops hair and slobber. He just wants love and attention. Don’t we all?

After our visit, we headed back to the freeway for our long drive home. We had to be home for Annie’s dinnertime. Annie spent a long time smelling us. She could tell we had been visiting with Hoops. Sniffing us was more important than eating her dinner. That was a surprise.

All our clothes went immediately into the washing machine. Showers and baths were next on the agenda. I was so exhausted, I knew I needed a nap. I laid down at 6 PM and woke this morning at 4 AM. My physical and emotional weariness won. I got the sleep I needed.

A Long Catch Up

It seems like an eternity since I’ve posted. I’ve wanted to post. My brain told me I had nothing good to say. I knew/know that is not true though. My head said that I didn’t have the energy to fight with my neuropathy to get a post out. That is often true. I haven’t even opened my computer.  Today, I felt compelled to write though.

While I have been dealing with numerous crises, as well as the aftermath of them, I have also marked many checks on the win column. The disasters that some loved ones are dealing with are thankfully not life and death. I am working to be there for them, but with full knowledge that I have a limited amount of energy.   

I am dealing with nausea on an almost daily basis.  Most of the time, I accept that I won the cancer battle and this side effect is just a reminder that I am on the other side. Most of the time that thought process works. I won’t lie though. Sometimes, I get so tired of the nausea that tears well up in my eyes. Fatigue is a daily battle. I have the most energy in the morning. I try to get something done early after playing with Annie. I never know how much energy I will have the rest of the day. I keep plodding along working toward my goal of getting ready to move.

I have won the battle over fatigue to accomplish many tasks. It took way more time than I felt it should have, but…  On a good day, I painted my upstairs bathroom. Actually, it took me three days. I covered the beautiful magenta walls with a soft gray. It’s much better for sale purposes. The small room looks larger now. I purchased new light fixtures and had the construction crew install them. I don’t do electrical or plumbing work. I did not reinstall my artwork. I am keeping it neutral. I have beautiful new fluffy gray towels to display once the house is on the market.

I’ve had most of the work finally completed on my bedroom and garage. Construction never goes according to schedule. Delays can be frustrating when it takes all your energy just to let them in to work. Once they had finished the drywall, taping, texture coating, and painting, I was eager to start regaining my spaces. The repairman did a wonderful job returning my large IKEA cabinets to their original spaces. If you know anything about IKEA furniture, once it is moved, it is rarely the same. He had to use mollies to fasten them to the walls as well as to each other. I then had to jerry-rig the shelves because the cabinets were no longer square.

It took days and days and days and more days to go through all the crud in my garage. I held each object and decided if I really wanted to move it to another house. I made two trips to the thrift store to donate good quality items. My SUV was full each time. I filled numerous trash bins with things unworthy of being donated. Anything that could be recycled, was.  I gave away big and small belongings to friends and family. I put out furniture and items from my garage and house on the curb. Happily, things were taken and rehomed. I love that so much did not end up in the landfill.

Wednesday, I had another CT scan to make sure my bronchial tubes were better. The trip into Los Angeles was long, but not terrible. This time the contrast was just in the needle in my arm. I didn’t have to drink the quart of vile liquid this time. Yay! Because I could not eat for four hours before the scan, I was starving afterwards. We went to lunch ASAP.

Thursday, I went to an appointment with my pain management doctor. He finally got approval for me to receive capsaicin treatments for my chronic neuropathic pain. I had a flashback once I sat in the infusion chair. Tears started flowing. It’s not that my chemo infusions were awful. The infusion room reminded me of my cancer fight. This time they applied 8% capsaicin sheets to my feet. Then they wrapped my feet like a mummy. I sat there for 30 minutes while the medication did its thing. After the treatment I was given a cold gel to apply to my feet. Fortunately, I did not need to submerge my feet in ice water, or cold milk as directed my doctor.

Friday, at my request, the contractor did another coat of paint on my bedroom ceiling. Yesterday, my bedroom carpet was installed. After the carpet was installed, my spouse and I brought down the full bed from upstairs. It’s been six months since the water leak. Being back in my bedroom was heavenly. I’ve not brought anything else back in the bedroom. They still have to come next week to install the baseboards. The home repair nightmare should be over soon. The night to stay in the downstairs bedroom finally arrived.

This is a long catch up post. I needed to blog today because it was a very hard emotional day for me. While I can pat myself on the back for doing so much, even when it took me too long, and I can forgive myself for not keeping up with the house, I cannot avoid my emotions. Today is the anniversary of my mom’s passing. I usually spend the day alone.  

My mom passed away from ovarian cancer one week after her diagnosis. This is the first anniversary of her passing after my diagnosis. I made it. I am a success case. My oncologist called on Friday to tell me my CA 125 is down to a 13. Terrific news.

I have been overly emotional all day. I never got out of my PJs. I didn’t eat until 2 in the afternoon. Even then, it was only because I had a headache.  I made myself a pizza. It was my mom’s favorite thing to eat when we were together. I added artichoke sauce, artichokes, olives, tomatoes, and mozzarella cheese. My mom would have been thrilled. I made it through the day. I’m one lucky woman.

Word of the Day – eternity
Fandango’s FOWC – Arrive
Di’s TTC – AFTERMATH  CRISIS  DISASTER
The Friday Reminder and Prompt for #SoCS July 29, 2023
Your Friday prompt for Stream of Consciousness Saturday is “one/won.” Use one, use them both, use them any way you’d like. Bonus points if you use them both. Enjoy!

SoCS

Written for Linda G. Hill’s SoCS prompt, where she’s given us “left alone” and suggested that we use it any way we’d like.

As much as I have felt loved and supported in my cancer journey, it has still been a time of solitude. I have been left alone with my thoughts for most of the time. From the original diagnosis day, when my brain went to  doom and gloom, to the wonderful news that the chemotherapy had worked, I’ve been left alone in my head to deal with it all. In reality, everyone is alone with their thoughts most of the time. It’s when you’d rather not be alone with your thoughts that you greatfully welcome others in.

 I have loved ones whose support has meant the world to me. I don’t think I could have made it without my tribe. I have been blessed with many amazing people letting me know they care. I have sadly, also been surprised by the lack of support from a few people I thought were friends. Clarity comes when facing this kind of crisis.

Now that my infusions are completed, my life is on a new journey. My goals are concentrating on taking care of myself. Dreams of my future are getting back in focus.

I am grateful for the opportunities to be a part of the real world. My granddaughter graduated from high school Thursday night. She worked hard to finish a year early. While we were unable to attend in person, we were thrilled to watch the graduation on a live stream. We had a better view of her, than her parents did in the stands. I am grateful for technology.

Yesterday, we made the 2+ hour drive to my daughter’s house for a small BBQ celebration. Even after our arriving late, because of a crash ahead of us on the freeway, my granddaughter was not ready. Why a beautiful 16 year old, needs such a great deal of time to “doll herself up” is beyond me. 😆  She and her girlfriends looked more adult than necessary. IMHO. I know I am just the old grandma 👵.

I decided to break all of my dietary rules for the BBQ.. I had done my hour of water physical therapy in the morning.  I had picked up See’s candy for my granddaughter without getting ANYTHING for myself. I had taken a restorative nap. I wanted to celebrate her graduation. I wanted to participate in a joyful life experience. I had a couple of BBQd hot dogs. ( but only one bun) I had some potato chips too. I didn’t indulge in any sweets because skipping store bought cupcakes is easy for me.

Even with the exhaustion, I felt more “normal” than I have in a long time. Being present for another milestone in my grandchildren’s lives is a wonderful gift I am greatful for.

Getting Back In The Groove – SoCS

I am a creature of habit. Every morning I get up about 6 am without an alarm. I take my meds. I feed Annie, and typically we go out back and play together. Since my chemo treatments, our playtime varies in length. When I am feeling OK, I try to do something in my yard. My routine varies very little. Most of time, I need a nap after I complete a chore. Since completing my infusions, I have been gaining a little more strength every day. 

As I have been regaining my taste buds, I have been cooking more. Typically, I am eating two meals a day now. My usual routine was to blog at night. I would try to clear my mind of my daily dramas. Blogging was an escape.

Sadly, there’s been a great deal of drama going on in my life lately. It might be, that because I am clearing out some of the chemo fog, more issues are impacting my spirits. There is no doubt that I am facing critical issues right now. The difference is how they are affecting me. I’ve not been myself. 

I promised myself that I’d get back to blogging by my birthday Thursday. I yearned to get back into my usual routine.  I didn’t make it though.

The emotional and financial turmoil have interrupted my ability to get back to a new normal.

I am financially responsible for all four parts of my Medicare. When I started teaching, teachers did not pay into SS. My former tax man gave me terrible advice. He told me SS was a sinking ship that would be bankrupt by the time I reached 65. On his advice, I chose not to contribute when the laws changed for teachers.

Paying for part A, Part B, Part D and part G was something I avoided as long as I could. I finally started Medicare last fall. The universe took care of me because Medicare was much better than the HMO I had been on with my spouse. My cancer treatments no longer required “approval.” My oncologist could take care of me properly without fighting the insurance system.

Now that I am done with my infusions I am beginning the next phase of my recovery. My heart sank when I was  told my copay for my new medication was a few thousand dollars each month. At first I was told that I would be responsible for about 60 grand for the minimum 2 years of medications. My future dreams of moving to a new house seemed crushed. My entire retirement check would be going to paying for medical responsibilities and insurance payments. I was so shocked I couldn’t think straight.  After numerous calls to the specialty prescription company and my part D insurance company, I think I have more clarity. Hopefully, I will not be required to spend thousands on my medication after this first dosage. It’s still a hit, but one that I think I can handle.

I am also speaking with the restoration company trying to get my house put back together. I want to get back to sleeping in my ground floor bedroom. I want my old routine. I want to move back downstairs where I’ve slept for 38 years.

I am anxious for a new normal. I’d like to be able to take care of myself physically and financially. My new medication has its own side effects. So far, I am feeling a little tired, but nothing I can’t handle. I expect more side effects, but I am praying that I don’t succumb to all the possibilities explained to me by the pharmacist. I won’t lie, our extended phone conversation made me nervous.

After signing for the prescription, hand delivered to my door, I was nervous about taking the pills. This new routine, that I must follow for at least two years, is daunting. I will follow the routine because it is my best hope for fighting the cancer. I will make a new normal step by step. This ship is not going to sink.

 

Written for MLMM Sunday Confessionals, hosted by Oloriel. This week, for Sunday Confessionals, we were invited to create or share a creation that delves into your personal habits and custom. Also written for Linda’s SoCS prompt.

Your Friday prompt for Stream of Consciousness Saturday is “sink/sank/sunk.”