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.

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One Liner Wednesday

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Looking For The Good Things Among The Bad

I am trying my best to not be overwhelmed by the things I have no control over. There are people I love dealing with situations that make me cry. I can’t do anything to help, but pray. So that’s what I’m doing. I have my own issues to deal with.                 

I’m grateful for the wonderful success of my chemotherapy treatments. That being said, I am unexpectedly having a strange psychological reaction to taking the pills. I’ve been sitting with my feelings trying to sort them out. I know the pills are necessary to continue fighting the cancer. I also know that I am finally feeling better every day. Taking the medication means I am going to feel bad again. It means I am walking away from feeling better. It’s a difficult thing to do to yourself.   

I resisted taking them for the first day. Now, each time I take them I need to tell myself they are necessary for me to live. Meanwhile, I wait to see how bad it is going to get. I tell myself. I might just be tired. Then, I remember the long discussion with the pharmacist. I certainly don’t want the plethora of possible ailments that could happen.

On the positive side, my daughter and grandkids came over for my birthday. I mentioned to my daughter that I need to take the pills precisely 12 hours apart. My granddaughter piped in, saying that I should use the alarm on my phone. It was a great idea. Instead of dreading the thought of taking the pills, I just wait for the alarm to go off and pop them in my mouth. It has helped me with less time dreading the thought of taking them. I am still apprehensive, but I’m doing it.

My daughter and the kids were wearing t-shirts of support. She brought my spouse and me T-shirts too. We all wore them for a group picture. 

I know this is all hard for my family. It’s good to see them acting like kids without all the drama. Z² will be graduating from high school this week. She is graduating a year early. On Friday her mom is throwing a small BBQ celebration for her. I am hoping I will continue to feel well enough to go. Maybe that is one of the reasons why I didn’t to start my medication. I was feeling good before I started the new meds.

I had a wonderful birthday outing with my cousin. We went to a horse wellness experience. It was a long drive, but such a wonderful time. We began with some guided meditation. Then we picked a horse card and discussed what we thought it meant. The majority of the time was spent with the horses. It was wonderful. I am grateful to my cousin for taking me.

I am grateful for the wonderful people who check in with me with texts, cards, calls, messages, etc. I know I am not alone in this journey. I felt loved and cared about on my birthday. I’d like many more revolutions around the sun in my future. My job now is to do what I can to stay healthy and happy.

 

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.” 

 

My Oncology Appointment Results

My appointment went well on Wednesday. Traffic was very light and we made the trip in record time. We decided to have lunch after my appointment instead of before it. Maybe that’s why the traffic was light.

I had my blood drawn through my port. I was thrilled to know that the next step was not a six hour infusion. We walked back to the exam room where I had my vitals taken. The sweet nurse informed us that she printed out my questions for the doctor to refer to during my visit. She is a wonderful caring nurse who works for a wonderful caring doctor. I am grateful for being under their care.

Not all of my questions made it to the patient portal. There was a limited amount of space. I hoped to remember the missing questions. I did not. I was on information overload. We spoke for about n hour. 

My follow-up care plan will begin in a couple of weeks. I will be taking a parp inhibitor for at least two years. My spouse asked her to spell it so we could look it up later. The med will be sent to my house as it is a very specific medication not located in standard pharmacies.  “In cancer treatment, blocking PARP may help keep cancer cells from repairing their damaged DNA, causing them to die. PARP inhibitors are a type of targeted therapy.”

I will need monthly blood draws to see how the medication is working in my body. I will report back with any symptoms from the new med. My port will be flushed before each draw. For now, there is no reason to remove the port. It serves a good purpose. Next month, I will have a scan to see the difference between before and after chemotherapy. Phase two of my recovery has it’s own special requirements. 

We discussed the side effects I am still experiencing from my chemo. The worst is the neuropathy. Sadly, it is getting worse and not better. More than half of each foot is numb. Occasionally, I feel pins and needles also. My fingertips are also numb. I need to use cups with a handle so I don’t accidentally drop more cups. The neuropathy will take a long time to recover from, IF, I do recover. Her recommendations were to get acupuncture, move my toes repeatedly, and keep my feet covered. She approved of my continuing my water therapy. I went this morning, and it felt great.

I told her about my visit to the pain management doctor. He recommended a medication that I remembered I had had a bad reaction to when first diagnosed with fibromyalgia. She suggested I not take it. The pain management doctor also told me about a neuropathy treatment that has worked for diabetes patients. Evidently, it has also worked for chemo patients. But so far, is not considered protocol for use with cancer patients. We shall see if that will be a part of my treatment.

I am also extremely tired much of the time. My doctor’s explanation was very clear, and also a little disheartening. My body had no time to recover from my cancer surgery before I started chemotherapy. I was in a constant state of fatigue. As she explained, I should expect a month of recovery for each month of chemotherapy. That means at least five months for that part. The side effect of the new medication is, you guessed it, fatigue. It looks like I will be having at least a year of being tired. Knowing that, makes me able to give myself grace when I am tired.

She said I am not immunocompromised from my chemo any longer. I am because of my asthma and COPD though.  I told her I have no problem continuing to wear a mask in public for as long as needed. She said I should avoid crowds, especially indoors. She also told me that if I contract Covid, I should call her office ASAP. She will prescribe the Covid medication right away. I asked if I should get the new Covid  booster shot. She did recommend that I do so. 

To be as healthy as possible my doctor recommended I follow a Mediterranean diet. Foods are beginning to taste more normal now. For awhile, sweets were the only thing that tasted right. I had to limit my intake, because it upset my stomach so much. My goal is to increase my fruit intake. I will do my best to keep moving as she directed. I have a habit of overdoing things when I feel OK. I am trying to move every day, but limit my activity and then rest when I need to.  The OTC supplements I take did not make it to the list. I will ask about them on the patient portal before starting them again. 

I did not ask about when my hair will be growing back. I have a feeling that like most of my questions, it all depends on my body. I looked on line and each post had a different answer. So whenever it happens, it happens. 

My new driver’s license has me with no hair. I am embracing my chemo bald head.