I met with my oncologist on Monday. My husband and 1st year OHSU medical student (I'm a patient teacher for a class called "Living with Life Threatening Disease") accompanied me. With my CA 125 going up again (it's at 81, normal is 35 or below) , CT scan showing increased fluid in my abdomen (most likely cancer cells), and the fact that my history shows that I can't be off of chemo very long because the cancer always comes back, indicated we'd be starting chemo again.
We discussed many options and have decided to stay with the same regimin, but instead of the 5FU in the pump intraveniously over 3 days every other week, we are going to try a new routine and have me take the oral form, called Zolota. Instead of infusing every other week over a 3 day period, it will be taken 2x a day (3 pills each morning, 4 each night with a meal) over the course of 2 weeks. I will have one week to recover and start again. I will continue with my Avastin, which is given intraveniously in the chemo suite every 3rd Monday, in addition to fluids (Saline) since I am so dehydrated due to the pressure of the fluid in my abdomen (it's so uncomfortable in there to eat or drink! Too crowded! I'm really winded too because it's taking up lung space. And it feels like sandbags on me if I try and sleep on my back).
Even though it is an oral form of a drug I've previously had, it has different side effects. It's given in smaller doses over a longer period of time. It has to go through my digestive system and can be very hard on the stomach lining. It may cause nausea, vomiting, diarreah, mouth/gums/lips/stomach lining sores, hand/foot syndrome (naropathy/numbness + sensitivity/redness/cracking of skin on hands and feet). With the intravenious 5FU, I usually felt really bad days 4-5, but then felt ok to go about my business. With this oral form, I may feel nauseous over a longer period. It will get stretched out.
So far it's day 2 and I was really tired (but I haven't been sleeping, so don't know if that is due to the chemo or the lack of sleep). I slept on and off today until 3pm! I've been mildly nauseous. I do notice numbness in my fingers and feet. I'm not sure I'm going to like this better than being hooked up to a pump for 3 days. At least I know with that, I can handle the side effects. This increase in numbness in my hands is effecting my typing and texting (heaven forbid!!) and the foot thing is getting annoying. It's constant buzzing. I'm not liking it!! And I'm terrible at taking pills. Plus, I have to space them 12 hours apart, which means I have to get up at a certain time to eat, and if I'm asleep I want to stay that way!
I did find out that my first oncologist, who retired in April, is back filling in because they are so busy!! I was excited to hear that, since he knows my history and has been with me since Day 1. My new doc is out of the office next time I go in Feb. 2nd, so I'm going to reconnect with my retired doc!! It will be like getting a second opinion in a way, and validating what we are doing. I value his opinion and he was head of oncology before retiring, so I'm not the only one who values it. So that's good news.
I'm not going to ramble on any more about cancer and chemo. I just am sick of the whole ordeal.
Let's see what else have we been up to?
Kaelin's holiday program at school, Revels, was postponed due to snow, and was rescheduled for last week. Here's a few photos:
Dave coached Kaelin's 5th grade Hoop team, The Sting, to 2nd place in the Canby Basketball Tourney.
My beach trip to Pacific City with Loni, Paris and Sam, scheduled for last weekend was cancelled due to the rain and Highway 101 and I-5 being closed. :(
My trip to San Francisco next weekend with my UCLA college buddies is still up in the air depending on how I handle the chemo side effects. I am flying standby (my friend Sheila is a pilot for Horizon and I'm using a buddy pass and we're flying togehter).
I was invited to go to the Galapagos Islands for 9 days in May for a photography trip. World reknown photographers will be there helping us set up and take shots and critiquing them. We will be staying on a boat and traveling around to the different islands. A friend's husband pulled out of the trip and she wants me to take his place. It's already paid for. How can I pass that up?? It's so hard for me to plan anything though. Who knows what my health will be like. How I'll feel. I asked my oncologist about it and she said that she would help me make it happen. That 4 months would have gone by on chemo by then. Hopefully we'll get the CA125 down and the fluid reduced by then. I'm at risk for blood clots from sitting for long periods, like on long flights. The doc said there is an injection I can give myself an hour before the long flight to thin my blood. And I'll be traveling with a doctor. I should be in good hands. I can't even dream that big. It was so big I didn't even dare put that on my bucket list. How crazy is that?? What an adventure that would be.
Spencer is going to Japan with his Japanese class in March for 12 days. We need to do a fundraiser for it because I'm really not sure how we're going to swing it financially. It seems we've had the worst luck lately with the dryer dying, and having to repair all 3 of the cars around here. My jeep is in the shop for like the 3rd time. When it rains it pours. I'm really tired of getting rained on. So if anyone has any good suggestions for fundraisers Spencer can do on his own, send them my way. If anyone needs a 13 year old boy for hire, give me a hollar. He's really good at video games, the computer, soccer, entertaining children and reading. LOL Oh, and he has good phone manners.
Thank you to everyone for their Holiday cards (hopefully ours will go out in the spring!) and gifts from near and far. We appreciated them all. And we love you all with all our hearts. xoxoxo
To those of you whom I owe emails (LeNae, if you're reading this, that means you girlfriend!!!), please be patient with me. I get so frustrated with my email, as I'm still having problems and it kicks me out and it's so frustrating trying to answer them! It's darn near impossible! Better to text me if you have texting, or find me on Facebook and leave a message! You can find me under Shauna Berglund Immel. I apologize for my lack of communication in that medium these days. It's just so frustrating for me!!!!
Loves to all!!!
Oh! I forgot! My reading for Write Around Portland is this Thursday!!!