Lymphedema

I haven’t been keeping up with blog writing lately, not for a lack of things to write about, more for a lack of time and energy to focus on writing things down. So I will try to catch up a bit.

Lymphedema– The definition according to Medicine.net is: A common chronic, debilitating condition in which excess fluid called lymph collects in tissues and causes swelling (edema) in them. Lymphedema (edema due to lymphatic fluid) may occur in the arms or legs. This often happens after lymph vessels or lymph nodes in the axilla (armpit) or groin are removed by surgery or damaged by radiation, impairing the normal drainage of lymphatic fluid.

Many people are aware of the lymphedema in the arm that can happen from breast cancer surgery and treatments but most people are much less aware of the kind of lymphedema that can happen from gyn cancer surgery (in which some of the lymph nodes in the pelvis and abdomen are removed) and treatments (particularly pelvic radiation). The thing about lymphedema is it isn’t just about getting a bit puffy. If it is not kept under control it can lead to infection (like cellulitis), tissue changes (it can get hard) and the swelling can get huge (think elephantitis) and be hard to get rid of. It can be one of the more bothersome side effects of cancer treatments.

There is no cure for lymphedema, only “management”. There is no time limit for when it can happen, it can be 20 years after surgery. Things like heat, being overweight, being on your feet a lot, and flying can exacerbate it. I had all of those things this summer.

So, I have lymphedema in my pelvis and legs. It’s always been mild, but it requires my wearing compression stockings (pantyhose actually) all of my waking hours of every day for the rest of my life. They aren’t like regular pantyhose, but are quite thick and have a kind of snug feeling to them. I’ve been wearing 20/30 mm hg which is probably two or three levels up from the type of support stockings that some women have to wear when they are pregnant (because of vein problems in their legs). They are nice and cozy in the winter, but unbearably hot in the summer. Not to mention the fact that I can’t wear shorts as I would look ridiculous in them with these thick stockings on my legs. So I wear cropped pants or capris and hope that most people don’t look down that much.

Every night I must hand wash the stockings I wore that day and hang them to dry. Often they are not dry by the next day so you need at least 2 pairs so you can alternate wearing them. Each pair of stockings can cost (depending on the brand and the compression level) from $80 to $100 each and they need to be replaced every 3 or 4 months (although by alternating you can stretch that out to twice a year). My insurance only covers 2 pairs per year, but I have never tried to get them to pay for them. Partly because they will only pay for one particular brand of stockings, a brand that I hate, besides being uncomfortable and extremely expensive (over $100 each discounted on the internet, more expensive than that if you go to one of the approved medical supply places to buy them, which is a trip in itself, don’t even ask!), they are not durable and I have put a hole in them the first week every time I’ve tried them. Also, by the time you pay the deductible (on the much higher markup) it’s just not worth the hassle as I can do just as well by ordering them online, and I can get a brand I like. I spent a fortune the first few months ordering every brand there was trying to find something I could live with. It had to be sturdy so I didn’t poke holes in it, it had to be comfortable so my legs didn’t hurt or itch, it had to stay up (this is relative, they all fall down to some extent) well enough that I didn’t feel like the crotch was at my knees all the time, and I had to be able to pull them down and up the three million times a day I use the restroom. So, I found a brand I liked and I find out last month that they are discontinuing the stockings (of course, this is something that happens to me all the time when I like something, the trend setter that I am). Luckily I found something else (something that I managed to miss during my first go round with trying stockings, either that or they didn’t exist then) that I like just as well, if not better and it’s a little bit cheaper too!

The last couple of summers I cheated and bought some thinner, more sheer, but lower compression stockings (15/20 mm hg) and wore them instead of the thicker ones (I think I really was pushing it wearing these this summer with having flown in August- really 4 flights because they weren’t non-stops- and walking a lot on vacation and the Livestrong walk, and I have been continually gaining weight since my surgery in 2004). They are still hot, but better than the ones I am supposed to wear. Things had been going along fine until Labor Day weekend when I noticed that my left thigh and knee was swollen. I noticed this when I put my left foot up on my opposite knee to put some lotion on my legs and feet (you’re supposed to put lotion on every night when you have lymphedema to keep the skin from drying out but you have to take it off before putting the stockings on) and it felt really tight. Ack! I was pretty upset. In the past my swelling had been in the ankles mostly, on both sides and not really bad, never a one sided thing that just seemed so big to me. I spent the next few weeks trying to get it down myself, keeping my leg up when possible (I have a footrest under my computer desk so my leg(s) can be horizontal when I sit), doing self massage (manual lymphatic drainage massage, a special type of light touch massage that helps move the lymphatic fluid towards the fully functioning lymph nodes in the body), and immediately switching back to the thick higher compression stockings. Of course this has been the hottest fall in a long time with so much of September and even October in the 80’s or above.

I have an appt. to see my lymphedema dr. in early November and I tried to get it pushed up but there was no way. So then I tried to get an appt. with the lymphedema physical therapist that treated me almost 2 years ago, but she wasn’t doing therapy anymore. She referred me to someone else and I made the appt. Last week I finally was able to get in to see her. To my relief she said that it wasn’t that bad. I had visions of having to be “wrapped” (a 4 or 5 layer bandaging process that goes from just behind your toes to your waist- I couldn’t imagine how I was going to function with that) but she said no. I do have to go up one more level of compression though, to 30/40 mm hg. Just imagine how comfy I’m going to be next summer! I think I’m going to have to move Maine for the summer! I haven’t actually gotten the new stockings yet (they are sitting in my local post office as I write this), so don’t know how thick or comfortable they will be, but in judging the difference between 15/20’s and 20/30’s, I can imagine how 30/40’s will be. She also recommended a rubber based stocking for exercise. She had a sample piece that she showed me. It looks like it would be very hot and uncomfortable to exercise in, but unfortunately that is when I need the most compression. So far I have avoided any kind of workout that makes me too sweaty (the only things I have done are swimming or water aerobics- where I can take the stockings off because the water acts like a natural compression- and yoga) as I just can’t wrap my head around washing out two pairs of stockings every day. Silly I know, but I just get so sick of it.

So the other thing she wanted to do was work on my scars. I have an incision from the hysterectomy that goes from my belly button to “down there”. The scar is quite deep and tight. I also have in internal incision that goes horizontally across this right below my belly fat roll (I can’t think of a nice way to describe that). That one is extremely tight. She also could tell by pushing and pulling on my skin that I have had laparoscopic surgery as my belly button is also not moving around like it should. All of this tightness impedes the lymphatic flow. Interestingly, when I saw my acupuncturist the next day and told him about what the PT was doing he asked to see the scar. He said it was so deep and tight and cut across muscles (that hurt like heck when he pushed on them) that it could be a part of the reason for my back pain. Makes sense to me since the back and hip stuff started shortly after my surgery and radiation treatments.

Soooo, on Monday I had my first appt. with the PT for “scar work”. Can you say OUCH! Like bring tears to your eyes even though you are trying really hard to talk to her and not think about what she is doing to you kind of OUCH! She was pulling from and pushing down from the incisions and holding it there for a long time while she had me move my legs or do pelvic tilts. It was tough, but I got through it and was so glad when it was over. She gave me homework to do myself, the same kind of thing (only there is no way that you can inflict that kind of pain on yourself so it won’t be nearly as strong as what she does). Tuesday morning I take my shower and soap up and nearly go through the ceiling of my bathroom. It stung a LOT! I discovered later when I got a mirror that my skin had broken open in two spots along that horizontal incision under the belly fat. I put some antibiotic ointment on it (I was concerned about infection since it’s under that fold of skin) and when I checked it that night one of them was actually bleeding a bit. Ugh! I called the PT and this afternoon I got a message on my machine to stop the self scar work and put some ointment on it. She said not to worry, this wasn’t unusual with scar work. Oh…. great.

So, this is just one of the ways in which my life has been changed by cancer (and there are many others, including other ones that affect my life on a daily basis). Most of the time I just deal with it, but some days I get depressed about it and other days I get angry about it. Yesterday was a depressed about it day. Today is a just deal with it day.

Hmm, this got really long. Guess I should really write more often so I don’t bottle it up and then have to write novels for my blog posts!

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Eating in New Mexico Day 7

Day 7 was a Friday and we left Santa Fe and drove south to Albuquerque and west to the Acoma Pueblo, aka Sky City. We were meeting some families from my mom’s list (a listserve that started out as group of women who all were pregnant and due in Sept. of 1997) in Albuquerque for a few days. We weren’t checking in to our hotel till later that afternoon and I had mentioned to the moms that we would be going to Acoma beforehand. We got there and got our tickets for the guided tour (you can’t self tour there), which we got for free because of our National Trust for Historic Preservation membership. We were about to head into the small museum to look around before the tour started when all of a sudden one of the moms (who we know quite well as we have met many times) runs up to us! They and another family had gotten in to Abq a day or so early and they decided they would like to see the Pueblo also. They knew we were going but it was pure coincidence that we got there at the same time and had tickets for the same bus tour. It was great, the kids (there were 3 girls including Z. her age, and one younger boy) were excited to see each other (they have all met before) and it was more fun doing the tour together.

While touring the Pueblo there are various stops where you can purchase food and/or pottery. At one a woman came out with steaming hot tamales (and they were hot, both temperature and spice as they had chilies inside). Z. and one of the other girls wanted to buy them, which was surprising to us (Z. does not like spicy food and also isn’t very adventurous these days with trying new foods and would never have tried these at home) but we said sure, figuring we would eat the rest of it after she took one bite. Well, she took one bite, which had some chile but was mostly the masa and asked for a 2nd bite. That one had a lot more chile but she didn’t complain, just politely said she didn’t want anymore after that. There were stops that had Indian Fry bread, but they always seemed to be sold out by the time A. and I got there, but Z. managed to mooch plenty of it from the other kids and parents.

The Pueblo is up high on top of a mesa and they drive you up there on small buses (then you get off and walk around the Pueblo). They allow you to walk down the mesa and along the roadways to go back to the Cultural Center. It was very hot and we were pretty tired so A. and I chose to take the bus back. It wasn’t the walk down the mesa that seemed so bad, but the long walk on the roadways in the hot sun that didn’t appeal. Z. walked down the other kids and parents and A. and I drank root beer in the shade while we waited for them.

It was the San Lorenzo Feast Day in Acomita, a modern town in the Pueblo, and we all decided to stop there on the way back to Albuquerque and check it out. It was pretty much a modern street fair (except for the dances), lots of food and various crafts and things for sale, and a couple of moonbounces for the kids. The church was in the middle and outside they were performing various religious dances and we were able to watch a few. We all nibbled on street food, A. and I shared a fry bread with cheese (grated cheddar semi melted on top), and on the way out we bought some cinnamon bread (huge loaves of white bread with cinnamon sugar on top) and a package of cinnamon sugar cookies (again, similar to the Taos Pueblo these were more bread-like than cookie-like).

We all drove back to Albuquerque to our hotel and A., Z. and I checked in. We stayed at the Clubhouse Inn and Suites on Menual Blvd. Most of the families were staying at the hotel (except for the local family and one family who stayed with family locally). We had booked a meeting room for Friday through Saturday night. It was conveniently located right off the lobby and close to the door to the outdoor pool. The hotel offered free breakfast (an impressive spread which included eggs, breakfast meat, waffles, biscuits, bagels, fruit, cottage cheese, cereal etc.) and had a happy hour most evenings (which included 2 free drinks per adult, free soft drinks, popcorn and some hot hors d’oeuvres which changed periodically).

We all began to meet up as everyone came in. Many of us had met before, at previous F2F’s we have had, or when traveling in an area one of the mom’s lived in, but some of us had not met before. It’s a neat and unusual thing to meet someone for the first time and you feel like you already know them. We all “talk” to each other almost daily through email, most of us for over 10 years. In many ways we’re like family.

Some of us were hungry, some of us not so much (like myself), so rather than trying to get all of us out to a restaurant we ordered in. Pizza for the kids and some adults, and New Mexican food (including sopapillas) from Little Anita’s for some of the adults. I had a small slice of pizza (and was sorry afterwards as my stomach was not happy from all the fried & white food today). Z. had some pizza and A. had some of the NM food. As the evening progressed I realized that the sniffles and scratchiness that I had been feeling all day was from catching Z. and A.’s cold (I had been hoping it was allergies). Bleh!

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