Honesty is best…

I have wanted to write the last couple of days, but I haven’t been in the mood. There is certainly a lot going on around me. Why haven’t I sat down and cranked out a new post? My blog is new, so this should be exciting for me. Part of it was I wasn’t sure whether to play catch up on some old stuff, or write about the latest. And part of it, the real reason, was that I just wasn’t happy.

If my blog is about the silver lining, then there is a feeling I need to find it, live it and roll around in that glitter all the time. But I can’t. Because no matter how good life is, it isn’t that way every moment. Recently, a friend reminded me that that just means I’m human. When I’m down, I’m just being a real person. It’s OK to show it. I know she’s right. Thank you, Paula.

I’ve been a little upset since the last meeting with the counselor we are seeing at my oncologist’s office. I’m supposed to be trying to gain weight before the transplant. I’m a little thin and they are worried I will lose more weight during the process. Being told to eat more is fun…until they also tell you to stop exercising. I’m sort of passionate about exercising and it takes care of my needs to be social as well. I don’t feel like eating as much when I don’t exercise. And now let’s throw in that I’m not supposed to be drinking any alcohol either. Nothing like taking all the fun stuff out of my life at once. I know it’s for my own good. I know it’s temporary, but I had wanted to have some serious fun before I have to stop everything. I had plans. And I feel like I’ve been ganged up on. So, there you have it. That’s how I have been feeling.

But you know what? I’m better now. Today was a great day. I had to start work very early this morning so we could leave for Stanford by about 11:30. I had several tests that needed to be done and it was tightly scheduled. I was kind of dreading the bone marrow biopsy. It was to be my third one. The first one last summer really hurt. The one I had in April was better. Today, I was so well taken care of, it was almost bordering on fun. Great nurses, lots of lidocaine… they made sure I was comfortable the whole time. I realized I was laughing and having a good time. I realized I had been doing that since I arrived at my first appointment. I was back. And it was good to be back!


(Pictured above playing with the drill they use for the biopsy)  I’m very happy to say that this was done in the ITA (the Infusion Treatment Area) where I will be spending a lot time coming up. Everyone was so nice. I’m actually going to be excited to come back and see them again. One of the nurses seemed to have a quirky sense of humor. I wouldn’t know anyone like that, now would I? I took an instant liking to her. When things don’t suck during this transplant, it’s going to be fun. I can just feel it. My life is pretty good. Wow, it’s nice to see the sparkle again.

But I’m going to try to remember that I can write even when the finish is a little dull. Being happy is a work in progress. And a little down time is OK as long as you can start laughing before too long.

Let’s Get This Party Started!

Where am I and how did I get here? It’s been almost a year since my life changed. Actually, it was a little over a year ago that I found out something was wrong. I just didn’t know how wrong…until D-Day. Diagnosis Day…July 16, 2013.

I’ve always been pretty healthy. By that I mean that I could do things like running 50 miles on my 50th birthday. I wasn’t always doing crazy things like that, but I’ve always had it in me. Nothing had really changed in 2013. I just had persistently swollen ankles.

I’m a runner and we can explore that whole thing later, but my first doctor visits in 2013 were to deal with my case of plantar fasciitis that was ruining my running life. Finally after realizing that both legs should not be swollen, I sought medical advice for that. I was in denial though, so it wasn’t until after being urged by family and friends.

Some lab work that indicated low protein in my blood led to my urine being tested. It was found to be full of protein. The nephrologist was the next step. I’ll spare you the frustration of trying to find a doctor with new health insurance.We had just switched from Kaiser when this all started, and had we not been pushy, I might still be waiting to be seen! I had a kidney biopsy in early July (exactly a year ago today as I write this!)  and the results took an extra long time. Instead of getting them on the 11th, I waited an extra 5 days. I was frustrated. Which little kidney disorder did I have? What meds would I be on? Would it interfere with running? That’s all I wanted to know.

Finally they called and asked that I come in the next day. I ignored the sense of urgency in the nurse’s voice, because I just wanted to get in there and get this done. The appointment was brief. I had something called “Amyloidosis” and it was “hard to treat”. Later in the day I realized that’s a code word for “you’re going to die from this.” She had told me not to google it because it would scare me.  I did, and it did. It turns out that she said that because most of the info on the internet is out of date. Treatments have come a long way. People live with this for a lot longer than they did a decade ago. Mine was found early while I’m still relatively healthy. So, that’s bonus points for me. But there is still no cure. It’s still probably going to kill me, eventually. Wow. That was not exactly what I was expecting to hear that day!

A bone marrow biopsy was done and I found out I have lots of bad plasma cells in my marrow. That means I have asymptomatic (or “smoldering”) Multiple Myeloma too. That’s a cousin of “Amy.” It’s cancer, and it isn’t curable either. Since the treatment is the same, no one made a big deal of it. They sort of forgot to tell me that the prognosis is way worse to have both. I learned that not too long ago from a published study.

So, I started chemo on August 12th. After 8 months, I got to have another bone marrow biopsy.. (They are super fun…not!)  Although the “light chains” in my blood are in normal range now, indicating success on the war against “Amy”, I still have a bunch of plasma cells. We discussed continuing chemo, but my husband, Howard, who is my biggest advocate and cheer leader and saver of all things Kimmie, wanted more. And I was ready to go along.

That more is my next adventure. It’s a stem cell transplant. I’m getting ready for that now. It will happen next month.

Strangely enough, I have felt fine throughout this whole thing. I run, I workout in the pool. I go to spin class. Had I not been continually injured, I would have run a marathon or 3 in the last year. Again, more on that later.

I don’t get it. I’ll never get it. I’ve always been a “Why not?” kind of person, instead of “Why me?” So, I don’t walk around thinking this is unfair. ^&*## happens, and this is my %%&*#. It’s just weird because I feel really normal. Having said that, I do feel I was supposed to learn something from all of this. I think I have. And I’ll be sharing that with you in the posts to come.


Life is uncertain! Eat Dessert first!