Waiting for the results of my Pet Scan seemed like an eternity. When the day finally came, I was anxious but hopeful, but – anxious! My husband and I passed the time in the waiting room playing word games and solitaire on our ipads and discussing which shade of purple my doc would be wearing that day. He always wears purple shirts in every shade you can imagine. I like that about him because I, too, LOVE the color purple. It was my grandmother’s favorite color. I’ll never forget when she passed away my lovely grandmother was lying in her coffin wearing the most beautiful purple flowing lingerie robe. She would have loved it! Anyway, I digress, sorry. As the doctor walked in, I noticed he had on a deep purple plum colored shirt (cute) and a serious look on his face. He is always serious. But, then he smiled a little and said, “The Pet Scan came in clear, no sign of cancer.” My husband was thrilled. I felt relief in that moment, remission is awesome, but yet, I did not feel overly joyful. I peppered the doctor with all my questions about my coming 2 year maintenance regimen on Rituxan, and asked about my recovery going forward. He said not to expect to be feeling myself for another 6 months at least because the chemo has gravely injured my body and it has to heal. Not what I wanted to hear. I’m so impatient to be well again.
My port has been flipping over and I cannot flip it back myself. This has been going on for months and if it isn’t flipped correctly on infusion day, I can’t have my infusion. It’s a little painful to have it flipped and it just flips right back over by the next day anyway, which is so frustrating. I really like having the port, it is so convenient for the infusions. But, after discussing it with my doctor, I am going to have it removed permanently and just have my maintenance Rituxan infused through my veins. This is a concern (I have so many, right?) because my veins are always hard to find for the nurses and they usually have to do multiple sticks to make it work. (Big Sigh) My worries consume me sometimes. I’ve read too much about this disease, chatted with too many patients in the Follicular Lymphoma chat rooms. I may have won the first round with this disease, but it is only the first round, there will most probably be more to come, and the hard part is not knowing how long I will be in remission. It could be forever, or 2, 5, or 10 years who knows? It’s that fear of the unknown that catches me every time. I tend to project what “could” happen and start worrying about it ahead of time. I understand perfectly well that I should live for today, enjoy each moment, and wait until something happens to worry about it. I know that, and some days I’m good with it, but other days I’m so down. So, I’m praying and trying to live the Serenity Prayer each day. I cannot wish away this cancer and my body’s propensity for having it.
My outlook might be more hopeful if I were not still dealing with the after effects of Chemo. Just when I begin to hope for better days, that hope is fleeting. Maybe it’s me, maybe I’m trying too hard. When I feel the least amount of energy returning , I lose my mind and overdo. Like yesterday, it felt so good to be out and about doing errands that I stayed out and shopped most of the day and wore myself out. Last night and today I’m paying for it. Radiating pain in my legs kept me awake all night. I’m not sure whether it was neuropathy or dehydration causing it, but this morning, when I got out of bed, I could hardly walk. Mad as a hornet with this new development, I decided if I forced myself to walk at a fast clip, it might help my circulation and the pain would go away. It didn’t. It just exhausted me so much that the sofa became my best friend again. It’s that worry, that I may not have the energy that I used to have ever again, that disturbs me. What will my new normal be? I won’t know that for quite some time so I really do have to stop freaking out when my body needs to rest.
I’m in physical therapy, hoping to get my strength back so I can get back to playing pickleball. At least that will get me out of this house and with people who are all about having fun. I love being around happy, energetic people because it helps to invigorate me. You can’t help but catch those positive vibes when you are around them.
July 28, 2019
I’m happy to report that I’m feeling SO much better. There are more good days than bad days as long as I behave myself and don’t try to do too much. Well, I must admit, that part is a struggle. I get so much joy out of working in my garden, though it would be much more enjoyable if it were not so hot. Yet, even dealing with the heat cannot dampen my spirits when I see the aesthetic results that my weeding, pruning, and watering give to my lovely garden. My joy is magnified even more when I sit on the patio and watch the bees, butterflies, dragonflies, hummingbirds, and flying insects of all sorts, merrily flitting and flying around the yard, tasting the flowers and communing with one another.
I have been more in touch with God this past month. This journey has put me on a little roller-coaster of a faith ride. At times it’s been a battle to get to prayer, though my struggles eventually always bring me to Jesus’ feet where He consoles and comforts me. We never really have it “all” on our spiritual journey. We may, at times, think to ourselves, “Yes, I’m on the right path; I’m praying, listening, trusting, believing, surrendering to God’s will…” Then, life happens and our faith wavers and God may seem far away. But, He isn’t. God is always there. It is our changing circumstances, our struggles, our emotions, our fears that can cause an imagined disconnect. Thankfully, when this happens to me, the Holy Spirit persists in calling me back into communion with the Trinity. He prays for me when I cannot, He touches my heart with His love, even when I am unaware. The Father never stops reaching out with mercy, love, and comfort that is always available – all we have to do is turn toward it. When I can do that, when I lay my burdens down at our Lord’s feet, I feel a lightness of spirit and a sense of being loved that is indescribable.