This morning I had my appointment with the lymphedema specialist at the physical therapy clinic. I took my compression sleeve and gauntlet with me. Wow! I learned so much. One thing I learned is that I definitely have lymphedema not only in the left arm but also in the breast.
So here are the things that I need to do:
1. 8 reps of five different massage movements 3-4 times per day, pretty much forever.
2. See the specialist three times a week for three weeks for more training and massage. Next time the arm will be wrapped tightly in bandages which must be worn for 48 hours straight.
3. Wear a tight-fitting bra all day. Fortunately I had an appointment for mastectomy bras and a breast form right after this appointment. I can talk about that later.
4. Stay out of the sun. Wear a long sleeved white shirt when out in the sun. I bought two men's Columbia brand size 2X long sleeved white shirts at Sports Authority. These are designed to be protective and cooling for men doing sporty things outdoors.
5. Never get in a hot tub. This is a huge bummer.
6. Take cooler showers.
7. Drink plenty of water and cranberry juice. I do that already.
8. Wear my compression sleeve all day every day.
9. Get a compression glove with fingers on it to wear all day every day instead of the half-gauntlet I have now. I ordered it today.
10. Don't let my arm be in the sun when driving the car. Don't let my arm dangle at my side for very long.
11. Never lift more than 10 pounds with the left arm.
12. Lose weight. Excess weight puts more of a strain on the system and can cause additional swelling and pain. I'm trying to get as scared about this as I was about the hernia surgery in '09 so that I'll stick to my diet again.
I knew some of these things, but I didn't realize that I already had developed the condition. I was suspecting it a month or so ago because there was some odd sensations in my hand and arm. The therapist who fitted me for the compression sleeve at the end of April said it sounded like I did have lymphedema, but her measurements did not show a difference in size between the two arms. Today there was a significant difference in size between the two hands, wrists, and forearm. As soon as I walked in the room, she immediately said, "Take off those rings right now." I did. My wedding rings are in my purse now.
She also explained in great detail, with colorful charts, graphs, and diagrams, exactly how the lymph system works and how lymphedema develops when the system has been cut by having nodes removed. She said that in that area of the arm there are between 26 and 32 nodes, so about 50% of mine are gone. This is going to be a problem forever.
I'm not going to try to explain everything she said. I'm sure I can't even remember it all. The short version is that all cells in the body excrete things in their normal life, things like minerals, water, protein, and other things. The protein molecules are the biggest and the most problematic. The lymph system should collect this excreted material and funnel it into the nodes. The nodes chew it up into tiny, tiny bits and send it into the circulatory system where it goes through the heart and then through the kidneys where your body excretes it. I hope I got most of that right! Anyway, I have 50% less nodes to do the chewing up, so the unnecessary molecules get stuck in the hand and arm and cause swelling. Massage can physically move it up and out to other places in the body where I do have nodes, like the torso and the other arm pit. I can also "reroute" and "rewire" the lymph system by regular manual manipulation. Whew! That was a lot of new information for me.
I am trying to stay positive about this. I feel like it is going to change my lifestyle more than the cancer itself. I don't like the idea that this compression sleeve is part of my regular outfit now. It's going to be very hot in the summer here with this on. It's going to be a bummer to walk around Disney World wearing a compression sleeve and a long-sleeved shirt every time. I also had planned to spend a large amount of my retirement time laying by the pool and dipping in the hot tubs. Now she is saying never get in the hot tub and only go to the pool in the early morning or late afternoon/evening. I guess I can do that, but it is a bit of a cramp in my style.
As for the bras, I had not been wearing one regularly since the chemo. It seemed like too much effort when I was sick. Then the radiologist said it was better for the skin not to wear one during the radiation. I was enjoying that freedom! Now I was fitted for special mastectomy bras and a breast form that fits inside the pocket of the bra. My insurance covered six bras and the form 100%, so that was great. I can get six new bras every year, and if I lose some significant weight in that year, I can get six new ones in a smaller size before the year is up. That's a pretty good benefit, I must admit. I took two bras and the breast form home with me today. I'll pick up the other four bras next Friday. I am very pleased with the way they fit and feel. The breast form is a perfect size and shape for me. I'm completely symmetrical again and the form even has a small nipple shape on it, so it really matches well. That's the positives. The down side is that the form is silicone, heavy and hot. I don't know how great it's going to feel walking around in the hot sun at Disney World with a long-sleeved shirt over it! I guess I'll be finding out soon.
The breast form and the compression sleeve have to be gently washed by hand, the breast form every day and the sleeve every other day. So one more thing to add to my daily routine. UGH!
Well, I'm still going to try to stay positive. This is manageable. It's not the end of the world. I should not dwell on what I cannot do; I should dwell on the fact that I'm alive and can go to the pool every day in the evening if I want to. Right? Still this is hard. I knew this was a possibility, but I have lived in my "land of denial" again. It's happy there. Now she forced me to leave that land and go into the real world. This part of the real world really sucks.
I promise that tomorrow I'll write a happy, upbeat blog about all the fun we had on our road trip. It really was a lot of fun, but I've written enough for today.
Becky,
ReplyDeleteWow this is a lot to get used to at once. I remember Brenda who was in our BC support group a few sessions ago who was dealing with lymphedema. I wish that you could talk to her still and compare experiences. I don't have any good ideas for you. I will be praying for you as you get used to this idea. The only two things that come to mind are 1)Maybe things will change for the better as you lose weight. and 2) Maybe after you have had time to go through treatment for awhile and get more used to things a second opinion from another lymphedema therapist somewhere might be helpful with possibly a less restrictive viewpoint on how you can manage the symptoms you are having.
I remember being very overwhelmed about 8 1/2 years ago when I went to a lymphedema therapist with all that she wanted me to do. I went through the treatment that she suggested and tried wearing the arm sleeve. After several months I cut back on the program and still seemed to do pretty well in terms of comfort of my affected arm, and size of my affected arm.
Another thing I remember was that for awhile I was going to a massage therapist who specialized in lymphatic drainage. After a massage from her I felt relief from discomfort in my arm.
Just ignore what I wrote if it is too much information for you now. Take good care of yourself as you get used to all of this new information you've found out. I am thinking of you.
you are entitled to vent. readjusting your ways is a pain but not life or death.
ReplyDeleteThinking of you.