It's Been Awhile

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It's Been Awhile

I realized it’s been a long time since I’ve written any sort of detailed update. I’m sad to say that I just hadn’t felt like writing. I’m not exactly sure why.

My mind has been fluctuating between a state of “blah” and a somewhat darker space that I really don’t like to visit. Those are the instances where I really should be writing, but of course that’s not how I operate.

I think I’ve at least figured things out. Fortunately I’ve settled into what I guess would be considered “normal” life with cancer. Up until a few months ago, my life with cancer was more than a little chaotic. Constant drama in the form of infections, surgeries, ER visits, insurance BS, etc., were the norm. I won’t rehash all that. I know this is going to sound awful, but to some degree you end up getting used to that level of activity. In a sick sort of way it also allows you to not focus on the reality of cancer.

That probably doesn’t make a whole lot of sense given the fact that it’s actually all you’re dealing with. I think the difference is that other people are managing the cancer constantly for you, You’re not yet forced to totally integrate cancer and all that is associated with it into your normal daily activities. It’s not exciting, I definitely don’t mean it like that.

I certainly do not miss that category level 5 crap occurring on a regular basis, but for some reason that constant activity makes it feel like you are being more proactive in fighting your cancer. You feel like an active participant in the battle vs. just sitting around waiting for something to happen. Now that things are going along somewhat smoothly and according to plan, it feels boring and blah. I have to constantly remind myself that “blah” is a good thing in my world.

Let me get the update on the medical stuff out of the way. The last PET scan I had was a pretty good one. The spot on my liver was no longer visible and they actually used the word “improvement” when describing the cancer spots on my bones. This scan was back in July. My tumor marker had dropped down to 38.6 at the beginning of July. By July 28th it had jumped up to 62.1 Not huge when talking numbers, but a little scary when you are talking percentages. The funny thing was that I felt good and all my other lab tests were good.

My doctors know my tendency to stress out about the tumor marker, so she decided we wouldn’t do that test for a couple months and let the PET scan be the ultimate judge on how well this latest treatment is working for me. There really wasn’t a good explanation for my tumor marker number to jump up like that. The tumor marker isn’t intended to be the best indicator of cancer activity, but it had always been a pretty accurate indicator for me. I have to admit that not doing the tumor marker test has caused me a little anxiety, but I have been doing my best not to worry about it.

Overall I have been a fan of this latest chemo drug. The side effects have been minimal compared to the crap I’ve experienced with all the other drugs I have been on. The worst thing I experience is turning a nice shade of cherry red the day of and after treatment. I can handle that. I’d really like to stay on this drug if I can. My scan tomorrow will decide if that will be the case or if we move on to something new. If there is a substantial increase in cancer activity I will be moving on to a new course of treatment. I’m very anxious. I don’t want a new drug and a new set of potential side effects. I am quite anxious but I really am trying not to freak out about it (emphasis on the trying. All of you know how good I am at shutting my brain off in those matters).

Although my experiences with side effects and infections have been minimal these past few months, cancer saw the opportunity to slip in something else to replace those; excruciating and debilitating back pain. A level of pain that scared me. I had no idea a back could hurt that bad. I’ve had sporadic back pain since being diagnosed due to the cancer spots on my bones. I know now that the speakers weren’t turned up at all. They weren’t even plugged in. Now they’ve been turned up to 11.

The pain started in August and my doctors have been trying to figure out the best course of action to address it. Pain pills don’t even touch the pain. My doctors suggested it might be time to discuss radiation therapy on that spot in my back. I agree. I have an appointment with the radiologist on the 22nd to see what his thoughts are.

I was initially a little hesitant to pull the trigger on radiation because you can only radiate once in a particular spot. Then I remember how bad the pain got and I can’t pull the trigger fast enough.

Next up, teeth. Teeth are my absolute least favorite thing to talk about and deal with. They have actually gotten worse since I last admitted the extent of what was going with them. Part of the reason is that I haven’t been to the dentist. When I lost my COBRA insurance, I also lost the ability to continue going to my wonderful dentist. They did not accept my new insurance. The thought of starting over AGAIN with a new dentist was overwhelming, so I didn’t. I am definitely paying for it now, but it’s not like I couldn’t see that coming. At this moment I have at least 4 or 5 teeth that are cracked in half. They constantly cut my mouth and I am afraid to eat anything I have to chew. I’m sure having cracked teeth can’t be good for me as far as the risk of infection goes either.

A couple of those cracked teeth are teeth I’ve already had work done on. I took an honest look at my mouth, factored in my tendency to procrastinate and avoid the dentist, and ultimately came to a very difficult decision: My teeth have to go.

I’m horrified to be saying this out loud. I decided to get dentures. I thought about how many of my teeth need work (ALL), the number of trips to the dentist that would entail, and the cost. I don’t want to spend the next two years of my limited life slowly getting my mouth fixed. I am already at the physical therapist 2-3 times a week, and the cancer center at least once a week. I cannot imagine factoring in even more time to spend at the dentist. Also, talking myself into walking into what is certain pain each visit would be extremely difficult. I think I’ve known that dentures were the way to go for awhile now, I just had a hard time admitting it to myself. I’m scared. I know me well enough to know that I will never commit to getting all my teeth fixed. I will have the best of intentions, but I will derail. Plus even if I did, there will come a time when I will have to be back on those ugly chemo drugs. Once again they will wreak havoc on my teeth, and then I would have to redo the work I had already done. I don’t think so. I can’t do it.

The condition of my teeth is affecting my self confidence. I’m hesitant to smile. That is not acceptable. Without hair, boobs, eyebrows, or happy fingernails and toenails I feel like my smile is the only thing I have left. Cancer can have my ugly and cracked teeth. I am going to get myself some pretty new teeth that cancer can’t damage.

Factoring in all the above, I guess it’s fair to say that I’ve been in a funk. I tend to retreat and hide from the world when that happens, which is really the worst possible thing for me to do. I end up lurking online and not posting much. I troll the breast cancer groups that I joined on Facebook and I’m inundated with nothing but depressing crap. Definitely not something I should be doing when I’m in that state of mind.

It seems like there were a lot of women from those boards who were dying. Women that were younger than me. Seeing the news of those deaths was a reality slap to the face. It’s always a struggle to keep death in its place. I have to acknowledge death because it’s neither healthy nor smart to live in denial. At the the same time, once you do that it’s very hard not to let the thought of death seep into your mind and take over your thoughts.

Ok, now for the brain ramblings portion of my update. I am really not intending for it to be depressing but just a heads up that it might end up taking on some depressing qualities. Please bail out now if you’re not in the mood for that sort of thing. Reading about all those women dying of metastatic breast cancer got me to thinking about my own mortality. It’s not something I like to think about but I feel like I have to. I’m not afraid to die. I am afraid of knowing I am about to die. I am afraid of seeing that look on the face of my loved ones once they realize that moment is in the near future. Chances are that when that time is here, I will be too out of it to truly realize it. Still, there will come a time when we hit the end of possible treatments that are effective. The thought of that moment petrifies me. I think the thought of having that moment scares me more than anything else.

I’m not saying I think that moment is even remotely close to being on my agenda, but it’s still something I think about all the time. As far as my part in the whole dying thing goes, I actually have it pretty easy. I just stop thinking. It’s those I leave behind that have the hard part. I feel guilty about that.

Maybe I would think more of dying if I was more religious. I’ve noticed that those people who are strong in their faith seem to be almost excited about getting to heaven. Please don’t start turning colors over that statement, I don’t mean it in a negative way. As a matter of fact I am sometimes jealous of their ability to look at death in that manner. I consider myself to be 50% spiritual and 50% scientific. I do believe there is a heaven. I want to believe that it is everything I’ve been taught over the years. I do believe it to a certain extent, but then the scientific part of my brain takes over. I just can’t been like those people who are all in and sort of excited. After all, it’s not like there is a lot of recourse if you get there and it’s not what you expected. It’s a little too late at that point.

I’ve told Dennis that I plan on asking how I go about haunting my friends and family. I think I would rather enjoy that as my full-time job. And when I say haunting, I mean it in a fun way. I am not talking that poltergeist/demonic stuff.

Another reason my death has been on my brain lately is due to the amount and level of pain I was experiencing with my back. When I first started this cancer journey, I said I would never give up fighting and I would not go quietly. I still stand behind that. I couldn’t comprehend why someone would forego treatment or just give up. However now that I have experienced epic levels of pain I realize I was in no position to judge those people. Now I can at least understand how someone might get to the point where it feels like the fight and the pain just might not be worth it. It’s come to the point where your quality of life has been seriously compromised.

The fact that this can happen really scares me. I don’t want to ever start thinking like that. I don’t even want to admit I’ve even had that sort of thought. It was very hard for me to tell my doctor the level of pain I was experiencing and what it was doing to my mind. I don’t know how I expected her to react. I’m sure she has seen and heard it all. She didn’t freak out or make me feel stupid. She told me it’s perfectly normal to have that thought, and that is why I need to be honest with her as far as my symptoms and pain levels. I need to share what I am thinking. I don’t need to suffer quietly in an effort to appear strong. She’s there to make sure that things don’t get to the point where I start having those thoughts. She’s there to help but I have to let her.

That is a statement I need to remember in all other aspects of my life. I don’t need to do this alone. I am not alone, I am actually quite far from it. I don’t need to try to be so strong that it’s at the expense of my health and general well being. I’ve realized that I’m probably not really fooling anyone anyhow. I’m actually more transparent than I care to admit.

Believe it or not this is actually a condensed version of what has been going on these last few months. I don’t want to bore you to death on my first day back. I promise to post an update as soon as I get any info regarding my PET scan tomorrow. Thanks again for keeping us in your prayers and for all the positive thoughts you guys send our way.


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