After what seems like months and months of nothing really to talk about, I have news!
First.... I had my six month check ups with my oncologist and my surgeon. All is good, come back in another six months. Yay!
Second....I had a follow-up CT scan to recheck some lung nodules that were on my scan in September. Nothing new on this one and everything is stable! Yay!
Third...I met a new doctor today. I took the first step towards doing something about my lymphedema. I'm OVER it. It's ugly. It's uncomfortable. It's not responding to anything I do for it. Sometimes it hurts. It puts me at a greater risk of an infection, and developing serious complications from an infection. So... enough is enough.
Fourth...Today I had an MRI of my abdomen to screen for pancreatic cancer. I'm supposed to have this every year, and as long as nothing shows up, I don't have to see that particular doctor. I won't know results until next week, but it feels good to have that done.
Hubby and I met with a plastic surgeon who specializes in microsurgery for lymphedema. And when I say micro, I mean MICRO! We're talking performing surgery on lymph vessels less than half a millimeter wide and using stitches thinner than a strand of hair. Better him than me!
Anyway, after measuring both arms, the nurse quipped, "Well, in case you couldn't tell, your arms are two different sizes." ha No kidding.
First up will be a test to see where the lymph pathways in my hands and arms lead.... if anywhere. This is called radionuclide imaging of the lymphatic system. Basically I'll be injected with radioactive dye and then scanned to see where it goes and highlighting blockages.
After that, I'll meet with Dr C again to discuss a plan. He thinks I'll be a candidate for "lymphaticovenular bypass surgery".... during which he'd redirect my lymph fluid from the blocked areas to open vessels (veins). It would be a 5-6 hour surgery, overnight stay, and then a month of babying my arm (basically keeping it elevated and not using it at all).
So.... more tests. Probably more surgery. Definitely more trips to Dallas.
Not a fan of any of those. BUT.... I have hope. I spoke with a friend of a friend who had this done, and she said it has been LIFE CHANGING for her.
I have to stay realistic. It's not a cure. There is no cure. And the results vary.... from zero improvement to about a 30% reduction. I'll take it.
This surgeon is in the same office as Dr T who did all of my reconstruction and remains one of my favorite doctors. I have ultimate confidence in the team at UT Southwestern, so I'm going to go forward with this and see what kind of plan we can come up with.
The following is a post from last June when I first went down the road of treating lymphedema. Not much has changed.... except I am not settling for suffering with this any longer if I can help it.
Before cancer invaded my world, I had no clue.
Let me educate you.
Lymphedema is swelling in an arm or leg caused by a lymphatic system blockage.
The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.
The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort.
Since I had tons of lymph nodes removed during my initial surgery, my lymphatic system on that side is compromised. With no lymph nodes, the lymph fluid has nowhere to go, and it can build up.
I've tried to be diligent about preventing it to the best of my ability. I wear my compression sleeve when exercising or out in the heat, on an airplane or if I feel the tiniest bit of swelling. I make sure to always get my blood pressure taken on my right arm, and avoid needles (shots or iv) on the left side. In three and a half years I haven't really had any issues.
Cancer really is the gift that keeps on giving. Aside from the fear that every ache and pain, cough or rash could be cancer, there is also the possibility of a surprise lymphedema diagnosis years later!
I saw a lymphedema specialist Monday and she taped my arm until the wrapping supplies came in. Well...... they came in and I saw her again today. Lucky me.
I have five, count them, FIVE layers of stocking, padding and bandages on my arm. And I get to do this every night for the foreseeable future. BLAH. I'm lucky that my therapist took pity on me. Normally a patient would wear this 23 hours a day. Since my lymphedema isn't extreme and is mostly localized in my forearm and hand, I can get away with wrapping at night and wearing my sleeve during the day.
It's a very good thing that I've never broken a bone. I would NOT be a good patient if I had to wear a cast. My son had to unclasp my necklace tonight because my arm wouldn't bend far enough to reach it. I had to stretch a rubber glove over my hand to cook dinner. I have an ITCH in the crook of my elbow.... that I can't get to! Oh, and I live in Texas and it's SUMMER.
We are leaving tomorrow for a road trip including a softball tournament, visits to two different friends in two different states, and ending up in New York to see my parents. I will be traveling with my little bag of wrapping supplies and hope between me and my son we can figure out how to duplicate this crazy contraption on my arm.... every night.
I know there are much worse things I could be dealing with. It's uncomfortable and restrictive and annoying..... but not life threatening. I'm not sick, I'm just swollen and achy and pissed off that this happened.
Just goes to show you you're never really "in the clear" from anything cancer-related.
I guess I get to add another color awareness ribbon to my profile. I should go jewelry shopping. 😄