Day 15

I did not anticipate such a successful first two weeks of treatment. On the eve before my first round, a neighbor who works as an oncology nurse at the cancer center I did not choose, came over with a detailed handwritten note (and lemon bars) highlighting all the important details about chemo to help me feel confident going in to my first experience. I had met the woman once by happenstance, standing in line for ramen at a food cart, and now I have every phone number that she could ever be reached at and gave me permission to call 24/7. How cool is that?! After chatting with her in my backyard, I felt like I could conquer anything. And she was right, my first two weeks of treatment went really well. For the first week after my first chemo infusion, my main side effect observations (I didn’t complain) were shakey jittery body, general aches in my legs and body (felt like growing pains), lightheaded dizziness, feeling shivery and cold (no fever) in our house but our ac is blasting so?, constipation- TMI? I can give you a recipe that swings that pendulum in the other direction... it’s a slippery slope. The positive side effect observations were an unexpected surprise and impacted me more than any of the expected negative side effects. The doctors all mentioned how much better I would feel after starting chemo and I just thought that sounded crazy because of the toxicity and descriptions of terrible side effects. How could it make me feel better?! But right away I noticed the swelling in my neck is gone, I can turn my head side to side, and best of all I am able to swallow and eat again. And boy have I been eating! Gluttony, how I have missed you. The nurses were happy to see I put on a pound yesterday. Basically for the first week, I gave myself permission to nap when I felt like it, step away from trying to be present in every second with the kids, and allowed myself to sit while watching all the daily tasks fall on willing Kaveh and my Mom (and several thoughtful friends!) I was able to go for walks and get outside a lot and that really helped keep my mental state clear and body strong. My brother and his family came and stayed the weekend with us in our home and it felt awesome to be able to do that. And let’s talk about science. Thank god for the nerds who’ve discovered all the advances in medicine!! I took anti nausea pills for the first four days as regimented by the pharmacist and didn’t have to dip into my three “as needed” anti nausea prescriptions at any point over the course of two weeks. For the second week I felt more like myself, although I’m forgetting what it feels like to actually be “normal.” We spontaneously took a road trip down to visit my dad in Sacramento. It was so nice to get away and do normal life things. It was comforting for me to have my friends and family in California be able to see firsthand how strong (and healthy?) I still am. Dad, I got this, stop worrying. 

Me, with Kaveh, Roya, Kasra, and my nephews Murray and Keaton. This was my first real outing with a shaved head. I felt very self conscious.

Me, living my best life at my dad’s house in CA. 

An added bonus, while we were away in CA my mom got some approved unpaid time off and was relieved from her substitute mothering/nurse/maid duties for a few days. She needs that time to refresh. I’m sure she is emotionally and physically drained. We returned from CA on Friday and I spent two days with the kids at my moms house while Kaveh, our next door neighbor, and my moms husband built a new deck and put in a sliding glass door. No home improvement job ever goes as planned and these guys are working tirelessly as a team to make sure the project eventually gets done. Also, our air conditioner went out while we were out of town and our neighbor took a quick look at it and he was able to acquire the part through a wholesaler friend for $6.50 and fix it himself. WHHHAAT?! It takes a village and we are so very grateful for ours. 

That damn sliding door. Whose idea was that?? Still very much a work in progress. 😳

Yesterday was treatment day 15. I love the idea of having different people support me during my time in the treatment chair. I view it as a significant time in my life, and I’d like to share my experience with the people who support and love me the most. Yesterday my mom sat at my side. I can’t help but recognize that it must be pretty emotional as a mother to watch your daughter go through something like this. As a mother, you always want to do something to take the pain away from your child, and in this case, it just can’t be done. So thank you for sitting by my side and watching as I take the medicine that will shrink this cancer away. 

I had another amazing oncology nurse this round, Heather. In all my Providence experiences, I have yet to meet a bad nurse. What an amazingly fulfilling and hard job. I was so wrapped up in getting out the door to face round two, that I forgot to apply my prescription numbing cream on my port prior to the appointment. So the insertion of the IV into my port was a little more painful, but nothing terrible and after the catheter was in, I didn’t feel any pain.  She drew my blood, I actually didn’t even notice her do it, and sent us back to meet the doctor. We discussed my experience with round one while waiting for my blood results to come in. Everything looked great except my white blood cell (WBC) counts were super low. This is to be expected. They described it as your WBC’s drop super low and then they expect the new cells to start to re-grow and the counts will climb back up in a few days. I was surprised by this because I literally felt so fine! Just goes to show what a strong determined workhorse my body is!! The WBC number was so low that it was at the threshold where they question whether or not to hold off treatment for a couple days. But the doctor said with lymphoma they typically don’t get worked up over low WBC and proceeded with treatment. I just need to be vigilant about germs as I am at extreme risk for developing a bacterial infection. Hand washing, hand washing, hand washing! Yes, this means if I choose to go in public I need to wear a mask. The experience receiving the chemotherapy was the same as last time, two drip bags of pre-meds for anti nausea, followed with two drip bags and two syringes of chemo. Each bag/syringe takes about 30-60 minutes to empty. We were there from about 9am-2:30pm. A very long day that goes by rather fast because there is so much happening around me to observe. Lots of people far worse off than me, to which I hold gratitude and sadness all at the same time. Yet another dear neighbor who happens to be a Providence pharmacist, brought me and my mom yummy (low odor) bean and rice bowls for lunch and sat with me for a bit. She has been my go to for all things prescriptions. And of course offers her knowledge, expertise and connections without hesitation which allows me to feel confident about what I’m putting into my body. Again, my village is huge and my gratitude endless.

Me, in the chair, surrounded with little gifts from people. A book to pass time, jolly ranchers to mask the taste of the saline flushes and a nourishing lunch. 

At the end of the appointment, my oncologist, Dr. Godwin, stopped by to check on me. He does rounds in the hospital and cancer research on Monday’s so I haven’t got a chance to meet in office with him for a while. We quickly chatted about my progress and he mentioned how noticeable the decrease of swelling in my neck was. I asked if it was due to steroids or chemo and he thought both. Yay!

When I arrive home after chemo I feel like I’ve just accomplished something so huge. I get excited walking in the house to recount the hurdle I just jumped over. My adrenaline kicks in and I get a good short buzz. My kids are proud of me. My family is proud of me. I’m proud of me. Then I crash and head upstairs for a nap because I can and probably because I also need to. My kids are loved and well taken care of by my mom and Kaveh which makes giving myself permission to nap so easy. 

I am a day out of chemo and feel great! Kaveh took the kids down to his moms house in Salem this morning before he went to work. They will stay there until Thursday or Friday. My mother in law is another one of my biggest supporters and I often put myself in check with how blessed I am. She would literally drop anything to help. Talking care of our kids is a huge help. It allows my mom a break to focus on just tending to me. It allows Kaveh to work on his PSU coursework in the evening after he gets home from work.  It allows me to not feel guilty about blasting my trashy daytime/nighttime tv. It allows me to rest and recover so I can make it to the other side of cancer. Thank you.

My mood & appetite today are great. I can’t quite attest to my strength or energy because I haven’t really needed to get out of bed, but I’m awake and feel great. I have the exact same side effect notes as the first round. A little dizzy, achey, tired, but nothing worth complaining about. My hair doesn’t yet seem to be falling out, and now I’m questioning if it even will! Ha! Wouldn’t that be a good laugh.The boys (old guys?) are working hard at the sliding glass door project and I am listening to the nail gun with so much gratitude. Really!

It’ll be interesting to see what the next two weeks will bring. I’m on a rollercoaster that I have no control over and just need to take it one day at a time. Yesterday’s the past, tomorrow’s the future, but today is a gift. That’s why it’s called the present. Today is a good day.

2 treatments down, 10 or 14 to go. The amount of treatments will be determined after a mid way through PET scan. I’ve heard treatment 3,4,5 are the hardest so I carry anxiousness as we head into that on the 21st. 

I got this!!

Xoxo

J