Well, that was fun! The drive in to Boston started out just fine but ended up being a nightmare (nothing new, really) when I hit the city outside of the City. Without any traffic, it would normally take about 45 miniutes to reach the hospital. Today it was almost 90 miniutes. And I wonder why my blood pressure is high when I come here.
Maneuvering the parking garage is always fun too. Dana Farber's garage is 7 levels under ground. I'm parked on level six. Going to be packed in there for sure!
Get off the elevator and the smell hits me. Hits me hard. The smile on my face has just turned into a worried and sad frown. This building has a smell to it that I just can't explain. It always hits me like a ton of bricks. It is the smell of sickness.
Start walking over to the lab service area and notice the check-in desk has moved to the front of the room. No line. I check in and am given this yellow tag to wear so they can track the wait times and know where I am in the building should they need to find me. Tag. I'm it.
Now that I have my yellow tag and my standard issue wrist bracelet with all my info on it; it's time to sit and wait. The waiting room, per usual, is a sea of sick people with their concerned loved ones in tow. There are few empty seats. I finally find a spot where my husband and I can sit together. We sit. He asks if I am ok. Yes. No. Seeing all these people here, oxygen tubes and those doctor face masks hide a lot of faces. This place is full of worry. Cant't wait to get upstairs where it isn't as bad.
I'm called almost right away. I recognize the phlebotomist and panic. I had her last time. I am a difficult stick. Very difficult. She had a really rough go last time. This time I opted not to warn her about my difficult veins. She did "get me" on the first stick though. One vile anyway. My vein was on the verge of collapse when I told her that I am difficult and reminded her of our last visit together, not that I expected her to remember me. Anyway, we had to find another vein. And so began the poking and digging and heat pads and squeezing...after five miniutes she finally found a good one to fill the remaining five viles. I will have a bruise or two but it's done for this time.
Ok. Time to go upstairs. It's usually a bit happier up here, not as many people. And when there are, they typically aren't of the sickest. I check in, pass in my yellow tracker and am told I seeing the nurse practitioner! WHAT? I wasn't told that. I have it on my schedule that I am seeing Dr. L. She told me they tend to work off each other's schedules. I walk away with a bit of sadness and frustration but will give the woman a chance. What other choice do I have?
Now I'm in the waiting room. There are a lot of people here today. Hard to find an open seat. We do find a place to sit together and I immediately start writing. I want to remember my thought s and feelings as they happen. Looking around, I see some smiles. People are talking more freely. There is more hope in the air.
Here I am blogging.
A hospital volunteer just approached us to inform us of all the benefits and programs the hospital has to offer. They let you borrow iPads for example. Yup, I meant to grab one on the way up so I wouldn't have to type on my iPhone. Oh bother! She also informed me about a program the hospital has where you can create a web page to keep people informed of your treatment and how you are feeling. "Thankfully I'm not at the point of needing treatment", I politely say and continue with "you all do a great job of keeping things around here more upbeat". We have a few more words and I'm back to blogging on my little iPhone.
In I'm called to the office. Waiting to meet Dr. L's nurse practitioner. Ginger is her name. In she walks introducing herself to me and asks quizzically who the person next to me is. "and you are?" she asks. "I'm Rich" says my husband. She looks at us both with a confused look and asks if he's my brother? WHAT! I know we are both plump and blonde, but I dint't think we look like we come from the same bloodline. "no" I say. He's my husband. She chuckles and says we don't look old enough to be married. Ummmm.... I'm 36, but thanks.
We continue exchanging the niceties. Turns out she grew up in the town I live in, which so happens to be the town I grew up in. The banter continues before she asks me how I've been feeling. "OK, been having some bone pain and my hip is now hurting. My hip and my shoulder. It's a new pain. Mostly a discomfort, but sometimes a pain". She asks me a few more questions before giving my tests results, the ones that are ready. Everything is within normal range. So that is all good.
She went over what all my numbers are and why I am categorized as a MGUS/Smoldering Myeloma patient. Dr. L does this at every meeting and with each meeting I understand things just a little more. So, we all have some protiens in our blood. They are there to help with infections and things like that. The problem is that I have an extra protein; a Gamma M Spike. Mine was .81 at diagnosis. The troubling part is that even that number is relatively low (should be zero), so one would think I wouldn't have plasma cells in my bone marrow. I did. 10% back in Feb of 2011. That is what put me in the category of having Smoldering Myeloma. But, because my M spike is so low in my blood, I am still in the MGUS stage. Although, I have Smoldering Myeloma. Is your head spinning yet? Mine is. Deep breaths.
So, my numbers last year:
Hopefully the number this time will continue on that downward trend. I will know on Tuesday or Wednesday of next week. So, if you are really confused, no worries. I'm not the best at explaining all this. I have a hard time understanding it myself. Just know that everything is status-quo for now.
OK, blood is discussed. I am healthy. What about this hip thing?
She calls in Dr. L. He ordered and X-ray and said if things don't improve over the next month (been getting worse since November), he'll order an MRI.
Now, while we were waiting for Dr. L to come in, I decided to ask Ginger about my "pressing" question on whether or not it's OK to have another baby. Her first question; "why would you want another one" I was taken aback by that question. She went on to tell me she's not the one to ask because she has a disease that could be passed on to her children so she opted just to have one. I tried to clarify that I wanted a scientific answer. Hubs asked whether or not it would/could make things progress. She again said she's not the one to talk to about this and I should talk to my OB.
I felt so little. I felt like I was being judged. It's not up to her to judge me and my decisions or thoughts on enlarging my family. It's something I've always wanted to do. I planned on having three children. The third one would be here (providing everything went well) by now had I not been diagnosed with the MGUS/Smoldering Myeleoma. I know this is ultimately my decision. It's a difficult one to make. Yes, I know I have two beautiful children. I realize I *should* quit while I'm ahead. I'm not asking for a moral debate; I was asking for some science. It's left me feeling real bad. I will get over it.
X-ray went fine. Everything was ok. No lesions. That's a great sign! Not sure what it is. Took a urine to check for UTI. We'll see.
Four and a half hours. That's the time I spent at Dana Farber today. I sit here tonight happy that I am still healthy. I sit here happy that I am *probably* a long ways from being sick. But, I am also sitting here exhausted. Emotionally and physically. Seeing sick people, being judged about the possibility of having another baby, and just being is exhausting.
Tomorrow is a new, brighter day.