Okay, here is the long-awaited post about the retreat last weekend.
Last Friday morning, I decided to ask my mom to switch cars with me for the weekend so I didn't have to worry about whether the people and luggage would all fit at the airport. It also took the pressure off my packing, but I still managed to get everything I needed into one bag. I printed out a 'Planet Cancer Retreat' sign to hold up at the baggage claim and headed out.
I took Jackson with me to switch cars; took my car to the hospital where mom was working and she met us in the parking garage to switch keys. I thought the boy would enjoy the outing and since it was David's opening night, I though he could use an hour of quiet before I took off on my retreat and left him with Jackson. But Jackson behaved unreasonably the whole time. When we got there, he said he didn't want Grammy to say hi to him. Didn't want to see her. Then he refused to get in her car. He wanted us to go home in my car even though I had explained several times that the purpose of the trip was to switch cars. He just couldn't let it go. I finally had to drag him in and force him into his seat. And he cried and screamed the whole way home.
I suspect that he may have been upset because he saw me packing my bag and I told him I was going to a retreat. And he usually stays with my mom, so the combo of watching me pack and switching cars must have put him on edge, add my mom's presence and he was freaked out. So I guess it's understandable, just difficult.
When I got to the airport with my list of three ladies to pick up, I found three ladies waiting for a ride to the Planet Cancer Retreat, except two of them were not on my list. They had been at the airport waiting for a couple of hours already; Planet Cancer had mistaken their arrival times. So when the other two ladies who were on my list arrived, there were five people - six including me -and all our bags. A Planet Cancer rep was being sought to come after the people I couldn't fit. But I was really uncomfortable with the idea of leaving anyone there. Especially the two who had been there for two hours already.
Unsure of what to do, we all walked outside to await another car. As it happened, the facilitator and the artist for the retreat were also outside waiting for their ride who showed up as we were walking out. They had room for one more and so did I. So I took 4 other participants to the retreat. So it is a good thing I switched cars with my mother even if it was hard on Jackson for some reason known only to him.
When we got to The Crossings, we checked in and got our room keys, left our bags to be taken to our room and after a quick bite to eat, I headed to the spa building for a massage. My neck and shoulders were so stiff and painful that checking my blind spot while driving was hard. I had made an appt for 3:00 and made it just in time after the confusion/delay at the airport. Pretty nice facility; they gave me a key to a locker in the women's locker room. In it was a robe and flip flops and after I changed I was sent to a small lounge waiting room to fill out a questionnaire about what my goals for the session were and areas of trouble that I wanted focused on. This was my first massage. And because I was in such pain on my neck, my goal was pretty clear: loosen my neck and try to give me more range of motion back. I wanted to enjoy the weekend and the pain and stiffness was bad enough that I had to constantly change positions to relieve the pain. It sucked. And I am glad I got the go ahead from David to spend such a gross amount of money on a massage. Not something I plan to do often.
If I decide to make massage a part of my life I will certainly not be having them at the Crossings. And I may want to have semi-regular massages. The therapist was alarmed at the tightness in my neck and shoulders. I told her I am tight on a good day but this was extreme. The massage itself was pretty painful. I knew it was going to be. But I could feel my muscles loosen as she worked. It felt much better afterwards, but I still had to work with it all weekend. The difference was that I was able to stretch it myself and ibuprofen helped a lot. So I am glad I got an exorbitant massage first thing on the retreat.
Afterwards, I went back to my room to freshen up before going to meet the group in our home-base, the library. The rooms were double occupancy and one of the ladies that I picked up at the airport was my roomie. Barb is from Arlington Virginia, which is really part of D.C. We really got on well and since we are both lymphoma survivors and moms of small children, we had much to talk about. We were both happy with our room assignment. We felt comfortable with one another and stuck together for much of the retreat.
Making friends there was not difficult, though, because when you have such a big thing in common, you don't need much ice broken and small talk among cancer survivors is surreal. We compare diagnoses and ask each other what the stupidest thing anyone ever said to you was. I met some awesome people that I am certain to keep in touch with. There were probably 30 participants plus 4 or 5 staff/facilitators. So we were not a huge group, just about right, I'd say.
The officially facilitated fun that first night included a bingo-esq question/answer game in which a bingo won you various rubber duckies. I won three and gave them to Jackson. A about 9:45 we were released for free-time by the pool or in our rooms or whatever. Many of us headed over to the cafe to check on the wine situation. It was bleak. The wine bar closed at 9:00. The group milled about for a few minutes discussing various plans - "Do we leave the property for a local bar? Make a beer run? Who would go? What time do they shut the gates? Are there gates?" And for some reason people sort of drifted off without a resolution, leaving 4 of us standing there. I aid to Barb, "Are we gonna accept this?" Nope. Since I had a car on premises and am familiar with the area, we decided to procure some wine and bring it back for a glass at the pool. Another participant with us remembered that she had a bottle of vodka in her car from a wedding shower and asked us to pick up some cranberry juice.
It may sound like we are a bunch of lushes that couldn't deal with having no alcohol, but Barb and I agreed it was more of a 'no kids' thing. Here we were, she and I with pre-school age kids, out at a wellness resort for the weekend. Not driving anywhere, not having to be available for a small child in the middle of the night. And dammit we wanted to have a glass of wine by the luxury pool. So we went on a wine run to the HEB and bought 6 bottles, enough to share for the weekend. And a couple of children's flashlights. It was really dark on the paths at The Crossings and thought they would come in handy. And we could give them to our kids when we got home.
When we got back we found the 6 or so remaining people at the pool and sat in the moonlight with our wine shooting the shit. It was nice. We got to our room and into bed about 1:00 in the morning with plans to get up at 7ish for breakfast with the whole group.
Here is me and my roomie, Barb from DC.
Awesome things from day two were many. We had a painting workshop in which Kevin demonstrated each and every stroke of this painting until each of us was able to paint something we'd be happy to bring home. Even me. Here is my painting. Makes me laugh that David wants to frame it and hang it up in the house. I guess it looks ok, but really, the way it was taught to us, anyone could do it. Kevin was awesome.
I spent a little time at the pool. I didn't feel like swimming, just wanted to hang out and take in the scenery and the day. Here is the pool from a few different views. It is magnificent.
Saturday night we had a party at the cafe and patio with a beautiful view. What did we all do at the party? We played board games and made wallets and purses out of colored duct tape. Yup. Purses out of duct tape. I had never seen such a thing. But the beautiful detailed work some people were doing made me do one crappy little coin purse real quick to prove that it could be done. Mine is not even close to the awesomeness that was happening at the duct tape table. Just trust me. I may have some pictures when Planet Cancer sends out the photo disk. The picture of mine will have to do for now.
I used teal blue duct tape for the outside and hot pink tape for the inside.
Over drinks on the patio I had a chance to talk to the oncologist who spent the weekend with us. We had a doc and a nurse just in case anyone needed anything. There were some participants still on treatment or with lasting health issues. Anyway, they encouraged us to hit up Christian (he asked us not to call him Dr.) with any questions or concerns or anything. Said when would we ever be having a beer with our own doctors. Turns out he is a leukemia/lymphoma specialist from Scott & White in Temple. I talked to him a little bit about my treatment and was surprised to learn that R-CHOP, which is the chemo regimen I did, is actually considered one of the more tough chemos to do. As far as being sick from it and the side effects. That made me feel...good somehow. Like it really was tough and I wasn't just wimpy. When I hear about people that go through chemo and continue to work full time I always feel like such a wimp. Cause I didn't have to do that and I didn't feel like I could have. I suspect you simply do what you must. But it felt good to hear that it is considered to be one of the harder regimens. Of course that may mean that the long-term damage to my body from it all is worse too. I didn't win the lottery here.
We talked about the fact that I still have my port and have had clean scans for nearly a year. I told him it was my friend and I couldn't imagine being hospitalized or going through treatment with out it. He told me to say goodbye to my friend and take the port out already. He is about the same age as my doc - young. But he is much more open about saying what he thinks. Of course I am not his patient thus the relationship was of friends at a party shooting the shit. But it was really cool to ask him what he thought about things. He knows lymphoma, has been over my records as a condition of me being accepted at the retreat. And I asked him what he thought about me having another baby. He wanted to know what the hell I was waiting for. Dr. George is more conservative. Won't really say either way, but gives me the impression that he wants me to wait or to not do it. Christian says he counsels patients in my place to go for it. He said, "You can't put your life on hold forever. Just do it. Have a baby if you want one." He also explained that the new research is not advising patients like me to have PET/CT scans every 3 months. He says most recurrences are being found between scans, through blood work or symptoms and exam. The scans are simply exposing me to more and more radiation that can't be good for me, especially since they increase my chances of breast cancer. I told him my doctor was cutting way down on my scans after this September one and he thought that was good. It was really awesome to be shooting the shit with a lymphoma specialist over a glass of wine at a party. Just awesome. And I know where to find him in the future if for some reason I wanted his advice. Awesome.
So I guess I will be talking to Dr. George about getting my port out. Christian called me out on it. So I guess my implanted safety blanket has to go.
On Sunday I hiked a little after breakfast with my new Midwestern friend, Becky. Check out the chapel and grounds, accessible only by trail.
Here is me and Becky. At the beginning of the retreat she was wearing a wig, then moved to a bandanna, then took enough poking from the rest of us to go uncovered. She looks great and left maybe a little more confident about the way she looks than when she arrived. I told her that it was at about where she is in hair-growth when I started going out coverless.
I briefly attended the writing workshop they offered. It was a journaling thing with various prompts to get you started. I didn't think I would find much benefit from it as I am a blogger and I generally don't need any help letting my feelings out especially on paper. But I am glad I stopped by because the leader of the class handed out this piece that really moved me. So much so that I couldn't journal on it. I may at some point. But not then, in a group already mostly in tears as they wrote privately. I didn't want to go there right then. But I was glad for the poem. Hope you are too.
You Reading This, Be Ready
Starting here, what do you want to remember
How sunlight creeps along a shining floor?
What scent of old wood hovers, what softened
sound from outside fills the air?
Will you ever bring a better gift for the world
than the breathing respect that you carry
wherever you go right now? Are you waiting
for time to show you some better thoughts?
When you turn around, starting here, lift this
new glimpse that you found, carry into evening
all that you want from this day. This interval you spent
reading or hearing this, keep it for life-
What can anyone give greater than now,
starting here, right in this room, when you turn around?
Just about the perfect piece to give to a room full of young cancer survivors, eh?