Shabbat Rest

Yesterday, Shabbat was everything it should be! We went to our new shul, where they did have my check cashed! My name was posted on the board and announced at the end of services as having sponsored the kiddush in honor of my birthday. Of course, it was the Saturday before my actual birthday (August 6), but we'll be in NC next Saturday.

After enjoying the light kiddush, which I must say is NOT as good as the kiddush that Mishkan Torah puts out, and talking with the congregants and new rabbi and his wife, we drove home. Then we did something very unusual; we stayed PUT! We did not go out the rest of the day. We rested all day.

I don't mean we slept, although Mark did take a short nap in the bed and I dozed off in a chair for about 10 minutes. I mean we enjoyed the house and leisure activities. I read A LOT. I had just said to Mark that I never seem to read anymore. I made it a point after lunch to sit in my great-grandfather's chair in the living room and get into the Macguire book, Mirror, Mirror. It is really fun reading. I also spent some time getting a start on my new jigsaw puzzle. In the evening we finished the first Harry Potter movie and then watched the second one when it came on at 8 p.m. I found that if I lay crosswise across the foot of the bed in my machine, I can also see the TV. This is a great find! The 66 minutes in the machine went quickly watching Harry Potter.

Today we are going to try something new. We have tickets and reserved seats to go see the new movie, Cowboys and Aliens, at the new Fork and Screen part of the Downtown Disney AMC theaters. This means we will have lunch served to us at a table while we watch the movie. Should be fun and interesting. After that, we plan to go to the Disney Studios park. Mark wants to try to ride the new Star Tours a second time since there are 54 different versions now. We also are going to see the new Lights, Motor, Action stunt show since it has been changed to include the Cars characters. Chances are pretty low that it's going to rain this afternoon, so that makes today a good time to go to a park. We haven't been to one since Lowell and Emily left. Mark is getting WDW withdrawal!

Success

Short version here is that when I took the bandages off yesterday afternoon, my arm was smaller. It works, and now I have measurable evidence. Here are the results:
Before/ After
18 and 18 (wrist, 17.5 by the therapist on 7/14)
25 and 23.
29 and 30 (this is the only one that went up, no idea why)
36 and 34
40 and 39
45 and 42.5 (41 by the therapist on 7/14)

So it is not as small at the wrist and upper arm as it was on the day I left therapy, but it's better than the day before the bandaging. I did the machine last night and felt good during and after the treatment.

I enjoyed my day yesterday. I went to the cancer support group, which I always enjoy. It is a wonderful group of people. Then Mark and I went to the Upper Crust, our Solivita pizza restaurant. We had custom-made salads and one slice of cheese pizza each. I also took the time to wander through the Solivita library, which is next door to the Upper Crust. It's a volunteer/honor system library of books donated by residents. I wrote down the name and phone number of the woman in charge because I have three or four boxes of nice books I brought down here just to donate. I took out a James Patterson paperback and a Gregory MacGuire book, Mirror, Mirror, the "story" of Snow White and the Seven Dwarfs, somehow mixed up with Lucrezia Borgia. I have read about 30 pages so far, and it's getting off to a great start! MacGuire wrote Wicked, which I loved. I recently found out from Emily S. that he wrote two other Oz books since then and a fourth is on its way soon.

After I got my books, I drove Mark to the Palms so he could do his weight-lifting. I have done weights with my arm in a bandage, but I really don't like it. This time I sat in the beautiful lobby reading my new MacGuire book instead. The pool was our next stop! The weather was kind to us, with just a little thunder and some light rain for a few minutes. It did not stop us from having a good time in the pool. In fact, I swam for 33 minutes straight and was feeling pretty good about that. I took the bandages off and had Mark do my measurements just before we got in the pool. When we got tired of swimming, we read our books and then went to the bar for a nice Jameson's Irish whiskey on the rocks. At 6:30 we met some new friends for dinner at Lakeside and had our usual glass of wine and pan-seared grouper dinner. This time we invited Randy and Joan back to see our house. They also live in Solivita, so it wasn't far from their house. We had a lovely time showing off the house and just schmoozing in the living room until after 10 p.m. Wow! Life is normal and life is good.

This morning, before I sat down to write this blog, I finished my jigsaw puzzle. It's "View of Oyster Bay," a replica of a Tiffany stained glass window. I bought the puzzle in the Morse museum gift shop in Winter Park after visiting the Tiffany exhibits there. Now I'm excited to start another puzzle. Oyster Bay was just 500 pieces, so it was relatively easy. I have two 1,000 piece puzzles in the house that were gifts over the years. I got one out and I'm about to break it open some time today. I think it will take me FOREVER to do it, but then does time really matter for something like that? I don't think so. I feel relaxed and happy sitting at the table on the lanai every morning and sometimes in the evening, sipping coffee, enjoying the views out of the lanai, and looking for a few pieces.

PS I'm not sure what to do with the puzzle now. I guess I will take it apart and put it back in the box. If anyone reading this blog is interested in having it, I would be more than happy to ship it to you.

Measuring

This morning I had Mark measure my arm. My therapist gave me a paper with the measurements from my last day. Unfortunately, I never saw the first day's measurements, but she did comment on the fact that the last day's numbers were bigger than the first day's. I think that is one reason she recommended I get the Flexi-Touch machine.

The machine's paperwork included a form to mark down my arm measurements for a few weeks. I was told by the trainer that I will be asked to submit that form in five or six weeks. I should have done it last Thursday before I ever used the machine, but I didn't. I wrote today's measurements down on the "baseline" column. There are five more columns to write weekly measurements on.

There was one wrinkle. My therapist took measurements at every 4 cm up my arm, starting at the wrist. The Flexi-Touch form asks for them at every 10 cm. So with Mark's help and a tube of lipstick, we marked my arm at every 10 cm, but just for grins we also marked at 4 cm and 8 cm up from the wrist. The final measurement, right at the top of the arm, is at 44 cm up from the wrist and must obviously be the same as the last one the therapist got.

So the bottom line is that my arm is significantly bigger today, July 27, than just two weeks ago on July 14. Here are the numbers:

July 14 by therapist, starting at wrist and going up every 4 cm
17.5 at the wrist
19
22.5
25.5
28
29.5
29.5 (no I didn't accidentally type the same number twice)
34.5
37.5
39.5
41 at the top, under the armpit

July 27 by Mark, starting at wrist and going up every 10 cm (but including at 4 and 8)
18 at the wrist
19 up 4 cm
24 up 8 cm so these three compare to the first three by the therapist
25 at 10 cm
29
36
40
45 at the top, under the armpit, comparing to 41 by the therapist

In general, I think I need to do arm bandaging TODAY!! Since I don't plan to go swimming today, I am going to go wrap my arm in about half an hour, leave it on all day and night, and half the day tomorrow. We might go swimming tomorrow afternoon. If not, it might stay on even longer. Then I'm going to measure again and see if it works. By wrapping my arm today and for the overnight, I will not be able to use the Flexi-Touch machine tonight. I'm hoping Mark is willing to take measurements again when I take the bandages off so there is a comparison.

I was told by the therapist that only the wrapping is really something that is going to reduce swelling. I think her manual drainage, since it's so much more intense and thorough than mine, also reduced swelling. All the things I do for myself can only keep me at a status quo. I'm not sure that is happening for me since I'm definitely bigger since I left her office.

She did say that numbers were not the only thing to go by. By looking at the skin and feeling the hand and arm for tightness as well as checking the hairs on my arm, she could also get clues as to the severity of the swelling. I must admit that I never noticed anything about the hairs. They always looked the same to me and the same as my other arm. I am not sure I ever noticed the variations in skin texture and color either that she talked about, other than my right arm is more tanned since it has been exposed to the sun while the other one is concealed in bandages or a compression sleeve. The only thing I thought I was able to pick up on was the feel of it. I do think I can tell when my hand and forearm are swelling by touching it; however, I'm apparently not doing enough to get it to go down successfully, even with the machine.

Bandaging must be the answer, so now I'm going to try hard to do it more often, as much as I don't want to do it! If it works, then I have to accept it. Right? I'll let you know.

Line Dancing and Lunch out

It's Tuesday, which means Line Dancing Day. We are heading up in about twenty minutes to sweat our butts off. That's good for us, right? We are following that up by lunch out and a dip in the pool, if the afternoon rains hold off long enough.

It's also weigh-in day. I'm 247.4, which is down 2.1 pounds. I guess that's good because I had gone up and then stayed up the last month. I hope I can go down a bit in this upcoming week before we start our six weeks of travel. It's really hard for me on travel and eating out three meals a day.

Meanwhile, this morning I had a great conversation with my friend Robin from MD. What fun to chat about "stuff" on the phone with a girlfriend. That's something no one should take for granted.

The Flexi-Touch machine worked just fine last night. I did not have leg cramps, relaxed enough to doze off during it, and had to have Mark wake me up to tell me it was done. I think that's the right way to do it!

I'm getting just a little concerned; however, because my arm seems to be getting bigger even though I'm doing all the things I'm supposed to do: the machine, manual drainage 5-7 times a day, my 10 minute upper body exercise routine every morning, wearing the compression sleeve and glove all day, staying out of hot tubs, not lifting anything over 10 pounds. I tried to take a few measurements on my own today, and they are definitely 1-2 cm bigger than what the therapist wrote down on my last day with her, July 14. Later today, I'm going to have Mark take them and try to be more accurate. If it's true that I'm that much bigger in less than two weeks out of therapy, I will have to think about wrapping myself up in the bandages more often, maybe every night, or even wear it for a few days. It's the most therapeutic thing. Everything else is just trying to keep it at status quo, but if that's not working, only the bandages are going to make the swelling go down significantly, or going back to the therapist. I do NOT want to do that. If I do have to go back, I don't want it to be in less than six months to a year's time. I really want to be able to manage my condition by myself.

Easy going day

Wow! Today I had such an easy day. I spent the morning going through photo albums and old photos. I'm looking for some specific old photos, but I found none of them. I really enjoyed looking through everything, though, and I have plenty more to look through another day. After lunch, I played Mah Jongg. I won the very first game I played, and then I had no luck at all. One of the ladies won 6 out the 7 games she played. Unbelievable lucky streak for her today! We went to the gym after that. I only did the weights because I'm still afraid of hurting my thigh muscles. I want to do the Flexi-Touch tonight, and I'm hoping there are no leg cramps. And that's my day!

Why not tell me what you did today?

Old friends, bad night, and tequila

Friday was spectacular. Mark's high school friend from Brooklyn, NY and his wife have a timeshare in the Disney area. They drove over to spend the day with us and see our new house. Now that we live here and they vacation here fairly regularly, we realized we will probably see each other more than we ever did in the past.

After showing them the house and catching up on our families' news, we took them on a drive through the community, ending at the restaurant Mosaics for lunch. They are also looking to move to an over-55 community in a few years when they retire. Since they have lived on Long Island for over 30 years and their children are still in the NY/NJ area, they have been looking at a place in NJ. Still, they were interested in looking at our community, its amenities, and the model homes.

Looking at the models turned out to be a comedy of errors. First, I thought I could just go there on our own. Nope, there are gates there now operated on a transponder. So we went to the sales center and asked to be taken over there. Nope, the lady behind the counter is the one to do that, but it's lunch time and she's alone and the only one covering the desk. Can we wait 20 minutes? Sure. We killed the time in the design center looking at cabinets, tiles, and plumbing fixtures. It was fun. Finally, it's time to jump in the golf cart and be escorted to the models. Hm...we looked at the two biggest ones and the lady returned to say a storm was coming and we had to leave. Sigh...at least they saw two models.

We went back to the house for some snacks and more fun conversation before they had to leave. Their daughter was now in town and waiting for them to return and take her out to dinner. What a great time!

Yesterday was also good in that we did everything we planned to do, which was go to shul, exercise, and watch a lot of TV, including the first Harry Potter movie (boy, did they look young, and cute!) Unfortunately, I think I overdid the treadmill. I walked 50 minutes, burned 288 calories, and walked at a 3.5 incline for more than half that time. I was sweated up and feeling proud of myself.

Sadly, it also brought me monstrous leg cramps all night long. I started off having to end my Flexi-Touch session about five minutes early because the first one started while I was wrapped up in the machine. It was in the inner thigh on the right side. OUCH! That was the worst one I ever had. I had to have Mark help me up, and I was scrambling to get out of the machine's garments. I have never screamed and cried so hard in my life....except possibly for kidney stones once. I could NOT find a way to stretch that muscle and get the cramp out. Mark actually called Evey on the phone for some advice. I drank some water, ate another banana, and just kept trying to get it stretched. After awhile, probably 10 minutes but it felt like an entire day, it started to relax. Because I was afraid to lie back down on the bed for fear it would cramp again, I stayed up reading until 1 a.m. and then tried to go to bed.

At 2:08 I hopped out of bed with the exact same inner thigh cramp, but on the OTHER leg. OUCH! I was somewhat more successful in getting this one to calm down; it didn't seem to take as long or be quite as painful as the first one. I went out and sat on the lanai, looking at the bright moon and eating one of Mark's low-carb ice cream bars, waiting to be sure it was really gone. Around 3 a.m. I tried to go to bed again.

At 4 a.m. I hopped out of bed with a monster cramp back on the right side, but running from the top of my foot up the front of my shin to my knee. Weird, but relatively easy to straighten out. I drank some more water, sat in the living room for awhile, then tried to go back to bed around 4:30.

These are the nights when I am REALLY GRATEFUL there is no work to do the next day. I would have been very cranky if I had to be teaching school today. LOL

As it is, I slept until 7 a.m. and felt pretty amazed when I looked at the clock. Mark made me our usual delicious Sunday morning breakfast of three low-carb pancakes and two scrambled eggs. Now we are heading off to Downtown Disney to see the new Captain America movie. This will be followed up by lunch out somewhere and an afternoon at the pool, if there is no rainstorm.

I took a few pictures of Mark with Vinnie and Annette, but I don't have time to upload them right now. If you are reading this blog without pictures, check back later tonight. I should be able to have them up then. Right now, we have to head out for the 10 a.m. movie.

PS Just in case you didn't know? It's National Tequila Day!! If you like such things, be sure to celebrate with a shot of tequila or even a Margarita. Mark and I plan to do that later tonight FOR SURE!!

Flexi-Touch

My machine arrived Wednesday, so the therapist came to train me on it yesterday and helped us unpack it all. It's pretty daunting to look at all the hoses and garments. There are three pieces to put on, but the chest and arm piece are now velcroed together to my size, so I can pull it on as one piece in the future. The hoses are connected to the machine, and they don't ever have to be unplugged either now unless I need to pack it to travel. I'm thinking I might not ever do that. It would take up my entire small suitcase.

She got me all connected and had time to run about 30 minutes worth of the 66 minute procedure while she talked to us about it. I must admit that the sensations were pleasant. It's kind of hot because it's thick, fuzzy material. My arm was sweaty when I took it off.

She stayed about an hour and a quarter, had me sign some papers, told us to watch the DVD that came with it, and left. We had to run out because we were already late for meeting our friends for dinner. When we came back from dinner, I climbed into the garments and ran the whole program. Just about the time I was going completely stir crazy from lying still on my back, it ended. Fortunately Mark was able to prop the laptop up on his tummy, and we watched our Star Trek: Enterprise episode for the day. It was having problems with downloading, so it really took up almost the entire time period.

When I took the garments off and stored them and the machine all under the bed, I realized that not only did it feel very pleasant, but it also seemed to have worked. I have not been wrapped in the big bandages since Saturday night when I removed the last set put on by my therapist. I had spent a large part of today not even wearing the compression sleeve because I went swimming and had my mani/pedi. I was starting to feel a little pain in three of the knuckles of my hand and a little fullness in the back of the hand and forearm. I did the manual drainage five times yesterday, but I still felt that it wasn't quite enough. The machine definitely made a difference in how the arm felt. Getting a good result from the machine will definitely make me want to use it frequently.

My own lymphedema therapist put in my treatment plan that I should do it twice a day. I really don't expect to have time to do that every day. I'm going to try for once a day. The trainer said that it would be OK to do it once a day, in fact, it would be OK to skip a day or two. If I don't take it on the plane to California in August, I'll be skipping two and a half weeks. I might not even take it to Boston. In that case I would not be using it for nearly a month and a half. That might not be safe, but our car will be SO packed on the way to Boston that I just don't see how I could bring it. We'll see.

Today we are going to have a wonderful time with some old friends down from NY. We plan to take them out to lunch at one of Solivita's local restaurants and show them the community. They have a time share in the Orlando area and have been coming down to this area every summer for years. Now they are thinking about retiring in another two years or so and moving into an over-55 community. Naturally, we are going to try to sell them on Solivita!

Boom Boom and Good News

We set out alarms for 5:30 a.m. so that we were sure we would be awake when the final shuttle, Atlantis, went over our area. At 5:56 a.m. we heard the distinctive double Boom Boom as it traveled at super sonic speeds through the atmosphere. We then turned on NASA TV to watch the landing live. What an awesome accomplishment and a little bittersweet knowing it was the end of an era.

I had great news yesterday in the mail. Drew Medical, where I had my mammogram and ultrasound last week, sent me a letter stating that both tests were normal and showed no signs of cancer. WHOEEE!! That is the news one wants to get!

It is tinged somewhat by knowing that in April of 2010 my last mammogram also came back normal. Two months later I found the lump by myself in a hotel room on vacation. Well, I prefer not to worry about that right now. I am taking this as the good news it is!!

Our day worked out perfectly yesterday. We delivered the bra to the seamstress, had lunch at Chipotle (OK, but not as good as Q'dobas), went to the lecture on GYN cancers (I'll talk about that later), did my weight routine at the gym, ate an early dinner, and drove to Lakeland for the ballgame where the home team won 9-0. There were only 5 NARFE people there, but we sat together and had a great time.

There was a little miscommunication on the ticket price. It was $3 for the ticket and another $6 for an All-You-Can-Eat special night. We didn't intend to buy the dinner part because we could only eat the chips and soft pretzels. Unfortunately, the leader of NARFE had already bought everybody's tickets and dinner package when we got there, so we paid him back for it. Then we proceeded to eat our weight in chips and soft pretzels. Well, to be completely honest, Mark ate one bag of chips worth $1; I ate five soft pretzels worth $15. So we got our money's worth. Because we had told the leader that we didn't want the package, he had actually tried to get his money back for them, but the ticket seller said he couldn't have it. The leader of NARFE felt bad about that. Unbeknownst to us, he went to the management, complained, and got the money back, which he returned to us. So we ate all those pretzels and chips for nothing and for free. I felt a little bad about that, but the pretzels really were DELICIOUS!!

The lecture on GYN cancers was presented by a young lady doctor who does robotic assisted surgeries on such things, as well as more traditional surgeries. She's a GYN Oncologist at the Osceola hospital, right across the street from my cancer center. She had an excellent power point presentation on the three main types of cancers she treats, how many people get them, how many die from them annually, signs and symptoms, prognosis, treatments, all kinds of things. She also took questions.

I asked her three questions:
1. Should my 24 year old daughter get the Gardasil shot, and should her fiance? It is now being given to young men ages 9-26 to prevent genital warts. She said absolutely they should even though they are near the end of the age limits because it will basically prevent her from ever getting cervical cancer or genital warts.

2. Would a prophylactic complete hysterectomy for me, because of increased risk of those cancers after having lobular breast cancer, be covered by insurance and would her practice perform such a surgery? She hedged her bets. She didn't really know the answer about the insurance and recommended I call them. She would perform the surgery if I insisted, but she would want to talk to me all about it and discuss the risks/benefits. Obviously, those are the right answers. She did say that if I got tested for the genetic mutations, BRCA1 or BRCA2, and came up positive, the insurance would most definitely pay for it. I have been told I didn't need to get tested because I had none of the risk factors like strong family history.

3. Should my daughter get tested for those genes? She said probably not. She seemed to think her risk was no higher than the general population based on the little that she knew about my situation, but she said more discussion with a doctor might be necessary to decide for sure.

Interesting day.

Today I am going to the cancer support group in about 30 minutes, then some refreshing pool time and lunch out, a mani/pedi, a very important training session on my new Flexi-Touch lymphedema management machine at 4:30 (lots about that another time), and dinner at Lakeside with free wine and two new friends. Wow! Another good day in paradise.

More fun

I did, indeed, set the alarm today for 6 a.m. I couldn't just be a slug-a-bed two days in a row. On the other hand, I snoozed that sucker until 6:40.

Today's agenda is ambitious. Around 9:30 we are driving north to Winter Park. The seamstress who altered Evey's gown and has created my MOB dress has a shop up there. I have to deliver one of my bras to her, and she will cover the sides and back with the green silk fabric. She was unable to make the back and arm holes high enough to hide it, so she said she can cover the bra to match. This will make it nicer looking when I take the jacket off during the reception, which I know I will have to do because it will get too hot. That little chore will be at least two and a half hours because it's so far away, north of Orlando.

At 2 p.m. I have a reserved spot to attend a lecture in the Riviera Fitness center classroom. Once a month the Osceola Medical Center sends a doctor to talk about some topic of interest. The room is small, so you have to register in advance to get in. Today's topic is from an OB/GYN Oncologist talking about ovarian and uterine cancers. This is of special interest to me since my kind of breast cancer, lobular, comes with a somewhat elevated chance of also developing these cancers. I am considering a complete hysterectomy as a preventive measure, so I'm hoping to ask this doctor today if this is something that a doctor would consider doing. So far, I have not selected a GYN doctor. I'm several months past due for that check up now.

As soon as I get out of the meeting, Mark and I are driving to Lakeland, a bit over an hour west of here into the heart of our county, Polk. We have tickets to see the Lakeland Flying Tigers, Detroit's Class A minor league team, play the Charlotte Stone Crabs, the Tampa Bay Rays minor leaguers. They play in Joker Marchant Stadium, which is also the Spring Training stadium for the Detroit Tigers. This is a NARFE sponsored event, so our new Lakeland chapter is attending. Mark is starting to get active again in this chapter, so it should be a lot of fun tonight.

I'll let you know tomorrow. Maybe there will be pictures. In fact, I'm SURE there will be pictures.

Good day

For the first time in a very long time, I did not set the alarm clock this morning. I got up at 8:30! I had a very slow, easy-going morning until it was time to go to the Beginner Line Dancing class at the Riviera Fitness Center in the main part of Solivita. This was only our second time going there, and the instructor was different. We learned that the girl we saw a few months ago when we went had been there for a year but had left for a different job. It appeared that the lady leading it today was just a volunteer Solivita resident. While we were there, someone came in and announced that an actual teacher has been hired and will start in a few weeks. That should be fun. We worked up a sweat doing dances to about 8 songs. Some were harder than others, but they were all fun.

When we came back, we had a late lunch, and then Mark really got busy...or as my mother used to say, "Put the ass of business on." He emptied two more boxes from his den, which is really starting to shape up. Then he went out to the garage and rearranged everything in such a way that I can get my car in there next to his. Whooeee!! I didn't really think that was possible.

What was I doing while he did all that work? Working on my jigsaw puzzle out on the lanai, playing on my phone, and napping in the living room. Very tough day!

We had an early dinner then headed out to the Travel Club meeting. Tonight they ran a video on the making of the Crazy Horse Monument in South Dakota. I had never heard of this monument, but it's going to make Mt. Rushmore look like a pebble when it's finished. The same family has been working on it for something like fifty years. It looked like it might take another fifty to finish. Mark and I would love to get out there and see it in person some day.

Now we are home and watching the Orioles beat the Red Sox. It's the bottom of the eighth and the O's are ahead 3-2. We are just hoping they can hold this lead. Whoooo! The Orioles just hit a two run homer, so now it's 5-2. Sweet. Whooooeeeeeeee! Back to back home runs! It's now 6-2. This is unbelievable.

Today is also weigh-in day. I wasn't expecting much, so I was happy to see that I had maintained my weight for the week at 249.5. Not a good number, but there was a lot of eating out with Lowell and Emily here. I was not watching what I ate, so I should be grateful to have stayed the same. I had a pretty good day today and an hour of line dancing. Maybe I'll be down a bit in the morning. I'm basically just going up and down the same five pounds all the time. We moved down here on February 1 at about 250, so I am holding steady. That is not my long range plan, for sure!

YAY!! The Orioles BEAT the Red Sox. Very nice.

Such a Wonderful Time!!

This morning we took Lowell and Emily to the airport. They have already landed safely and are probably at the Harry Potter movie right now. Wow, we had a fabulous time and miss them already.

Friday they spent the day at Universal Studios. They loved the Harry Potter world and the rides. They had the time to go back and forth between both of the Universal parks. The only bummer that day was the rain. Although they had some rain ponchos in a backpack, when the rain actually started, everything was in a locker. They got soaked!! Still it did not prevent them from having a great time.

Saturday we all went to the Magic Kingdom. This was Emily's first visit there. She and Lowell had planned out everything they wanted to do and they did it all!! Fast passes made that possible, plus their detailed plan and willingness to walk a lot. I will admit that I sat on a bench waiting a lot. I didn't want to ride anything that might get my bandages wet, and I didn't want to ride anything that would jolt my head too much. I still had plenty of things to do with them, including Pirates of the Caribbean, Peter Pan, Stitch's Great Adventure, Jungle Cruise, Carousel of Progress, Haunted Mansion, not to mention lunch, dinner, and an afternoon Dole Whip break! It didn't rain either, so we all got lucky with that.

Sunday was an ambitious day! We started out at Disney's Hollywood Studios and then ended at Epcot. Again, they had done their homework and made a plan. For the most part the plan worked great and they rode everything they wanted. It got a bit scary in the afternoon. Mark and I had left the Studios early to go to Epcot and get them Fast Passes for Soarin'. It's nearly impossible to do that without the pass and the passes go quickly. We got them a timed pass for the hour from 1:48 to 2:48. Lowell and Emily stayed at the Studios through lunch and got everything they wanted done (except the Muppets 3-D), then caught the boat for Epcot. The boat was lovely, but S-L-O-W. Slower than anticipated. Slower than the slowest Ketchup in the West! They rushed off the boat back in France and ran past England, past Canada, past the hub, and into Future World to the Land. They ran into the Land at 2:47; we took the backpack and tossed them the Fast Passes; we gave them quick directions on how to run down there; they MADE it with NO TIME to spare!

They loved Soarin', and it was their first time to do it. It was totally worth the run.

We had a great dinner at Marakesh in Morrocco, which included a belly dancer. She was very entertaining, but the audience was decidedly unimpressed or not paying attention. Almost no one applauded. Our table gave her a little applause, but that was about it.

After dinner, I staked out a great spot at an outdoor table with four chairs by the lake for the fireworks show. We had not watched that show in years and years, so we had not realized that a lot of it was different, including the name. I'm glad we stayed, and once again there was not a drop of rain; the weather was great all weekend. This was Lowell's first time back in WDW in 11 years. The last time he came, he and Evey had their picture taken and mounted on the granite walls at the entrance to Epcot as part of the Leave a Legacy program. We had not realized that he had NEVER seen that picture. It was wonderful to end the evening by finding the picture of him and Evey. He was 21 and she was 13. Wow!

This morning we were all tired and dragging from the busy time, but Lowell said in the car that as tired as he was, he wished he was going to another park today instead of going home. Maybe next time they'll get to stay longer. We didn't even have time to take them to any of the pools in our community or any other Florida attractions.

It was wonderful having them here. It felt empty coming back to the house after dropping them off.

I ate a quick lunch and then went to play Mah Jongg. I had not had the chance to do that in a long time either, and I won two games. It was fun! We had 8 ladies all together, and they are a wonderful bunch! I really enjoy playing with them.

Well, it's time to go to the gym and do my exercises now. One of the ladies asked me if I ever had any time to just relax, and I had to say NO. It doesn't seem like I do. Maybe too much time on my hands wouldn't be such a good thing anyway, but some days it does sound like it would be delightful to get up and have nothing in particular to do and nowhere to go! Then again, maybe it wouldn't! LOL

They're Here.

We picked Lowell and Emily up at the airport last night right on time and headed to Raglan Road for dinner. We arrived about 45 minutes early, so there was time to stroll around Downtown Disney for a bit, then have a drink at the bar while we waited for our reservation. Dinner was spectacular. Thanks, Lowell and Emily, for treating us to dinner!

This morning they took off for a day by themselves at Universal Studios. I hope they have a fabulous time. While they are gone, we might try to go to the new Harry Potter movie. If we can't get in, we will go to the new Winnie-the-Pooh movie instead.

We are watering our new sod this morning! It is very strange because there are water restrictions here right now, so officially, other than the automatic sprinklers twice a week with reclaimed water, we are only allowed to water on Fridays. So it's Friday, and we have sprinkled for two and a half hours this morning, giving it a great soaking. We bought the new sprinkler at Wal-Mart yesterday just for this. What is strange is that when they put down the new sod, they told us to water it everyday so it didn't die. Well, I don't think we can do that, so hopefully some rain will happen and take care of it. There is a 50% chance of afternoon storms every day, but they are so regional that it doesn't always happen over our house. Hopefully the sod will live.

My mammogram yesterday was amazingly comfortable. The technician took a lot of care to position me appropriately, and I don't think she squashed with as much pressure as they used to do in Maryland. I was very pleased. I also had an ultrasound. Hopefully these will be normal looking. Of course last year my mammogram was normal, too, and we see what that got me.

Then I had my LAST lymphedema therapy appointment. I felt a little like I was getting out of school. Nice. I am wrapped up professionally for the next few days. I hope that my own maintenance procedures work. I did the manual drainage seven times yesterday, but so far I only did it once today. Better do it again when I finish this blog.

The only other thing I'd like to say today has to do with what women are told by their doctors when they are trying to make decisions about treatment for breast cancer. I just read a thread about this on my online cancer support group. I was given mastectomy, even double mastectomy, as an option as well as lumpectomy and radiation, which is what I chose. I chose this because it seemed like less trauma to the body, less surgeries and pain afterwards because there would be no reconstructive plastic surgery, and less risk of developing lymphedema. I was told that the chances of long term survival were identical with either procedure, but that lumpectomy/radiation was less traumatic to the body with an easier recovery. I was told I was an excellent candidate for lumpectomy and radiation, so I chose that.

Well, I have lymphedema anyway, so that didn't work. And on the day that I met with the radiation oncologist, I was finally told of the risk of radiation, that in 10-15 years I might develop bone or lung cancer from the radiation. At that point, it's too late to change your mind. The thread on the cancer group is that it is very common for doctors NOT to counsel patients on the risks of radiation back in the early decision-making stage. We are routinely not told about that risk of additional cancer until after the lumpectomy is over. In fact, the chemo was over also by then. I wonder if I would have made a different decision if I'd thought about that. I think that if I'm 70 to 75, relatively healthy, enjoying life and maybe grandchildren, and THEN develop lung or bone cancer from this decision, then I will be VERY ANGRY!! Wouldn't you be?

Exciting Day!!

The most exciting thing about today doesn't happen until 7 p.m. tonight when Lowell and Emily land at the Orlando airport. They are staying until Monday and will go to Universal Studios to see the Harry Potter land as well as three of the four WDW parks. Tonight we are going to Raglan Road at Downtown Disney for a late dinner. We have been waiting for this trip for a long time. It's their first time down here to see the house. I can't wait!!

It's also an exciting day because at 8:30 this morning I am going to have my first mammogram since the breast cancer diagnosis. My last one was April of 2010 and it was normal, followed by the lump I found two months later. Well, this should be interesting today. I think it's going to hurt more than normal on the cancer side. I don't know that I trust anything it shows now anyway since lobular cancer doesn't show up on mammograms. The procedure now is for me to have mammos every six months on the affected side for two years and just once a year as always on the unaffected side.

After the mammogram, I go to the Physical Therapy center for the last time. This is most definitely my last trip to the lymphedema therapist. She's been amazing at treating me and teaching me. I will come out today with a complete arm wrap of the 9 bandages, done by her for the last time. After today, it will be up to me to wrap at night when I feel it is necessary. At my appointment on Tuesday, we filled out and signed all the paperwork to get the Flexi-touch machine. The wraps are custom made to my measurements, so when it's ready the company will be bringing it to the house to deliver it and train me on how to use it. I don't have any idea how long that will be, but most likely it will not be until mid-September when we get back from all the wedding festivities. I hope I can maintain myself well enough between now and then with just my own manual drainage, compression sleeve, exercises, and occasional wrappings.

Time to shower and get dressed so I can get this exciting day started!

Feeling Normal

I had a beautiful day today! It started out with a trip to the bridal salon for my second dress-fitting. Miss Kim, the seamstress, is truly a miracle worker. She took the size 20 dress and turned it into a size 30 or bigger. It was HUGE! So there was a lot of pinning up to be done to cut it back to my size, probably a size 24 range. I was actually surprised at how huge she had made it. The really good news is that the jacket also fit. She didn't think it would, but she did it somehow. I love it. So she pinned and pinned and also measured for the hem. I go back on August 1 to get it, and it should be perfect! Of course, now I can NOT gain any weight before the wedding; however, I better not LOSE too much either. Interesting challenge for me.

After that I did a little shopping for some odds and ends that I needed to pick up. Then it was time to go to the pool! OH, I was really looking forward to that. When my arm is in the bandages, there is no swimming. I knew that tomorrow it would get wrapped up again and stay that way for a few days. It was just wrapped yesterday, but I took it off for the dress fitting. As long as it was off, I wanted to swim.

I relaxed in the pool for about 15 minutes, but because it was just noon, I knew I couldn't stay out in the sun too long. At about 12:20 or so, I sat in the shade, sipped a diet Coke, and waited for Mark to come and have lunch with me. Once we had lunch, we swam and enjoyed the pool time until about 4 p.m. What a wonderful afternoon!

When I can lounge at the pool with no bandages on, I can feel normal. I can do something that I love and not think about anything else. So much of the time I feel handicapped. Lymphedema is a very demanding condition: wrappings or compression sleeve, moisturizing the skin, remembering to cover up in the sun with a shirt, staying out of hot tubs, manual lymphatic drainage 5-7 times a day, and seeing the therapist 3 days a week. The therapy ends tomorrow, but I will be getting the Flexi-Touch machine soon. I am supposed to hook up to that for at least one hour a day. Yesterday the therapist said twice a day would be better. Sigh. Much of my daily time now is devoted to managing this condition. In between managing the condition, I will still have time to lounge by the pool, drink a diet soda (or sometimes a Bourbon Slushie!), and have lunch with Mark. Life is beautiful.

Seattle fun

Where should I start? The trip was everything and more we had hoped it would be. Our flights were smooth and uneventful. Mark was able to book us actual seats on those legs that appeared to be stand-by, so there were no worries. We walked all around areas of Seattle near our hotel and wedding venue Friday afternoon, Saturday, and Sunday morning before catching the overnight flight back to Orlando this morning. Whew! It was exhausting, but so much fun.

I have posted five pictures, which seems to be all I'm allowed to ever put up at a time.
1. My friend Denise, the mother of the bride, and me;
2. View of Mt. Rainier from the 17th floor of the Norton Building, the wedding venue;
3. Ally and Brian, at the end of the wedding;
4. Me at the memorial to fallen firefighters;
5. the entrance to the Seattle Art Museum.

We had a lovely walking tour Saturday of things in Pioneer Square that we didn't do in '07 when we came up for an Alaskan cruise. We stayed at the same hotel because we enjoyed it so much back then. It was also only four or five blocks to walk to the wedding from there. I guess all the walking kept me from gaining weight because we sure ate well! We also noted many things we could do on any future visits to the area.

My wrappings caused no particular problem with the TSA. They didn't even want to see the note from the doctor. At both places they rubbed something around the top, bottom and along the middle of the bandages and placed that something in a machine. They were looking for explosives, but I provided none. LOL In Seattle they also swabbed my shoes for explosives. It wasn't too bad and didn't take too long.

I took off the bandages Saturday morning and wore only the compression sleeve to the wedding. I rewrapped myself Sunday morning for the return flights. I think I did pretty well. My therapist did not seem too upset with me when I saw her today! I only have two more visits with her and then I'm completely on my own.

Usually my big bandages engender questions about what happened. When I say lymphedema, I can see both a lack of comprehension and lack of interest. Most people just have no idea what it is. At breakfast in Seattle Saturday morning, I had the opposite happen. A lady came to me, put her arm on my shoulder, and said, "I see you have lymphedema." Wow! What a conversation starter. We talked for half an hour. She had had BC 20 years ago, which a few years after spread to her brain. She beat it. She also developed lymphedema, tried the therapy that I am doing, and opted to let it go. Sadly, her left arm is about five times bigger than the other one. I also noticed she barely used it. She never lifted it up to pick up anything at the buffet. She was with a girl friend who was in active treatment for BC. She had recently had a double mastectomy, completed her chemo, was in the process of having tissue expanders for her plastic surgery, and is facing 36 radiation treatments when she gets back from her Alaskan cruise. I hope it all goes well for her.

The lady with lymphedema mentioned that she had recently heard about lymph node transplants. Apparently they have moved someone's lymph nodes from one part of the body to the place where they had been removed in order to get the lymph system flowing normally again. Wow, that sounds interesting.

So much to do in the next few days, and then Lowell and Emily are arriving Thursday night. Can't wait!!

Where is Wyoming?

I thought I would post a few more pictures from the wedding showers today. Enjoy!
1. My cousin Irene and Lowell
2. Evey and Dana, the MOH
3. Leslie and me, the two moms
4. The Silverstein family reunion, L to R: Valli, Heather, Nancy, Evey, me, Carol, Aunt Flor, and Mark
5. Evey and her girlfriends, Keelan (who made the gorgeous "hat"), Sheila, and Dana.

Like many parents, when our kids were younger, we played the License Plate Game on car trips. Our rules were that two people had to see it simultaneously and the plates only counted between the start of Memorial Day Weekend and the end of Labor Day Weekend. In addition to the 50 states, we counted Washington, D.C., any Canadian provinces, and any random islands like Guam and Puerto Rico that used to show up. When we lived in Laurel, near Fort Meade Army Base, Washington and all its federal agencies, Andrews Air Force Base, Quantico, etc, we almost always found every state right in our neighborhood. If we didn't find them in the neighborhood, a summer drive to Florida or somewhere else would pick up the rest.

Always, the two hardest states to get have been South Dakota and Wyoming. Ha! I bet you thought I was going to say Alaska and Hawaii. NO! We always found those two right in Laurel!!

Now that we are in Poinciana, not near any big federal facilities, we thought we would have a hard time finding all the states. NOT SO!! As of July 6, we have found 49 states plus D. C., Ontario and Quebec. The only state we are looking for at this point is Wyoming. Since we are going to the west coast twice, we hope to find it out there.

Does anyone else play this game? Now that the kids are grown and gone, is it weird that Mark and I can't stop playing? We seem obsessed with it!!

This morning, I just got back from my emergency dental appointment. It turns out that the filling didn't fall out. It's still in there. Sadly, half the tooth broke off. Now I need a crown. Today they put in a temporary filling, no charge. Hopefully it will last until Tuesday when I go back to have the crown made. I'll get a temporary crown that day and pick up the permanent one on August 25. Wow, it's always something.

Today, I also have a lymphedema therapy appointment at 11 a.m., picking up my note for the TSA from the radiation oncologist at noon (so that I can fly with my arm in the big wrappings), visiting my PCP at 2:30 to be told my CT head scan and carotid artery ultrasound were fine (figured they are because the med onc never called to say otherwise), and going for a mani/pedi at 4 p.m., followed by dinner at Lakeside for Free Wine Thursday, and a movie back at home while we pack again. Whew! Exhausted already.

We have to leave our house at 5:30 a.m. tomorrow to go to the airport for our 8 a.m. flight. This means Mark will probably get up at 2:30 and I'll get up at 4. Our flight on Delta is to Minneapolis. Once we get there, we seem to be on stand by to get into Seattle. I never bought an airline ticket before when I didn't actually have a seat. This time they took our money and THEN said, Ooops! There aren't any actual seats on the Minneapolis to Seattle leg. Good luck. The same thing is going to happen on the way out of Seattle to LA on Sunday. We could conceivably miss our guaranteed seat on the leg from LA to Orlando. Whatever. We will do the best we can. We are excited to go to the wedding of the daughter of my high school girlfriend, Denise. She's even flying over here to Boston for Evey's wedding. Sweet!

As you can imagine, we really loved seeing Evey and all of our family and friends. It was a wonderful week's trip, but it wasn't so good for my weight. I gained five pounds in eight days. I hope to take them off quickly because I'm going for the second fitting of my MOB dress next Wednesday! Of course, I'll keep you posted on that.

I'm not taking my laptop on this trip to Seattle, so there will be no more blogs until late in the day Monday. Have a great weekend to all who may read this.

Wedding Showers

I don't know where to begin. The two wedding showers for Evey were everything we wanted them to be. Saturday we had absolutely perfect weather in East Brunswick, NJ for the outdoor garden party at the Gaertner's house. Sunday was raining in the morning, so Denise opted to move hers indoors. It still worked out great. There was fabulous food at both parties, lots of good friends and family, and plenty of presents for Evey to open. She felt a little overwhelmed with all the attention and generosity of everyone.

We were able to take Lowell and Emily out to dinner last night after the party ended, too. That was a nice bonus.

Since Evey's flight wasn't until late afternoon, we spent a large part of the day today with her, including taking her to lunch at Q'doba's. It's one of her favorite restaurants, but they don't have any near her in CA. Once we dropped her off, we went to the two pet cemeteries near by to visit our four pets' graves. We had to do some weeding at the one cemetery, and we took pictures on our cell phones. Next stop was the kosher market for hamburgers, hot dogs, and all the traditional picnic go-with-its to make an indoor July 4th barbecue dinner. We might even watch the movie 1776.

Only downside to this trip was that a huge filling fell out of one of my upper molars at breakfast this morning. Nasty. It's like half the tooth is missing and I'm feeling a little sensitivity. I will call the dentist first thing tomorrow and try to get an appointment on Thursday, our one day home before flying to Seattle. I'll try to sandwich it around my lymphedema therapy appointment, my primary care doctor appointment, a quick visit to the radiation oncologist, and a mani/pedi. OY! And there must be laundry and repacking. Never a dull moment.