Went in for the second infusion today. Super easy once again - intake, blood test, meeting with Oncologist and then about a 5 minute wait to be given our room in Infusion Suite D. We chose an outer room with a window and sunlight pouring in. Here's a video from the end of the day at the Center.
Blood was great, all the cell counts had risen and were great numbers. The tumor is changing - it feels thinner, and not as swollen. Dr. Crew felt there was good movement for the first 3 weeks and we are all encouraged. It's the evening now. I feel great, no nausea. We'll see what happens this week with the lowered dosage of Decadron- the steroid (went from 20mg to 10mg). The Taxetere is still at 3x - it will go down next infusion - making the entire infusion time 2.5 hours for the next 4 infusions (today the actual infusion took 4 hours). We kept the Benadryl at the same level of 25mg. I realized that next time we should do a little tour of the entire suite, not just me sitting on the chair - which we figured out to totally incline this time. There seems to be a bit of learning curve, but it's starting to feel like a routine.
This video doesn't have the greatest quality for some reason, but you can see what it's like to be losing your hair on chemo. My doctors said it would start to thin around the 3rd week, but I didn't know what that meant. I would say it's a little more intense than "starting to thin". Fallon thinks the hair coming out looks like people pulling their memories out for the pensieve in Harry Potter. All I can think of was Hedda Gabler!
I couldn't get to the computer yesterday to report that I had a very easy week - no nausea, no fatigue. I was thinking this was all going to be so easy.
Well, that isn't 100% true. My skin is drying out and I am starting to scratch open some pieces of skin. Especially along my knuckles and chest. Nothing unsightly, just annoying to me.
About an hour ago, my follicles on my head started to ache a little. I needed to shower for a meeting, and when I started to wash my hair, it came out in my hands in strands, then in little clumps. Mainly from the back of my head. Here's a video in which I seem to be not too concerned about it -
BUT, NOW, everytime I touch my hair it comes out in my hand. I just shoved a hat on my head which I will wear into Manhattan and during my meeting, then I'll see what the damage is this evening when I have a better chance to assess the damage. Crikey!
I got an email from my sister today wondering why I hadn't written anything since I sent out the blog - 3 days ago!! I plan on doing weekly follow-ups so if I don't write anything between these it just means nothing has happened.
Week 1 on chemotherapy. I had no idea what to expect, everyone had differing stories - but no one I know personally chose the TCH once every 3 weeks therapy - so I went to the internet and followed other people's stories and questions. Tuesday was the infusion and afterwards I was very drowsy and slept most of Tuesday afternoon/evening. This could have been because of the Benadryl, it also could have been jet lag from just returning from Hawaii. Having slept for 3 hours Sunday night on the plane and then tossed and turned for 5 hours Monday night in anticipation of the unknown of therapy.
Wednesday I felt pretty good, had my usual morning juice drink and headed off to Manhattan to meet Jeni to rendezvous about 2012 id stuff followed by my last visit to my therapist Diana. (Last visit for therapy - I plan on going back for healings, etc. Diana and I have been together on and off since 1988 when I first started to attend her channeling classes - I graduated from her Open Heart Channeling School in 1995.) On my way home that evening I started to feel queasy and had to put my kindle away. When I got home all I could think of was drinking one of the Ginger Soothers (a ginger/lemon drink that Simon found for me). Ahhh. That helped a lot.
Thursday morning I got up and just felt off. My stomach was rumbling and nothing sounded good. Mention of food gave me a little gag reflex. I tried some nuts and immediately felt better. I went into Manhattan to work with Julia - a middle schooler I've been working with on her highschool auditions, she had a call back for PPAS and I went in to work with her for one more time before the call back. During the session I felt great, but I was really focused and we were jumping around and doing improvs - my mind was off my stomach. On the way home though I felt very queasy - never to the point of throwing up, but enough to make it very uncomfortable. Simon made miso soup that night - it was delicious and the broth was exactly what I needed.
Friday morning again felt a little off. I realized I needed to figure out food and schedule it on a regular basis - every 2 to three hours, small meals, so I never got to the point of nausea. That evening I still felt funny and laid my righteousness aside. I went and got pizza and beer. After a slice and a beer I felt fine. I've since gone back to my no gluten/dairy/nightshade/acidic food diet, but that pizza and beer worked like a charm.
Saturday I felt great. I had earlier begged off on going to take care of Noa - Jeni's beautiful daughter I have been helping with since last January - I guess I could have gone into Manhattan, but the idea of a subway ride was beyond me - so I was glad I had cancelled.
The rest of the weekend was uneventful. Spending time working and reading scripts. On the nauseous days I couldn't read scripts. Especially not on my kindle fire - the page turning was making me dizzy!!
So - if the rest of the five infusion weeks are like this one - as long as I manage my food intake and have plenty of ginger products about - I should be fine.
Oh did I mention my travel bands (sea bands). I've been wearing them and I think they are a huge part of why I wasn't more nauseous.
postscript - I also have discovered the most amazing dessert. I know I'm not supposed to have much sugar - but this is fantastic. No dairy - no soy. Purely Decadent (that's what it's called) made with Coconut Milk - Passionate Mango. Organic Coconut milk, organic agave syrup, chicory root extract, mango puree, passionfruit juice concentrate, carob bean gum, guar gum and natural mango flavor. Made by Turtle Mountain in Eugene, Oregon. Wow!!
January 3rd, 2012 - After I heard this statement for about the 5th time today at the center, I decided maybe it was time to consider cutting my hair. I thought it would be a chance to donate the excess to Locks of Love http://locksoflove.org - they have a donation form online at their site and it is super easy. Fallon volunteered to cut it, so it seems like the time is ripe! So, here goes.
December 6, 2011 - Went into Columbia/Presby for an MRI this morning. I like that I don;t have to wait around for much of anything. I got there and within 5 minutes they whisked me (and Simon) to another section. There was a waiting room for him and a dressing room with lockers and a bathroom for me. I put on a gown and footies and locked all my stuff in the locker. Simon held onto my key to the locker for me. Again, they almost immediately took me over to the MRI room. I met Juan and he gave me an IV load of Multihance. Basically Multihance is used to get what they call a contrast reading. So they do a regular MRI - this is a magnetic reading - and then do an enhanced one with Multihance. Using Multihance shows a greater contrast in the pictures with people with known lesions. So they have the regular MRI and a higher contrast MRI to compare. Everybody was really sweet and all kept telling me how uncomfortable the MRI table would be, but it really wasn't. There was one snafu though - the Dr's notes mentioned that he had wanted me to get a clip inserted (a small clip that gets embedded into the tumor so they can determine how much it deteriorates over the course of the treatment, and where the original tumor bed was in case we eliminate the entire thing). I waited on the table for about a 1/2 hour while they straightened that out. It was decided to go ahead with the MRI and then I would go up and get the clip after. MRI's are music makers. They have all these different rhythms and clicks and sounds that go with the machine - I kept finding myself making up songs to go with the rhythms and clicks. I also fell asleep for awhile. After the MRI - I got dressed, found Simon and we went back up to the 10th Floor. Here I waited for a while, but I didn't really have an appointment. I got called into change (again) and wait in a different room for the clip insertion. While waiting an Asian woman around my age started asking what I was there for, she was concerned because they wanted to see her due to a calcium deposit in her breast. The only problem was that she couldn't remember the word calcium, we finally figured it out when she started telling me it was in milk and bones... it felt a little like charades. I let her feel the lump in my breast and she said she didn't have anything like that. While we were chatting another younger woman sat down near us and burst into tears. I couldn't just sit there, so I reached out and asked if she just got bad news. She said not yet, but she knows that she has cancer, she can feel the lump and she is only 35 and has a little baby. I told her to concentrate on her baby daughter and think only good thoughts and be positive. She calmed down and was called into her Mammogram. I was then called in to the Sonogram room. They located the tumor on the sonogram, same process as before and then put a thin needle into the tumor and released a tiny marker (clip) into the breast. I had a quick mammogram after that and was sent off. I ran into the young woman from the waiting room on my way out and we exchanged phone numbers. She's going to keep in touch and let me know how she's doing!
Everything went smoothly. We were there for 5 hours of infusion time, 7 hours all together to get blood work, then see Dr. Crew and then into the infusion suite. Our nurse Sarah was great, gave us a lot of information and wrote down exactly how much of each treatment we were getting and how long that would take. The first infusion was of Benadryl which put me out within about 1/2 hour. I slept through most of the day while Simon watched over me and got me water and made sure I didn't lose my blanket and pillow. I wore my travel bands throughout the entire infusion, never felt nauseous but am still tired tonight! Probably from the Benadryl/Jet Lag combo.
December 1, 2011 - After meeting with Dr. F - we decided he was the right surgeon for us. Dr. Sheldon Feldman is the Head of Breast Surgery at Presbyterian Hospital at Columbia University in Manhattan, NY (Columbia/Presbyterian). I really like him and Simon feels at ease with him, even if he was over the phone. I made an appointment with one of his oncologists Dr. Katherine Crew and we meet with her on Tuesday the 6th. Dr. Feldman's office scheduled an MRI for me that morning so it will all work well. The only downfall is that it is all the way up in Washington Heights and a bit of travel for us. But, I used to work at the Social Workers College back in the 80's so I remembered the commute - and the neighborhood still feels amazingly familiar! I still haven't met my Patient Navigator Nancy, but I will stop by to see her on Tuesday. Just now, I got a call from Dr. Feldman's Office asking for a blood test, I have a script for a blood test at my PCP's office which is much closer, I'll go do that tomorrow.
