JusJoJan Catch Up

I attempted to write a blog post again last night. Once again, I was unable to see anything under the My Sites column. I was unable to write in classic editor. By 1 AM, I gave up.

Last night was a bad night. Acid reflux and nausea were keeping me uncomfortable and awake. This morning I tried again to write and found that if I went into block editor, clicked on the big W, I was taken back to where I could post.

I’ve decided rather than go into the drama surrounding my water leak, I’m going to do a roundup of JusJoJan. This is all a stream so forgive me if it doesn’t flow naturally.

Jan. 19’s word for JustJoJan was ‘complaint’  provided by John. I am very compliant when it comes to following the directions of my doctor’s. I figure they know more than I do, so if I have questions about some protocol, I’ll ask.
I am compliant with the rules of the road. I don’t run yellow lights. I always use my turn signals. I don’t tailgate. I get annoyed with drivers who feel they do not need to be compliant.

Tuba provided Jan. 20’s prompt, ‘phantom’. At one point some of my doctors assumed that my coccyx pain was just a phantom pain. Low and behold, eight months later it is still bothering me. I am grateful that I kept pushing my doctor’s to find out the cause because it led to the discovery of my cancer. There is still no resolution to my coccyx pain.

January 21 – SoCS (“count on it”)  I can count on the universe to throw more and more tumble weeds in my path. On the occasions where there is a concrete block hidden in the middle, I struggle to move the weed out of my way. I still try hard to keep one foot in front of the other. I still fight my way to find some joy. I can count on it being good for me to find happiness.

Kaye brought us Jan. 22’s word, seasonal’. Here in Southern California, we are having what ‘used to be’ seasonal rainstorms. We have been in a serious drought for years so this abundance of rain is very welcomed. I do worry though about the possibility of too much seasonal rain.

Paula supplied the JusJoJan prompt, ‘paintbrush’ for Jan. 23. If I were able to use a paintbrush to illustrate my cancer, it would look like an ugly blob running from my body. It would be smaller and smaller every time I receive a treatment.

Linda gave us the Jan. 24 word, ‘ideal’, which was brought to us by Astrid. In an ideal world, there would be no cancer. There would be no addiction stealing loved ones away. In an ideal world, our pets would live as long as we do. In an ideal world, Covid would not have ever destroyed lives.

Jan 25 was Linda’s One Liner Wednesday.

J-Dub delivered  Jan. 26’s prompt, ‘family’. Family is of the utmost importance to me. You can never have too many people that love you. I am grateful for the friends that are my family and are there for me in numerous ways.

Kim brought us Jan. 27 JusJoJan prompt, ‘amenities’. Someone I care about was explaining about the amenities she has at her infusion center. Happily, hers is not for cancer. Her center looks more like a day spa with free meals provided. The best amenity my cancer infusion center has, is the wonderful staff. I am grateful for my ability to get treated at a cancer center that cares so much.

Linda’s Jan. 28 prompt for SoCS and JusJoJan was ‘throw in the towel’. I am grateful that if, or when I feel like I might want to throw in the towel, my tribe boosts me up. I am in this challenge for the long haul. I have no intention of throwing in the towel. I will make it to a one story house closer to the beach. I will be near my source of joy.

Wendy chose January 29’s JusJoJan prompt, ‘exercise’. Because of my numerous physical challenges, I am unable to do most forms of exercise. I found the perfect solution in my water physical therapy. Once I fractured my ankle, I had to stop. It made me very sad. Now that I have the port in my chest, I cannot go to water therapy. At some point in the future, I will be allowed to submerge my body. As soon as I get the go ahead, I will continue my water exercise that I enjoyed so much.

Dawn supplied Jan. 30’s JusJoJan prompt, ‘canine’. Annie has been a life saver through all my ups and downs. She “reads” my moods to comfort me when needed. I am grateful for her loving care. She is definitely a four-legged member of my tribe.

This post took me much longer than expected. My spouse’s computer is slow and jumpy. But I made it. I checked and an hour ago Linda posted the last JusJoJan prompt. The last prompt is ‘write’. The mere act of writing a blog post is huge for me. It means that I am doing something I enjoy very much. It means I am not in agonizing pain. It means my head is functioning. Writing means that I am still a member of the real world. I am grateful that I have this forum to write and share my thoughts.





What’s Next

I’m trying to focus on the good things going on in my life, but…

I felt pretty good yesterday. For the first time in ages, I made myself some real food. I had no meat in the house so I got out some refried beans as my protein source. I added avocados, a little salsa for flavor, some tomatoes, cheese, and olives to make a terrific burrito. I felt so accomplished.

I walked with my phone and cane down the short walk to the cul de sac. I know I need to work on building up strength. I didn’t take a nap the entire day. It was the most normal I have felt in ages.

I called and called the restoration company my insurance handed my claim to. After hours had passed they finally called back to tell me that they will come on Sunday morning between 8 and 10 am. I can hardly believe that this taking so long. At least the stairs are not winding me anymore.

After dinner I wanted to write a blog. Low and behold, my computer was black. The charging light was on, but nothing was showing on my screen. I tried ctrl/alt/delete, but nothing worked. I tried turning it off and back on again, still nothing. Frustration was my mood for the evening. I was determined to not let my computer depress me.

I’ve finally hit the magic time to be able to drive. My surgeon’s directions were to make sure my responses were quick and that I had the energy to drive safely. Today was the day. I slept well last night.

I awoke at 6 AM making Annie very happy to be fed on time. After feeding Annie, I dressed and drove to get gas for my car. The pump wasn’t working correctly, but the attendant came out and assisted me. I am happy that I asked for help. I then drove to the grocery store. I wanted to shop like a normal person. There were only three other customers in the store. Two were masked, like I was, and one was not. I had searched for some new recipes online hoping to make some yummy dishes. It was slow going, but I was pretty sure I found everything I needed. By the time I came home and put everything away, I was exhausted. I laid down on the couch and fell asleep immediately.

About 45 minutes later I was awakened by my cell phone. It was the pharmacy notifying me that my meds were ready. I drove to pick up my medications and my spouse’s. I then went to the florist next door and bought myself some purple and yellow roses. It was exhilarating to be in the real world. I needed to make one more stop. I went to Chick-fil-A to purchase gift cards to add to my Valentine’s gifts for my grandkids. I will admit, I bought myself some strips too.

After arranging my flowers, I took a long nap. I deserved it. When I awoke, I spent hours in the kitchen making multiple dishes for the week. I made ground turkey and beef meatloaf. I separated it into freezable portions. I made ground turkey meatballs to add to my previously frozen homemade sauce. I made turkey meat seasoned for nachos. Then, as my guilty pleasure, I made spinach artichoke dip. It felt good making new dishes and my old stand by. 

In an attempt to write a blog tonight, I borrowed my spouse’s computer. I had difficulty logging into WordPress because I’d long forgotten my password. The next challenge was that his computer is old. I could not get into My Sites. I was able to start a new blog, but not in classic editor. Oy vey again and again. It’s a little past 1 AM. I am ready to turn in. Hopefully, I can figure out how to post this.

Turning A Corner (I Hope)

Warning: Very long catch up post.

It’s been a rough few days. I wanted to write a post to keep my toe in the real world. I miss my blogging community. I miss the posts of those I follow.  I miss the world where cancer is not in charge of everything.

My spouse had a cold on the day of my last infusion. We were staying away from each other as much as possible. We wore masks inside the car to protect each other. We stayed on different floors in the house. We shared no meals together. I knew full well, that getting sick would be detrimental to my recovery.

On Friday, he became symptomatic with signs of the flu. We knew it was time to stay completely away from each other. His friend, understanding the severity of the situation, offered to let my spouse stay with him. This meant I needed to take care of myself. I was pretty miserable to say the least, but I made it. The nausea was terrible. The anti-nausea medication did work to stop the violent body reactions I had the first time. Unfortunately, I was in a constant state of nauseousness. My ability to think straight was hampered greatly. I was on survival mode. Day by day, my tribe let me know I was in their thoughts. It helped a great deal.

I was concerned about getting dehydrated again. I wanted to avoid another hydration infusion if I could.  I tried sipping water. The minute water crossed my lips, the gagging started. I reached out to a friend asking her to get me some low acid orange juice. Sometimes, sipping the OJ did the trick. I tried sipping ginger ale. Sometimes, that worked. On a particularly hard day, I started vomiting the ginger ale. Nothing like a negative reaction to turn your body off something that had previously helped. Another dear friend brought me some Naked Juice. The sweet juice provided both calories and needed hydration.

Each day, my spouse and I would check in with each other. I was often in tears because of feeling lousy physically and emotionally. He was very frustrated because he wanted to be here for me. I was frustrated because I couldn’t take care of myself, much less help him. He is in day five of the terrible flu. He took the week off school to try and recover. This is the worst flu he has had in a decade. I do my best to not wonder out loud what the universe might have in store for us next.

Sunday night was awful. The nausea won. The tears won. I hadn’t slept more than a couple of hours in days. I was feeling defeated. True to form, my fibromyalgia was kicking my butt. Costochondritis had taken over my body once again. Knowing it is not dangerous is a good thing. But dealing with chest pain, rib pain, and back pain, on top of everything else going on, is challenging. The more moving I attempted to do, the more pain I had/have. Costochondritis and fibromyalgia cause my entire body to feel tender and painful. This also cause anxiety. To say I’ve been a mess is an understatement.

I got up Monday morning and the carpeting in my bedroom was wet. That’s never a good thing. Alarms went off in my head. When I bent down to check out the situation, I realized water was seeping out from the wall between the garage and my bedroom. I could barely move, but I went into the garage and saw water dripping from above my washing machine. I put a large bucket under the leak as a temporary solution. I came back in and put a fan on the carpet. The smell from the wet carpet was making me sick.  I retreated to an upstairs bedroom, holding on to the stair rail for dear life.

Monday night, with the advice of a tribe member, I took some CBD for my pain. I was able to sleep for six straight hours. I awoke with a much clearer mind. The nausea persisted, but I was able to make some calls. Unfortunately, I also woke up with cold symptoms. My nose was running nonstop. I called my homeowner’s insurance company repeatedly. After ten minutes on hold, the computer says they are sorry that they are busy so leave a message. I left repeated messages, and no one ever called back. I finally downloaded the app for the insurance company. Sure enough, a bot asked me to type in a question. I asked to speak to a human being. The bot said they couldn’t understand my message. It asked if I wanted to speak to an agent. I confirmed that that was exactly what I wanted to do. I finally spoke to a man and told him what was going on. He advised me to call in a plumber to try and stop further damage from the leak. He gave me a claim number and assured me that he would send out a remediation crew to dry out the carpet. They never did though.

I called the amazing plumber I had to use at the beginning of December. They informed me that they were booked up until next week. That brought tears flowing. The dispatcher said that they might be able to come in the afternoon, but if not, it would be a week. I sent out some good intentions for the plumbers to come. I spent the day on my couch with body aches and a runny nose. The nausea was a little less, but ever present. My bald head was hurting and tender. I carefully made the short walk to my mailbox only to find more bills. What else is new?

Sitting on my couch, I kept an eye out for the plumber’s van. Imagine my delight when they arrived. I masked up and met the plumber. They immediately got to work removing the ceiling above my washing machine. They found a pinhole leak had caused all the damage. They estimated it was a two-hour fix. The two of them worked nonstop removing the ceiling, taking everything apart, fixing the problem, and photographing it all for me. (For my insurance company) The plumbers were masked, gloved, and wore foot coverings the entire time. I was grateful they understood my need for staying protected.

I was able to move around a little bit more, even with the nausea. I was out of the Naked Juice and worried about not having anything to keep the nausea at bay. I had tried to place a grocery delivery order without success. I was beginning to wonder if I knew another way to get my needed items.

When the plumbers finished they asked if I would like to call the insurance agency so they could explain what they fixed. I attempted to call the insurance agency but evidently, I was assigned an agent on the east coast. The office in New York was already closed. Why on earth the agency would assign a claim to a New York agent when I reside in California was beyond me. I did the app procedure again. I got a bot again. I asked for a human being again. I finally spoke with a representative, but she was not an agent. My plumber talked to her and gave her his contact information. I was grateful that the leak has stopped, even though I can’t sleep downstairs in my bedroom.

While the plumbers were here, my neighbor across the street arrived home from work. We spoke about the plumbing issue. I told her how grateful I was that the plumbers were able to fix my issue. She asked if she could help with getting any groceries because she was headed out after dinner. I spoke up and asked her if she could get me some Naked Juice. She got some later that night and delivered it to my porch. I am grateful she asked. I am grateful I spoke up. I am grateful for the ability to drink something without vomiting.

I was convinced that yesterday was my turning point day. I was able to eat three small meals I made for myself. I was able to keep down liquids. I had the plumbing leak fixed. Even with my runny nose, I was in less discomfort overall.

Last night, the sneezing started. Along with every sneeze my abdominal scar pulsated in pain. I tried the CBD for pain again. It was quasi successful. I am grateful I got some sleep, even if it wasn’t all I’d hoped for. I am grateful that I was able to take care of myself post infusion. I am grateful that I have reached the time frame to try and drive. I am going to take the advice of a tribe member and try to drive around the block before going further away from home. I’ll wait until I feel better from the cold symptoms.

I am taking care of myself as best I can. I am grateful for feeling more like myself every day. I am grateful that the universe keeps sending me help when I need it. I am grateful for my tribe. I am grateful for the 3rd infusion coming next month.


Day 2 After Infusion 2

It’s past midnight. Thursday was my first day after my second round of chemotherapy.  The day after my first round was not too bad, but the second day was awful. I’m hoping not to repeat the same pattern. Today was a mixed bag of being extremely tired with spurts of hyper energy. I rested and or slept whenever my body wanted me to. I got up and moved when I felt the need to do something.

Following the directions of my oncologist, I took anti-nausea meds four times. She explained why the second day was so much worse than the first after my last treatment. It seems that the meds take another 24 hours to fully get out of your system. The last time, I did not take anything the second day, because I was avoiding the horrible side effect. This time, I took the recommended medication that does not cause constipation. I am hopeful that I will not wake up with a repeat of the hard time I went through before.

To be honest though; the nausea has already started up. I am on the recliner in the living room to keep my head elevated. I’ve taken my meds. I am trying to think calming thoughts.

Another good reason to be here on the couch is that I can see the candles I put in my front window. A few years ago, pre Covid, I purchased nine battery operated candles that can be applied to a window.  My original thought was to display a menorah on my living room window. I would turn on an additional one each night, as is the custom. For whatever reason, I never followed through with my idea. This year, as I put away my very underwhelming amount of Hanukkah decorations, I came across the candles. A thought popped into my head as to how I could use them for another purpose.

I first had to see if the batteries still worked. Happily, they each lit up. My decision was to put a candle in the window after each chemotherapy infusion. To me, the candles represent a miracle happening. My body is taking on amazing chemicals to destroy the cancer inside me. Each treatment brings me closer to a new life with new hope. I have the candles set to come on at dusk each night. I am rejoicing in being 1/3 of the way through my regime.

My tribe is encouraging me every day. I feel loved and blessed. Many thanks to all those who help give me strength.

JusJoJan ~ Phantom

Linda has provided us with the 20th JusJoJan. The word for today was given to us by Tuba’s blog.

Your prompt for JusJoJan January 20th 2023, is “phantom.” Use the word “phantom” any way you’d like. Have fun!

Forgive me if you must, but I do have a one track mind right now. The first thing that came to my mind was that in the beginning of this journey the medical professional believed I had phantom symptoms. I explained the horrible tailbone pains as well as the sporadic pains in my abdomen. They felt there was no connection and only focused on the tailbone. Luckily, I pushed forward and insisted on getting an appointment with my primary doctor and my gynecologist. It took weeks, but the two doctors confirmed that I needed to see an oncologist and have cancer removal surgery.   .