It’s been a lot lately
To be honest, the last week has been especially tough for me. I had a great week last week leading up to my 5th round of chemo but I have been in a funk (for lack of a better word) and I can’t quite figure out why - besides fighting death and all of that. I’ve been super emotional and weepy and anxious about everything and far less optimistic as I usually pretend to be. Maybe it is the residual effects of the meeting with my oncologist last week and the realization that I still have so long to go before I can start to heal from this torture I’m in. Since my diagnosis I had been thinking I would be done with treatment by Christmas and that I would be able to start the new year with a clean bill of health and now I know that won’t be the case. I’m just so ready to be done with this. Oh and there’s also the massive underlying fear that all of this is only prolonging my life for a few more years and then I’ll be right back where I am now with returned cancer and more chemo - I was only given 60% cure rate for 5 years, so even if I get rid of all of it now it can easily come back every 5 years. I feel myself forcing happy memories with my family always thinking in the back of my head that this could be the last date night, family adventure, movie night, anniversary, holiday season. I know these thoughts don’t help, but it’s a dark place to have to face your own mortality before the ago of 40.
So now that I’ve gotten that off my chest, I’ll go back to the fun memories I got to make last week.
On Thursday, my mom and I drove up to Beverly Hills to the wig shop where I got my fabulous hair - The Wig Fairy. Since we bought the wig back when salons were shutdown, my only interaction with the store owner, Mona, was on a virtual consultation and then a few texts back and forth with pictures of me with hair and some ambitious Pinterest styling goal photos. She was able to match my old hair color (dark roots and all) and pull off a fabulous wig that was exactly what I wanted. But after a few months of the long hair, I felt I was ready for a trim and fresh style now that the salon is open to private appointments. Mona was amazing and immediately got to cutting and styling with the wig on my head and everything. My mom captured the event beautifully and was so impressed with how it just looked like I was at a regular salon getting my hair done. I know I mention it a lot, but that feeling of normalcy when nothing about your life feels normal, is such a necessary feeling. I highly recommend this shop to anyone who is going through treatment or dealing with hair loss or wants an amazing wig to change up a look (think Moira Rose). After the salon, my mom and I went to The Ivy for lunch - you know, since we were already in LA. It was an amazing lunch with even better people watching. Plus we both found our new favorite cake! It really was a fabulous day and not something my mom and I had the chance to do often pre-cancer so I’m glad we have this time now to spend with each other.
Saturday morning my sister Sam and niece Riley stopped by after their spin class and brought us breakfast groceries from Whole Foods. It was great to get to visit with them while I was still feeling good - those few days a cycle where I can be social and happy.
Sunday was Eric and my 12th anniversary which just happened to fall on our regular pre-chemo date night. We always love celebrating our anniversary but of course this year it holds more significance as we really test that “in sickness and health” vow. For this one, we headed back up to LA to have dinner at Spago. We hadn’t ever been to this Spago location so we were really excited for an extra fancy dinner. We have been to the Spago in Maui when we were there on our honeymoon in 2008 and then to the Spago in Las Vegas for our 2nd anniversary in 2010. We arrived early and were able to walk around Rodeo Drive and get some fancy window shopping in too. Dinner was decadent and indulgent but so fun. I look forward to returning when I can have 2 or 10 gin cocktails! I always think I want to have long deep conversations with Eric on our date nights about life and the kids and where to go from here and what ifs, but then when I’m in the moment, all I want is a romantic date night of staring into that bearded man’s eyes and eat chocolate soufflé. So that’s what we did.
The next morning we woke up early and got ready to go back to Kaiser Anaheim to start round 5. It’s always a quiet morning getting ready to go back and always a sad car ride and teary goodbye in the car as Eric drops me off knowing it will be a week before we’ll share a bed or have a restful nights sleep. I know he misses me in bed but I know he wouldn’t be able to sleep at all with me in there like this. He’s the only one working in our house right now and has to get up at 4:30 for work so I just try to stay out of the way as much as possible.
So now it’s Wednesday night and I’m a little more than half way through round 5 and so far it hasn’t been great. Monday night my pump detected air in the line and shut itself off at 6pm, 10pm, and 11am. Each time I managed to take everything apart and lay out the line to get the bubbles out and wait for the air to go away before it would allow me to restart it. This has taken me anywhere from 15 to 45 minutes to accomplish. By the time I went to my appointment on Tuesday, I was already an hour behind schedule due to the air delays. They sped up the pump and again assured me that bubbles shouldn’t be happening with the pump and nobody else is having this issue. I’m on my 3rd pump and I still can’t decide if it is a pump sensitivity issue or a pharmacist error with letting bubbles in the bag. Either way, I know there’s not much more I can do other than ask that the pharmacist is extra careful when filling my bag (oh and continue to try to sneak a peek at the code to override the air issue on the pump so I can just restart it myself). Tuesday night the pump stopped at midnight and again at 4am. It’s like I’m waking up with a newborn again and I know I decided against going through that again a long time ago. With those added delays, I was several hours behind schedule when I got to my appointment at the infusion center on Wednesday. They sped up the pump when I arrived but even at full speed, I still had to spend 2 hours there to drain the rest of my 2nd Red Devil for this round. It’s such a vicious cycle and nothing anyone can do to correct it once we get behind. This means that if I have a few air bubbles and delays tonight that I’ll be in the chemo ward tomorrow for 3 hours and then Friday for 4 hours. It gets harder as the week goes on and by Friday I’m so emotionally and physically drained that I usually end up crying out of frustration. I hope the nurses don’t think I’m a big baby - I promise I’m doing my best. Other than the pump issues, I’m just back to the same old chemo week side effects - nausea, lethargy, headaches, metallic sour taste, teary eyes, chills, night sweats, brittle nails, chemo brain, dry skin, anxiety, and fear. The usual.
I can already tell this is going to be a continuous struggle with my mental health and coping ability to see the big picture and realize I can’t control this situation but I must push through anyway. Cancer, international pandemic, home schooling, presidential campaign season - I’m not sure how much more I can handle. It’s a lot. For a lot of us. Thank goodness for my amazing family and my super supportive friends (who are not at all bothering me with “how are you doing” texts even if I don’t get around to responding for a few days). I love hearing from all of you and getting to think of something other than myself for a minute or two. Please keep pushing me to look forward to the future. Daydreaming about the vacations we’ll take together after all of this is really helping me have something positive to focus on. I still continue to get so many cards and letters and social media messages and gifts from you and I’m just so thankful for all of you. I hope someday to get to repay the kindness or maybe even send out a thank you card one of these days. I was hoping to spend quarantine learning to make bread or tie dye shirts, but alas I’m spending it learning a lot of medical jargon and taking lots of naps. Oh well, there’s always next year.
