Tuesday, October 25, 2011

On the road again - 10/15/2011

Friday evening we took Finnie to the kennel, packed our suitcases and went to bed nice and early.

I sort of tossed and turned during the night and didn't get a whole lot of sleep, but I can't attribute that to the filgrastim. It was more before-roadtrip nerves.

On Saturday, October 15th, we got up bright and early, packed up the car and drove to the downtown Denny's.

Although it was 6:30 in the morning, the parking lot was packed with all types of people, some scary and some not-so-scary. A Denny's in the dark is much more frightening than a Denny's by the light of day, and that's saying something. After a few minutes, the home health nurse arrived to give me my second filgrastim injection. The injections stung again, but not nearly as bad as they did before. I realized it was because the nurses on Friday gave me the injections towards the front of my arm, and the nurse at Denny's gave them to me in the meatier back part of my arm.

It was at this point that I began to examine the choices in my life that lead to me sitting in a stranger's van in a seedy Denny's parking lot with a needle in my arm. After a few seconds of thoughtful self-reflection, I thanked the nurse for meeting us and we headed out of town. The injection sites itched a tiny bit for about 30 minutes afterwards, but I just rubbed them a bit and it stopped pretty quickly.

The drive to Denver was a bit different than our trip over the summer. Because it's closer to winter, we drove our Jeep instead of our Camry. The Jeep is awesome, and better yet, it's paid for. But the Jeep doesn't have built-in navigation, so we bought a mount for Mr. Awesome's phone and used that for navigation. It took some getting used to, but it worked out really well. The other thing the Jeep doesn't have is a stereo system that will play MP3 discs. So instead of one CD with 20 This American Life episodes, I burned 20 CDs with one This American Life episode on each disc. That also ended up working out better than expected, since we didn't have to remember which track we were on.

During the drive, I was tired, but again, I can't attribute that to the filgrastim, since I didn't really sleep well the night before. Nothing a Starbucks couldn't fix.

We arrived in town around 4:30 (I love the whole "losing an hour" thing that happens when we go west - it's like a whole extra hour of vacation) and checked into our hotel, the Hilton Garden Inn in Cherry Creek. Really nice place - valet parking! Comfortable beds! Great location! Highly recommended, this one.

We were both worn out from the long drive, so we decided to go to dinner someplace close. The Cherry Creek Shopping Center was right up the road so we headed there to look around and had dinner at Kona Grill. It was just okay. I realized while eating that I can make the same type of food much, much better. The portions were way too big, and the presentations were a little over the top. They try to please everyone and end up not pleasing us at all. After dinner we shared a bag of Doc Popcorn (the cinnamon and sweet butter mixed together is so good!) and tried not to spill it all over the mall as we walked around. Then it was back to the hotel for a good night's sleep.

Next up - injection day 3 and and elk yells at us.

Friday, October 14, 2011

The sting - 10/14/2011

And... they're off!

This morning I had to go LabCorp to get more blood drawn - this time, it's to set a "baseline" of my chemical blood counts before the injections of filgrastim begin. My veins, while visible and pretty easy to find, are apparently "rolly" and don't particularly like getting stuck with needles. The lab tech had to stab me twice before she hit gold, so to speak. But - no bruise. YAY!

After the blood draw, I dropped Mr. Awesome off at work and headed to the Community Blood Center on Main street. I've driven past the blood center probably hundreds of times, but I'd never been inside until today. It's a big, two-story building with lots of rooms inside. It's obvious the place has been remodeled again and again - it had the same "I was once interesting and now I'm blah" feel that remodeled business spaces tend to have. But the furniture in the waiting area was modern and comfortable, and all of the people I met who worked at the center were nice.

A nurse took me into a small room and asked me general questions, like if I had any skin rashes, or had thrown up or fainted in the last 24 hours (So if I threw up for 6 hours two days ago, but not in the last 24 hours, all is well? Okie dokie!). They took my blood pressure and temperature (both normal) and then we headed to the second floor of the building.

I was weighed to see how much of the drug I needed to receive, then we headed into an "apheresis room" for the injection. The room had a couple of those big reclining leather dental-type chairs that are associated with blood donation, a couple of small televisions, and a conference table with some syringes and cotton balls and stuff on it. Those, it turned out, were for me.

I had a seat, and the nurse asked where I wanted to receive the shots - I would be getting two shots, because all of the dose wouldn't fit in one. I asked her where she recommended since she is the expert, and she said the upper arm. Alrighty.  I pulled up my sleeve, and she injected the filgrastim.

Honesty time again.

Filgrastim is, apparently, the consistency of corn syrup. It's thick. You know what that means? It means it hurts like a mutherclucker when it's injected into an arm. It puts up a fight. It felt like I was getting stung by a bee for about 7 seconds, and just when I thought I could take no more, it was over. The stinging stopped, and the pain was gone. Then I got to do it again in the other arm.

So, the truth is, this first injection of filgrastim hurt. But it only hurt for 7 seconds, then it was over. I'm not looking forward to hurting for 7 seconds on each of the next four mornings, but 35 seconds is practically nothing.

After the injections, I had to wait around for 20 minutes to make sure I didn't have a horrible allergic reaction that required the use of the EpiPen that the nurse carried with her from the first room upstairs into the apheresis room. Nothing terrible happened, so I was free to go.

It's been about three hours since I had my injection, and I feel a tiny, tiny bit fuzzyheaded. Sort of like how it feels when you wake up from a nap in the middle of the afternoon. I don't think I can attribute this to the filgrastim - I think it's because I didn't get to have my coffee as early as I normally do. The injection sites on my arm itch just a itty-bitty bit. Other than that, no issues. No bone pain, or nausea, or anything of concern. I hope I can still say that later on today.

Monday, October 10, 2011

Tears for fears.

I made someone cry today.

There's a woman who works in the same place that I do who works closely with a person who needs a bone marrow transplant. We ran into each other a few months ago, and we talked about the registry, how our workplace had a drive, etc. and I told her I'd been registered for a couple of years and what a great thing the registry is. We talked about how difficult it is to find matches for certain ethnic groups, especially African-Americans and Hispanics, and how the co-worker, who is black, hasn't found a match yet. A couple of weeks after this conversation, I got called by Be The Match. Coincidence, huh?

I ran into her again today for the first time since that conversation months ago. I told her I'd been thinking about her and why, and that's when she started to tear up. She thanked me, told me what a great thing it is that I'm doing and hugged me. I wish I was donating to her co-worker, but that's not how things work in the world. Somewhere, a 58-year old woman has a co-worker that's glad their friend has found a match.

Speaking of the 58-year old woman...

This is about the time that things are getting very, very real for her. If she hasn't already, she'll soon start on strong doses of chemotherapy that will kill her immune system, so it can't attack when my transplanted cells enter her system in about a week. If something happens to me between now and then, and she can't get a transplant, she'll probably die. I'm being extra-careful this week. No walking under ladders or base-jumping for me!

In other news...

Last Friday, I received a package in the mail that contained a dose of the drug that I'll begin taking this Friday - Filgrastim. The dose I received is now safely in my refrigerator, where it will stay until next Saturday morning.

Filgrastim increases the amount of  hematopoietic stem cells that my body will produce, and that overabundance will be harvested during the donation procedure.

There are side effects to this drug, the most common of which are bone pain and headaches (because what's a headache but a big pain in the skull?). I keep reading that the pain is sort of like the aches associated with the flu, and are relieved with Tylenol. We'll see...

Last Friday night I went to a mini-family reunion where I saw some family members I hadn't seen in many, many (too many) years. We had a great time laughing and catching up.

My family is wonderful.

On Friday of this week, I have to go to a blood lab near my house (the same one I went to when I got my initial blood work done in September). They will draw lots more vials of blood, then will send those to Colorado for analysis in preparation for the donation procedure. After they take my blood, I head to the Community Blood Center on Main Street where I'll get my first dose of Filgrastim. I have to hang out there for a bit to make sure I don't have any allergic reactions to the drug, then I'll head off to work. Hopefully I'll make it to work in time to meet with a knitting group that's gathering around lunchtime - yarn therapy is so soothing!

Saturday morning, a home health aide will come to my house and give me the dose that's currently in my fridge. As soon as that's done, we hit the road for Denver, hopefully arriving in time to have some dinner. I've got my fingers crossed that the bone pain won't be so severe that I don't want to do anything other than rest in the hotel room, but if it is, it is. I'll have my computer and knitting and magazines and Frank to keep me from getting too bored. And Tylenol. Lots and lots of Tylenol, just in case.

Monday, October 3, 2011

Goodbye again, Colorado! Day 2.

On Wednesday, I woke up around 8am and decided to take a shower. I turned on the water, adjusted the temperature, and commenced to showering. After about 2 minutes, I noticed that the shower wasn't draining as well as it should, so I kicked at the drain stopper, thinking it must have been down. When I did so, I thought I noticed some orange spots in the water. I can't see anything but colored blurs without my glasses, but after a second the orange went away, but the water still wasn't draining. I washed my face and as I pulled my hand away, I noticed that my hand was completely covered in blood.

My first thought was that I must have hit my face on something and cut it, but I couldn't recall doing so, and my face felt fine. I finally realize that my nose is bleeding. A lot. Meanwhile, the tub isn't draining, and there's blood all over the water, and the towel, and my hand, and my face, and it looks like someone died in the bathroom.

My second thought was, I have to give a whole lot of blood today, and I can't spare any, so I have to get this to stop. So I stuff some Kleenex up my nose and search for "how to stop a nosebleed" on my phone. I learn that nosebleeds can occur in higher elevations, and to stop it I have to squeeze my nostrils together for 5 minutes. That did the trick, but the bathroom was still a crime scene. Even after 20 minutes, the water still hadn't drained completely.

This was how I started off on the day of my physical.

After we cleaned up as best we could, we headed down to the hotel restaurant for breakfast. It was your standard hotel breakfast buffet, with greasy omelettes and strange-tasting pancakes, and it would have been passable for free. However, we paid $12 a person for this because we were hungry and there was no where else to go. Not a good deal. Even the coffee didn't cut it, so we walked across the street to a Target that thankfully had a Starbucks inside. Suitably caffeinated, we bought a couple of bottles of water and headed back to the hotel to rest until it was time to head to the hospital for my physical.

I drank two of these in two hours before we arrived at the hospital. I don't recommend doing that on a regular basis.

When we arrived at the hospital, we went to a place called the Rocky Mountain Cancer Center. The staff was really nice and helpful, and I was introduced to Betsy, the person who works most with Be The Match at the facility. I also met another coordinator named Rebecca, and several really nice nurses and doctors. I had to fill out a little paperwork before things got going:

Note: my hair looks especially awesome in this photo because I didn't get to wash it thanks to the Great Nosebleed Disaster of 2011.

Once all the paperwork was in order, I had to get lots of blood drawn. First, they took my blood pressure, then prepared to suck my blood. Here's the pile of stuff for that before they started that process:

All the water helped a great deal, although I was left with a little bit bigger bruise (i.e. a bruise at all) than last time. Also, the nurse said that my vein, while big, was "insubstantial," meaning it was sort of shallow and she had to be careful. However, the actual blood draw didn't hurt and in the end it took about 5 minutes to get all this blood:

It looks like a lot, but the nurse assured me I still had plenty left in my body. Although I wasn't so sure, what with the preceding nosebleed and all. But I felt fine, if not just a tiny bit weak. Nothing that a Bit O' Honey candy, courtesy of the front-desk candy dish couldn't resolve.

After the blood draw, they took my height and weight, asked for a urine sample (another thing made easier with the ingestion of about a gallon of water) then led me to an exam room for my EKG. I'd never had an EKG before, so I didn't really know what to expect. It was an incredibly simple process. First, the nurse stuck these little "leads" about the size of a quarter on me - one on each calf, one on each upper arm, one on the right side of my chest and five on the left side of my chest. Then she clipped these cables that were attached to what looked like a small dot-matrix printer on a rolling card to each lead. She flipped a switch on the cart-thingie, told me to take a couple of deep breaths, then said my EKG looked great and removed the cables and sticky leads. Easy peasy! I could see where someone with lots of body hair would have a harder time with this than I did. Sorry, men (and hairy ladies)!

After the EKG, a doctor came into the room and asked about my health history. He talked to me about the PBSC collection process, the fact that some donors have to get a central line put in their neck if their veins aren't able to support the traditional apheresis procedure, and gave me some tips for dealing with the eventual bone pain and other side effects that could be caused by the filgrastim injections. He spent about 10 minutes talking to me and making sure I didn't have any questions before releasing me to get a chest x-ray.

For the x-ray we headed to the main part of the hospital. We had to meet with hospital Admitting, fill out a little bit more paperwork, then they took me to get the x-ray. Then that was it. It took about 2 1/2 hours from the time I arrived at the hospital at 12:45 until I was done with my chest x-ray and ready to leave.

The hotel shuttle picked us up, took us back to the hotel and we immediately jumped into another fancy Lincoln for the trip back to the Denver airport.

It took about 30 minutes to get through security (compared to about a minute and a half to get through security at KCI) and once through, we had some Wolfgang Puck pizza for dinner before boarding another plane for the return trip home.

The following day I had to go to Columbia, Missouri for training, so by the time Friday rolled around, I was pretty-well done for. Thankfully, Frank and I had reservations for dinner at Michael Smith Restaurant, and it was just what the doctor ordered. A great dinner, followed by a relatively quiet weekend at home. Lovely.

Paulette is already making arrangements for my return trip later this month. Frank and I are planning on driving so we can do some Colorado sight-seeing (provided I'm feeling up to it). I've got a break from donation stuff until the middle of next week, when I have to get some more tests. Then, if all proceeds as expected, I'll get my first injection on Friday, October 14th.

Hello again, Colorado! Day 1.

Last Tuesday, my mom and I boarded a plane and flew to Denver, Colorado.

We packed light for our overnight trip, limiting those liquids and gels to 3-ounce containers and making sure our baggage was security-ready. We flew in an Embraer ERJ 145 on both flights. I normally don't pay attention to such things, but Mr. Awesome let me know that the plane had an excellent safety record, so that was good :)

Upon landing in Denver, we maneuvered our way through the enormous airport (seriously - the airport makes KCI look like a bus stop) towards the Ground Transportation area, where a fancy black Lincoln was waiting for us. The driver was really nice - told us about how he used to live in Vail until he had kids and needed to move somewhere more "real" - and we were at our hotel in about 30 minutes.

Paulette from Be The Match had booked us at the Holiday Inn Select in Cherry Creek, just south of downtown Denver. The hotel was rather new, and had a comfortable and contemporary lobby. However, check-in was a bit... weird.

Does anyone remember the character Beverly Leslie from the show Boston Legal?

The front-desk clerk looked and sounded just like that character. I liked that character. All was well.

Until he asked me why we were in town and I told him I was a bone marrow donor here for a physical.

Front-desk Leslie, in a thick Southern drawl rather out-of-place for the high plains, proceeded to tell me that he wanted to be a bone marrow donor, but he has hepatitis and can't donate and that "really bothers" him. Actually, he goes on to say, he has two types of hepatitis and they won't let him donate blood, and he really wants to, and it "really bothers" him.

You know what "really bothers" me? Being told, loudly, at check-in, about your communicable diseases and made to feel a little guilty that I, by virtue of higher standards of discretion in the realms of sexual partners and/or shellfish, can still donate life-saving materials from my hepatitis-free self.

Strike one against the Holiday Inn Select in Cherry Creek.

The room was standard, but comfortable. The beds were more comfortable than I expected. After unpacking our few items and resting for a few minutes, my mom and I headed out for lunch. The hotel was a 1-mile walk down a very nice trail to one of the fanciest shopping malls ever. Sur La Table? Check. Apple Store? Check. Louis Vuitton? Check. Swanky.

We had a good lunch at Brio Tuscan Grill - I'd never eaten there before and love Italian food - where we had bruschetta and eggplant Parmesan and strawberry-basil lemonade. Delicious! For dessert, we shared a bag of cinnamon popcorn from a place in the mall. Also delicious! Then we headed back to the hotel for a nap.

When I was a kid, my mom and I would spend a week each summer at a Unity Church retreat at the YMCA of the Rockies. She would drive us from KC in the middle of the night to avoid heat and traffic, and we'd get to Denver sometime around sunrise on a Saturday. The retreat didn't start until Sunday, so we would check into the Brown Palace Hotel for one night before the retreat and for one night on the way home. We'd stay in a suite up on the 9th floor and order room service breakfast (Irish oatmeal) and wear fluffy robes and pretty much live like queens. For dinner, we'd eat in the Ship's Tavern, the bar and grill just off the hotel lobby. The last time I was in the Brown Palace was when I was maybe 14, so we decided we'd go back for dinner to see if anything has changed.

Thankfully, just about everything was exactly the same. Same big, beautiful lobby, same friendly and helpful doormen, same feel, same charm. We planned on eating at the Ship's Tavern, but that's one thing that was a bit different - it was full of businessmen watching sporting events. Not exactly the vibe we were going for, but luckily they serve drinks and appetizers in the lobby, where we were serenaded by an excellent pianist:

He even took a picture of my mom and me together:

Dinner was excellent. My mom had a martini that was made with honey from bees that have hives on the roof of the hotel! We shared crab cakes and a cheese plate, then made our way back to the hotel to call it a night.

I didn't really think much about the physical on this day. I just enjoyed being in Denver with my mom, with the mountains in the distance. The one thing I did do was drink lots of water throughout the day, since that's what saved me when I had to give blood the last time.

I slept really, really well, except for having to pee every 3 hours. Chalk that up to all the water-drinking. But my veins were hydrated!