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Article by Wendy McCance
It has now been a year since I was diagnosed with smoldering multiple myeloma (blood cancer). This last year was not fun as I absorbed the information, got poked with needles more times than I would like to count and scared myself silly with all of the what if’s and the preparation for worse things to come.
Well, here’s the thing, thankfully, nothing has gotten worse. When you are smoldering, you have cancer, but you are in the watch and wait mode. The doctor will take blood samples every 2 weeks, 1 month, 3 months, 6 months or once a year depending on how your progressing and if the numbers aren’t out of control, you wait some more. Chemotherapy is just out of reach because your symptoms are just low enough to get by without any treatment.
I started out by getting my blood taken every two weeks and then progressed to 1 month and I am currently (or was) getting checked and my blood taken every two months. Because of what my blood results have been my doctor decided that two months was a fair amount of time between appointments. When I first saw my oncologist, he predicted I would be starting chemo within a year, but I made it to my 1 year anniversary still smoldering away.
Over the last year, my stress level has been high. I was doing a lot of overeating because (and I know this may sound crazy) I am not a big person and I was terrified I would begin chemo and would become way too skinny. I have seen so many people who are going through treatments and they are so rail thin it truly terrified me.
Well, I succeeded in gaining weight and then became more depressed because I didn’t like the way the extra weight felt. I was just carrying around a daily reminder that I was scared and felt miserable.
This last year I spent additional time with the kids by cutting back on the clients I worked with. I just needed the extra time to be with them. I did this until they were back in school. Then I began working my ass off so I could save as much money as possible. I was afraid I would bankrupt the family if and when the cancer might progress. I had already seen numerous medical bills from the MRI’s and PET Scans and biopsy’s I had done and even with decent health insurance, we had to get on a payment plan to get those bills paid off.
I organized the house like a pregnant mom nesting by making sure the house, the bills, important paperwork and so on was all in order. All those things that should be taken care of, but you know, life gets in the way and you don’t save like you should or you don’t get the house organized like you would like. I put together a book of recipes for the kids with the favorite dishes they loved and I started thinking about my personal items and what would go to whom in the event things got really bad.
I obsessed about how to make life simple for the family and how not to burden them in any way if I got sick. Medical bills would pile up fast and who knew if I would be working. They would need money saved away. I wanted them to have easy, stress-free access to items in the home. No searching or messes to go through. Just beautifully organized shelves and drawers and closets. I wanted everything in every part of their life to be as neat and tidy and put together with a bow on top for them as I could manage. I was a neurotic mess.
So, I finally got into the groove of this new life and I began calming down. No matter how much you try to prepare, you can’t make everything perfect, but you can drive yourself perfectly insane trying.
I did a lot of walking with my husband and had several big conversations about the future. I had been thinking about something for quite a long time and was nervous to bring it up. I didn’t want my husband to look at me as a quitter or someone who runs when the going gets tough. But, I needed to share with him my plan going forward.
Finally, after starting to kind of discuss what I had on my mind, I finally just told him what I would like to do going forward. I decided that unless I feel sick and need to get in to see the oncologist, I would only have an appointment once a year.
You see, I was going every two months. I would have a month where I could breath and then the next month I would panic. I would get more and more anxious as my appointment neared and was an absolute basket case the day I would see the doctor. I was never able to go alone because I hated the blood test (it wasn’t often they got the blood they needed on the first poke or the second) and I was always terrified that this would be the moment I would be told that things had progressed.
When I started the ketogenic diet a few weeks back, I did so mainly because I had heard that sugar and carbs that turn into sugar is what cancer like to feeds on. Eliminate the sugar and the cancer starves. This could create quite a delay in the cancer progressing so I was sold and began the plan. Plus, to be quite honest, it was time to shed all of that stress and worry weight I had accumulated.
Well, as I began this new way of eating I began to think of what I should be doing physically to stay in shape and then I thought about what I was doing mentally. I needed to be as relaxed as possible. I believe the more stressed you are the more susceptible you are to getting ill. I think your immune system takes a hit and them disease comes in and takes over.
All I could think about was the stress I endured every other month. I just couldn’t seem to get it under control. I decided it was time to take over and make some decision on how to lessen the burden I carried.
I have always been in tune with my body. I can tell when things aren’t right well before they show up on any test results. I went to my doctor a year ago because I wasn’t feeling well. I knew that what I was experiencing wasn’t due to my hypothyroidism or fibromyalgia. This was different. There was pain and stiffness but my symptoms were in unusual places and just felt like a different pain than anything I had felt before. My rheumotologist was stumped too but he ran a bunch of tests anyway in hopes of answering the mystery. We were both shocked when the blood test results showed the protein levels of someone with multiple myeloma.
I knew something wasn’t right and I trusted myself enough to get it checked out. Apparently it’s not typical to have symptoms when you are in the smoldering multiple myeloma phase, but I have had a pain in my lower back the size of a quarter that has been a constant pain for a year now. I get rib pain and chest pain too. I used to think the chest pain was a heart attack, but now I know what it stems from.
Anyway, the reason I bring this up is because I know myself and am certain I will be aware when the cancer progresses. I have decided a once a year checkup is fine for now. I think it’s important to check in and see how things are coming along, but I don’t want to obsess over it anymore.
When I took that walk with my husband and explained how I felt, thankfully he understood and supported my decision. In fact he was more understanding of how I felt than I would ever have thought possible. Maybe he was going through the same ups and downs as me and it was wearing on him too.
My decision to limit my appointments came down to this, I would rather live in the moment and enjoy what’s in front of me than go through my days in an almost constant state of concern. I just couldn’t stop the panic no matter what I did and it’s no way to live.
The worst part of the whole situation was that when I worried about an upcoming appointment, it put everyone on edge. The kids would be concerned, my parents and friends would want to know how the appointment went and everyone held their breath hoping for the best. It made me feel so awful to see how my situation affected so many people. It felt unfair. I hated that I felt I was dragging everyone down with me. Especially the kids. This was no way for them to be growing up. I don’t want them worrying that their mom has cancer.
If I were to go back to the doctor and I found out I had a year to live, it would still have been worth it. I dread the idea of extending my life by being poked and prodded and so sick I can’t get out of a bed. I don’t want to live that way. I would rather live well now and then have whatever could happen down the road happen quickly and be done.
So, I’ll make an appointment at the end of the year and see what happens then. But, for now, I am feeling good, my stress has lifted and I am enjoying life. I know I have made a very controversial decision, but I am so happy to have made the decision to enjoy life now and worry about the future when it appears. And, as my husband said, I wouldn’t even know I had cancer right now if I hadn’t felt off in the first place and decided to get a checkup. Knowing I have cancer in this last year or never having found out about it would not have made a difference either way because we are just watching and waiting anyway.
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