New Year, New Lymph Nodes, No Chemo New ME!!!!!

Hi warriors! What a long doozy of a blog post that last one was! I’ll do my best to keep this one shorter.

Lymphatic System

A quick reminder of the lymphatic system. The lymphatic system consists of lymph nodes that are all throughout your body. It’s very similar to the circulatory system, but instead of carrying blood to organs it’s carrying lymphatic fluid. Lymphatic fluid is a colorless fluid that is full of white blood cells to fight infection. Lymphatic fluid also helps feed or bathe tissues in what they need to survive and function, and it collects waste or damaged cells. All of that fluid then gets carried back to the thoracic duct where it’s put back into the blood stream, to be whisked away to its appropriate body system depending on the individual cell’s function.

Unlike the circulatory system that has a pump (the heart) to push along the fluid, the lymphatic system does not have a pump. It’s pumping pressure comes from either the build up of lymphatic fluid in the section downstream, or by the surrounding structures (like muscles) pushing on the lymph nodes, thus increasing the pressure and pushing the lymphatic fluid to the next section.

Lymphedema

When something is blocking the pressure system, lymphedema occurs which is a build up of lymphatic fluid. This results in swelling in the area which can result in infection and general discomfort as the swelling progresses. In extreme cases, one could have limb movement restriction because it becomes so swollen. I’m assuming there is even more rare cases where even blood flow is restricted and there is extremity death resulting in amputation. Luckily, I am no where near that.

My symptoms of lymphedema are my upper arm (or chicken wing) feeling full and slight measurable enlargement of my right arm. The medical team and I have assumed this means I have lymphedema, caused by the removal of lymph nodes and cancer in general. But we didn’t have visual definitive proof of this, until December 20th 2022.

Coolest Procedure Ever!!

On December 20th, I went in to see Dr. Figy to get a confirmed diagnosis of lymphedema, based on being able to actually see what’s happening at a structural level. He did a procedure called lymphatic mapping. It was hands down, the absolute coolest medical procedure I have ever witnessed. It was even cooler that it was being done on me!!!!

Lymphatic mapping is when one is injected with fluorescent dye into the webbing of the hand/wrist. Then the lights are turned off and (with a special light) you can see exactly where the fluid is going. In someone with a working lymphatic system, the fluid would light up the arm with a neon green color in a nice linear fashion, looking much like the circulatory system. In a non-working lymphatic system, the fluid pools and gets stuck. It looks like a big, bright blob. Sometimes fluid can still get through the blob, but not as much. Having a stuck blob would give a definitive diagnosis of lymphedema. (I’m sure there is a better medical term than big, bright blob of fluid, but imagine that insurance claim. lol)

So why is this important? Well, with a definitive diagnosis of lymphedema, the very talented Dr. Figy can do a way cool surgery called lympho-venous bypass. Basically what he does is use a super high-powered microscope and other fancy stuff I don’t understand to create a new pathway for my lymphatic system so that it can drain, pump and flow properly, thus potentially reducing or eliminating my lymphedema. With this surgery, I’d potentially be able to stop or reduce all the things I currently do or have done to me to treat my lymphedema. How absolutely amazing, cool and life changing is that!!!! And it’s all because of science! Man, science is cool!

Current Treatment

Currently, we have been treating my lymphedema in a couple of ways. First, with daily lymphatic massage from my amazing hero of a husband and caregiver Mitch—to try and push those tiny lymphatic vessels in the right direction. I also go to my occupational therapist (who gets paid to be a hero and amazing) twice a month. She does a much more advanced and fancier massage that I’m just as grateful for.

I wear a compression sleeve daily that applies gradient pressure to try and keep the fluid going in the right direction. I also am careful with what I do; I don’t over work the muscles in the area as to not cause too much swelling. The area needs to be at just the right setting to work correctly. It gets complicated, though. Some muscular movement is helpful for the pressure to build up and push the fluid along, but too much continuous swelling stops the whole system from moving. It’s something I have to be constantly mindful of in every action I’m doing to ensure I’m not over doing it, but at the same time still building needed and important strength.

I’m also careful with what I consume. Putting food or liquid in my body that have or create a lot of waster products can cause a backup of fluid. I’ve found drinking alcohol and salty foods seem to have an adverse affect so I try to limit those things. Being hydrated seems to have a positive effect on the system. I just have to be sure to not have too much salt when I’m fully hydrated. Too much salt causes me to bloat, making the system unable to function, thus the lymphedema worse. There are also a lot of other things that affect lymphedema which I have no control over, such as humidity and heat, but that’s a story for another day. (Also as a side note, no 2 patients have the same exact triggers and responses to treatments, so there is never a good one-size-fits-all answer to lymphedema)

Survivorship

Overall, if you’re intellectually savvy, you can see how this is a big side effect for cancer patients. It takes a lot of mental energy to even figure out what’s contributing to one’s lymphedema. Then even more energy to consider and balance every single thing that affects the lymphatic system. It’s a very small part showcasing how survivorship can be harder than active treatment.

Active treatment is more straightforward; typically with side effects that are well understood and studied. It’s well mapped out with 2 + 2 = 4. Sometimes there may be an x thrown in there, but once the x is solved (so 2x + 2 = 4), then the equation is still solved and wrapped up nicely. Everyone goes home happy and content.

Survivorship on the other hand is the wild west. There are a lot more variables and letters in the equation. (see example photo below)

If you’re lucky, like me, you get a great team who knows all the treatment options to help manage or solve your long term side effects. If you’re unlucky, well that sucks. And sometimes even being lucky and having that amazing team with all the options is still a lot and exhausting, but again I digress. We can talk all about mental load and exhaustion another day. There’s still very exciting news to be told.

No More Chemo!!!

I can’t even believe I’m typing this! This morning at roughly 7AM I took my very last 2 lynparza pills! I completed a year of pills. That’s 1,460 pills. 1,460 pills that made me tire easier. That drained me. That affected my taste. That made me constipated. That made me forget the most simple of things I just went over with someone. That had me forgetting names of objects and people and slowed down my cognition greatly.

At the same time, 1,460 pills that have kept me alive. 1,460 pills that have allowed me to experience all those frustrating side effects. 1,460 pills that have greatly increased my chances of long-term survival. 1,460 pills that have given me a chance at life.

I’m so excited to see what the next chapter is without lynparza. I’m also nervous that it’s the only thing that was keeping the cancer at bay. It’s a constant battle in my mind that I know all of my friends in survivorship go through in some way. But for today, I’m going to ground myself and be present in this personal, momentous, joyful, beautiful moment of successfully completing a part of treatment.

1,460…1,460…… Let that be your mantra and reminder to live fully present and in every moment. Try to do that many fun, amazing, beautiful, things this year warriors. Take in life 1,460 times in all its glory and messiness. Just be present and I will too. Until next time…. have a magical day.