So proud of him

Mark and I met my step-brother, Mark, and his wife, Carol, for dinner last night, and it was fabulous. We had not seen each other in nearly a year. Wow, what a difference a year makes. Mark and I both have short hair now, for one thing. For years he had a long pony tail. Now he has short, adorable hair. Carol, a professional stylist, also cut her long hair into a cute, sassy new look. I loved her new style. Maybe when I get a little more hair, I can do something similar.

Mark has retinitis pigmentosa, which was diagnosed around age 12. At this point he has been completely blind for a number of years. Until recently, he wasn't really dealing with it very much. Yet, when we got to the restaurant yesterday, he was attempting to read the Braille menu. Yes, he's taking lessons in Braille. He also had a fabulous white cane that telescoped, looked like a giant Sharpie pen when retracted, and fit in his pocket. He bought an heirloom watch with a lift up crystal and raised numbers and hands. He can tell the time by touch. He has a talking book machine that can download dozens of books for free from the library. Amazing. He said that he has been unchallenged and bored for years, but he is now going to get busy with the new projects of Braille, learning touch typing, getting onto the computer, and even Spanish lessons. He has been accepted to Hadley University online for the Braille lessons. All I can say is that I am so proud of him.

We stayed in the restaurant for hours and then continued the evening talking in their hotel room until near midnight. At 8 a.m. we met up again in the motel breakfast room where we sat and ate and talked until 10:30. If check out time wasn't 11, we might have been there still. LOL!!

Love you both, Mark and Carol!! I'm so sorry that I forgot to take pictures of us together. Sniff.

We had an easy drive up to Ashland, VA today. At lunch time, I rewrapped part of my arm because it seemed to be unraveling. I didn't think there was much compression on the forearm any more. Now I think it's really perfect. I plan to keep it in place until Friday night. I hope it looks good when I take it off!

Tomorrow we will drive to East Brunswick, NJ and have dinner with the Gaertner families at a wonderful kosher restaurant in their neighborhood. We are really looking forward to that.

Heading North

Hopefully, we will head up north by 9 or 10 a.m. Our plan is to meet Mark and Carol at the restaurant about 7 p.m. tonight. That will be wonderful.

UGH, I also am UP two and a half pounds today. I'm not sure why. I had a reasonable day yesterday. Lunch was a bit larger than normal, but nothing horrible. Breakfast and dinner were perfect, and the only snacks I had were watermelon, a banana, and some sugar-free jello. I am chalking it up to fluid retention and lack of exercise yesterday. My right hand was very puffy this morning. I could hardly get the rings off of it, and so far I have not put them back on.

Well, the bandages lasted only until 10 p.m. By then, I was really tired of trying to ignore the aching and throbbing in my hand. I had already swallowed 4 Advils twice during the day to help. I unwrapped it all and slept without anything during the night. It took awhile for my hand to stop hurting after I took the wrap off, and I also had a sore inside the crease of my little finger. I put some neosporin on it this morning. The plus side is that I could take a nice shower this morning!

Right after I type this blog and eat my breakfast, I will attempt to wrap myself. I hope I find that perfect combination of compression to take care of the lymph build up without being so tight that it makes my hand throb or too loose so the hand is puffy later. Sigh. It's a difficult, delicate balance to find. Yesterday, even the professional missed it, I think.

Getting ready to go

I was amazed at my weight this morning. I was 242.4, which is another pound and a fraction down. I am down almost 7 since I started Weight Watchers. I'm not always on my points, but I think this week was reasonable and included lots of exercise. I also looked back in my record book and noticed that I'm down nearly 13 pounds since March 8 when I was 255. I guess I am going in the right direction.

I had my therapy this morning. She knows I'm going to be gone for 8 days, so she gave me an extra thorough drainage and extra thick, tight wrapping. OUCH! My hand has been throbbing all day. I want to take it off so badly, but I am supposed to keep it on until Friday. If it keeps me up all night, it's coming off a lot sooner.

We have packed our suitcases and organized the wedding shower things to take on the trip. We head out tomorrow for Florence, SC on our way to NJ for the first shower. Tomorrow night we are meeting my brother Mark and his wife Carol in Florence. They are coming to stay at the same motel so we can have dinner together at Fatz Cafe and then breakfast in the motel the next day. It will be great fun to have a visit with them! We haven't seen them since last August when we were driving down here to buy the house. Wow!

New Hair Color

Sorry to all who have been worried about the lack of a blog since last Thursday. I especially want to say thanks to Ellen C. for calling to check up on us! We were out today very early having my occupational therapy/lymphedema therapy, then picking up some jewelry, then having a follow up to my laser eye surgery, then playing Mah Jongg. Busy day! I won two games of Mahj. My eyes are fine, so I don't need to have any more surgery. The retina is repaired, but he cautioned me against engaging in any activities that could cause a blow to the head. Aw gee! No more boxing for me! He did mention this time that I have the beginnings of cataracts, a little bigger on the left than the right. No big deal. Pretty much everybody gets them sooner or later. Laverne just had hers removed. How was that surgery, Verne? Pain free, I hope.

Yesterday we went to see Cars 2, and we really enjoyed it a lot despite the bad reviews. I also was able to take my bandages off in the afternoon, so we spent three hours at the pool from 3-6 p.m. It was heavenly.

We had decided to work our way through the Star Trek episodes and movies. So far, we have not skipped a day. Right now we have episode 7 of Star Trek Enterprise on, "Andorian Incident," I think it's called. We are really enjoying them, and neither one of us remembers very much about them.

The big news is, of course, my HAIR! I got it dyed on Saturday, along with a mani/pedi, hair trim/style, and facial waxing, including eyebrows. I have never done any waxing before. That was an interesting experience, but I love my smooth skin now! I will definitely do it all again at the end of August for the wedding. The hair dye came out pretty good. I think it's very close to my natural color, although I'm not sure the picture on the blog is showing it very well. I put up two pictures so you can compare the old and the new.

Catch Up

Tuesday we spent a wonderful two hours in the Morse Museum with the Tiffany glass exhibit. It's pretty spectacular, and I think anyone who comes to central Florida should try to get there. We had also planned to do the lake cruise, but we didn't have time because I had to get back for PT. Instead we had a lovely Thai lunch on the main street in downtown Winter Park. For years we had seen this pretty street and park from the train because the station is there. We always said we wanted to visit that area, so we were happy to do that on Tuesday. I've included a picture of me in the Orchid, the Thai restaurant.

Wednesday we spent the day at the Kennedy Space Center Visitor Center to see the Sci-Fi summer and Star Trek exhibits. Mark had read about this Star Trek Live show years ago as it traveled around the country. Just a few weeks ago it came to KSC for the summer. The exhibits did not disappoint! Just to make ourselves really look dorky, we wore our matching Star Trek Captains t-shirts that we had bought in Las Vegas years ago at the Star Trek Experience out there.

Mark has many wonderful memories of his 37 years working for NASA at the Goddard Space Flight Center. He had many great trips to this area for meetings at Kennedy. Today he said he was enjoying being a tourist more than an employee!!

We are such Star Trek nerds that we got excited looking at all the exhibits and playing on the bridge! We also got inspired to watch ALL the TV episodes and movies and cartoon shows in the Star Trek universe chronology, not the order in which they were aired. So...we went right home and watched the opening two episodes of Star Trek Enterprise, starring Scott Bakula as Captain Archer. Fun times! I have liked Scott Bakula since I first saw him as the star of Quantum Leap. We also saw him perform the role of the father in the musical Shenandoah at Ford's Theater in Washington, D.C. (Yes, THAT Ford's Theater for those not from D.C.) One fun touch was that when we finished those two episodes, "Broken Bow, parts 1 and 2," we watched Scott Bakula in an episode of his new series, Men of a Certain Age. Ha Ha! Cindy, you'll get this! For me watching Scott Bakula is like you watching Boston Rob! LOL

I took my wraps off yesterday morning. As instructed, I had rewrapped myself Tuesday night. I looked pretty awful again yesterday morning, and I had a lot of pain in my forearm from swelling. I spent the day doing a LOT of manual drainage and did manage to get a lot of fluid out of my arm and hand. Last night I was determined to do better on my wrapping. I tried really hard to get it right, in fact, I started over three times. I wrapped it at 10 p.m. and at 3 a.m. I couldn't sleep from the throbbing in my hand. It was just too darn tight. I got up and took everything off! Well, it might have been hurting, but it worked. My hand and arm looked very normal. Wow! That was the first time I made it better not worse with my wrapping. Now I need to find that happy medium where I get the compression in the right places AND at the right intensity level.

I have PT again today at 2 p.m., and I will wrap myself under her watchful eyes once again. I'm sure she'll tell me to take it all off and redo it at bedtime. The game plan is that the night time wrapping is only occasional as I decide I need it. The rest of the time the compression garments and manual lymph drainage (which now she is saying to do 7 times a day) will take care of everything. Management is the key to this condition.

I'm going to my cancer support group in just a few minutes. I haven't been there in a long time because of other appointments or just being out of town. I won't be back for awhile, so I'm hoping to enjoy their company today. Then I'll be doing some more last minute shopping at Downtown Disney before heading to my afternoon PT appointment. It's Thursday, so the day will end with free wine dinner at Lakeside Restaurant and free movie in the Starlite Ballroom.

Have a great day, everybody!

Just a quick note

No time to write a lot today! Yesterday and today are super busy and very good. I will write a longer blog tomorrow when I have more time. We are all good, that's the main thing.

Also my weight is down, and I really don't know why. I had so much to eat on Friday in Ybor City and then again at the Tusker House on Sunday. Still, I was 243.7 yesterday! That's about a three pound loss for the week. Since I joined WW seven weeks ago, I am now down 5.4 pounds. Not a lot, but I'm grateful for every ounce!

I unwrapped my hand Sunday, and it still looked good at PT yesterday. She had me rewrap myself under her watchful eyes. Then she said undo it all at bedtime and rewrap for the practice and sleep with it on. I did. Then I am allowed to take it off for the whole day and just wear the compression sleeve/glove. Unfortunately, my own wrapping still is not helpful. My hand was a big, swollen mess again. I did lymph drainage twice this morning, and I'm now wearing my compression things. Hopefully, when I rewrap for bed tonight, I can do a better job. The wrapping helps tremendously when done right, but it only does terrible damage when done wrong. I really need to get this skill.

Heading to Kennedy Space Flight Center today. Yesterday we went to the Morse Museum in Winter Park. Details tomorrow!

Wonderful Time

Father's Day was as advertised. Everything was lovely, including the unbelievably sumptuous dinner at Tusker House in the Animal Kingdom. It was a buffet, and believe me, this time the buffet was NOT my friend. "The buffet is your friend" is an expression Mark often uses to remind me that at a buffet I can choose foods from a buffet that are appropriate and control my portions better than when you order from a menu. Yeah, RIGHT! Not yesterday. We also enjoyed a shot of whiskey sitting at the bar outside the restaurant,watching the afternoon parade go by, before our reservation time. All in all, we had a really nice day.

This morning Mark put together our two new barstools. I ordered two swivel stools that match the chairs at the kitchen table. We thought it would make the room seem more complete, and they do. Only glitch is they were cheap! One of them was a bit odd and difficult to put together as well as having a splintery rough spot on the seat. He managed to make it go together and a little sanding will take care of the rough spot, still you get what you pay for. The other glitch that I did not notice when ordering them was the weight limit. I'm pretty sure it never specified a weight limit on the website, or I'm sure I would never have ordered them. Officially, I am too heavy to sit on them. The weight limit is 225. Hm...maybe that and the lymphedema will make me stay on my diet. LOL

This afternoon I'm going to go next door and play Mah Jongg with the girls. I haven't done that since May 9 because of our crazy schedules. I think I can play again next week, but after that, I don't know when I'll have an open Monday afternoon again!

I never got to the pool yesterday. It was a little late when we left the restaurant and the storms were rolling in. I am hoping to get there after Mahj today because I still have no arm wrappings. Tomorrow afternoon they will be back for the rest of the week. Today is my one shot at the pool for the week. Hopefully the storms will hold off until after 7 p.m. You never know around here in the summer.

Happy Father's Day

My own father passed away in August of 1988. He was 62 and died of a heart attack in the hospital while waiting for his scheduled by-pass surgery two days later. I still think about him all the time. He was a brilliant and complicated man. Our relationship was great, then strained, then great again. I'm glad it ended with the good times. He got to see both of my children. Lowell was 9 when he passed; Evey was 1. Happy Father's Day, Daddy.

Now for my husband and the father of my children: Happy Father's Day, Mark! I love you so much it's indescribable. I also think we made some great children!!

For his special day, Mark wants to see the new movie, The Green Lantern, then have the vegetarian chili for lunch at Pollo Campero/Fresh Appeal at Downtown Disney. After that, we are going to do some wedding shower shopping at the World of Disney. I'm also going to buy him a Disney cell phone cover. (I already ordered him a new laptop, which hopefully will arrive tomorrow.) Once our shopping spree is over, we are heading to Animal Kingdom. I told him to pick any restaurant he wanted for dinner, and he picked the Tusker House at Animal Kingdom. It should be a lot of fun. Best of all, because I was allowed to unwrap my arm and wear only the compression sleeve and glove today, we are going to go to the pool this evening after dinner. Yay for a great day!!

We had a lovely time at the shul yesterday, and I ate too much at the catered luncheon afterwards. They had nothing but carbs and fats! That's hard for both me and Mark to do. We split a garlicky, cheese-filled hot bagel that was incredibly delicious. I had a little bit of the caesar salad, eschewed the angel hair pasta salad because it had too many olives all over it, skipped the artichoke/spinach dip and French bread even though it looked yummy, ate a fair sized portion of baked ziti, and a medium sized portion of cheese tortellini. We also ate hunks of fabulous challah, and I found the dessert table, which was very, very naughty. They had shortbread cookies, which I love, so I took one raspberry filled shortbread and two chocolate covered pretzel rods. Oh, my, chocolate-covered pretzels are one of my weaknesses.

At least we also went to the gym in the afternoon. I did my weight routine for 22 minutes, then walked on the treadmill for 25 minutes at 2.5 mph and a 2.5% incline. I burned 140 calories.

Last night I unwrapped my bandages. She said try to keep it on until Sunday, but the fingers were getting ratty like always, and the elbow was poking out. I figured it wasn't going to do much good for me over night, so I took it off at 11 p.m. WOW! She is GOOD! My hand was normal looking. It's unbelievable how great the compression system works when it's applied correctly. I really do need to learn how to do this right. Today I'm wearing the sleeve and glove. I am hoping that they will keep me looking normal until I see her again Tuesday afternoon. Meanwhile, I can shower every day! What a luxury that has become.

Yesterday I received a beautiful and touching email from one of my online cancer support lady friends. She is now also an email buddy because they put her in a different group from me this session. Her email said she had gone back to June 25, 2010 and read all my blog entries up until the time she met me in the cancer group, around the time I started chemo probably. She was touched and teared up reading about what I had been through. Really, she moved me to tears reading her email. I will be sending her a personal email right after I finish this public blog entry.

She also inspired me to do the same. I went back last night and reread months worth of blogs. Wow! So many adventures happened in those months; however, I read one thing that I had forgotten. The day after the surgery, the surgeon came in to the room to report that he had not been able to find the sentinel node and that he "took all the lymph nodes out." Really? I know the pathology report said there were 15 nodes, with cancer in one of them, but I had not remembered that he said ALL of the nodes. Well, shoot! No wonder I have lymphedema.

Over the last few days of wearing the extra big wrappings, I think I'm coming to terms with this condition a little bit. I'll like it a lot better if I can get skillful at the wrapping myself because I see what a difference it makes. I cannot allow it to get out of hand, and it's not going to ever go away. No one can cure this because the lymph nodes are gone and aren't coming back. I have to be sure that I do all the right things to keep the swelling down, to prevent cellulitis from occurring, and to preserve the use of my hand and arm for the rest of my life. These are BIG DEALS. I think my pity party is over. I'm ready to get on with the management phase with a cheerful expression.

Happy Father's Day to any other Dads out there who may be reading my blog today. Enjoy the day.

Silver Surfers rocked Ybor City.

The trip to Ybor City was great. We learned a lot of new things. The most important thing that we learned is that the Solivita Silver Surfers don't mess with the timing. The trip was advertised to leave at 12:30 p.m. We got a phone call on Monday reminding us of the trip and telling us to report at 12:15. We arrived on the dot at 12:15 thinking we were right on time, even early. OH NO! The bus was full. We were the last to arrive, and it pulled out at 12:16 as soon as we got on the bus. Hm...then after the museum tour, we had a few hours on our own before our 6 p.m. dinner reservation at the Columbia. We were told we could meet back at the museum at 5:45 and walk together the four blocks to the restaurant or just show up at the restaurant. We decided just to show up and got there at 5:45, again thinking we were early. WRONG AGAIN! We walked in at 5:45 and found our three long tables completely filled. Once again, we were the last to arrive. Fortunately the leader, who knew we were rookies, had saved us two seats next to her and her husband. We should have known because we go to the Thursday night movies almost every week, and they start on the dot at 7 p.m. Obviously, Solivita does not operate on Jewish time! LOL

We also learned the history of Ybor City, a company town for the cigar industry. Spaniard, Vicentes Martinez Ybor, left Spain at age 14 to avoid conscription into the army. His parents sent him to Cuba because they felt he was too little for the army. He learned the cigar trade in Cuba. Eventually, he became a successful cigar manufacturer, but he also sympathized with the revolutionaries trying to break away from Spain. He was marked for death as a traitor, so he fled to Key West and set up another cigar factory. This didn't work out for lots of reasons, so he was looking for another place to continue his business. In 1885, he founded Ybor City in the Tampa area and the rest, as they say, was history. We saw a great video in the museum about the Cuban, Spanish, German, Sicilian, and Jewish immigrants who all flocked to Ybor City and the cigar industry. It was one of the first multi-ethnic communities with people of all races and religions working and living side by side. The area is now on the register of historic places, and the museum, plaza, and company house are a state park.

After we finished the tour, we had a few hours on our own. Mark and I love trolley rides, so we walked two blocks and hopped the historic trolley. We rode to the end and back without getting off at any of the dozen stops. The ride goes past the aquarium, the convention center, shopping districts, the cruise terminals, and other locations. It gave us a nice view of a lot of downtown Tampa. When it got to the farthest end of the line, the conductor flipped all the seat backs to face the other way! He then took the controls at the back end of the car, and we retraced our steps. Cool.

Actually it was anything but cool outside. It was 100 in the shade and the humidity felt the same. Walking in my long sleeved shirt was hot, even though I was wearing a spaghetti strap camisole underneath. When we got of the trolley, Mark realized he had forgotten his umbrella back in the museum, so first we went to retrieve it. Then we walked a block to a cozy coffee shop where we had an iced sugar free latte. I also had a small serving of homemade lemon and raspberry sorbetto. So deliciously cooling and refreshing. There was still about an hour left until dinner, so Mark decided to walk about six blocks back to the shopping district to look for people hand rolling cigars. There are still some shops there that do this. I didn't feel like getting sweated up again, and I knew he could do it faster walking by himself. I sat in the coffee shop, ironically drinking a hot coffee to warm up (the A/C was going full blast!), and reading.

The Columbia Restaurant is the oldest restaurant in Florida. It has 1200 seats in over a dozen separate rooms. We were in the room with the stage! After dinner there was a fabulous Flamenco dancing performance. Dinner was also very delicious and included a salad, mahi mahi with citrus salsa, baked yucca (tasted like a potato), fried plantains, and brown rice. We each received a little loaf of hot bread, and dessert was a huge slab of Godiva chocolate cake with chocolate mousse frosting plus delicious hot coffee. Scrumptious. When the show ended at 8, we all promptly boarded the bus for the ninety minute ride home.

It was a wonderful day!

Today we are heading to shul. There is a bar mitzvah, and I'm going to wear one of my new dresses from Kohl's. Later we will go up and do our weight routines.

The Silver Surfers visit Ybor City!

Silver Surfers is an expression we read once in a newspaper article about retired people who are always traveling around, especially when everyone else is working or in school. We liked that phrase and have referred to ourselves and others like us as Silver Surfers ever since. Today we will join some other Solivita Silver Surfers!

This afternoon we are taking our first day trip with the Solivita Travel Club, of which we are members in good standing. They do periodic monthly day trips to interesting places in Florida. They also do lots of cruises, land tours all around the world, and overnight trips around the country. Today we are boarding a bus at 12:15 to travel to the Tampa area to visit historic Ybor City. We will visit a museum, take a walking tour, and have dinner at the oldest restaurant in Florida with live entertainment. It should be a great day. Of course, I will post some pictures tomorrow with more details!

I wrote yesterday that my hand was a mess when I unwrapped it. It looked like it had swallowed a balloon! Instead of trying to rewrap it, I put my compression sleeve and new compression glove on to wear to the therapy session. She was unimpressed with my glove. She did not think it was tight enough. It was my second try because the first one was so tight and scratchy I refused to take it. This new one fits better, is from a different company, and has softer material. I actually like it a lot. Anyway, my hand did look horrible. She told me that my treatment plan was written for 8 weeks, so even though yesterday was going to be my last day because she had been hoping 10 sessions would be enough, we can actually extend it to 8 weeks. I had mixed feelings because I was excited to be finished today, and I even had a nice arrangement from Edible Arrangements with a lovely Thank You card scheduled to arrive later in the day for her. Oh, well...she did love the fruit and called me on the phone later to thank me and say how surprised she was!

She gave me a thorough manual lymph drainage and made a bit of progress on the hand. She also decided to wrap me herself and put DOUBLE wrappings on the hand with extra compression. I'm even less able to use the hand than usual. I'm supposed to keep it on until Sunday, if I can stand it. Now I have two appointments for next week (Tu and Thur) and for the week after (Mon and Tu). We are leaving for an 8 day trip to MD and NJ for the wedding showers on Wednesday, June 29, so I won't be able to resume my therapy until we get back from that and the wedding in Seattle. July 11 would be the next possible time to see her. OY! That's nearly 2 weeks on my own. She is going to see how I do in the next two weeks because maybe she will decide I'm done then.

I must admit that I fell into a bit of a pity party for myself yesterday. I whined in her office about how much I hate this: the wrapping, the manual drainage, the time it takes to do it all, everything. She said I could cry for five minutes, but then I needed to suck it up and learn to deal with it. It's not going away, and it's my new life. Of course she's right, but I wasn't done feeling sorry for myself. I called Mark on the way home to whine, but he was shopping and unable to talk. So I called Evey because I knew she was not at work. She was great! She totally let me vent and whine and nearly break down into tears. I tried really hard not to cry because my left eye is already still blurry from the floaters and surgery. I didn't need my one good eye to get blurry from tearing up! LOL She even said, "Are you sure you should be driving with only one eye and one arm?" Oh, she's a funny one! By the time I got done talking with her, I definitely felt better. Thanks, Evey, for letting me vent on you. Love you, sweetie!

The rest of the day was great, filled with errands with Mark. After lunch at Subway, we went to Kay Jewelers. I bought an 18 inch white gold chain to replace the 24 inch platinum chain on my antique diamond necklace that my mother had made for me with diamonds from her mother's bracelet. It's a spectacularly beautiful, delicate, one-of-a-kind piece. OK, it's really two-of-a-kind because my mother made one for me and one for my sister Flyn, but she had to sell hers nearly 30 years ago. Evey is going to wear this necklace at the wedding as her "something borrowed." We also are having Mark's wedding ring sized up. His knuckle is too big to get the ring on or off anymore. I bought this for him as an early anniversary present. Happy Anniversary, Mark!

Next we bought some Disney things to put in the goody bags for the MD shower. After that it was time for the free wine dinner at the Lakeside restaurant and the movie Country Strong with Tim McGraw and Gwyneth Paltrow. We were excited about the movie but left feeling somewhat unimpressed. Oh, well, it was still a great night out.

When we got home, I got a text from Evey's future mother-in-law, Leslie. She had just received her wedding invitation, as I had I. She loved it and was letting us know that she thought it was beautiful. I had helped Evey pick it out and plan the wording back in March on her visit here, but I was still surprised and amazed by how great they turned out. Evey mailed the two moms their invitations a few days early, but the rest will be going out very soon. I think everyone who receives one will also think it is beautiful.

Look for pictures of Ybor City tomorrow! Have a great day.

Puffy Hand

With a great deal of help from Mark, I was able to upload this picture from my phone. This is me in my garden party outfit that I'm going to wear to Leslie's shower for Evey in NJ on July 2. Evey pronounced it a good outfit!

So far I am not good at this wrapping thing. Yesterday I did it to myself, but under the therapist's watchful eye and tutelage. It was a much better job than when I did it on my own at home Tuesday night, and you can see it on my left arm in this picture. Still, this morning when I took it off, my hand, fingers, and wrist are HUGE. I have never seen them look worse. Clearly, the wrapping can help tremendously or make it much worse. When I unwrapped the therapist's wrappings, my hand and arm always looked terrific! Now, I have undone three weeks of work with my clumsy attempts.

I am now doing a lot of manual lymph drainage on my hand. I'm also taking advantage of having no wrappings to get this blog typed. Then I have to shower and rewrap before heading up to the PT clinic for my 11 a.m. appointment. She will check my wrappings, undo them, give me therapy, and then watch me rewrap it yet again. I don't think that I'm going to enjoy this aspect of my new normal.

Other than this crazy unwrap/wrap/unwrap/wrap morning, Mark and I are going to have some fun shopping and going to Downtown Disney. Today is my day to buy things for the MD wedding shower. I have lots of goodies and surprises in mind, but I can't tell you what they are on the blog because Evey and lots of the women coming to the shower read this. I want it to stay a bit of a surprise. At least I know now how many goodie bags to make. There are only 2 women that I have not heard from, but I don't expect either one to come. And my cousin Irene is trying hard to get the day off from work because she really, really wants to come. I'm going to make her a goodie bag and if she can't make it, I'll drop it off at her house the day after the shower!

Blame it on the Tuna Salad

I am probably not going back to Panera any time soon. By late afternoon yesterday, I felt much better. I felt fine all day today. It just seems like too big of a coincidence that I ate the sandwich and then was sick all day the next day.

I had my ultrasound of the carotid artery today. It was a bit over an hour drive to get there, but it was an easy drive and everyone was nice once I got there. It took maybe 30 minutes for them to scan both sides. Results should get to the doctor by next Wednesday, they said. My medical oncologist is only going to call me if there is something wrong; I will see my PCP on July 7 to hear the official results. I'm sure there is nothing going to show up on either this ultrasound or the CT scan of the head from last Monday. Those results should have already gone to her, and I didn't get a call. Good sign.

After the ultrasound, I went to the Florida Mall. We have driven by it a lot, but this was the first time I went in. I intended just to walk around to kill some time before my lymphedema PT appointment, but I ended up shopping again. Monday I bought four dresses at kohl's at The Loop, intending one of them to be for Evey's NJ "garden party" wedding shower, but I didn't love them. I can, of course, use all the dresses for other occasions, so they won't go to waste. Still, none of them were what I really wanted to wear to the shower. Voila! J.C. Penney's to the rescue! They had a Liz Claiborne dress in my size that was exactly what I wanted, blue, cotton, slight sleeves. I also got matching flip flops (which I really never wear) and a hat! I'm all set.

I put everything in the trunk and then wandered the mall. It's very big. I think it's only one story, but it reminds me somewhat of the Columbia Mall. It was near lunch time, so I made my way to the food court and had spicy tofu with spicy mixed vegetables and veggie spring roll. YUM! It was the best fast food Chinese food I ever had.

After lunch, I went to my lymphedema appointment. My assignment last time was to unwrap and then rewrap myself at home. Because I had to get up and out so early this morning, I did it last night. It was so HARD. I did a crappy job, too, because when the therapist unwrapped it in the office, my hand was a huge swollen mess and so was my wrist and forearm. Clearly the wrapping can help a lot done properly, or totally screw you up when done improperly. She gave the arm a lot of therapy to drain it, so it looked pretty good when she was done. Then she instructed me in great detail about how to do it myself, and she watched and coached me as I did it. Now my assignment is to take it off tomorrow morning and then put it back on. I have my last appointment with her tomorrow at 11 a.m. where she will check my work. Ha Ha!! Hopefully, it will look a lot better. It's really hard to put this on to yourself, but I guess practice will make it better.

In her opinion, I should wear this all the time, every day and night, at least right up until I fly to Seattle on July 8. I will wear the compression sleeve on the flight because she said the TSA people don't like to see these big bandages and they could hassle me about it. I am supposed to rewrap the big bandages the instant I get in the hotel in Seattle. UGH. I'm pretty sure I might not be entirely compliant with this. I really want to go swimming some times. She already took away the hot tub, walking around in the sun, and swimming during day times. She has only left me swimming after 5 p.m., but if I wear the bandages all the time, then there is NO swimming. I just can't live like that! I know we have to get used to our "new normal" after BC, but this is where I draw the line. There WILL be swimming!

Yucky Today

I slept in a bit this morning since we had no plans to go anywhere in the morning. I actually got up at 7:45. I did all my manual drainage and upper extremity exercises, like a good girl, then I came to the kitchen to start on the computer. While I was reading Facebook and checking emails, I started to feel nauseous. I thought I needed to eat breakfast, so I made my usual sausage links and yogurt. It did not help. I went and sat on the couch for awhile with my eyes closed trying to make it go away. It did not go away. I went back to bed for an hour. When I got up at 11, I felt better. I made a cup of green tea and sat down to read for awhile. The nausea returned. UGH.

It feels like low-level nausea, like when I was on chemo. It's weird. I'm also having hot flashes today, three this morning, which is odd. I have not had one for weeks.

So while trying to find a reason for this, Mark said, "There are so many things going on with you that it's hard to pinpoint the cause. " True. Here are the two main possibilities: Arimidex or Panera. I ate a tuna salad sandwich at Panera yesterday for lunch. I almost never go there, but it was convenient yesterday. Although, I would think that if the tuna salad was bad, it would have got me sooner. Arimidex has many side effects, and nausea is one; however, I have been on it for exactly four months now. Like Panera, I would think that if it was going to make me sick, it would have done it already.

There is also my eyes. My vision isn't normal yet, and it's annoying to read or watch TV. Maybe that's catching up to me? There is also the dizziness and lightheadedness that I've been having since March. I had the CT scan of the head last week, and tomorrow morning I have the ultrasound of the carotid artery. I suspect the CT scan is fine. I see my PCP on July 7 to officially go over the results, but the med onc said she would call me right away if there was anything abnormal. She has not called. There is the lymphedema, but I've never heard of it causing nausea. And finally there are those old nodes in the lungs. I just had the chest CT scans from '06-'08 reviewed by the radiologist to compare them to the February PET scan. Hopefully they did not change, but i doubt if that would cause nausea either. But you can see why Mark said there are too many things going wrong with me! LOL

I have no fever, so that's a good sign.

In the middle of typing this blog, I had to go lie down again because i was feeling so bad. I feel just like when I was on chemo. Can chemo give you flashbacks? Ha Ha!

Finally, I remembered that I still had the anti-nausea pills from the chemo. At 12:30 I took a Zofran. So far, only 30 minutes in to it, I don't feel any better. I have now made toast and herbal ginger tea for lunch. I am planning on staying in my nightgown all day again today, but it's not going to be as much fun as it was on Saturday. We were planning to go to line dancing and drive up to Orlando for kosher meat shopping, but that has been canceled for today. After I eat my toast and tea, I'm planning on going back to bed. I am not a happy camper today.

The fitting

The MOB dress fitting went very well this morning. Basically they ordered the dress as large as it came, size 20. The seamstress took it apart at almost every seam, measured me, and is going to sew it back together at my size, more like a size 24. Fortunately the jacket fit in the arms and shoulders just fine. She's going to add a little on the sides of it. I get to go back in a month to try it on again and check the hemline. Then I'll pick it up at the end of August. I truly do believe now that it's going to work out.

I also picked up Evey's shoes, tiara, and veil. They are all beautiful.

The Mad Cow Theater was very tiny. It reminded us of the old Greenbelt theater or the Silver Spring Stage, for those who have been to those. Unlike those, however, this is a professional theater. The voices and the small band were all excellent. They did an outstanding job with all aspects of the show in such a small space. This theater has been there for 14 years, and next season it is moving to a slightly larger space a few blocks away. We would definitely go there again. We had used a special offer from LivingSocial.com. We got two tickets, two drinks, and free parking for only $23. Amazing. If you have never checked out Living Social, you should. Evey told us about it, and we have gotten some great deals.

I had PT and got rewrapped this afternoon. Just two more times! My new assignment is to wrap myself! She wants me to take this off Wednesday morning and then put it back on myself, so when she sees me Wednesday afternoon, she will see how I did. I have been watching her, but not all that closely. I think I can do 7 out of the 8 pieces, but the first part around the fingers and hand is the most complicated. I don't know if I'll get that right. I'm going to pay close attention when I take it off! I will have to get up real early Wednesday morning to do this since I have to leave at 8 a.m. to head up to downtown Orlando for the carotid artery ultrasound.

My eye is improving. I still have a lot of floaters in there blocking some of the vision, but I have had no flashes today. I was going to call to see if it was normal to have flashes after surgery since I had some all weekend, but today there haven't been any, so I guess that's a good thing. I'm not calling.

I'm about to go take an afternoon nap and then go to the gym. Bye Bye!

The busy do-nothing day is followed by an all-day-theater day.

Yesterday my do-nothing day turned out to be quite productive. I took everything off all three of my dressers and cleaned them up. Wow! There was a lot of trash and crap to throw away or put somewhere else. I also emptied and reorganized my three large jewelry boxes and nine smaller boxes. I think I realized that I have TOO MUCH jewelry. I really never should buy another piece. The good news is that I found the beautiful laramar necklace and bracelet that I bought on the last cruise. Truthfully, the whole point of cleaning off the dresser tops was to find that jewelry, so the day was a success. The picture is of me on the ship in St. Maarten the day I bought the laramar pieces. As long as I was on a roll, I also emptied everything out of the two night stands and threw away about half of it and reorganized and replaced the important things. I enjoyed the day. I also never got dressed the whole day!

This morning I unwrapped my arm and got a good shower. I also did almost all of the exercises that were prescribed for me, both the manual lymph drainage and the upper extremity exercises. I found the paper with those on them in the clean up. LOL! I need to get a squeezy ball and a stick to do the other exercises. Mark produced a ball, so all I need to find is a stick for the last set. Maybe tomorrow I'll look for one. I was also pleased with how well and how fast I was able to get the regular compression sleeve on today. The better I get at putting it on the less annoying I will find this new daily routine to be, I think.

Today we are going to the movie theater at Downtown Disney to see Bridesmaids. Everyone says it's hilarious. We will have lunch at Fresh Appeal inside Pollo Campero at the Disney Marketplace. Last week I had a veggie salad, veggie chilli, and fruit cup. It was spectacular. Mark is going to try the chili today. After lunch we are heading up to downtown Orlando to a theater called the Mad Cow. Interesting name. The show is one we have never seen live, A Funny Thing Happened on the Way to the Forum. We are pretty excited about going to see it. I'll let you know tomorrow how the theater looked and how the production was.

Tomorrow is a big day. It's my Mother-of-the-Bride dress fitting day! I'm sad and happy at the same time. I'm sad I didn't lose any weight since I ordered it back in March, but I'm happy to go see it and find out if they can make it fit with the extra fabric they ordered. I'm also happy that I have my new bras and breast prosthesis to wear for the best possible fit.

Have a great day wherever you are!

Not as painfree as advertised.

I went to PT yesterday and got rewrapped. The sores had healed up quickly, so that was no problem. I was feeling confident that my arm and fingers were in great shape and only my hand was still swollen. She disagreed. She said my forearm was a mess from being unwrapped for two days. This disturbed me because it makes me worry that I won't recognize the swelling in my arm when I am out of her care at the end of next week. Also, next week she is going to teach me how to wrap myself. UGH. Not really looking forward to that.

Later in the afternoon we drove nearly 90 minutes (mostly due to a closed lane on one particular road leading to a slow crawl for awhile) to the opthamologist. He was very nice. He examined the eye and pronounced it full of multiple retinal tears due to old age and life long near-sightedness. He said I needed immediate laser surgery to correct it or I could have a detached retina, which is a much bigger problem. I was nervous, but I got through it. It lasted about 10 minutes. It felt like a little hammer banging at the back of my eye and the top of my head. Not the most pleasant experience I ever had, but not the worst either. I left with dark glasses, a headache, blurred vision, and the admonition to avoid lifting anything or straining for two days.

We had to stop at two stores on the way home so Mark could do some grocery shopping for the week. I sat still on a bench waiting. It was really hard to look at anything. When I got home, I took 4 Advils for the headache (per the doctor's instructions), then Mark made me a delicious cocktail called "Dances with Wenches" that had guava berry liqueur brought back from St. Maarten mixed with juices from lemons, limes, and cranberries. It was delicious, but after a few sips, I fell asleep on the couch for two hours! I think the stress of the day caught up to me!

Today I have decided to do nothing. I am not going to shul; I am not getting dressed; I am not going to think or stress about anything. I am going to relax, watch some TV, play sudoku puzzles on my phone, and maybe sort through some stuff on my dresser tops. I had actually put "clean the dresser tops" on my calendar for yesterday, but the trip to the eye doctor took away that time. I felt a little cheated out of that, so I might just do it this afternoon. It will not require any heavy lifting or straining. I have misplaced my beautiful laramar necklace and bracelet from the last cruise, so finding them is my ulterior motive for cleaning up the dressers.

Always Something

Yesterday was very low key, so even though my arm was unwrapped and I could have written a blog, there was really nothing to write about. We went to Shavuot services, which were lovely. Then we basically napped the afternoon away. No exercise for us! That was naughty and unintended, but napping was nice!

Today I have a 9 a.m. PT appointment where I am going to get wrapped up again. It's clearly working. My arm and fingers look and feel normal. Only my hand is still kind of puffy with some pain in the back of the hand and the knuckles. I have no doubt that by next Friday when the PT ends, my hand will be back to normal, too. I only hope that my manual home drainage keeps it at bay after that.

I did develop one new little thing to deal with Wednesday afternoon. On the way home from PT I got a giant spidery floater in my left eye. I have had those before, and although they are annoying, I know there is nothing to be done about it. Usually after awhile it breaks up or floats out of the field of vision. Unfortunately, later in the evening I started to see a bright flash of light on the left side of my eye periodically. Mark did a little google search and discovered that it could indicate a retinal tear or leak. I called an opthamologist yesterday, so this afternoon I am driving up to Orlando for a 1:15 appointment to have it checked out. Small tears can heal themselves and bigger ones can be fixed, painlessly, with laser surgery. I'm not too worried about it, but it's annoying to have to have yet another doctor's visit in the day.

Finally, I want to say how sorry I am that our former Rabbi's son, Reuben, had to give up his Walt Disney World vacation with us in June. Shockingly, he was hit by a pickup truck last Thursday. Unbelievable. It could have been much, much worse than it was. He fractured his fibula and damaged a ligament in his knee. They are still waiting for the MRI results to find out if he needs ACL repair surgery. Meanwhile, he's on crutches for quite a few weeks. Needless to say he is not up for tramping around WDW the week of June 20. We wish him well and will keep his name in our prayers and on our new shul's refuah shlayma list for a complete healing. We are also keeping the last two weeks of July open in case he is up for the visit by then. And lastly, if not this summer, then next summer for sure! Reuben, be well! We will miss you on June 20, but we are confident your trip down here will happen eventually. We definitely WANT that week with you!!! And I'm glad I am now your Facebook friend. Keep in touch!

No big arm wrap for me today!

First of all, last night's dinner of cheese and blueberry blintzes for Shavuot were fabulous. We also had a lovely service and some study sessions at SOJC, our new shul. Mark gave his Torah Trivia contest as the last of the four study sessions. It was after the ice cream social intermission, between the two early sessions and the two later sessions, so obviously a chunk of people with kids went home. Still, he had a respectable and manageable group of 18 or so people who LOVED his contest. Our friend Ed won in a tie-breaker question. How exciting! I'm sure he will be asked to do it again next year.

Yesterday I used the morning to empty out each and every one of my dresser drawers (13 total), clean them up, and reorganize them. I discovered that I had 84 pairs of socks. Seriously! No one needs 84 pairs of socks. I threw 16 pairs away and put 27 pairs in a bag to give to the Goodwill. So I did keep 41 pairs, but at least they now all fit in one single drawer. BTW, this did not include the many, many pairs of pantyhose and knee hi stockings. I literally just grabbed half of them in my hand and put them in the trash! I also threw out five bras and put another 13 in the Goodwill bag. I had no idea I had over 18 bras in the drawer! I now have only 8. I have the six new mastectomy bras that have the pocket for the silicone breast form in them, and I kept 2 of my old ones. They were kind of new and pretty. You never know... On Friday, after my PT appointment, I plan to clean off the tops of my three dressers, and if there's time, I'm going to delve into the two drawers in the nightstand. They are getting scary!

Because I had an early afternoon PT appointment today, which would require removing the bandages and showering before heading up there, I realized last night that there wasn't time to go to services this morning. Mark went by himself and said he had a great time. I'll go tomorrow, which is the more important day anyway since there is Yizkor. So while he was gone, I took a 35 minute walk of about a mile and a half. It was HOT. I wore my big hat and white long-sleeved shirt. Still, I was sweating. When I got back, I unwrapped all the bandages (8 of them!) and discovered they were wet. In fact the most inner one, the stocking sleeve, was wringing wet. Hours later it was still wet! I also saw that there were about four little open sores and many long red ugly patches on the inside of the elbow, probably from rubbing and sweat. I took a much longed-for shower, then put neosporin on the sores, slathered on Eucerin moisturizer, and headed up to PT.

She did not rewrap my arm, Thank God! She agreed that I needed to keep putting some neosporin ointment on the booboos. After the manual lymph drainage, she put on a compression sleeve that is somewhat lighter and looser than the one I had at home. I am not supposed to sleep with it on, so that's a good thing. I can shower again tomorrow morning. Yay!

Following this appointment, I went to the prosthetic place to pick up my compression glove with sleeves. It worked out well that I didn't have the big bandages on because I could try on the glove. It was TIGHT, WAY TOO TIGHT. They told me to sit with it on for five minutes and see if it felt better. NO, it didn't! They agreed and are ordering a bigger size. I can pick it up next Wednesday. Glad I tried it on and didn't just go out with it.

While I was gone to PT, Mark got two more boxes emptied out of the bedroom today. He is filling up the drawers of his new dresser. It's getting better in there. It should look great by Friday.

Tonight we are going up to a lecture by an AARP representative, sponsored by the Solivita Democrat Club. I hope it's interesting.

I want to thank Evey publicly here for her fabulous Parent's Day gift. She sent us a blu-ray player, the new Star Trek movie on blu-ray, the necessary cable to hook it up, and a one month subscription to Netflix. Mark set it up yesterday, and it's just amazing! We had no idea it could do so many things and look so good. Now we are saying things like, "I bet this would look even better on that bigger, 3-D TV we saw at BJs."

Another frustrating week

I am depressed, frustrated, and a bit angry about my weight loss efforts this week. I stayed the same, 247.5. Once again, staying the same would have been frustrating enough, but because I got on the scale each day, my frustration level is even higher. I lost, lost, lost, then in the last two days gained and gained.

Here is a day-by-day chart showing calories, Weight Watchers points (31 is target), exercise, and weight. Sorry, I noticed the chart does not retain the spacing of the columns, so it's not as clear as I would have liked.
Date Weight Calories Points Exercise
5/31 247.6 1380 27 30 mins. swimming
6/1 247 1525 32 35 mins walking, 20 mins weights
6/2 247 1550 35 none
6/3 245.5 1460 23 none
6/4 245.5 1455 33 15 mins. walking, 22 mins. weights
6/5 243.7 2130 31 30 mins. swimming
6/6 246.6 1330 18 22 mins. weights
6/7 247.5

On 6/2 we had lunch and dinner out. On 6/3 we had lunch out. On 6/4 we had dinner at our friends' house. On 6/5 we had lunch and dinner out.

I think it's good to look at all of this. I went over my points 3 times, but I went under 3 times as well. WW gives you bonus points to use during the week, and I'm allowed 49. I used only 7 of those during the week on the 3 days that I went over the target number of 31. Not bad, I thought. My target calories are between 1200 and 1500. I went over that target 3 times, also, but the average calories for the week was 1547. It would seem that I was regularly over my daily calorie target. I also want to do aerobics for 30 minutes, five days a week and weights three days a week. I did the weights, but I went way under on the aerobics.

So, doing this little exercise is reducing my frustration a little. Clearly 1500 calories is my maintenance amount. That's kind of sad because I feel "deprived" keeping to that amount of calories. It is restrictive to me, but that seems to be how much my body uses to stay the same. As I lose weight, that number will only go down. UGH. My metabolism must move at a snail's pace.

So let me make some positive statements about what I can do differently this week.
1. Stay at 31 points or less on the WW app.
2. Stay closer to 1200-1300 calories per day.
3. Get my five or more aerobic sessions in.
4. Continue to do the weights three times.

Sounds easy, but it's not!! This week we are only scheduled to eat one dinner out, Sunday night. That should help the week stay on target, too.

Yesterday I had PT and got my arm rewrapped; I saw my radiation onc for my six week check up and all is well; and I had the CT scan of the head without contrast dye. We also filled out the forms and paid our membership to the new synagogue.

I think I have mentioned in the past that I have six nodules in my lungs. These were discovered on a CT scan in 2006 on an abdominal scan looking for something else that turned out to be nothing. Because of the lung nodules, I was sent to a pulmonologist who sent me for CT scans every three or four months through 2008. The nodules never changed, so I was dismissed. When I had the PET scan in February, the nodules were noted. My med onc wants to send me for a chest CT to check them. I said NO. I have all the CTs from three years with the pulmonologist. Yesterday I turned all of those scans over to the cancer center. They are sending them to the radiologist so he can compare the old scans to the new PET scan. I suspect that they have not changed. Let's all pray that I am right.

Story of my primary care doctor's office

As promised yesterday, here is the story of trying to get a scan ordered by my PCP.

On Monday, May 16, Mark and I had our follow up appointments with our new primary care doctor. We had each been asked to have blood work done, and this appointment was to go over the results. As it turned out, I had already received my results from my radiation oncologist much earlier because he had gotten a copy. My results were all fine; however, during that visit, I mentioned to him that I had been feeling light-headed, dizzy, sort of like I would pass out when I walked a lot in the heat. It had been happening since mid-March because I know I was walking around Epcot with Evey when it happened one time. He checked my ears and pronounced them fine. Then he said I should have a CT scan of the head, but I needed pre-authorization from CIGNA for that. He said his office would get the pre-authorization and then call me to set up an appointment for the scan; meanwhile, I should make an appointment for one month to follow up on those results. I left with an appointment for July 7.

On Wednesday, May 18, I called CIGNA to see if I had the pre-authorization. They had not heard from the PCP's office.

On Tuesday, May 24, I still had not heard from the PCP office, so I called CIGNA again. No, they had not heard from the office either. There is nothing in my file about pre-authorizing a CT head scan. I then called the PCP office main number, which links you to a customer representative. I explained the situation to the girl who answered. She set us up on a three-way call with the PCP's local office. I explained to her that I was still waiting for the pre-authorization. She said she would look into it and get back to me.

On Friday, May 27, the customer care girl called me back to see if I had heard from my PCP office. I said no. She said, "Do you want me to call them right now and set up another three-way call?" At that point it was 4:30 on the Friday before Memorial Day weekend. I opted not to set up the three way at that time. I said that since they closed at 5, there was nothing going to be done before next Tuesday anyway.

On Tuesday, May 31, I called CIGNA again to see if by some chance the pre-authorization had come through yet. She said, no, but by the way, you don't NEED pre-authorization. HUH??? The PCP office said I did need it and the two previous phone calls to CIGNA had not mentioned this. Well, she repeated that I did not need it and apologized for the other CIGNA reps lack of explanation. Hm...So immediately I called the PCP office directly (skipping the customer service number route) and explained everything to two different people. Now is when it goes beyond frustrating and into the weird. I explained everything and asked for a prescription to take to the imaging center when I set up the scan. She said OK. She would get the doctor to write the prescription for my ABDOMINAL scan. WAIT! I said HEAD; there is nothing wrong with my abdomen. She said, NO, I can't get you authorization for the head because in the doctor's notes he wrote abdomen. I said that in my patient instructions form that I got as I left the office (and which I was looking at right then) it said HEAD. Well, that may be true, she said, but his notes say abdomen, so that's all I can get you. I said forget it. I'm not having an abdominal scan, so just cancel my July 7 appointment. There will be no need for that now. She said don't cancel the appointment yet. She wanted to contact the doctor and get it straightened out. She will get back to me. That was the last conversation I had with the doctor's office.

On Friday, June 3, I had my four month follow up with my medical oncologist. During that visit, she asked a long list of questions about any symptoms that I might have been having in the last four months. When she got to light-headedness or dizziness, I explained this whole story. She said, no problem, I'll write the prescription for the CT head scan as well as an ultrasound of the carotid artery and mammograms. The front desk will set up all the appointments for you before you leave the office. And they did. I'm having the CT head scan this afternoon at 3:30 at the cancer center. (Of course, I have to call CIGNA and remind them that the radiologist who is going to read this is not a CIGNA plan doctor but that he has contracted with the cancer center and is entitled to be paid by CIGNA. That took months of calls after my February PET scan!)

The icing on this cake is that when I got home from the oncologist visit, there was a voice mail on my home phone from some other imaging center that I had never heard of before asking me to call to set up my appointment for my scan. She did not say what type of scan, so I don't know if the PCP office called in an abdominal scan or a head scan. It's still too early this morning as I'm typing this blog to call them back and ask. I will be doing that at about 9 a.m. this morning. I will also be telling them that I won't be using their services. Apparently the PCP office must have sent the prescription directly to this imaging center, but they did not bother to call me and tell me that they had done that.

My medical oncologist did, of course, say she cannot do primary care work. I need to have the PCP's office call her office to get these scan results and keep my appointment with him on July 7. She also said that if the results are normal she will not call me. If there is something irregular, I will hear from her office right away. That's good.

I'm thinking this really ought to be the last nail in this doctor's coffin. Everyone told us to drop this doctor after our first unsatisfactory visit back in March. This is just pure incompetence on everyone's part. We have been given the name of a PCP about 25 minutes up the road by people in my cancer support group. Everyone loves this guy and he takes CIGNA. Mark and I plan to switch to him soon.

Meanwhile the X-Men movie and rodeo were both excellent yesterday. I also had a nice half hour swim in the pool while my arm was unwrapped. It will be rewrapped today at 2 p.m. I also have my six week follow up with the radiation oncologist this afternoon right after the PT appointment and before the head scan. Three doctor's appointments in a row! I know I'm old.

PS I just got off the phone with the other imaging center. YUP, sure enough. They got a prescription for an abdominal scan. Needless to say I declined that offer. I am calling the customer rep for the PCP and explaining all of this.

Misunderstanding

I thought that I was going to wear that wrapped bandage on my arm for 48 hours, and I did. What I misunderstood was that it was going to be EVERY 48 hours for almost three weeks. Ha! Ha! The joke's on me.

I took the bandages (all 8 of them) carefully off Friday morning and meticulously rolled each one up, putting them in a plastic bag. She had said to do that, then get a nice shower (which I had not done for two days due to the bandages), then return all the wrappings to her at my 8 a.m. appointment. Done and done. That's when I learned that after the massage, she was going to rewrap me for another 48 hours. Oh, fun. I took them off this morning, Sunday, and meticulously rolled them up for my appointment tomorrow afternoon. BUT!! Now my arm is FREE, FREE, FREE from the heavy wraps until tomorrow at 2 p.m. I showered and later today I'm going swimming.

Of course, I do have to put the normal compression sleeve on. That's going to be my new normal for awhile. I was able to do it mostly by myself today. I'm sure I'll get better at it when I start doing it more frequently.

The other good news is that the wrapping helped tremendously. I noticed a big change in my fingers and hand in the amount of swelling and pain. There is virtually no more pain in my forearms at all. The wrapping works, so I'm not complaining about it. My right hand is learning to do more things pretty well. I've always been somewhat ambidextrous in that I use scissors and knives, brush my teeth, throw a ball, pour from bottles and pitchers, and brush my hair right handed. When I was still teaching, I used to erase the board right handed. Mostly my left hand is for eating and writing. Typing has been a problem, too, since I couldn't hit the keys too successfully with my left hand, so I was getting tired typing one handed. This morning I'm trying to write a big blog now because there is only the compression sleeve and gauntlet. Although I must say, that even this much typing has tired out the left hand completely. I'm now taking a break to rest it up, and then I'll be back.

OK, I'm back. I took the gauntlet off. That was just so tight that it was restricting my hand and fingers, making them ache as I typed. I'll put it back on when I'm done.

So here's what we've been doing in a nutshell. Thursday I met my new dentist for a check up and cleaning. That went smoothly. I liked the office and all the staff and I had no cavities. Yay! Then we drove an hour to Plant City for a luncheon meeting of that chapter of NARFE, National Association for Active and Retired Federal Employees. Mark was extremely active back in MD in the Laurel chapter, so he's going to get back to it now. The meeting at Outback was interesting, and the people in the chapter seem committed and active. It's just the sort of group Mark has been looking for. That night we had our free wine dinner at Lakeside and the free movie, Morning Glory, with Diane Keaton and Harrison Ford, at the Solivita Starlite Ballroom. Fun times.

Friday started off with the unwrapping at home and rewrapping in the office. Then I went to my first medical oncologist's appointment. That went very well. My blood work is completely normal, including the tumor markers. YAY! In fact, here's a great big HIP HIP HOORAY! She is pleased. She scheduled my mammogram and my next appointment in four months. She also scheduled a CT scan of the head and an ultrasound of my carotid artery, both sides. So that's another story that I'll explain in detail later. I'll do it tomorrow as a separate blog. Nothing to worry about, but an irritating story of incompetence from my PCP's office.

Yesterday we went to shul in the morning, weight machines and treadmill in the afternoon, and then dinner at the home of some new shul friends in the evening. It was an hour's drive, 42 miles, to their house. What a house! They are from Providence, RI, and they admit they UPSIZED their house. Ha ha! I have not heard anyone say that before. She is a retired elementary school teacher; he's a retired lawyer. He is also an amazingly talented writer and composer. The purpose of the dinner was to talk me into being musical director for any future shows he does at the this new shul. They have been here two and a half years, and he wants to start doing his original musicals at this shul, like he did back in Providence, but he couldn't find someone to teach the vocal parts. He showed us a lot of clips from two different shows. Mark and I were duly impressed.

Unfortunately this shul has no stage or any facilities conducive to a show. We are getting a new rabbi as of August 1, so who knows how that will change things. He is real gung ho about this, so I told him I would help him by teaching the music to the singers. His wife does the choreography and his son plays drum and guitar and sings. They were both in these productions. It's a talented family, and we enjoyed our evening with them. They are also huge Disney fans! It was a nice night, and who knows, maybe we will get one of these shows off the ground.

Today we are leaving in twenty minutes to go see the new X-Men movie followed by the Silver Spurs Rodeo in Kissimmee. Whoo Hoo! We haven't been to a full rodeo since the summer of 2009 in Dodge City, Kansas. I'm wearing my blue cowboy boots that I got from Denise. When it ends around 5 p.m., I'm going to the pool while my arm is still unwrapped.

I promise to explain the medical snafu with the PCP and the CT head scan problem tomorrow before I go back to the therapist for more wrapping. I also do not promise to blog at all for the rest of the week because until next Sunday because I will be continuously wrapped from Monday at 2 p.m. until next Sunday morning when I remove them for the day. I might type a little bit, but it's very awkward and tiring with those bandages on.

Have a good week! There will be a big blog tomorrow, I promise.

"Don't Call the Wolf."

What a great expression, "Don't call the wolf." That's what my lymphedema therapist said to me yesterday when I asked her opinion about getting in a hot tub just up to the waist and keeping my arm out of it. She told me that because of the way the lymphatic system is wired in regard to the heart, people compromised in the arm on the left side, like me, have a much higher risk of developing leg lymphedema on the left side as well, far higher than those who are compromised on the right side. Swell. She then said that in her practice she has seen it happen to many of her left arm lymphedema patients. Then she said, "You don't have any leg problems now, so don't call the wolf. If I were you, I would not get in a hot tub." OK, I won't. I have decided that she is giving good advice. I can live without hot tubs. It's sad, but it will be ok.

I wrote the first paragraph this morning before I left at 7 a.m. to go to my appointment with the therapist. Today she did much more deep massage, paying special attention to the fingers and hand. IT HURT! She said that she is breaking up fibrotic tissue that has formed from the excess protein molecules that couldn't get out. I have to admit that for the last month or so, I had noticed that the fingers hurt when I rubbed them to wash my hands, especially interlacing the fingers of the left hand with the right. I chalked it up to arthritis, but she said that it is fibrotic tissue building up. She has broken a lot of it down today if pain is any indication! LOL Then she wrapped my arm tightly in bulky bandages that stay on until Friday morning. It's awkward doing everything, still I drove the car, shopped, and lifted weights.

The therapist also gave me three pages of more exercises to do twice a day. None of them are long or hard, but there are a lot of them. I'll try to go through that sheet later tonight.

Soon we are having our shirataki noodle spaghetti dinner, and then we are going to shul for a special yahrzeit minyan. I don't remember ever going to that kind of minyan. Still, we were asked if we would come because they are concerned that they won't get a minyan, so, of course, we said we would come.