Its been awhile since I posted but should be easy enough to catch up as the cycles are getting sort of routine. I resumed chemo the Tuesday after we got back from Illinois, on June 29th. The usual 1.6 of Velcade, 40 mg of steroids and 500 of Cytoxan. I had to get platelets and a unit of blood too, so I was there all day. Wednesday night my cousin Amy (from outside Chicago) and her husband Tom flew in, he is working in Arlington on a project. She and I hung out Thursday, I went and picked her up and we had lunch at a dive diner then drove on to Southfork to do that tour. It was pretty hokey, but Amy and I had fun learning about some of the filming tricks (they only did outside scenes for Dallas at this place, inside was all studio in California.)
Thursday night Greg drove to pick Tom & Amy up at their hotel and we went to Via Real, a very nice Mexican place in Irving. I was dragging some, but managed to enjoy a margarita and the good company. On Friday I had to go to clinic for another bag of blood, so Amy hung around her hotel while Tom worked. The plan was for me to get her before late check-out and take her to the hotel they were going to spend Friday and Saturday in, up in Lewisville, but the clinic took forever and I ended up asking Greg to leave work to help her out, which he was OK with, he was doing online training modules and could complete them from home easily enough. We had planned to do something Friday night with them, probably go for barbeque or steak, but I was wiped out and had to bail. I end up laying in bed and reading and sleeping a lot. My body must need it. A lot of the time it sort of feels like I have a fever, a general soreness or muscle fatigue all over. The joy of chemo.
Saturday we went to Fort Worth and mosied around, had lunch at Riscky’s even though we don’t consider it that great of bbq, its more the experience. They saw the longhorns and walked around some, I planted myself on a bench and people-watched, I wasn’t doing so well on my legs. Greg and Tom are very similar in many ways and had a good time getting caught up. Amy and Tom and trying to get pregnant and are actually having to work at measuring ovulation and all that, so we talked about that some. I admitted to her that when Nancy first told me they were trying I teared up a little, so happy to think about them as parents, and I let her know I am very excited for her. They are only a couple months into it so hopefully soon! She said her chances of having twins are greatly increased on the drug they are giving her, too. She plans to be a stay-at-home Mom, and I think those are going to be some very blessed children! When they get here!
So there’s another big thing for me to look forward to. Right now my list is something like this:
- July 24 – Tickets to see “Joseph & Amazing Dreamcoat” with roommates (in Fort Worth)
- September 2 – my 47th birthday, might try to get a weekend in Galveston or Houston or something
- September 11 – Carnival Cruise (out of Ft. Lauderdale, to San Juan, St. Thomas, Antiqua, Tortola, Nassau Bahamas)
- November – Thanksgiving with family (Road trip? in a rented RV, TBD whether SC or IL or VA …)
- December – Lindsey’s college graduation SHOULD be happening, haven’t heard anything though
- December – Christmas, hoping sister Kathy & her family will come stay at Grey Wolf Lodge, hang out with us
- January 22 or thereabouts – birth of step-grandbaby (Jonathan and Kristin’s)
- February – trip to Virginia to meet the baby, visit with Greg’s kids
- March 11th – 2 year anniversary since Stem Cell Transplant
- May 24th – 8 year anniversary with Greg, planning to celebrate with a vacation getaway of some sort!
Greg just left for the Jamboree, pulled out the driveway and I won’t see him again until August 6 or thereabouts. The good thing is he is driving the Blazer, our 3rd vehicle, and will use it while up there in Fredericksburg then turn it over to Jonathan, who needs a vehicle and is willing to rig that one up with the DUI breathalizer thing he needs to get his license back (State of Virginia). We have the Vue to pull and haul everything, there was no need to hang on to the Blazer anymore, especially with garage space at such a premium here in Texas.
It is going to take a lot of gyrations to accomplish this, as Greg also has to drive with Larry in a van from Atlanta to Fredericksburg, so he is driving the Blazer to the Richmond airport, flying to Atlanta, then driving Larry back to Richmond, at which point Larry will have to drive the hour and a half to the Jamboree site and Greg will drive the Blazer and use it for the duration. Jonathan will have to come pick it up before Greg and Larry depart in the van headed back to Atlanta around August 2nd or so. Hopefully Greg will also get to see Lindsey either at the front or back of his trip, I texted her that he is staying in Kennesaw the 12th and she might be able to catch up to him.
Overall, I am doing OK. I am not going to Illinois the 24th of July as planned, and I have to undo a lot of plans but due to an increase in my light chains (still on the rise even THROUGH treatment!!) Dr. Anderson wants to add Doxil to the mix, which features even more wear and tear on the blood and he is worried I will constantly need platelets and blood, which will be very hard to manage if I am spending 10 days running myself ragged in another state. He says I will end up in an ER in Illinois. I would rather we focus on making sure I can enjoy the cruise in September, and it freaks everyone out anyway when I travel when I am so weak and get wherever and just lay around anyway, so its best to cancel. People are just going to have to understand. And I think they will.
Day to day I am not having much nausea, but still struggling to get good nutrition in/ make good choices when I do eat. I started incorporating those Carnation Instant Breakfasts into my daily routine, sometimes a double packet, which is exactly what saved my life when I couldn’t eat because of the esophagitis after my stem cell transplant. I am trying to take the JuicePlus more religiously also, I think it helps. My legs get restless and I usually solve that with a pain pill, it gets that intense. I have been sleeping a lot, and reading to keep from getting too bored. I get sick of watching TV, it is to the point where I can’t even enjoy a movie anymore, they are all so stupid to me. At the same time, I still watch “All My Children” faithfully.
I keep meaning to get by the Flower Mound library, I have several lists of Must Reads that I keep on my iPhone that I would like to start chipping away at, without buying every book. I want to start tracking my reading on Shelfari better than I have been, and I have really fallen behind on following blogs, I need to get out there and check what all my other myeloma blog friends are up to.
I have a lot of people I need to catch up with, either via phone or email, but there just doesn’t seem to be a whole lot to report or a good time to make calls. I figure people aren’t calling me because they don’t know when I’m resting or how I’m feeling or whether I’m up for chit-chat and “no news is good news”. I think I have entered into a sort of depression, the point at which the cancer is just part of my life, its apparent I just have to plug along fighting the good fight, and this could (and will hopefully) go on for years. Its like a holding pattern, and not a very cheery one. Hence the list above of things I look forward to.
Don’t get me wrong, I am counting my blessings every day and able to see joy in things all around me. Even when I waste an entire day laying around, unable to be productive or function much because of my low blood counts and how dizzy I get just standing on my feet, I think about the good days and what I am fighting for and the things I have ahead of me.