My Journey… My Detour!

Anxierty was definitely an unwanted gift: Before Cancer I might have been a worrier, but I dont think I was an anxious person. However, having all the tests every few months to see if the Cancer has grown or spread has really increased my anxiety levels. In the Cancer community we call that “Scanxiety”. The idea of getting bloodwork or having to get into this machine, and to have to wait for the results, whether good or bad really take a toll on your psyche. I think I have done a good job of not worrying about the test results until it’s time to worry. All I can do is pray for good results, and when the news is NOT good, then thankfully my Oncology team has a plan and we move forward.

When I was first diagnosed, back in 2016, I made a promise to God. If he gave me 10 more years I would share my story. I would say yes to any opportunity that came my way, and I did. I swore I would give my testimony of how great my God is. How my God grants miracles and how he healed me. But now that I am creeping up to year 8 I am getting anxious. I feel like I am running out of time. Like I have this giant countdown clock over my head, and it’s counting down faster and faster everyday, and 2026 is my expiration date. So now I am feeling a sense of urgency to get all these things done. I am writing letters to my boys, leaving my things in order and letting my final wishes be known. The Beastie already has her assignments.

In hindsight, I should have asked for more time if I would have known that God would have listened and blessed me with this extra time. I feel like a spoiled brat for asking for more time. I know alot of people, who are not with us now, who would have loved to have made it this long living with Metastatic Breast Cancer. Now que in the survivor’s guilt. Another gift from Cancer. Oh, and don’t forget the mommy guilt. That’s a whole other blog, so we will table that one for a later time.

More time is all I really want. I think ALL Cancer patients want more time with their loved ones. We aren’t asking for anything extravagant, but we are asking for something precious. God and I are not on the best of terms right now. I feel like a child having a tantrum. Daddy didn’t give me what I wanted so now I am going to rebel, and that’s ok. I think I am allowed to be angry. Again, we might have to table that for another time.

Depression was also another unwanted gift. I don’t think it was necessarily from Cancer. It was more from the medication. One of the many side-effects of Chemotherapy and hormone blockers. But no one really tells you that these meds will make you feel hopeless and unmotivated, or that they will make you irritable and short-tempered. On top of the meds, your body is also being focrced into medically induced menopause. So that hightens all the emotions. It’s a cluster-fuck and a recipe for disaster.

Luckily, I was able to find a wonderful therapist. I felt like I was going crazy. I felt so uncomfortable in my own body. I knew my mental health was in jeopardy. He was the only person who told me it was the IV chemotherapy I was on. That’s why I was so adamant about switching my medication. I mean, it wasn’t working and I had progression, so why continue.

It was like night & day when I switched meds. I immediately felt more like myself. I had the motivation to get out of bed and the energy to do more things. The hubby noticed the difference and those around me also saw my “spark” come back.

Lymphedema is another gift that Cancer gave me. It is seriously a full time job trying to get the right resources and to keep my arm under control. I always knew it was a possibility for me to develop Lymphodema becasue they removed all my lymph nodes on my right side during my double mastectomy. However, I have worked so hard to prevent it. Doing all the right things; wearing my compression sleeve when on an airplane or excercising, not carrying anything too heavy, avoiding cuts, no manicures or cutting of the cuticles, avoiding too much salt, exercising, lymphatic drainage massages, acupunture, etc. Alot of these services are expensive and most insurances wont cover them. So you have to do your research and talk to the right people. I am lucky I know some amazing ladies who are open to sharing their knowledge and their time. (Shout out to my Metsister Beth for wrapping my arm, and to my Breastie Bonnie for letting me borrow her machine until I get mine).

Lymphedema doesn’t hurt (at least for me it hasn’t caused any severe pain, but I know some people who say differently), but it’s inconvenient. It’s extremely uncomfortable, the heaviness of the arm and tightness of the skin. It also makes me self-conscious. Having one fat arm that is swollen. I have to be careful not to get any cuts that can cause an infection. Also, when I am wearing my sleeve people give me the weirdest looks. That part I don’t care much about. But I can see in their eyes they are trying to figure it out. My fingers and wrist are also swollen. So no jewelry on my right arm. Now I am unable to wear certain clothes because now shirts don’t fit with this sleeve, and I can’t wear any cute shirts that have an elastic band on the arm. I am also spending my nights attached to a machine doing therapy on my arm. The boys hate it. They know that’s mommy’s bad arm and they have to be careful.

Also, this new compression sleeve is heavy and hot. Living in South Florida with hot flashes and now this huge sleeve is not ideal. I just want to stay home, where there is Air Conditioning. I am also a righty, so I have had to learn to use my left hand for a lot of things. Cooking is interesting these days. Oh, and writing this blog and typing with my left hand has also been challenging. So please excuse any typos in this blog.

Lymphodema is just another reminder of something that cancer has caused. Another way that my body is betraying me. It’s not something people talk about, eventhough it’s something that ANYONE can get. I mean look at Wendy Williams. She has lymphodema on her legs. Google it!

I feel like no one will understand the daily struggle. I am sure it’s hard to be empathetic. It’s all awkward. I mean what do you say ” hey sorry that your arm is swollen, that sucks”…. lol

I am optomistic that with this new Physical Therapist we will be able to get it under control. She has me very hopeful and even said it could be reversed vs. someone else talking about surgery. SAY WHAT?? That is a major surgery that I am not willing to put my body through. I am not even going to entertain that idea.

It has been 2 months of just pure craziness. I was not getting the right services, which I think made my arm worse. I had to make a ton of calls to make sure my insurance would cover the new sleeve and PT. It has been so frustrating and I am young and I know how to advocate for myself. I can only imagine an older woman who has no clue what to do. It is all very overwhelming.

I am trying to stay positive, and praying that this new chemo pill is doing it’s job. I am hoping that Cancer will stop with all the gifts. I mean seriously, I think I am due for a break. Do we get one of those? Nope! No breaks in cancerland. But I think I am due for some good news. I am having a PET Scan soon and I am praying for stable. Co-existing with cancer is my new normal. Fingers crossed!