Monday, February 28, 2011

Feeling a little better...

I think I did go into this round of meds with a sinus infection after having had a pretty nasty viral deal two weeks ago that got better then came back with a vengence on the Wednesday prior. I think antibiotics are kicking in to deal with that, but overall....I think I'm going to have to admit that these meds are kicking my ass...a bit! Legs are flared up and grooving now...but that is as it should be I suppose. Took the day off from work today. (I have the world's best bosses and co-workers!)So I got some good rest.

Will work the next couple of days. Looking forward to a short trip to Atlanta Friday with Brent to see the Roo for lunch and a little grocery shopping.

May your legs be lump free!!! C

Sunday, February 27, 2011

I feel like....

...something the cat dragged in...after Zeno played with it for an hour! ;(

An uneventful adventure!

Ruthie and I made our trip to Tampa and back excitement free! The drives were easy; involving no cops and with only a few drivers wanting to share our lane while we were still in it. On the flight down, security in Atlanta was a breeze, a semi-nice lady traded seats with me so that Ruthie could sit with me. She said with a smirk that she "really didn't like the middle seat!" But, as Ruthie said, perhaps it makes her an exceptionally nice person, since she traded anyway. The most disturbing events occurred at the Budget rental car office where a lady with what looked to be about a 6 month old baby and 9-10 year old boy was trying to procure her car. Ear hustling as we were (since we were waiting interminably for our car with 'service' from a lady who didn't make herself very clear and kept leaving us, without explanation, to confer with others) we found that Budget had sent her an email, unceremoniously canceling her reservation. Then, it seemed as though that problem was resolved by the Budget attendant who was working with her, only for her to run into the same problem we had faced on our first trip together. Her brother had made the reservation, so it was in his name rather that hers. (Brent made mine and Ruthie's first car rental like that and the mean lady out in the garage kiosk gave us to understand that that was terrible and would only fix it for us this one time and then, it was only because I happened to have the exact same credit card Brent had used when he made the reservation.) Well, the poor girl we were watching had no such luck. Of course she didn't have her brother's credit card. The attendant was very flip and said that her brother would just have to come down there and pick up the car. She was very upset and said that there was no way he could do that since he was in rehab. So, the poor thing wasn't even down there to have fun, but to visit her brother. When she tried to rent a car herself right then, the attendant said that they were out of cars, and offered that all the other agencies whose reps were lined up there (Avis, Hertz, etc.) were too! Then he just left her and said, "Next!" The poor girl was about to cry and struggling to get her bags and children out of the line. Ruthie went over to talk to her to see if we could drop her anywhere or we were hopefully, about to get our car. But she declined our offer, saying she needed to be somewhere that was an hour and a half away. We probably should have taken her anyway. And what happened to the car that her brother had reserved? Did it just evaporate?! The attendant didn't try to help...offer her the number of a taxi or any other services or anything. I don't know how some people sleep at night. As it was, Ruth and I worried about her the whole time! I HATE BUDGET! We had already decided that we would never use them again after this trip because they have been difficult and uncooperative in every way on every trip....and this example of their service certainly capped it!

But, I digress. My appointments didn't start until after 9, so we were able to avoid going down to breakfast looking like homeless people. Got to the hospital just fine. Did encounter a bit of trouble with my IV start, got to do that 3 times! Missed our nurse Jackie....just because she is fun and gets our sense of humor. Some weirdness with trying to set up the appointment with Weber on the week of the leukophoresis. Brent had already spoken with the original coordinator, Kim, who has been a bit sketchy in the past and she had told him it was all set, giving him times and everything. Then, a different coordinator....also named Kim, just for fun...told us that it was not set up at all. After some back and forth with her, she said that the phoresis part was set and that she would arrange for an appointment with the NP as well. Hmmmmm! Given her prior inability to explain ANYTHING, I knew that would NOT fly with Brent Morris down there wanting info on the scans, etc! I tried to be diplomatic, but told 'Kim' this and she just said that Weber was so busy they were looking for a new doctor to help him with his load....blah, blah, blah. I told her that I was sorry and didn't mean to make things complicated, but if she gave us an appt with that particular NP, my husband would sit there until the cows came home demanding to talk to Weber anyway, which would mess up that day's schedule even more! She said she would fix things, but when we left none of it was actually scheduled, so that will be another thing to take care of...again...on Monday! After that, got through the medication and shots just fine. The nurse was really skilled at giving them and Ruthie kept me entertained with great stories that she and Shane think up for the occasion!

The return trip was fine. Got to the airport a bit before 3 for our 6:45 flight. Asked the same dude at the Air Tran counter if there was any flight in the next hour or so that we could have instead. Ruthie was a bit nervous, fearing that he would recognize me as the crazy lady throwing the 'B' word about from last time. But he didn't give any signs of alarm or recognition, but did give us seats on an earlier flight. We had plenty of time to make it through security without stress even though they were X-raying EVERYONE! Even a little old lady in a wheelchair who could hardly stand, much less put her arms over her head! People were very confused since the workers were offering no explanation for this. I requested a pat down in order to try to avoid some amount of cancer causing rays, so I was cordoned off in a little box until the lady came to do it. It was of no value to obvious hiding places for contraband were NOT checked. Craziness! But we got our flight, with seats together, just fine. Got to have pizza with Rosie in her dorm. Thanks, Roo! And Ruthie is back home safe and sound!

Much love to all of you who so willingly play my games with me! C

Friday, February 25, 2011

Ready to rock and roll!!

Got to Tampa with Ruthie just cops, no racing to air planes, no "B"words....had a good dinner together last night and we are up ready to go! Love to all-c

Monday, February 21, 2011

Restful weekend....

Felt really tired after this round of therapy...not sure what all contributed, though Brent tells me that at this point in the rounds of medication, the half lives have converged such that the level now remains constant, so perhaps that is the good and the bad news.

Had a nice visit with Momma and Daddy who came up on Friday bringing a delicious lunch with them! Got to visit with some friends who made me laugh on Sat evening. I did manage to walk/jog three miles with Brent and Z on Sat and jogged another 2 on Sunday, plus Brent helped me plant some 'gift' plants from a sweet friend! We added some ferns, bee balm, and wood poppies to Rosie's shade garden. We also put in rose campanula, irises, and yarrow in other areas. Mostly, I went about looking for signs of spring to go with the sounds of geese honking high overhead...and there they were...little daffodils poking their heads out...purple crocuses beginning to bloom...hyacinths and lilies and irises with rising green shoots...and pretty burgundy flowers hiding in the leaves and mulch from the Lenten roses! It was fun. Thanks to all of you who always bring me joy. c

Sunday, February 13, 2011

#4 of the first 6 = DONE!

Thanks to Ruthie, another crazy, silly, funny Tampa trip is DONE! It started with a hike up the hill in my subdivision, in the snow, in our coats, with purses over our shoulders, pulling our suitcase, while we laughed like hyenas, to the top where Brent had parked the car for us the night prior. From there we had a nice drive to Atlanta and a nice flight into Tampa, mostly thanks to a very kind lady who let me have her seat so that Ruthie and I could sit together. After spending over an hour at the Budget rental car office and dealing with the utterly incompetent, Patrick, made more rattled when, after he asked if we were in Tampa for business or pleasure, I replied, "Cancer therapy." My point, which I failed to make was...."Got cancer here dude! Not much time! Need to move this business along!!!" However, after Ruthie almost broke her neck, due to hitting her head so hard on the door frame when trying to get into the worst car ever made...a Volkswagen Jetta....OMG!!! It drives worse than a van I had and slower than golf carts I have driven. Turning around takes a 40acre field and turning the steering wheel more strength than Arnold Schwarzenegger in his prime! Anyhow, we were finally off, doing well except for a wrong turn,that somehow made us end up at Saks Fifth Avenue, so....what's a girl to do? We oohed and ahhhhhed over clothes we liked, made fun of those we didn't, found lots of outfits "that would look good on Rosie"...did a little shopping in other stores and had a great time in general. After dinner in the food court, we made our way to our hotel, only to be pulled over by Deputy Goodwin of the Hillsborough Sheriffs Dpt who is a complete and total ASS and not the least bit good!!! Who never could give us a real reason for pulling us over in the first place and only after being completely rude from the get-go said it was due to the fact that our tags didn't match our car...a rental. Then, after a long wait, admitted that there was no problem after all, never apologised and continued to be a jerk. Never fear...his superiors are hearing from a wide range of folk...from TN, TX, and AL!!! Anyhow, after that mess and extricating ourselves from the labyrinth of roads and sidewalks that surrounds USF (The University of South Florida)where we had had to pull over and be lost within, we made it to our home sweet home away from home La Quinta. In the morning, we rushed about, I ran down to the buffet breakfast in my plaid flannel pj bottoms, a tank top, silk blend dressy sweater and pump style walking shoes with wet hair and no make-up. A sight that can only be imagined!!! But, as I tried to get out of a gentleman's way in front of the coffee machine, he informed me to take my time, he knew "the difference between crazy and stupid"...he "knew better than to get between a woman and her first cup of coffee!" I kept wanting to ask him what made him think it was my first...but decided that might not be a good idea. Breakfast up to Ruthie, out to the car, looked at the clock...about to text Brent that we were on our way, then worried that since we were late we probably shouldn't let him in on that fact....when suddenly the light of horrors dawned...we weren't late!!! We were 30 minutes ahead of schedule! I ask you....who wants to get up 30 minutes ahead of time and rush around like crazy people????!!!!!! Anyhow, went on our way to the hospital. Did the rounds....lab/IV start with Jackie again. Visit with Dr. Weber who was thorough as usual. Ruthie found him to be very intelligent and caring. He answered our questions, basically telling us that the granulomas, though difficult, were good signs of an immune reaction. He also agreed that the white patches that seem to be developing on my arms, while not hugely obvious, do seem to be vitiligo (an absence of pigmentation) and a good sign about how my body is reacting to the medication, since patients who did well with the other immune stimulator type medicines had occasionally experienced the same thing. Then it was back to Jackie, for ice, shots, and IV meds. Once done we headed back to the airport and found ourselves there at around 2:30 for a flight that was scheduled to leave at 6:45. While we agreed that it would be no big deal for the two of us to sit and chat for the next couple of hours, we decided to ask if there was an earlier flight that we could take. Sure enough a dark haired, dark complected gentleman, carefully studied his computer, and after a great deal of time, decided that we could indeed take a 3:16 flight that was leaving in 30 minutes. That seemed a bit close, but I figured if we missed it, we could always get back on our original flight, so I agreed. Then he proceeded to type in this and that and make concerned faces, finally asking for help from a co-worker in order to make the change on his computer. At 3 o'clock he hands us the tickets and with incredible understatement, says, "You'll have to hurry. They're boarding now." I tell him, "He's the bomb!" Probably not the best choice of words given his complexion and his location in an airport, because his face changes, and Ruthie grabs my arm while telling him, "She just means,'You're nice!'" and we take off running....up the escalator, around the entire building to our designated train, show our credentials to the grouchy Hispanic lady who is ALWAYS there, ride the train, rush down a hall, through the area cordoned off with zig-zagged ropes to security where we end up behind 2 very slow and pitifully decrepit old men and a slow and anal young girl who required a separate plastic box for every item she possessed (and there were MANY!). We were finally in position to rid ourselves of all our belongings (including our shoes) and pass through the metal detector. I sent Ruthie ahead, saying I would pass our stuff through and she could collect it on the other side. She dashed though and as I started I was stopped by a man in uniform who said absolutely nothing, but just stood in my way. I was very confused, and told him, "But, sir! I haven't failed yet!" Inane I realize, but I was trying to let him know that I had not gone through the metal detector, making it beep. I had just walked away from the baggage thingie! With as few words as possible, he made it clear that: A) He didn't care if I had "failed" or not. B) I had to go through the scanner. Meanwhile, we hear our names from the overhead speaker, telling us that our plane is leaving and it is our last chance to board. Simultaneously, Ruthie starts pointing skyward, yelling, "They're calling us!! Come on!" and looking at me like I'm crazy for taking the time to chat with this man. While in the same moment, I'm thinking of Brent's admonition that I should just let them do a pat down rather than be scanned given all the radiation I have had and will continue to receive....when I mention that I don't think I should be scanned, the man, with a definite smirk, says that's fine with him, I can be patted down, "But that will take much longer!" What a jerk. Luckily, the slow, but now nice girl in front of me, who didn't get to "fail" either, but had been placed in the scanner, leaps out and tells me I can go ahead of her, which I do. I dashed off after that with Ruthie who was running, carrying everything, like a crazy person, and never even thanked her. So thank you, meticulous, slow, were very nice! We are assigned seats at the jet way, by a man in no hurry, but I figured he had connections. We rush onto the plane. I'm looking for row 32 while Ruthie is in row 18 and am slow to realize that the plane is pretty empty. Ruthie politely asks a grumpy lady if anyone is sitting in the two empty seats beside her...who looks at her like she is crazy since we are obviously the last two to board the plane....but somebody could have been in the bathroom!!!!! which she answers, "No." The bins for luggage are closed. Cell phones have already been turned off. The attendants are strapped in and one of them less than 3 feet from me, says, over the loud speaker, "When all passengers are seated, we can proceed to the taxi way!!" Seriously, all passengers, or just the two, crazy, sweating blond women who are the only people standing up?!!! Ruthie is frantically shoving away at the suitcase, never even hearing the announcement I learn later, and I quietly tell her to just sit down, which we do, trying to breathe, dry off, and laughing like hyenas!!! Poor Rosie. We didn't even get to tell her that we were headed her way much sooner than expected. We phoned her when we landed and she was my gracious girl, willing to change her plans to meet us, but with Atlanta traffic at rush hour, she was fine to finish what she was doing and meet us in plenty of time. We had a good supper together and made it home with no further craziness!!!

Ruthie got back home just fine on Saturday. Thanks so much for being so sweet and taking such great care of me and for putting up for all the craziness that seems to follow me around!!

Freddie came home for the weekend and helped me veg out on the couch all day Saturday, though I did jog 3 miles with Brent and Z today.

love - c

Friday, February 4, 2011

666 = mark of The BEAST!!!!

At our house, if you are a "beast", you are awesome, having completed a work out worthy of great adulation! If you hit 666 "calories" burned on the elliptical in 30 minutes, you are THE BEAST! And today...ladies and gents...I AM THE BEAST!!! Of course, Brent can do 1,704 in an hour, and Fred can lope along forever after lifting crazy weights, and Rosie goes for 11 mile runs just to relax, but we're not going to talk about that right now!!! :>) I figure I have to stay strong or this shit (the disease and the cure) could kill me!!!
Be the BEAST!!!! - c

Legs no worse....

I am glad to report that the injection sites on my legs have reacted no worse to the vaccines than they did last time. The new site is the worst and the prior sites have some erythema and irritation. I was a bit worried that there might be an exponential effect after every round since the second set caused such a dramatic reaction, but so far, despite a similar amount of redness and swelling, it is not terribly different. So....that is good.

Planning a lazy day with a bit of elliptical, cooking and reading. It's cold and misting rain here, but Brent and I are just hanging out. He'll be working two shifts in the after-hours clinic this weekend, so we'll veg today!

Hope you have a calm and restful weekend. with love - c