It is almost two years since this health adventure began, which seems long ago and yet feels like yesterday. This year has been filled with memories on anniversary dates of the things that I have experienced. Today being a very important one. Last year on this date my doctor called to give me the results of the PET scan and the news was great, I was in remission!!! So this anniversary is meaningful as the first year is an important one to get through.
So thankful for sparkle shields!!! ✨✨✨
I still believe in the power of sparkles! I think I always will. It may be silly to some and seem like I am covering up how I truly feel. To each their own. Since I still have a scar tissue mass in my chest that I feel every day, I continue to visualize it encased in sparkles to keep it contained. Whatever it takes to put my mind at ease.
Now to get on with life! To find the answer to the nagging question in my head…what do I want to be when I grow up? That is a tough question. Since the socially acceptable norms have never added joy to my life this may be interesting and take Vodka and I to new places. We will see what I discover that appeals to the new normal me. 😉
Still sparkling…one day at a time 😃
For weeks, even months I have been thinking about writing a post about the things I did during the rest of my stay in Italy. Yet I have not felt like talking. Unusual for me since I am quite a chatty gal. There have been too many distractions in my mind for me to focus. At this moment I have lists all over the table and am starting to get my head straight about life and what to do with myself. I will get around to writing posts about my Italian adventure soon.
Since returning to Canada a few weeks ago I have had another follow-up, this time with my original hematologist. It’s nice to have her back. I was thrilled the day I had my blood taken, sounds silly, but the nurse was skilled and successful on the first try. I could even hear the blood gush into the tube! Woohoo! Gross but made me very happy! She is my favourite nurse!!! Always a relief to learn that my blood is normal and that the doctor is happy with how I am doing overall. 😃 I am almost at the one year mark and this is important. The first year is the most likely period for recurrence. There is that word, this is part of what has been distracting me for some time.
Recurrence. As time passes and I get closer to a full year beyond treatment I struggle with this word. I chose to keep to myself and not get involved with support groups and such during my treatment period. Yet I did know of a few others at different stages of treatment at the same time and this is what has become difficult for me. Over the last six months or so I have learned of three people who have experienced recurrence. I imagine that it is a cancer survivor’s greatest fear, and for as much as one tries to be positive, live in the moment and move on with life. This word presents a reality that others just cannot understand. To learn that one person had passed away last month, another is in palliative care and one in treatment again is difficult to process. Here I am just back from a few months rest in Europe and trying to decide what to do with my life, while my mind feels numb. Moving forward feels difficult when someone I haven’t met yet feel I know because our stories were shared between us via a mutual friend, we were each others cheerleaders, is near the end of his life. It’s hard to hear that someone who handled their illness and treatment will such grace has had to face it again so soon. I cannot put my feelings into words right now. 😔
Another distraction is my hand and wrist pain which continues. I have agreed to take the prescription the hematologist has recommended. The first day was comical, I was pretty much stoned from one pill! ha! and I felt nauseated and my face was tingling! Thankfully the yucky feeling only lasted a few days. It’s been almost two weeks and I am not noticing much relief yet, I do remain hopeful. I saw a neurologist last week, he had no answers. My case is odd. So I have been referred to a physiatrist. Now to wait for an appointment with him. Thankfully I have free time and can be on a cancellation list rather than wait 6 months for an appointment.
I am now experiencing the entangled feelings of fear, frustration and what on earth are my transferable skills!? in looking for some way to earn an income and move forward in life. Preparing for a job search is a process that I am sure no one is fond of. It is enough to drive one crazy! I know because I was already half way there! 😜
In the meantime I am trying to replenish my sparkle levels and see the bright side in things and not get too wound up about them. I am still adjusting to the new normal that is my life. My body is stiff and makes weird crackling noises when I move. My hair is a daily adventure that takes way too much of my energy. This new-found fear of certain words is a tough one, trying not to let them get the best of me. After all they are just words.
I sparkle on…one day at a time. 😊
For some time now I have been feeling like I am walking an emotional tightrope and am one step away from falling off into emotional darkness.
Living in constant pain is a struggle. Each day I talk myself into being jolly and moving forward. So I work to keep my balance on the tightrope since the darkness below looks cold and unwelcoming. My preference is to stay on the bright side where the sparkles are yet the darkness keeps pulling at me.
Today I feel like I slipped on the tightrope and am now tangled up in it. I went for the CT scan of my neck to see if there is a connection to the pain in my wrists and found out it was to be a scan with contrast, which meant another IV needle. Immediately my heart sank even though I tried to be brave. I explained to the nurse what I have been through and how my veins are not happy to be poked and to please not jiggle the needle around if it doesn’t take. He understood and tried his best but the IV didn’t work. I immediately began to cry, which totally surprised me, and said to him ‘please don’t try again, can we do the scan without contrast. Now that I am worked up the IV won’t work.’ So he spoke to the radiologist and we did the scan without contrast. Hopefully the doctors will be able to see what they need to see.
I am still in a pretty sad mood after this and can’t help feeling that I can’t do this anymore. I am so tired of appointments and needles. 😦
It is definitely time for time away to build up my mental and emotional strength. I need to build up some sparkle to get me through.
I sparkle on…one day at a time. 🙂
Happy to say that I have passed another follow up with flying sparkles! Well for the most part. I am still having issues with my hands and wrists. To the point that I have stopped working because the pain is with me 24/7 making everything in life quite difficult. The doctor has ordered some additional tests and referral to a neurologist to examine the issue further. Side effects are miserable and these are not the only ones I am experiencing…
Strange as it may seem, there is something called treatment induced menopause. I had been told about this in the beginning of treatment and kinda giggled at the idea. Well now that I am officially in this state I am not giggling so much. Instead I am wondering if this unnatural push into a new physical state is playing a role in the misery of my hands and wrists. With my greater concerns about this being related to bone density loss and increase of heart issues. Time will tell. Just another odd event in this health adventure that one would never have anticipated.
Over the last few months my hair has been growing. This is a good thing. Most people ask if I will grow it out and I get caught up in the idea and say yes!! I had thought this was a good idea until my hair reached about 2 inches in length, making it a fluff ball and looking like Blanche from the Golden Girls! The texture of new chemo curl hair is course and somewhat dry with a mind of its own. At this time my hair is super thick, I think even more so than it was before which is seriously thick! So I bought some wide headbands and was convinced I would grow it. After a lot of bitching and complaining about my hair and one day of wearing a headband followed by sincere apologies to my follicles that were cursing me, I booked an appointment to cut my hair super short! After the cut I was once again happy and came to the realization that I am the most miserable I have been through this whole experience because of my hair!! It’s now four weeks later and Blanche is emerging again…cutting it off tomorrow before I start bitching again! Sad but true!
At my follow up appointment yesterday I shared my hair and misery realization with my doctor. She and I had a laugh about this since I have been a pretty relaxed and calm patient overall. I was relieved to learn that my hair is currently in an abnormal growth process, since it all grew in at once and none falls out! Over time the growth pattern will continue to change, perhaps in good and bad ways, and hopefully normalize. Learning this is a tremendous relief. Now I am happy to keep my hair super short and maybe even shave it again over the next few years! After all I have more important concerns with my body and state of health than my hair.
Only a few sleeps until I depart for a nice long rest period in Europe. I am looking forward to visiting friends and relaxing. A change of scenery in my favourite places to rejuvenate my soul and enhance my healing is just what the doctor ordered. Adventures here I come!!
I sparkle on…one day at a time. 🙂