Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, July 11, 2017

Oncology check up and The Anxiety Monster

Today I had a check up with my Oncologist.

First, let me tell you, three years out and I still have trouble saying things like, "Today I'm seeing my oncologist" without my stomach turning in knots. The word oncologist doesn't belong in *my* vocabulary. It belongs to other people. THOSE people who have cancer. Oh wait...that was me, wasn't it? Three years and I'm still not used to saying it. A life-time of oncology appointments to go.

I once said to my doctor, "I need to stop thinking of myself as a cancer patient. I don't have cancer anymore. You took it out. Chemo killed what was left. You people rebuilt my body. Why can't I just move on?" I could tell from his face he has had this same conversation many times with other breast cancer survivors. "You had breast cancer. You will forever be a cancer patient. Some days you may not think of it at all. Other days you may feel fear, anxiety, and even panic. For some people this will decrease as time goes on, but for others it gets worse. All of it is normal."

Why all the worry? Every year out from diagnosis is another year that cancer could rear its ugly head again. We are given a long list of symptoms that, if noticed, warrant a call to our oncologist: back pain, unexplained fevers, unexplained fatigue, abdominal pain, bone pain, loss of appetite, severe headaches, seizures...the list goes on. You probably notice these can be normal, every-day aches and pains, yet for the cancer patient they can trigger worry. "My back hurts. Why does my back hurt? I haven't done anything for my back to hurt. Maybe there is cancer in my spine!  My belly has been tender for days. Why? Maybe  I have cancer mets in my liver!"  Take me for example. The last couple of weeks I've been running fevers for no apparent reason. One of the chemo drugs I was on causes Leukemia in approximately 10% of those who received it, and the survival rate of those with  chemo-induced leukemia is next to nothing. So, when I started running fevers for no reason, it has been difficult not to panic. In my head I say, "The chances of actually developing that leukemia is very low. 90% of patients on that drug do NOT develop it, so stop worrying." But, if you've been reading here for any length of time, you know that rare is the norm in our house.

So, as I said above, today was my three month check up. Well, really it was 6 months, but anxiety preventing me from going three months ago. I know, I know, that doesn't even make sense! But I just couldn't do it. Walking into that building causes me to break out in a cold sweat, my heart races, and I always...always...end up crying in the exam room for some odd reason. Today I was not going to do that. Today I would walk in, get my blood drawn (OMG! Maybe this time they will find tumor markers in my blood!) I would ask my questions and get the heck out of there! I don't drink wine, but today it sounded really good.

Well, wouldn't you know, they have a new thing in place at my oncology clinic. It is a quality of care survey that will remain in my chart, and they wanted me to put down how important various things are related to my care. Think healthcare directive here.

"On a scale of 1 - 5, how important is it for you to be pain free in your final days, if "pain free" means you take medications that make you unable to function or think clearly."

Seriously?????

I felt my chin begin to quiver. Doggone it! I was NOT going to cry at this appointment! I started to take deep cleansing breaths.

"On a scale of 1 - 5, how important is it for you to receive nutrition by any means necessary - such as a feeding tube - if you are no longer able to eat by mouth."

As I looked at the paper, the tears were threatening to spill from my eyes. Blinking would have made them fall for sure. The paper became blurry as my eyes filled. The nurse finished her tasks and left me alone with that form.  I quickly reached for the box of tissues, dabbed my eyes, and shoved the tissue into my purse. "I will NOT cry for the doctor this time. I will NOT!" How does one answer these questions when one is not dying? What if I say today I don't want a feeding tube but in that situation I change my mind but can't voice that decision? This is a stupid form!"

I finished the form and pushed it away.

Finally my Oncologist entered the room. He had to do a double take, looking at the  name on my chart then back at me, since he didn't recognize me. (that is another post.) I told him about the fevers. He looked at my blood results and said it looked fine from his perspective but encouraged me to see my primary doctor if the fevers continue. He did his exam and gave me the all clear to not return for 6 months. (WOOP WOOP!!!!!) And do you know what? I didn't cry for him today. Nope! I maintained my composure. I asked intelligent questions, and I made it out of there without hearing those words "you have cancer" again.





Friday, July 07, 2017

Trying again - Running for Amos

A couple weeks ago I posted about Amos, but for some reason the link wouldn't work so I'm attempting again.

Back on April 3rd we packed up the family for a 10 hour road trip to Amos' sending state to finalize his adoption. FINALLY he would be forever hours. We were so excited! He has been with us two and a half years, it is high time to have this done.

Only it didn't happen that way. We arrived in the sending state to appear before the judge, only to be told we would have to start all over here in Minnesota. All the money on attorney fees we had spent was thrown right out the window. Whoever said adopting from he US is less expensive has no idea how difficult, and expensive, it actually is. You can read the whole story here, and why I'm "Running for Amos" to raise the last of the fees needed to complete his adoption once and for all.

******The widgets aren't working on blogger, so please CLICK HERE to read the full story and find out why we're having to start over. And if you feel like it, please share.*****