Living with Cancer or Dying of Cancer?

Before I was diagnosed, I assumed that any cancer diagnosis was a death sentence, even when the cancer was caught early. I was convinced that no matter what, it would eventually rage out of control and kill the person that had it. If I got money for every time I heard one of my grandparents say, “So and so is dying of cancer…” I would be rich enough to retire.  I always hated hearing stories like that, and worded in that way.

 After I was diagnosed, it took several months to adjust to all of the change. I remember the day I was told that I hadn’t caught the cancer in time, I was devastated. In fact,  I think the first words out of my mouth were “oh shit I’m going to die…” At the checkout desk, I was waiting for the receptionist to make an appointment for an MRI scan on my head. One of the bone tumors was on my skull, so they had to make sure I didn’t have disease in my brain. I saw a magazine titled, “Living with Cancer” and all I could think was, “I don’t want to live with cancer!” I just wanted to run away.

Today, I still have moments when I just want to pull the covers over my head, take a Xanax and forget my troubles for awhile. But most of the time, I would definitely say that I’m living with cancer.  I've felt like I was dying a few times, but I never said it out loud. I guess I was too scared to even think it, much less say it or write it down. Sometimes I fantasize that the doctor will come in to the exam room one day with a baffled look on his face and say, “I just don’t get it, but there is no evidence of metastatic disease…” I believe this can and will happen if it’s part of God’s perfect plan. Only He can give me total healing, but that may not be part of His perfect plan. I just have to keep praying, and never give up.

I got my scan results on Wednesday (1/23). The news wasn’t great, but it wasn’t terrible either. Good news first: organs are still clear and healthy. Not so great news: my bone mets are the same and I have a teeny tiny new met in my lumbar spine. The doc thinks that it has probably been there all along, but maybe the scan didn’t see it last time. I don’t have any new pain, which is great. Since the new met is so tiny, the doc is going to keep me on the same chemo for now. So no break yet. The scan also showed bone loss in my right hip! So I have to be careful because I’m at a higher risk for fractures. I sure don’t want to break my right hip after everything my left hip has been through. To add icing to the cake, when I got to the chemo room, I found out the blood work showed that my platelets were too low to have chemo. I’ve never had to skip a treatment so it was scary to hear that after all this time.

While I am thankful that once again, my organs are healthy, I am pretty disappointed and scared that my bones just don’t want to get better. All of the mets are in my spine/lumbar area, so what if I’m walking along and my back breaks or I end up paralyzed?? It also scares me that I’m still struggling to get my left leg in shape while the possibility of my right hip breaking looms over my head. So I just have to take things one day at a time, sometimes one hour at a time. I’m going to keep exercising, but not too hard. I’m going to keep eating healthy and drinking lots, so my body can stay strong. Nobody seems to know what I can do to bring my platelets up on my own. I asked two nurses and there really isn’t any dietary thing I can do, although my husband took me out for a big steak Wednesday night to “build my blood.” I Googled it, thinking that the internet would have an answer for me. The only answer I found was “don’t do anything to make yourself bleed…” Really? That should be common sense LOL. I have no plans to go play in broken glass or use my husband’s table saw haha.

So I go back on Tuesday 1/29 for more blood work. If it’s all good, then I can have my treatment. I still feel very blessed and lucky to be here and I’m glad that I have a common cancer with a lot of treatment options. Some cancer patients only have one or two treatment options. Once those are used up, if the tumors don’t shrink, there isn’t much the docs can do. Every time I see my doctor, he emphasizes that I have lots of options. It always gives me comfort. I’ve joked with him several times that I would jump in a microwave if he thought it would shrink my tumors LOL.

My Cane - Friend and Foe

I got scanned on the 10^th and get results on the 23^rd. Hopefully, I’ll be posting a good update on that day. I’m more emotional at scan time and tend to be a little more defensive. It’s kinda like having PMS haha. My cane is a particularly sore spot for me. I’ve needed assistance walking for over three years now, and I’m used to being on a cane – probably a little too comfortable. I’m terrified of falling or straining my back by penguin walking. So as I build new muscles, I practice walking without my cane for short periods of time, and only around the house. It’s been a long difficult process and I’m working hard, but as the surgeon told me back in October, it’s going to take a long time for muscle to grow around the prosthesis. I’ve been asked questions about it, and I don’t mind talking about it. Generally, most people ask about my cane out of concern, and I appreciate that. I have a few versions of the story – they are all true, but I pick the version that’s most appropriate for the situation/person asking about it.  

·         Story 1: The easiest version - I broke my hip and had hip replacement surgery.

·         Story 2: The medium sized more detailed version that works when story 1 generates questions - I have breast cancer and it spread to my bones and broke my hip, so I had hip replacement surgery.

·         Story 3: Full blown blog style version with all the gory details for the people that really really want to know everything.

I’ve had a few experiences that have made me uncomfortable, such as people I don’t even know asking why I’m on the cane, and then they say stuff like, “Well you should be better by now! It’s been several months…” It’s very tempting to be rude and just say “Hey jerky, cancer ate part of my leg…” but I try to let it roll off my back and move on. The last time I was at the oncologist’s office, an older man sat down next to me and asked what the deal was. So I gave him story number 2. He proceeded to count the time on his fingers and said, “well you should be off that thing by now…” I didn’t know what to say, so I started looking at Facebook on my phone, hopefully giving off the vibe that I was done talking. I just wasn’t in the mood to explain or feel guilty because I’m still gimping around.

I used to put my foot in my mouth all the time. When I was working my way through college waiting tables, I waited on a lady about every other week and she had a cast on her leg from hip to toe. She acted very uncomfortable and needed help getting around. She was pretty young too. So one day, she came in without the cast. I rushed over to her and gushed about how happy I was for her that she finally got rid of that darn cast and commented that she must have had one heck of a fracture. She replied with “I didn’t break my leg, I had to have it amputated…” I was so embarrassed. That experience put the brakes on my big fat mouth for awhile. But what has really cured me of the foot in mouth disease is number one, spending over three years in management at a big company (that’s what I did before I moved to web design), and number two, having cancer. I really watch what I say to people now because you never know what a person is going through, and you have no idea how it feels until you are faced with it.

I do my exercises every morning and every night, seven days a week. It’s hard to be patient, especially when I hear stories about people much older than me having traditional hip replacements, and they are up moving around without assistance within a few months. I’m not minimizing their experience. I think any joint replacement surgery, whether it’s the result of disease or injury, stinks. I don’t wish it on anyone. I admit though, that I have moments of frustration. There are mornings when I wake up and don’t want to do my exercises, wondering what the point is. I make myself do it anyway though. Even though it’s taking a long time to build muscles in my hip, I guess the exercise is helping me in other ways too. Everything I’ve read about cancer and chemo recommends exercise.

I really do believe I’ll be able to walk without assistance someday soon. Me and John are going to Gatlinburg in April, so I’m really hoping I’ll be in good shape by then. I just have to keep pushing and keep praying.