Life. The journey continues.

I continue to be monitored for cancer. My last scan was in early May and I am still cancer free after 3 years and 6 months. Some might say remission but whatever you call it there is no sign of cancer. Is it possible I will find cancer again? Yes. Everyone has potentially cancerous cells in their body. It’s when these cells reproduce and develop uncontrollably that cancer can form. Metastatic cancer is supposed to be a lifelong challenge but I believe I am doing what I need to do to keep my cells in check and so far, so good.

But what about the stem cells? How are you feeling? I wish there were simple answers. Unfortunately for me there are not. My MS symptoms continue to vary day by day, hour by hour. I take medicine to give me a little extra strength, to prevent osteoporosis, to prevent urinary infections, to suppress estrogen, and yes to control MS. I hate taking medicine and I especially hate taking medicine to combat the side effects of other medication. I guess that’s one reason I have always been a proponent of trying natural methods.

My mood, my optimism, and my views on whether the stem cells are working varies based on how I’m feeling. From Christmas to late March I wasn’t feeling great but eventually started to feel more like myself. About 2 weeks ago I had an infusion of an MS drug called Ocrevus and ever since I have felt blah again. I get this infusion every 6 months so I am wondering if the medicine is to blame. It is hard to say since feeling blah is not listed as a side effect. All of the other MS medications I’ve tried have bothered me too but I was hopeful with this one. It could also be the hot weather aggravating things but again there are never easy answers. Just hoping it doesn’t last another 3 months.

I have moments where my strength comes back temporarily. Not that often but it still happens. Recently I started swimming again. It’s definitely not as easy as last summer but it feels great to be moving in the water again. Most of the time when I am finished my strength improves and I am able to walk and stand better for an hour or so. Sometimes that means I am tired and weaker later in the day but it feels great while it lasts.

And it is those moments that give me hope. Hope that the stem cells are keeping my MS from progressing. Hope that my body can still recover. Hope that in the future I will be talking about MS like I do about cancer.

We are considering another trip to Panama probably closer to December or January but not making any firm plans yet. For now I just take one day at a time. Anyone who has been a caregiver for someone, I feel for you. Not everyone can advocate for themselves like I do and navigating the world of healthcare has its’ challenges. Many people my age are caregivers for a parent, grandparent, or god forbid a child. The amount of time I have spent dealing with insurance, medical bills, pharmacies, doctors, and appointments is astonishing. Mistakes are made all the time and if you’re not paying attention or asking questions you might be paying too much or receive the wrong treatment. Of course I have the best caregiver. He’s just fortunate he doesn’t have to deal with the bookkeeping side of caregiving.

I write a lot about being grateful and I am. It is easy to get caught up in this fast paced world and forget about the blessings. Having a chronic illness much like losing a loved one or experiencing a traumatic event can change your perspective. Don’t sweat the small stuff is good advice. I don’t have the energy to sweat the small stuff as much as I used to. Sometimes while I am sitting feeling confined because I can’t move the way I want or get where I need to be I notice how much the world takes for granted. If I was homeless or didn’t know where my next meal was coming from I might feel the same way. Most of you reading this are blessed with a good life like I am. You have people that love you, a nice place to live, and plenty of great experiences. Appreciate life in whatever capacity you can. I too find myself getting caught up in life’s little dramas from time to time and I have to remind myself I have bigger issues.

“Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” —Oprah Winfrey

I’m thankful I have friends who take the time to read what I write. Give us a call this fall as we will have an empty nest and will be looking for things to do LOL.

If you are up for a little more reading this is an article I wrote and submitted to a website called The Mighty. It was written in January during the time I was not feeling well and published last month. https://themighty.com/2019/05/multiple-sclerosis-leg-brace-tired/