I received my first chemo treatment of Carboplatin and Alimpta (Pemetrexed) and the trial drug-Demcizumab/placebo on November 3rd. When you get my brand of chemo, you sit in the infusion room on the 5th floor of the hospital and for 2.5 hours and they put different fluids into an IV that leads the fluid into your arm vein. Each bag of fluid takes 20-30 minutes and then you have to rest for 20-30 minutes before they begin the next round. Just imagine you went to get a mani or pedi at the local salon…chairs lined up, people all doing their own thing, looking at everyone, trying to figure out who is who, lots of noises, foreign languages you don’t understand,…that is almost the scene…accept they don’t offer you $5 pictures on your toes….”good price for you."
The infusion rooms are nice, clean, open rooms with 2-4 people sitting around getting some type of medicine and there are lots of nurses and other folks helping out. You can have one visitor to be with you and there are windows so you can look down on the busy streets of SF and just imagine what “normal” life must be like. The normal reflection is curious in that as a cancer patient you look normal, but on the inside you are not normal…as I sat in the chair trying to convince myself that I was normal, I was just reminded that regardless of how normal we think we look, what is going on in the inside is what really determines how you are doing.
I found myself reflecting on a time when I was just out of college and a bunch of us were sitting around talking about various things and other people. There was some fun being poked at one of our acquaintances, and one of my friends said to all of us, “if you guys knew his story, you would not be saying the things you are saying.” This struck me to the core, and I remember feeling that his words were so so so true….and I knew this, but I had let the conversation slip into the easiness of talking about other people in a non-productive way. I was mad at myself to have to continue learning a lesson I thought I had learned many years prior…but clearly had forgotten.
The first I remember learning this lesson was on my LDS Mission to Montana. The most fascinating part of the mission experience was learning the “story” behind all the unique people you met….it was honestly one of the most amazing experiences to have assumptions about someone and then to realize how wrong you were! As you can guess, I would make a game out of meeting new people, making some immediate assumptions (thin slicing as they say), and then trying to see if I was wrong or right…knowing me I probably kept my own batting average and had some quantitative way to make me feel like I was an all star…all from just talking to people at the post office or on the street…probably too much information about my wacky brain…but I have always enjoyed creating a little competition for myself if for no other reason to keep me entertained and to create my own experimental playground.
So while I sat in the chair with an IV in my right forearm, tons of hospital sounds beeping everywhere, latex gloves, masks, everyone in scrubs, people getting transfusions….and just wondering…”you know what…none of these people know me, and I don’t know any of them…but if I could learn their story it would be very entertaining and inspiring…even the people on the streets of SF….as normal as they looked who knows what is going on inside?"
One of the interesting parts of the day was when I sat in the chair to begin, I got word that the drugs I had been randomized to receive were expired. When you are on a clinical trial (at least mine) they put 3 sets of drugs that all look alike in 3 different numbered bags and then the computer spits out a number and that is the bag I get. Maybe you get the real stuff, maybe sugar water for the trial portion? Each bag has a different set of drugs and they are administered in a certain order.
Back to the expiration of drugs…thank goodness for the pharmacist who caught this little mistake. I was not privy to all of the conversation, but suffice it to say someone either lost their job and/or got some serious feedback.
Even though Johnathon was not supposed to tell us, we cajoled out of him the behind-the-scene story and he said they tried to blame it on him, and once they started the blame game…he went on the offensive and made sure they took accountability for the mistake. Dilbert would for sure make a great cartoon out of that scene! Expired drugs in a clinical trial is a bad thing!
The good news was they said, “you have a couple of hours to go kill and if the drugs don’t arrive by 3pm we will not be able to start”. To Johnathon this was not an option given all he had done to get us ready….and of course he is in our camp now….”these amazing people come all the way from Santa Cruz, do whatever it takes to have the right drugs here before 3pm!” Nice to have advocates…and I have not even told you about how advanced our relationship has moved with Johnathan.
So given we had a couple of hours we said, “let’s go walk around SF…as you know there are not too many cities as great as SF!”. Wouldn’t you know it, we found a killer lunch spot and an amazing massage parlor…what could we do...we had to eat and if you are about to start Chemo…a massage seemed like the perfect prep activity! We got this “couple” cabana and had a wonderful experience.
Once we got back to hospital (very relaxed and ready for whatever they wanted to do with us) we got started. It did not hurt that I had the nicest nurse on the floor in an area they call the cove which is around less people….so the overall experience was pretty good! They are watching you closely to see how you immediately react to the drugs and all went well….so nothing but a good sign!
It was a long day for sure, and we were excited to get home around 7pm, after arriving at UCSF at 8am.
The summary word of the week has been TIRED. I don’t ever recall being so lazy in my life and having little desire to do anything. I literally could sit on the couch and do nothing all day, no reading, no watching tv, just flat out veggin out….it was crazy…I kept thinking I was going to freak out by not doing anything but for some reason I just felt like a blob and it was perfectly ok to do nothing!
I tried to write this blog several times…but it was useless. Now that I am in day 8, I can feel some energy coming back and hence I am writing! The craziest part of the week has been my left calf muscle…killing me! I feel like I did 500 calf raises with 150 pounds on the bar bell! You know the feeling (roll out of bed and your legs can’t hold you up…you basically buckle to the ground) I am sure this will pass but for not working out, I am feeling like I just did a major crossfit calf workout!
It has been interesting to once again just appreciate the simple things in life-ability to breathe, ability to have a desire to get stuff done, watching someone run down the road, being able to sleep thru the night, being able to give someone a hug (they don’t want me touching anyone during chemo for fear I might pick up something they are carrying), going surfing with your son, being able to walk and not be weary, etc.
So what else has been fun this week…. Johnathan…well…we spent two days with him last week…and leave it to Jan…she has his entire life story down. I honestly don’t think anyone has been so interested in him for many years. His parents fled Germany and made it to the states, he was raised by his Jewish grandma and mother, worked to find a cure for Aides for 20 years, and then his mom died of lung cancer. 10 years ago he said they stopped research on Aides because the medicine today keeps you alive and it is no longer a death sentence. Since his mom died of lung cancer, he said he wanted to help find a cure…just like he did with Aides…so he has thrown himself into finding a cure and hence leads all the clinical trials related to lung cancer at UCSF.
I could tell he felt understood, loved, and appreciated by Jan. She did her thing and just wanted to know his story and be non judgmental in the process. As you know when people feel this genuine interest, they open themselves up and connection happens from both perspectives.
A friend sent me a really great quote today that has caused me to really ponder as I have been trying to come to grips with how amazing my community of friends are. I am honestly blown away at the love people have and the willingness of the human being to be concerned and thoughtful.
“Until we can receive with an open heart, we are never really giving with an open heart. When we attach judgment to receiving help, we knowingly or unknowingly attach judgment to giving help.”
I went back to UCSF yesterday and had my first follow up visit. All went well, and what I did learn was that my next chemo treatment will be a little more taxing on my body, the fatigue will last a little longer, and I am going to get really funny! So stay tuned for that…we will see what the fingers have to say when I start typing.
Thanks so much for all your love, support, prayers, faith, chants, good vibes, meditations, etc…I feel very powerful knowing that there are so many people rooting for me…everyone of you continues to touch my life in a unique and wonderful way….never stop sharing your thoughts, concerns, feelings, ideas, hopes, etc….I really appreciate all of it.
Fight on Warriors!!
If you want a Team Maddog bracelet (they are really cool) let Mary Partin (831-818-4106) know via text. Send her your address and she will make sure you get one or she will point you to someone who may have some in your area. You could also let me know and I will make sure you get one!
How is the MadVember Challenge going…I hope you are moving and grooving and making it the best month ever...who needs a razor!!