Wednesday, November 7, 2007

Back home again

Day +162

It has been a long few days and we're just now getting settled back in. We got into Houston late Sunday night and stayed in the hotel connected to the medical center. Very convenient if you ever have to go. There's a skybridge that connects the two buildings and you can get your blood drawn at the hotel for labs.

Our first appointment was for 8am and luckily, our next two appointments were in the same location. Blood draw, variable lab test, and a chest x-ray. Unfortunately, I didn't know that a test to check my Prograf levels had been ordered and I took my pill, when I shouldn't have. I had to sit trough a fifteen minute lecture from the phlebotomist who told me that I would have to come back after 1pm to redo the test. After this little morning wake up we had to go to infusion therapy because one of my lumens had become blocked again. Those of you who follow the blog know that this has happened on several occasions and every time it does, there is no blockage. On this occasion, there was massive blockage. The IV therapy nurse had to inject a clot dissolver into the line and I had to wait an hour before they could try to extract the blockage. This worked out well because we ran into some friends from BMT that we haven't seen in months. Sherry and Wayne were always our waiting room buddies (the Olivers and Paynes, too) when we were shackled to the tenth floor for infusions.

Wayne was busy developing level 3 GVHD of the liver and digestive tract while I was working on my PTLD side project. He's lost over 50 pounds because of it, but he still looked good. There's something about a person who won't give up. We traded war stories and talked about future plans. Sherry and Wayne still haven't been released to go home yet; they're day +120. Maybe by Christmas, they said.

After a very nice visit with our friends, it was time to go back into IV therapy to see what we could see. The clot had dissolved and as a bonus, I got my dressing changed.

By the time this was all over, it was time for me the check in for my CT scan. For some reason, I had to go to the outpatient building, which is 2 blocks away. This is not my favorite place since things always seem a little chaotic. I was called almost immediately, only to sit in the back amongst fifteen other patients. The really embarrassing part about this whole things is, we were all wearing the same shirt. Could you imagine? No, really, you know the ill fitting scrub top they put you in for x-rays. No comfort or warmth. We all huddled under our blankets, waiting to be called. There were 4 men ahead of me waiting for a CT scan, so I had plenty of time to just sit. I did have one near altercation with a nurse. Everytime you go to get scanned, you have to sign a waiver stating you're not pregnant. I signed mine as soon as I checked in. Imagine me sitting between two older gentlemen who look fairly uncomfortable in borrowed jammies when the head nurse approaches me. She pulled over a stool and with paperwork in hand, began to interrogate me about the answers that I filled in. Her first question, "Are you pregnant?"

My body has been saturated in toxic chemicals for the last nine months. In addition to this I get a lupron shot every three months to shut down my ovaries and put me in temporary menopause. I also take a birth control pill. Then there's the whole feeling hideous most of the time thing that puts me off my game. To the nurse I replied, "I'm not." She stared at me for a full minute before insisting, "And how do you know?" I decided to stare her down as the men next to me squirmed in their seats. Apparently, she'd had more practice because I broke first. I had to do a run down of all the reasons that I couldn't be pregnant before she would leave me alone. Good grief, people! I'm not even allowed to be in the same room as a small child, trust me, I'm not incubating one.

After 2 hours there, we were free to go back to the hotel. Chris and I were looking forward to a nice nap until we hit the next snag. Neither one of our room keys would work. I'm not going to tell you how we did manage to get into the room, just suffice it to say we did. Chris called the front desk to find out what the problem was and it was us. The hotel room had only been booked through Monday and they didn't have any available rooms to move us to. So instead of that lovely nap, we packed up our belongings and moved to a hotel down the street.

Tuesday was a new day and I was determined to pose as the picture of health so as not to have to stay another day. I had a nursing visit at 10:15 which turned out to be the nurse making sure that I took my Ativan before the procedure. Good stuff. Thirty minutes later I was in a procedure room and the intrepid Jill was prepping me for my lumbar puncture. If you ever have to have an LP, Jill is your girl. She keeps you entertained while she's working and doesn't seem to mind that your speech is slurred and you're not making a lot of sense.

After this procedure, you have to lie flat on your back for at least half an hour and my leukemia doctor liked you to have a caffeinated beverage to stave off headaches. So, I got to lounge on a stretcher while trying to drink a coke sideways without spilling. My doctor came to see me to save time and overall, I'd say it was a successful visit.

My dry skin continues to cover me head to toe and I'm to continue doing what I'm doing for it.

The node in my lung which was first discovered at 2mm and then grew to 5mm is now 3mm. She's pleased and so am I.

I can almost breathe out of my left nostril which is ancillary evidence that the mass in that sinus cavity is getting smaller. Another thumbs up.

She didn't feel anything weird or out of place in my thoracic cavity--enlarged spleen or liver--so that's good.

I have a 7mm node in my thyroid. They don't get worried until the nodes measure over 1cm. Just in case, she's conferring with some colleagues in endocrinology to see if they want to do anything given my history. I plan on doing my best Scarlet O'Hara. Tomorrow is another day.

After this visit, I was squeezed in to see an ENT because of my perpetuating sore throat. I finally got validation that there is a sore on the side of my tongue. It's in a really hard place to find and the doctor had to pull out a few tools to find it. She put me on antibiotics just in case and prescribed me an ointment to put on the sore on my tongue and if I can manage it, the spot on my tonsil. It has a very foreign taste to it and it sticks just where you put it. You can feel the little lump of ointment in the back of your throat and it's very hard not to gag. The sore spots do feel better today, though.

After this, I had to hurry to the ATC to get my last dose of Rituxan. We only had to wait an hour for an open room, this time. Too many patients, not enough nurses. Since I was driving back to Houston this time, I announced that I was having a nap and promptly passed out. I suppose this is another example of me being non-compliant since your vitals have to be taken every 15 minutes for 2 hours. Who could seriously stay awake after the kind of day I had just had? I woke up 3 hours later, just in time for the vitals nurse to come in and tease me.

We were done by 7pm and couldn't hit the road fast enough. As a side note, if you ever have to take a trip with me and I'm the designated driver, plan on delays. There were 3 accidents along the way that slowed traffic and blocked lanes. One on the Mississippi River bridge worried us, because it looked like it had happened well before we had gotten there and there were no patrol cars or paramedics present. It involved one car that looked like it had clipped the wall and spun out of control. Chris called it in and found out that it hadn't been reported yet. A dozen cars had to have passed it before us, and no one called it in? That's atrocious.

I'm stepping off my soap box before I can get started. I still have major knitting to do and I've started another book. I don't know how successful I'll be with it this week because of the lumbar chemo. All those lovely chemicals bathing my brain in fog. It did take me over 2 hours to pen this pitiful post and another half hour to correct most of the errors. I may have to skip tomorrow's post or guilt Chris into it. :)


Tina said...

I've never been so happy about millimeters in my life! That is great news! g-r-e-a-t news.

good karma for calling in the accident. keep the positive energy movin'.

Carilou said...

Well that was quite newsy. Glad to hear you're home and things are getting smaller. I wish you could have a nice long break from this.

pj said...

Oh yeah, that "are you pregnant?" thing. Health care personal are basically told not to believe you. When I went for my first treatment in 2006, and was being prepped for a Hickman catheter installation, they made me get off the gurney and walk down the hall in my finest hospital wear to the bathroom to produce a urine specimen. Like I didn't have enough problems. Now I just lie and tell them I'm menopausal, which isn't true, although maybe I am now.