I’ve been trying it figure out how to write this blog post for almost six weeks. I’m still not sure what to say or exactly how to share what is in my head but I decided that maybe it was just time to type and see what came out.

September 19th marked 1 year after finishing my “at the hospital” treatments. The day came uneventfully and honestly would have likely gone by unnoticed if I had not started date stamping all of the boys’ school work. I wasn’t dreading or particularly looking forward to that day; after all, it was just another day, but the flood of emotion that hit when I saw the date in black and white – literally – was a bit much. There was the wave of gratefulness for being on this side of things. Then came the wave of overwhelm at seeing all the things that have changed – some of which are permanent and some of which may eventually get back to where it was prior to my diagnosis but all things that are currently in a changed form none the less. Next a flood of grief and uncertainty. Finally, thankfully, came peace knowing that I have done what I needed to do and from here I can only keep doing what we know to be best for me.

So what is life like now that we’re a year out from “at the hospital” treatment and the treatments that I receive now nearly all at our house in the form of hormone and physical therapy? Much of my life looks like that of every other homeschooling mom and for that I am grateful. My energy and endurance are building back up. I am sleeping less though I still require more sleep than I did before. My words are coming back. My brain is less foggy – most days. Cancer doesn’t course through my brain daily but it does still take up residence with regularity still. My physical scars are decreasing in size. I’m feeling more comfortable in my skin. My hair is back with more curl than ever. People are starting to talk to me about things other than how I’m feeling, my hair and cancer. I’m less edgy with every time I go back to the doctor or I feel a bit off but some things or feelings can put me on edge immediately.

Let me illuminate.

Less than a week after my 1 year out mark, I was faced with a new medical complication – my fingers and left hand began swelling (if you want the cliff notes version, skip to the spot with the bold *** below). The swelling was not slow or minor either. In fact, one morning I woke up and noticed my pointer finger seemed tight and puffy. By breakfast, I concerned enough to keep checking on how big it was in comparison to the same finger on my right hand. Shorty after lunch, I took a walk to try to settle my brain about the swelling but after a few trips around the cul-de-sac I decided it might be better to stop and chat with a friend while our kids played. As I was standing talking to her, I placed my hand in my pocket. After only a few moments, I pulled it out to a swollen bubble about the size of half an orange on the back of my left hand. It centered right over two of the veins in the back of my hand. To say panic set in is probably an understatement. I called my primary care doctor, who talked about waiting to see me until the next day until I told her the location of the swelling. At that point, she recommended going to priority care since the one medication I still take is known to cause blood clotting. So I called Andy and told him what was going on, checked to see if the boys could hang out with a neighbor and hopped into the car.

Priority care was very quick to take me back and even quicker to decide that even with the unfortunate placement AND my medication, it was not a blood clot – whew. Instead, it appeared to be the beginnings of lymphoedema. For those of you who do not know, lymphoedema is a swelling condition common in people who have had lymph nodes removed and / or lymph nodes radiated. I’ve had both. The condition is caused by the fact that your body cannot properly move lymph fluid because of the compromised system. It has no cure. Rarely is it reversible. On occasion it can be kept stagnate with lymph flushing and physical therapy. This “lesser diagnosis” was a blow emotionally. Though we knew that lymphoedema is a common diagnosis, it is one we hoped to never hear.

After leaving priority care, I called my surgeon’s office who immediately put in a referral for physical therapy with a lymphoedema specialist. They told me they could get me in 7 weeks from that date. I nearly panicked. We were leaving for a family cruise and a few days at Disney in less than two weeks. Airplanes and travelling in general are recognized as lymphoedema triggers. Though I know it usually isn’t advisable, I began to research lymphoedema and ways to manage it. I needed to hold on to something more than the “you don’t need to do anything until we see you” the PT office had given me. After digging a bit, I sent a message to my surgeon asking her if the things I was reading were accurate and okay to try while I waited. She assured me everything I mentioned would be fine to try.

So, off to get measured for a compression sleeve I went. I learned to manually flush my lymph system in my arm, hand and fingers, I spent time bouncing and swinging my arms. I kept my arm above my heart as much as possible. I watched the salt content of what I was eating and I made sure to exercise regularly.

We headed to Florida with all of these pieces of information and an arm that was better some days than others but was not good any day. The first of our flights was miserable despite already having on the compressions sleeve which should have made a big difference. Our first full day in Florida – the day we boarded the cruise ship – I spent in tears and had several moments of not being able to feel all of my fingers. Thankfully, after this first day, the pain started to decrease. It is likely that the combination of having flown and the approaching Hurricane Milton was the cause of my extra pain and swelling those first couple of days. The rest of our cruise was uneventful as far as my arm and hand were concerned and the flight home was far less painful. Here are a couple pictures of the vacation and if you want to hear about a bit of a crazy adventure you should ask one of the boys about being on an extended cruise due to a hurricane.

Back home, my arm and hand seemed to be swelling less frequently and when it did swell it seemed to do so with less puffiness. Our days continued as normal until finally it was time for me to go an see the specialist.

The specialist had SHOCKING news. She does NOT believe that I am experiencing lymphoedema at all and if I am it is so minor that it is not a concern. ***Instead the lymphoedema specialist believes that I am dealing with what is called cording. What is cording? I wish I knew. The therapist wishes that medical professionals knew. What we do know is that it feels like a thin piece of partially cooked spaghetti from my chest wall all the way to my fingers. The good news, there are things that can be done to help break up the cord and for now the therapist would like to try PT at home on my own unless it doesn’t seem to make a difference. The bad news, my cord is one of the longest the therapist has ever found and it is going to take a long time. Also, cords are “easy” to break up and then do something – namely stretch wrong or make a sudden movement – to make it flare and come back.

I don’t know that I can explain to you how much relief came once I learned that what I was seeing was likely not lymphoedema. I still have a TON of work to do to get the relief that I am looking for, but it was emotionally a thousand times easier to hear it is cording. I do want to get rid of the cord so I am diligently doing all of the exercises she recommended and doing the cord breaking massage every day. Though simple, these activities take time and make it clear to me why so many people call PT pain and torture, but I’ll keep at it and feel free to ask me about it to keep me accountable.

I am very grateful to be at the point we are at. And I am grateful for all of the people who are still supporting and praying for us as we continue this journey.