At times I find myself thinking about death and dying. I’m pretty sure it comes with the cancer diagnosis. I try hard not to stay here for long periods of time. I have been trying hard to enjoy each day I am given as a gift to remember to stay in the present moment and live it to the fullest extent. I don’t know the future. My gut tells me to enjoy life and my friends and family as much as I can now because tomorrow is not promised. It is my gut feeling that I have been having since I was diagnosed. There have been a few reinforcers since then. Telling those around you that you are thinking of death and dying though goes over over like a lead balloon. The questions start pouring out like the third Inquisition They forget all the stats on CVID and cancer let alone Bipolar Disorder. There are very very few people around in life who are able to handle a discussion with you about life and death without freaking out and losing their poop so to speak, especially those who are closest to you. Though I am not a religious person of sorts due events in my life I am a person who has a deep faith. This conversation or conversations may come down to meeting with a pastor to to relieve some of the things I have been trying to process individually with great difficulty. No one ever said that having a terminal illness would be easy I just watch to make memories happen while I am able to. If you have ever had a chronic illness, there is not a day that goes by that isn’t impacted by it. It is a matter of how much you allow it to impact your life that matters. How much does your mental or physical health diagnosis impact your life? How do you decide?
My eyes are leaking (crying) and my brain is saying “ENOUGH.” I want a break from February and how it’s gone so far already…surgeries, complications to those surgeries, car problems, being away from home and Al temporarily, being at the hospital more than I can stand, and feeling confused and alone than I have in a while.
I find myself turning to old coping skills to get through long days that others.dont really understand like using my phone to play games to dissociate with to escape the pain, triggers,and all the medical stuff coming at me day in and day out. I’ve lost 7 pounds in less than 2 weeks. Stress and food are old allies in my history. It’s a slippery slope right back into old habits. Right now a path that could be more dangerous than usual. I find myself wanting things to return to precancer moments. I don’t want to stay stuck in this space because I don’t believe in feeling sorry for myself or getting pity from others. I do desire to make the most out of each day and I wasn’t able to do that on my own the last few days with doctor appointments, tests, hospitalization, car problems, etc. Add a dose of feeling alone in the mix and I plummeted to the places that I didn’t want to go.
The saddest thing is that today I pushed people away and hurt people who love me before I could be hurt 💔 Sigh. I want a shower and clean clothes and my sister right now
I have 9 hours before the tests start again which means getting up and ready to go even earlier. Praying I can restore my attitude by then. Thanks for listening.
Three days after my surgery, was my 50th birthday. It fell on a Friday and we had plans for Friday, Saturday, and Sunday get together with family and friends. Add in a dose of much needed IViG and it was a happening weekend. We got to see Jim Brickman in concert which I enjoyed a lot. I missed a funeral due to needing an IViG treatment badly but had no choice. It was a must after surgery.
I felt down by my birthday. In a world we live on social media, I miss plain old phone calls, surprises from my family at work etc. I felt like it was a big deal to me that I made it to 50 this year. However, all my friends wanted to celebrate individually and I just didn’t have the energy for it. I feel bad for feeling disappointed. I never thought that I would make it to 50. I have been so suicidal at times and then came cancer. Is it wrong to want to celebrate living while I can? I guess other people don’t understand that or don’t want to. It makes it an awfully lonely place to be. Sigh.
Having cancer sucks. Wanting to live the most each day possible becomes mantra because you never know when things will come to a screeching halt. I guess its my fault for having such ecclectic friends. Asking them to put themselves in a room together is not easy even if it is for me. I am not a narcissist. I am afraid I will die alone of this lymphoma thing because no one was able to be there at the right time. I just want to spend my time left with loved ones building forever memories. I want to laugh until I have tears running down my cheeks. I want pics, memorabilia, etc.
Am I silly? I feel like I am right now. I don’t talk about how bad the cancer is because I have had one person not believe me even, etc. That was offensive more than anything. I felt very angry afterwards.
The hardest group of people to get this across too is my family and few close friends
Oh well. We cannot control everything. Despite our measly attempts to try.
So much going on and so little time to write. 2/4 I received a call from the doctor that they wanted to move my surgery up…to that day. I had a lump removed from just above the knee joint that was making it terribly painful to move and cope with on an increasing basis. So at 8:00, I was rethinking my whole week and how to tell my boss I was having surgery at 3:30 that day without announcing it in our staff meeting which I ended up doing anyways that morning. I managed to watch most of the surgery… I was given the choice to and decided to watch the stupid painmaker say their final goodbyes. The path report was so so. Carcinoma wrapped around scar tissue. I went on 2/15 to get the stitches out but it hadn’t healed shut yet. We’re watching for infection now as the pain has taken a sudden increase again. I attempted (very poorly) to use crutches the first couple of days but it made me so sore upper body wise I quickly she’d them for a cane. Mostly I am limping along now at a pretty good pace. The cane is there when I need it. Thank God for pain meds for when my work day is over. For those who wonder how crazy I am… I went to the pharmacy first thing the day after my surgery to get gauze and bandages and ointment for the wound…instead of telling the pharmacy tech to have a nice day, I told her to have a nice trip…woops. I asked my friend for a ride that day to and from work but still managed to attend a mandatory training for our team. Thursday was harder. Seeing clients on crutches while attempting to carry your work brief case was an insane task! Thank God I had Friday off because I worked Wednesday!!! I was about dead on a doornail but had a full weekend planned with lots of celebrations.
We have survived the polar freeze here this past week with five days of work called off due to weather. Poor Al ( my dog whose nickname is Alcoholic because he can’t hold his licker) even got three new outfits and a set of snow boots to cope with the -40 degree windshield. He looked pretty hilarious in his multiple layers to go outside to do his duties. He wasn’t to sure about putting on his boots though. We have some pretty funny videos of him learning how to get used to them.
Today was the first day we had work since last Thursday but I had medical tests today to investigate two new lumps in my abdomen. I am praying that the tests results come back soon waiting is never easy. The results will determine what type of treatment I do next. Having cancer is scary at times. This has been one of those times. I never know quite what to say to others while waiting for test results so I usually don’t mention anything until I know something. I have been waiting to have a growth removed from my leg. Surgery is set for March. The pain though is growing exponentially and I am on a cancellation list. We may have to switch specialists in order to get it done sooner.
This week while attempting to juggle things and maintain my nonschedule of shoveling, snowblowing and warming up I completely missed morning meds every morning. That means missing my mood stabilizer and amtidepressant as well as medical meds. Knowing and doing are sometimes two entitely different things. So hopefully one day I will learn not to miss any medications.
As a social worker in the field of mental health for almost thirty years, I have had it drilled into me to leave my issues at the door when I arrive for work each morning. Having mental health issues myself over time has made this a difficult enough thing to work with. But now that I have lymphoma it has become a constant struggle on days that the pain is unrelenting or I just am exhausted or not feeling well. It is so much harder to drop myself at the door and not allow clients into my personal life even though they may eventually see it for themselves if I lose more hair, etc.
I know some of my clients couldn’t handle knowing and some could but I really struggle to say I am okay to them when I haven’t been recently. Ethics can be such a complicated thing. So for now I go on pretending to be okay for their sake.
I’m still waiting on prior auths with my new insurance. It seems like it is taking forever. I just want a status report on the lymphoma and to know where we are heading from here treatment wise. it could change a lot of things quickly.
Hope you all are well.
Sometimes it seems when you have chronic illnesses there is nothing worse than having to switch insurance companies in the middle of treatment. Right now I am in a waiting game because I have new insurance and can’t get the treatment that I need because new authorizations aren’t in place yet with the new insurance company.
During the last few days of my old insurance coverage, they denied auths for scans that would have told me where I was at in terms of my lymphoma. Friday I will finally be able to have my first scan to see if the radiation has helped or it continues to spread and more aggressive treatment is needed. I’m pretty sure of the answer as I have already found a new lump on my abdomen. Sometimes this stuff scares the crap out of me. I just want to be pain free for awhile and not find any more growths.