September 5, 2021 - My chemo port was already installed.
It's been over a year since my diagnosis. When I was diagnosed with lupus in college, it was devastating. As the years passed and I remained relatively healthy, I went into a sort of denial that I had it, even though my bloodwork always confirmed that it was there. It was my "normal". Friends sometimes were shocked when they would find out that I had it. I just never thought to burden anyone with that knowledge. I was handling it and no one could tell.
Finding out that I would be going through chemo and that I would lose my hair made keeping it a secret impossible unless I just stayed at home for several years until my hair grew all the way back. And growing the beautiful hair I had before chemo took 7 years of tender loving care. I knew I wasn't going to be a hermit for 7 years, even though the thought of being a hermit now doesn't seem like such a bad idea.
Thomas on shave duty
Recovery from chemo has been a process. Oncologists have told me that it takes a year to recover and that the recovery would be like a jagged, uphill graph. I have days that I feel better, and then days that I feel fatigued and nauseated, and then I get better again. And that's how it has been for the last 8 months.
I have become a bit reclusive, even on social media. I post a few positive things I would like to share, otherwise, I do not scroll as much as I used to. I have been missing a lot of posts and I hope no one takes it personally. In real life, whenever I know I have an event outside of my home, I save up all my energy for it. I really want to spend time out with people I love and those I haven't seen in a long time. When I give it a shot, I have to gauge and plan for my energy level. I try really hard not to stack too many events in one day. One event, depending on how strenuous it is, how long the drive is, or how hot the weather might be, has the ability to drain me of energy. I remember one of my besties who was recovering from cancer, told me that she felt "fragile." Perhaps it's a natural, self-protective instinct to want to stay home and take it easy. Or it's the result of the psychological trauma of having cancer and going through treatment. Whatever it is, the longer I am away from home, the more I feel anxious or tired, or anxious I'm getting tired. It all gets exhausting.
The good news is that I finally found a wonderfully active Facebook support group for people with non-Hodgkin's Lymphoma. I totally forgot that I posted in another one right before I went into chemo. A few days ago, I finally got a response to it. When I double-checked the group, my post was the last post in it. So, I did another search and found a group that had several people posting daily. It's been so mentally relieving to read others' posts on what they are going through, and finding how much I relate.
Other than that, I have been upping my daily prayer game at home. I now have a loose schedule (and I mean that I don't give myself a hard time if I miss one) of Catholic prayers I do during the day; Morning Offering, the Angelus (6am, 12pm, 6pm), Liturgy of the Hours (Morning, Evening, Night), and a 54-day rosary novena that started on the Feast of the Assumption (August 15) and ends on the Feast of Our Lady of the Holy Rosary (October 7). What I love about these composed prayers is that all I need to do is show up and open my heart of intentions throughout the day. God provides everything else my soul needs through ancient prayers and scripture.
As for The Long Hair Quest? It definitely is still ON. The -do has got a slight wave to it right now, but it looks like the curl is getting weaker as it slowly grows. I am so happy the top of my head is no longer minty cold. Everyone says it's growing fast and that the shorter hair looks "badass" or that I can play an "assassin", things I guess wasn't so obvious I could do when I had long hair. It's been pretty interesting getting to pass through all these hairstyles that I probably would have never chosen for myself otherwise.
Last but not least, today is my hubby's birthday and words cannot express how grateful I am for him. I know it's not easy to be the strong one and the caregiver when I am going through it. He manages to never complain or make me feel like I am a burden. He's there when I need a shoulder to cry on, when I know and feel it's not rational to cry, I just need to. And even when I don't believe it myself, he looks at me like I'm beautiful. He is a healing gift of love for me in every way, the unsung hero in my journey back to health. And all I can do today is thank God for him and wish him the happiest birthday ever. Gift ideas, anyone?
