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.