JusJoJan ~ My Fairy Tale

 

It’s the fourteenth day of Just Jot It January and Stream of Consciousness.

Your prompt for #JusJoJan the 14th and Stream of Consciousness Saturday is: “once upon a time.” Start your post with “Once upon a time,” then write whatever comes to you, whether it be fact or fiction. Have fun!

I had an idea for my stream before reading some other bloggers. I liked the idea of going with a fairy tale.

Once upon a time, there was a woman named Lauren. She had been experiencing some pain and decided to go to her doctor for help. Her doctor quickly diagnosed her problem and started her on a homeopathic regime to eliminate her issues. Her pain issues were resolved with acupuncture, massage therapy, and herbs. Her life was better than it had been in a long time. She was so overjoyed with the reduction of pain, she decided to venture out into the world more.

Lauren went to an indoor sky diving experience which she had always wanted to do. Then she went hang gliding off the nearby mountains. She took her grandkids on a hot air balloon ride. They ended up having a picnic in the air. Her grandkids hadn’t been to Hawaii with her, so they took a vacation to the Big Island.

Lauren then bought a house right on the beach. Once she had it decorated to her taste, she invited everyone in her tribe to come for a party. She had plane tickets delivered to each and every one of them. There were nonalcoholic beverages and tasty hors d’oeuvres galore. It was a glorious celebration of health and happiness. The music selection was varied. The volume was loud enough to be enjoyed, but not too loud to inhibit conversations. A photographer was on the scene. Pictures were sent to each partygoer so the memories could be recalled at will.

…and back to reality.

As I was writing this blog, I gently rubbed a sore spot on my head. A huge mass of hair came out in my hand. I cannot help but wonder if I will have anything left by my second infusion on Wednesday. It is still not bothering me. I think total baldness might be a different story.

17-year-old with cancer poses for glamorous photo shoot

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JusJoJan and SoCS ~ Out Of The Box

Linda is giving us a twofer today.

Your prompt for #JusJoJan and Stream of Consciousness Saturday is: “out of the box.” Write about the first thing that comes to mind when you think “out of the box.” Enjoy!

I am a consistent rule follower on almost everything. I listen to the advice of others and mix their input with my own thoughts to come to a conclusion. Thinking out-of-the-box is what helps me find answers that fit my needs.

Today was a great day. I felt like I was closer to being me than I have in a long time. I tried to think of what would make me happy. I wondered out loud if there was something I could or should do with the increase in energy I was feeling. I took no pain meds, no gummies, and no nausea pills until bedtime. At bedtime, I took an anti-nausea pill (nights are awful for me) and my antidepressant. I connected the dots and realized the sadness and weepiness I have been feeling is most likely linked to the fact that I have been off my antidepressant for a few days because of the nausea.

I was up walking around my house more than I have been in forever. I wanted to do something fun. My out-of-the-box decision was to eat some of the Mac N Cheese I made and stored in my freezer, pre-surgery. I also had a small bowl of Rocky Road ice cream. I haven’t had any of my freezer goodies because of the fear of the food being binding.

I also did a minor cleaning out of the refrigerator. I smiled when I had finished the chore. My spouse has been amazing but cleaning out things is not his strength. (Sorry dear) I thought of doing something wild and crazy like taking a shower while my spouse was at school, but I chickened out. (I need help putting the bandage over my port so it will be safe to shower.) I thought of getting in my car and taking Annie for a ride. That of course is impossible because I cannot drive yet. I thought of walking out to the mailbox and getting my mail. There was no rain today, so that seemed doable. I carefully went down the front steps, dressed in my flannel PJs, and retrieved my mail. This was a first for me. Annie was excited to go out front while I picked up the mail.

In my head, post all the chemo treatments, I want to find an Air B&B by the beach. Maybe between the treatments will be OK. I have never been to an Air B&B. It seems so foreign to me. It is out of the box compared to a hotel.

On a very difficult day this week, I asked my spouse to tell me a story about going to the beach and staying in some special place. He told me a terrific story about finding a place that will let Annie come and stay with us. He told me about us walking on the beach with the water up to our ankles. At the time, I was incapable of taking ten steps on a hard surface. It was very comforting to think about the possibility of walking on the beach.

Cancer has changed my idea of out-of-the-box forever. I have been working on ideas of things I’d like to do post chemo. The one that keeps recurring in my head is my desire to go and do the indoor skydiving. When relaying that thought to my spouse, he just says that he will drive me there and watch me do it. LOL

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May be an image of text that says "JUST A REMINDER THAT YOU DON'T HAVE TO MAKE RESOLUTIONS. OR HUGE DECISIONS. OR BIG PROCLAMATIONS. YOU CAN JUST SET SOME SWEET INTENTIONS AND TAKE EACH DAY AS IT COMES. VICTORIA ERICKSON"

 

SoCS ~ And The Beat Goes On…

Warning: Very Long Blog Post

It’s Saturday, and my brain is working for awhile (I hope) I am one day out of chemo for the first time. I love SoCS because where ever my brain goes traveling is OK. In all honesty, this blog is brought to you by gummies. So it might be a very wonky stream.

Linda’s blog explains how to join in for the last SoCS for the year.

Your Friday prompt for Stream of Consciousness Saturday is “new/knew.’” Use one, use both, use them any way you like. Bonus points if you use both. Enjoy!

I had just seen this meme right before reading Maggie’s stream of consciousness. The though of a new use making a tree happy brought a smile to my face. The idea that what we thought we knew, was changed by what we read makes me smile. I like finding things that make me smile.

May be an image of text that says "Each time you open a book and read it, a tree smiles knowing there's life after death"

Life keeps moving faster and faster right now. I keep trying to just focus on one day at a time. When I am inundated with reminders of future appointments, it’s a difficult task.

I had my telemedical appointment on Wednesday. We had to first go and get my CT scans done. As usual, my tailbone was hurting terribly. I was able to use my tailbone pillow in the scan. That made a huge difference for me. The tech was great. She made it feel like the test was done in five minutes. That’s a good thing to me. We had time to spare before I had to be home for my telemedical appointment.

I prepped for telemedical appointment with plenty of time. You were supposed to be in the “room” ten minutes before. I signed on and sat waiting. I’m impatient so I got up and took down some more Hanukkah decorations. I came back and still no doc. It wasn’t time yet. I went out front to get the small wooden Hanukkah truck to add to my decorations bucket. My spouse told me there was activity on the computer. I got there just as the doctor was clicking out. He came back right way and we began our appointment ten minutes early.  The doctor was thorough and kind. (I have been very impressed with the people at Keck Medical.)  The doctor explained how I had to prep for the port surgery. He described: what types of ports there are, the purpose of each, what mine would look like, the type of anesthesia (twilight), the length of the surgery, aftercare for the port, etc. It was a bit daunting. I am grateful my spouse was here for an extra pair of ears. The doctor was telemedical calling from his house. I heard his little girl in the background and commented. He brought her to the call. She introduced herself and I told her how beautiful she is. By this time Annie was at my chair and turned the computer toward her. He said pets are great healers, which I agreed with.

In thinking back, I believe that I was more worried about the port surgery than the chemo treatment. And that was already a big one already.

Thursday, prepped and ready, my spouse and I made good time getting to the hospital. It was chilly and drizzling outside which fit with my mood. What I really wanted was to be going to Starbucks for a Vente hot chocolate (195 degrees, no foam, no whip). My spouse promised me one as soon as I was allowed.

He’s been so amazing through all this. The doctor in Wednesday, said I might get in earlier than the time stated because it looked like the board was clear. We were hopeful. They were already requiring me to be there 2 ½ hours before surgery.

They took me up right away to the pre-op room. You get to sit all alone waiting for them to come and get you. This causes huge anxiety for me. (Have me come in five minutes before we go to the operating room, and I’d be happy.) The first thing you get to do after removing all your clothes is get an IV put in the back of your hand. This is very painful for me. I don’t know if it is my fibro, old age, or something else, but for days after I hurt and have a huge bruise.

I brought my stuffed animal support dog from my cousin to keep me company. Thank G-d for my tailbone pillow because it was a long wait. Even laying on the bed causes my tailbone to hurt. The nurse asked me my pain level and I told her honestly my tailbone was at a 7. The other pains were lower. I followed the rules and took nothing after ten the night before.  She notified the doctor. She confirmed that I was taking a narcotic and requested one for me. A short time later I was brought water and the medication. I was told to use as little water as necessary. When I enquired why I was able to take the pain pill now she stated that pain medication is different than other meds. In my head, I thought anything by mouth will have the same risk involved for the surgery. It helped quickly, but had they allowed me to take a pill when I woke up, it never would have elevated to this level.

The doc came in and we spoke about the procedure. He quickly went over the same things as the other doc did the day before. I had a question or two for him and he answered kindly. I must admit that he was very young and still had the G-d complex some doctors have. About half an hour later they wheeled me into the operating room. It was about half the size of the surgery room earlier this month. The people were all very friendly, told me their names (which I would never remember), and were extremely kind to each other. It felt like everyone was working as a group to do everything to the best of their ability. I wasn’t sure if it was fake at first. I choose to believe that these people are good at their job and very courteous. I was very relieved when I was told I could have my tailbone pillow during the surgery. It was covered with one of their warmed blankets. I felt heard.

The surgery is performed under a drape to help minimize exposure risk. I had commented to the nurse bringing me down the elevator that I was claustrophobic. She had just remarked that one of the elevators was out of order because it broke down with two women in it. She told doctor I was claustrophobic and that she would be making a “tent” out of the drape so it wouldn’t be too close to my face. That was very caring of her. Every interaction with the doctor by all the staff was kind and filled with thank you comments. It made me giggle to think that the way they treated him, helped encourage his G-d complex.

I was kind of hoping I would sleep through the procedure. I didn’t. It was OK though because I carried on a conversation with the doctor through most of it. He was explaining what he was doing. He warned me of the initial numbing shots. As promised, they hurt and stung a great deal, as they were going in. I am grateful for the deep breathing techniques I have learned over time. They could just be blowing smoke up “you know where”, but I am constantly be told by people causing pain to my body that I did a great job. Is it because they usually hear cuss words and threatened bodily harm?

Then came the repeated additional shots which had no pain involved. I was aware of them, but no pain. Step by step, the doctor described what was going. The best analogy I can make is when you have a tooth issue and they have to pack and unpack crud in the opening. It felt like he was packing and unpacking stuff in the six-inch space in my body. He actually was. In the one opening by my collar bone, he was trying different lengths of wire. He seemed elated when he got it just right. The other opening has the actual port in it.

I assume my nerves were getting to me because my blood pressure was rising. When the doctor was finished the staff all thanked him. I wondered if he was their version of McDreamy. I was even wondering if this is how cults start. (I am aware that I have a strange sense of humor.)

Back on the gurney and down to post op. The nurse was doing her very best to take it easy over every bump. I joked with her asking if they had to take courses in how to move a gurney. She laughed and said they are always learning, and she felt she was not good at it, at all. I complemented her on doing such a great job with my additional concerns. She did well and I wanted to acknowledge it.

In post op, I got to know the nurse well. She was a second-generation nurse. She spoke very proudly of her mom. She told me all about her siblings. She is not in the exact field her mom was, which seemed to distress her.  I asked her if she was happy. She said she was and explained that she was newly married and had been on this job for only a few months. Other nurses came and asked if she needed some time for food or a “break”. She went once to talk to a family member. The babysitting nurse introduced herself and reviewed my stats again. I was told that I would be given a medication for high blood pressure as soon as the other nurse returned. They explained that during surgery many people are stressed, and blood pressure issues arise.

If you haven’t been in a hospital in a while, it’s amazing how many times you have to restate your name, birthdate, and often what they are giving you. They scan your wrist band and yet still ask you to verbally respond EVERY time. I was supposed to be in post op for half an hour and then back to the pre-op room for another half hour. The high blood pressure meant I had to stay in post-op for a longer time. Finally, after the second dose of the med, my blood pressure started to decrease. I waited another fifteen minutes until the required numbers would allow me to transfer to the next step.

The trip to the pre-op room was kind of funny. The very petite, young nurse could barely see over the gurney. Luckily, she knew which elevators were easiest to access. She explained why she used particular paths also. I have such respect for the nursing profession. Once I arrived at the first room I was immediately met by two nurses. The one nurse informed me that I would be getting dressed and leaving right away. Evidently, because my longer than expected stay in post-operative care I didn’t have to wait in this room. I was told my blood pressure had lowered enough that I did not need to go home with any medication. One nurse came in with apple juice and told me to drink it all. I followed their orders even though I’m not a fan of apple juice. Then I was asked if I liked salty or sweet crackers. I gladly accepted the graham crackers. It was a top priority for them, that I eat something immediately.

The one nurse helped me get dressed. I asked if I could finally get the needle out of my wrist. She told me I needed to be dressed and officially discharged before they could take it out. (Talk about giving someone a good incentive.) After I was clothed, and the needle was removed both nurses asked about my first chemo appointment which would be the next day. It was commented that there should be no reason for needles in my wrist or the back of my hand again. (I am grateful for that.) I was asked if I had any questions about the chemo. I told them that I hadn’t finished packing and was unsure of exactly what to take. They stated that I needed snacks, my own water, soft foot coverings, entertainment, and a head covering. I questioned the last one. Evidently, the rooms are very small and cold. I explained that I ordered some head coverings for when I lost my hair, but I don’t own beanies. One of nurses backed out of the curtain and returned with a holiday (Christmas) bag with an extremely soft, long scarf. It has the hospitals name on it, and I could care less about that. It accompanied me to my visit yesterday. It was a very sweet gesture on their part.

The evening was uneventful. I stuck with the non-narcotic pain med as well as gummies for relief. The constipation was most unbearable. The incision spot was tender but not too painful.

I will stop here because it has taken me hours to get this done between phone calls, texts, Amazon deliveries, and the small (so far) side effects of the chemo. It is a long read, but I am doing this as part of my recovery.

 

 

 

 

SoCS ~ Cozy

Linda Hill is our hostess for SoCS. Your Friday prompt for Stream of Consciousness Saturday is “cozy.’” Use it any way you like. Have fun! 

I am awake at half past two in the morning. That is nothing new for me. My sleep patterns have always been erratic. What is unusual is the fact that I awoke with a very clear mind that I had written a blog post. I have never dreamt about blogging before. I take that as a sign that I should get my act together and write something. After all, my blog is my opportunity to keep my head clear and my experiences real.

I read some blogs, and then looked at my drafts folder. I rarely have drafts. I write what I am thinking about at the time. This weekend, I had started writing a SoCS post. I’ve decided to start there and see what comes from my thoughts.

Feeling cozy is of the utmost importance to me right now. If it’s chilly outside, a warm comfy blanket makes me feel cozy. With all my pain issues right now, I need a great variety of pillows to assist my goal of being comfy and cozy. Coziness is elevated with a super-hot, hot chocolate and a brownie. (I indulge in one cup of hot chocolate almost every day. The brownies are not so frequent.)

If it’s warm outside, a thin blanket or covering is needed. A large glass of Alkaline water will be near, to quench my thirst. I’m cozy when the din of the TV relaxes my brain. No matter what the weather is like, Annie by my side adds instant coziness. How can she not?

The most important thing that makes my life cozy right now is reducing my pain levels. I am working hard to keep agony at bay. My goal is to keep the heavy narcotic use to a bare minimum. I know the pitfalls of using narcotics, and I guess I am lucky that I have negative side effects of their usage. I am not one to take medications easily. Right now, I use the RX pain med, the narcotic, and gummies as needed. When I start to feel my pain escalating, I consider how severe the pain is, as well as what I have coming up. If I am staying at home with no appointments, I typically try a gummy. They ease my pain but often leave me a little loopy. If I need to go to an appointment, which there are tons and toms lately, I take something stronger. What I do not want to happen again, is to be out at an appointment with nothing in reserve. When I went to the pain management appointment last Thursday, my pain was so severe I was in tears.

The needle in my coccyx Thursday, gave me amazing relief for a few hours. It was requested that I keep a log of my pain level every hour until midnight. I was happily at a zero for five hours. Then the pain returned, but it didn’t get past a three/four. I reported my decreased pain level on my telemedical appointment. They seemed happier than I was. I needed to stay focused on the fact that I was not in the 7, 8, or 9 I had been experiencing. Feeling cozy is much easier when I’m not crying in pain.

My spouse and I had a quiet cozy weekend. We lit our candles and enjoyed the last days of Hanukkah. I texted my daughter and each of the grandkids on Christmas. They were in the thick of their celebration. It’s always nice to get messages from them. I am aware that they are super busy. I am happy that we had time together before my surgery.

My phone has been active nonstop with calls and texts about medical appointments. Sunday and Monday were beautiful days outside. Joyfully, I was feeling up to watering my backyard. The wonderful sunshine made me feel so cozy, I napped on my outdoor swing. The 80 F weather was blissful. Yesterday, I was on my swing in the lower yard looking at everything that I SHOULD do. I caught myself and decided to ask my spouse to put away the ladders. I do not need to see them reminding me of the unfinished projects. I have no doubt that I will not feel up to climbing a ladder and finishing the balcony painting in the foreseeable future. The ladder was folded up and put away, so as not to make me sad. That seems like a strange sentence. But seeing something I did not finish and may not finish soon, does make me sad.

I am a rule follower. I was told I could take a bath, not a shower, after four days. There was to be no discussion, just do as I say. I was allowed to finally take a bath last night. Relaxing in a cozy Epsom salt bath with two hot water refills, was heavenly. My tailbone is still hovering between a 3 and a 4. I still need my cushion. Getting in and out of the tub is still a challenge. The decrease in tailbone pain has been accompanied by an increase in abdominal pain. It’s strange but I feel like my insides are taking turns making me aware that I am still healing. I’m 20 days post-surgery and want to be “all better.” I realize that I am not fully recovered. I am concerned that when I start chemo on Friday, I will be very uncomfortable from all my current issues.

I will need to get up in a couple of hours. We have a long drive to a distant hospital for a Covid test pre port surgery. Then I have a telemedical appointment with one of my doctors. I truly don’t remember which one. I just show up. I have an appointment with the dentist also. I somehow deleted the text reminder, so I am unsure if I can, or even should go to the appointment. Other than medical reasons, I am staying isolated as directed by my doctor. To say I am in compromised health situation is a major understatement right now.

I am thankful for the few awesome warm days we just had. Now the forecast is for 60s with intermittent rain for a few weeks. I love the rain. I am OK with staying at home isolated. I just want to be able to get cozy and watch some fun DVDs without too many side effects of the chemo.

To set the tone for my chemo day, I am packing items to make me feel cozy. I have a snuggly blanket that was my moms. I have the stuffed dog that my cousin gave me for my surgery. I have some wonderful audible books on my phone.

May be an image of one or more people, sky and text that says "Take some time every day to honor your feelings and to embrace your sensitivity because your sensitivity is a strength. ANITA MOORJANI"

 

May be an image of text that says "H If you have the power to make someone smile, do it. The world needs more of that."

SoCS December 3

Linda’s SoCS- Twin/ Tween : Your prompt for Stream of Consciousness Saturday is “twin/tween.” Use, “twin” or “tween” any way you’d like. Bonus points if you use both. Enjoy!

I am a Gemini, the sign of the twins. Geminis (for as much as I follow astrology) have a dual personality.  Their strength lies in their versatility. I’m not sure about the whole dual personality thing. I do believe I have multiple facets to my personality.

My mother was always one to talk to strangers. She could speak to anyone at any time. I was typically embarrassed when she would strike up a conversation with whomever she met. Low and behold, I picked up her personality trait, even though I didn’t want to. For quite a while I lived my life taking to strangers, but it didn’t always feel like I was in my own skin.

I changed the habit eventually because I was getting more and more uncomfortable. Then at some point, I flipped a switch. I would still talk to strangers, but it would be with a compliment about themselves. It’s easy to find something good to say to someone. If I admired their hair style, it’s color, their outfit, or the way they spoke, I complimented them. I discovered early never to compliment a man though. They seemed to take it in a wrong way.

I dropped this practice all together at some point. People seemed to not want to speak to strangers. I kept the thoughts in my head. On Thursday, I was standing, waiting for an x-ray on my ankle. This sweet family was also waiting. I felt the dad and mom were very concerned and stressed. Their energy was clear to me. The young boy, probably 9 or 10, was reading a book. A real, physical book. I had to restrain myself from telling him how awesome it was that he was reading as he was waiting. I’m not sure if I felt so strongly because I am a former teacher, because I love books, or because I felt he needed a distraction from whatever reason he was at the medical clinic. When they called his name the mom gently tussled his hair in a genuine act of love. My heart felt concern for him. I wondered if I should have said something.

I have multiple thoughts not just racing through my brain right now, but actually doing the Indy 500.  I need to do so many things to prepare for next week. The universe seems to keep adding to my to-do list. I’ve been working on Medicare stuff for hours and hours. I’ve been readying legal papers that must be signed Monday. I’ve prepped my bedroom for all the comforts I feel I might need, for when I return from the hospital. I’ve mailed off holiday presents to loved ones. I’ve purchased and wrapped all the Hanukkah gifts for my grandkids. I’ve decorated for a very low-key Hanukkah this year. I’ve finally let some friends know what is going on with me. (My loved ones already knew) I got the oil changed in my car because the get-it-done light came on. I trimmed back my pomegranate trees for the winter. I finally got the electric company out to remove my queen palm that was sparking when it touched the electric lines. That meant I had to reorganize my bowling ball garden. I was able to move up my annual eye exam, so I didn’t lose benefits for this year. (Sadly, I was informed cataracts are starting to develop.) I made comfort foods and froze them for when I come home. I made cookies and froze them. I went and got 7 or 8 inches cut off my hair, so I could take care of it more easily. I bought warm nightgowns for the hospital. Unfortunately, I had to have two plumbers out yesterday to fix a backed-up kitchen sink and clogged laundry room drain. I filled three large boxes of things to take to a thrift store. (I think they will stay in the garage for a month or so.) Today it is off to the hospital for preoperative paperwork and a Covid test. What I’d really like to do is get a pedicure. I wonder if they are open tomorrow. It is the only day without something scheduled.

I haven’t figured out if the universe is trying to knock me over or just keep my brain busy so I won’t dwell on the upcoming surgery. When I do take a breath, I often resort to tears. It doesn’t help that there seems to be umpteen commercials about cancer treatments on the TV. Yesterday, I received a letter from my insurance company stating that they have approved my hospital stay to remove cancer. I wasn’t sure if I should laugh or cry. Was the alternative to have my doctor do the surgery in the back of a van in the hospital parking lot. (Yeah, I know I have a crazy sense of humor.)

When loved ones call to talk to me, I am thrilled when/if they make me laugh. It is a welcome change from thoughts going on in my head. I get angry with myself if I start thinking the “why me” thoughts. Why not me? No one should anyone have to deal with this $hit.

Of course, with the cold temperatures my fibro is in a flare. 40s and 50s make me hurt terribly. I can barely lift my right arm. Brushing my teeth and combing my hair are challenges right now. My tailbone pain is escalating and I keep holding on to hope that once the surgery is over the tailbone pain will go away.

There are not twins living in my brain, there are octuplets.