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

Advertisement

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

location

 

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 – Anyway

Your prompt for Stream of Consciousness Saturday is “start your post or one paragraph with the word ‘anyway.’” Bonus points if you start your post with “anyway” and regular points if you use it in a paragraph somewhere else in your post. Enjoy!

Anyway you look at it, my life is a crazy roller coaster right now. I don’t know how to live this life. I haven’t read a book called, What the F##k do I do now? I don’t understand all the ramifications of what is going on in my body. I don’t know for sure if my prognosis is better or worse than I think it is. I don’t know if I need to do a countdown, or a count-up.

What I do know, is that I need to figure out the next step in my life. I’d like a laminated list of baby steps I can follow. I need to feel some sense of control, even if it is only quasi-real management.

Friday was a day of questions and answers. I spent very little time in my head wondering how this all happened and why. Friday was the first day I spent time alone. I was not worried about being alone. I know how to be safe. I am not playing games by stretching my limits. My spouse assured me that if I needed him, he would leave his class, take care of me, and return to finish his work. It made me feel good to not feel abandoned, if that makes any sense.

This week, my morning weekly call was moved from Thursday to Friday am. My friend texted to tell me she was up and available, if that worked for me. I was awake, as usual. Our call started at 5:30 am, my time. It is wonderful having a weekly catch-up call. I look forward to kibitzing with a friend as a great way to start my day. Every day, I get messages from my tribe. A heart emoji, a quick text, an email, a Facebook message, a comment on my blog, and a loving chat, all make feel unforgotten.  Isolating for my well-being is hard when I’d like to be held and just have a cry.

I had my Friday morning telemedical appointment with a PA that I did not know. I was ready with questions I needed answered. We discussed the numerous negative side effects I was experiencing from the narcotic. I was concerned that my anxiety med had to be stopped because of the same med. He researched my list of previous medications and offered to change my med to one that I had taken before without side effects. We discussed the fact that I had last taken a pill early that morning. He put in an RX for the new med and told me the entire effect of the old one would be out of my body by this morning. He double checked that my current meds would not interfere with the new one. I felt like my head was spinning with all the new information. I am pleased that he worked so hard to make my recovery less painful and less stressful. We discussed my daily movements. I told him about my very slow laps around the dining room table. He explained that he wanted more times getting up and moving and less length of time once upright. We discussed dome deep breathing while taking my steps. I am all for following that directive.

A kind retired, teacher friend, brought me lunch Friday. It was nice to see a friendly face outside of my little bubble. We stood far apart from each other, maintaining a safe distance. She shared the going’s on of our old campus. They have a new principal on board. She also shared that the district offered teachers an 11% pay raise. My old district has historically been one of the lowest paid districts in the area. A superintendent from many years ago made a rude comment that has stuck in all our throats. He would go to the bargaining committee and said he felt our district was so good, and so many people wanted to work there, that he did not have to have a good salary as an incentive. I am happy for my friends still working. They work hard and deserve a good salary.

She also told me that the district has a new salary for retired teachers who are willing to substitute. The regular salary for a sub has not changed in 20 years. Because the pay is so low, what ends up happening is that a warm body sits in the room on their phone, while the kids languish from no direct teaching. There is a severe shortage of any warm body in the room. The new plan is to pay retired teachers double what they pay non-retired teachers. I was not clear if the incentive has brought enough retired teachers to fill all the needed spots. My friend said she has no desire to sub since Covid. I sure can’t blame her.

After my short lunch visit, I attempted to nap. I feel like I am always attempting to nap. It feels like, as soon as I start to drift off, my phone rings. I answer all phone calls right now, instead of waiting for a message. There are so many people involved in my care, that I dare not let them go unanswered. A call came in from the medical oncologist’s office. She wanted to set up an appointment to discuss my chemo plans. The young woman was very comforting and eager to get help me get what I needed. The doctor is in the office attached to the hospital I went to, only two days a week. I asked where she was on the other days. Sadly, for me, she is at UCLA the other days, which is even a further a drive for us. I felt a smidge of accomplishment knowing I shall go next week to see what my future chemo plans look like. The unknown is worse than the known sometimes, but not always.

I am keeping very good track of what and when I am taking meds throughout the day. Yesterday, I only had one narcotic in the morning and the new one in the evening. I am using the RX Motrin less also. I am using more of the gummies than I’ve done before. My goal is to not allow my pain levels to get so bad, I am not making good judgement calls.

Last night I slept well. My med combo seemed to help a great deal. I did not use the belly brace at night, following what I had read on-line. I woke up, fed Annie, took a gummy, and went back to sleep. I slept for a couple of hours. When I woke up the second time, my spouse was gone. I knew he was going on a “great chicken hunt.” I called and spoke to him to see if he had any luck. Another Costco was out of chickens and told him, it would be five hours before they restocked the shelves. He decided to try Sprouts instead. I went back to sleep again and didn’t wake until noon. I haven’t slept that much in years. With the further spacing of my meds, I am OK sleeping for longer periods.

I am getting up and walking a few minutes every couple of hours. If I need to get up, I walk up the stairs and get some water as a way to encourage my need to get up. It’s a good cycle to be in. I rested most of the day today. I have no negative self-judgement about not getting anything done, expect laundry. Even that requires my spouse to transfer the wet heavy laundry to the dryer. My focus has to be on recovering from the surgery to prepare for the next steps that lay ahead.

I haven’t been able to go outside and play with Annie. It is too cold, and I am too unsure of myself just yet. She is contented snuggling up next to me as much as I can let her. Annie wants me to go outside with her every time I go up the stairs. I gently try and explain my dilemma to her.  Right now, I need to be nice to me. I need to eat good foods. I need to sleep as much as I can. I need to monitor my meds. I need to keep my brain focused on all that I am grateful for. I know I need to hold space for the next phase of this uncharted life.