Another Dr. S

• Appointment with Dr. S (anesthesiologist) at the Pain Management Center at Missouri Baptist Medical Center

My appointment went really smoothly this morning, from check-in to vitals to medical history to exam to meeting with Dr. S. We're going to try and resolve my neuropathy (left-sided numbness and pain in my hand and foot) with a medication and meet again in a month.

I liked Dr. S but in discussing my appointment with a friend afterward I realized that I wasn't sure what kind of physician he is, so I popped onto his information page for the hospital and found this information about his clinical interests:

"Cancer-related pain syndromes, neuropathic pain disorders, musculoskeletal pain of the back, neck and joints. Spinal stenosis, sciatica, post-operative pain and complex regional pain syndrome."

I'm not sure that I knew there were cancer-related pain syndromes. I guess I'm seeing the right guy.

Bone marrow

• Bloodwork, bone marrow exam and Neupogen injection at Siteman West County

That's an interesting looking contraption. And those needles don't look like any fun. I think I will take the medicines you are offering to make me more comfortable.

http://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/basics/why-its-done/prc-20020282

Full time gig

• Bloodwork at Siteman West County

There's an on-line patient portal that I can access on my phone where I can view test results, e-mail my physicians, see appointment times, etc.

If that picture doesn't explain why sometimes this cancer stuff is all I can talk about... I don't know what to tell you. 11 appointments in the next two weeks. Who has time to think about anything else?

Frustration

• Bloodwork and treatment at Siteman West County

I can't repeat here what I said when I saw my lab results this morning and my ANC was again too low for treatment, having fallen back down from last week's normal result. How. What. It makes zero sense. It can't be. But it is.

No news is good news ?

• Bloodwork and appointment with Dr. S (hematologist) in the CAM building at Big Barnes

I feel like I did learn a few new things today and it's always good to get a better understanding of things... however Dr. S does not have a magical solution for my neutropenia (low neutrophil counts.) She did rule out a number of things, having gone through my medical history very thoroughly, but she feels confident that it is chemo-induced neutropenia. Dr. S mentioned that lowering my irinotecan dosage or removing the 5-FU from my protocol could help to keep us on a more regular chemotherapy schedule, but that's really something that she'll need to discuss with Dr. T.

The good news is that my absolute neutrophil count is back in the normal range this week and if I hadn't had surgery on Wednesday, we would have been able to have treatment.

True story

Replacement

• Outpatient surgery at Big Barnes to replace the stent in my left ureter with Dr. D

My stent has to be replaced every 3-4 months and today was replacement day. There was a slight chance it could just be removed (and not replaced) but Dr. D wants to see another set of scans before the next surgery and then possibly remove it, in 4 months. Boo hiss. The stent really limits my physical activity and that can be frustrating since being active (even just walking) is definitely my best stress reliever, but all I need to do is remember the discomfort that I was in before they placed the stent. Hmm. I love you new stent, I guess you can hang around for a little while.

Flood the world

• Therapist appointment with Dr. M

Today Dr. M talked to me about being too hard on myself. It's true. She actually read me a children's book called Zen Shorts. There were 3 short life lesson kind of stories in the book but my favorite part is the author's story about the name he chose for the panda in the book, Stillwater. The author explains that the name was chosen as a reminder that only when you are looking at your reflection in still water... can you see yourself clearly.

Lemon-aid

Today a couple of my friends and their kids (and their neighbors) had a lemonade stand to raise money for the American Cancer Society as part of our fundraising for the Chicago marathon. Lately I've been getting a little emotionally overwhelmed when I hear my friends talking about their long training runs and their fundraising efforts... and today hit me pretty hard (in a good way.) So many people making so many things happen to support me and my cause. You probably can't read the post-it on my shoulder that I got from one of their kids, but it says You Rock Di :).

Feeling low

• Bloodwork, appointment with Dr. T and treatment at Siteman South County

My neutrophil count is too low for treatment today, even after a week of Neupogen injections. Crap. Dr. T's office is going to set me up with appointments to see a couple of specialists... a hematologist about my low neutrophil count and a neurologist about the neuropathy. Some good news is that my brain MRI looks good and does not show any signs of cancer having spread there. And also in the good news category, my CEA tumor marker test result from today is actually back in the NORMAL range (barely).

Watch where you walk

 

Woof

• Neupogen injection at Siteman West County

I've had Neupogen injections every day this week, and with them all scheduled near 10 a.m. (the magical pet therapy hour)... I've gotten a lot of furry love.

Spinning spinning in the spinning pool

• MRI of my brain at Barnes West County Hospital

We're trying to figure out why I'm having constant neuropathy (numbness, tingling and pain) on my left side, in my foot and ankle and in my hand and forearm. I can't sit still, I can't sleep. There has to be a reason... right? (The chemotherapy that I am on right now is not known to cause neuropathy.) I called and discussed it with Dr. T's office and they ordered a brain MRI.

I have had a brain MRI before, actually two I think. Anyway, I'm not sure if it is a particular cycle of sounds during a brain MRI or if it is just because the brain is the target, but it makes me feel like I am spinning. I spend the scan time literally trying to convince my brain that I am not spinning in circles. "Listen brain, feel that table beneath you, not spinning. Feel the side of the tube pressed up against your elbow, not spinning." It doesn't work. The spinning makes me nauseous and makes me feel out of control. Thankfully this MRI only lasted about 20 minutes. 20 minutes of spinning. Go outside and try that! =)