Monday, November 1, 2010

Update

Doreen from RIBC called me today with news on my recipient, the blood center finally got the update we'd been waiting on...

My recipient is alive and doing well! Doreen said that they receive very coded responses when they get updates from other donor centers but what she could tell me is that his recovery is going well and that it is unlikely he is completely back to pre-transplant activities. She said that it is often a long recovery period and that it isn't uncommon for recipients to need plenty of time to resume normal activity levels.

I want to write him a letter, but it is so hard to begin. What do you say to someone when you can't reveal too much personal information? Doreen suggested I use lots of open-ended questions but even trying that makes it hard to write a cohesive letter. I guess I just need to sit down and concentrate solely on the letter (no distractions).

Thursday, October 28, 2010

6 Months Post-Donation & Why I Decided to Register

It is hard to believe that it has been 6 months since my PBSC donation in Rhode Island. I am still attempting to get an update from the Rhode Island Blood Center, so far no luck. RIBC is still waiting to hear back from my recipient's donor center.

Now on to some reflecting - why did I chose to register with the National Marrow Donor Program. It is a question I've been asked more than once, "Why did you register?" To be honest, I'm not 100% sure myself. I don't have a family member or friend that I registered in honor of. No one close to me has had to battle blood cancer. I just knew that it was something I wanted to do.

I'm not trying to make myself seem like a saint, I'm far from it, but I have always been a selfless person. It is one of my best qualities and also, at times, one of my worst. People sometimes take advantage of how much I want to help others and put them before myself, but I wouldn't change how I am because of a few rotten apples. I always tell my Mother that I'd rather have too big of a heart than too small of one.

So when the Nursing Club at my university sponsored a registry drive I took advantage and signed up. All they asked for was some basic contact information and 3 Q-tip swabs from the inside of your cheek. Piece of cake. I crossed my fingers and hoped that someday I would be a match for someone on the waiting list. I never realized that less than 3 years down the road I'd be donating.

When it comes down to it, I guess the reason I registered with NMDP is simple: I'm young, I'm healthy, and I want to help people. You get one life and I am bound and determined to make sure I do everything in my power to not squander the gifts I have been given. To share what I have and make a difference. That is why I registered to become a bone marrow donor.


For more information on how to register to become a bone marrow donor and the NMDP click here.

Tuesday, August 10, 2010

4 Months Post-Donation

It has been four months since I went to Rhode Island to donate and there has been a lot going on so I thought it would be good to update everyone on the happenings.

One month post-transplant my recipient was out of the hospital and doing well. I was told that he had to remain near his transplant center for a while so that he could go to daily appointments but that he would likely be able to go home again soon. I haven't heard anymore, partly due to my own lack of correspondence which I plan on remedying after I finish this blog.

The same week I found out my recipient was doing well I graduated from college magna cum laude on my Nana's 66th birthday. It was an amazing day.

A week later my Nan collapsed after a doctor's appointment, banging her head as she fell and had to be admitted to the hospital for a week. The doctors (heart doctor & lung doctor) refused to listen to anything we told them and instead played the blame game with one another. We had to fight with the hospital to get them to send my Nan home with oxygen (her blood oxygen levels were in the 70%s, it only needs to be under 88% in order for home oxygen). We hoped that the oxygen would help, and it did, but there was still something wrong and every doctor we saw didn't care. Her regular doctor told her she couldn't ask questions "because she was scheduled for a 15 minute appointment and she'd used 13 minutes already" (not verbatum but this is actually what a medical doctor told a woman who had just been in the hospital for a week).

On July 24th my heart was broken forever when my Mom found my Nan dead in her home. I was the last person to see my Nan alive (Friday the 23rd). I am very grateful for the time I spent with her that day but I am also struggling with my own guilt. Even though I know it is illogical I keep asking myself "What did I miss? What could I have done? Did I not see something I should have?" There is an emptiness in my heart I fear will never leave. My Nan was like a second mother to me. She helped my mother raise me and losing her has shaken my world. I wake up every morning and go to bed every night sad at the loss of such an amazing person and mad at medicine for failing her.

I am going to end this post now as I am getting myself quite upset. Once I hear back from Doreen I will update again.

Thursday, April 15, 2010

Saturday, April 10, 2010

Reflections

It has now been a few days since I arrived home from Rhode Island and I have been working on settling back in to school, my job, and my personal responsibilities. Tuesday was a bit rough around the edges for me, I was very sad to be leaving and it showed. Even after I arrived back at my apartment I was blubbering a bit. Everything just seemed so overwhelming.

Now I am back into the grind of school Tuesdays and Thursdays, work almost every day, and everything else I have to do. The past few days have given me a lot of time to reflect on the experience I have been fortunate enough to have and I thought I should post some of those thoughts on here.

Doreen thanked me for "making them look good" at the Rhode Island Blood Center, but I can honestly say that the only thing I have done is raise awareness of how amazing the staff is there. They make themselves look good, and, if anyone is given the option of donating in Rhode Island, take it. You won't be disappointed. The people at the blood center weren't only the people handling my donation, but they became my friends as well. I can't thank them enough for looking after me and making sure that I had the most positive, uplifting experience possible. I also have to give them credit for introducing me to Nick, who helped make my days a little less lonely and my apheresis more awesome by bringing cheesecake. Even though he likes to root for the Yankees when they are playing the Red Sox so we can have friendly competitions about who is going to win, I count him among my friends.

As for the after thoughts about the donation itself I feel very fortunate to have been given the opportunity to give someone another chance at life. Although the donor center argued with me on the matter, to me this has never been about me. Like I explained to my Mom, who at the beginning wasn't sure of the process, I am not the type of person who could wake up every morning and live with myself had I said no. I couldn't live with myself knowing I had the chance to help someone and simply chose not to because it might disrupt a week of my time or make me uncomfortable. Yes, at times I was in pain due to the filgrastim, but I reminded myself of the person I was doing it for. If I was in pain, I couldn't imagine how much he must be going through in order to get ready for his transplant. Filgrastim is nothing in comparison to chemo and radiation. Hearing Doreen tell my Mom that he would more than likely receive the cells I donated in less than 24 hours made everything that much more real for me. I have been asked for an update, so in 30 days I will hear from Doreen about how he is doing. I am genuinely hoping for good news, but I hope that my recipient as well as the blood center knows that I am here and will gladly, if need be, donate again as many times as necessary.

One of the most emotional aspects of this has been the response I have gotten from my family and friends. One woman from my home town posted on my wall this week that she had just mailed her swabs back to the registry, all because she heard what I was doing. Granted, it may only be one person, but that is one more person than before that is willing to help if they are called upon. To know that my experience has helped at least raise awareness for the Be the Match program is beyond words. I hope that others will take the time to register too, thinking about it now I would much rather have people thanking me by registering with the Be the Match donor program...

Tuesday, April 6, 2010

Day Six, Entry One

Today has been a bit chaotic. Up early again for round two of apheresis, thankfully no shots needed today. Got jabbed with needles again, found out my white blood cell count climbed to 35, even without more filgrastim. Since I had 15.5 liters of blood filtered yesterday I could only do 8.5 liters today so I was only hooked to the machine for 3 hours rather than 5.

Everything went smoothly, although my vein was fluttery today due to a valve. It was an interesting feeling, almost as if I had a bumblebee stuck under my skin trying to get out.

After they unhooked me I got to talk to Doreen and say goodbye to Jackie. Mom and I grabbed sandwiches from a little pizza shop and I started to get emotional. I'm not 100% sure why, but I've cried a few times today. I don't know if its leaving (I met so many amazing people that I didn't want to leave behind) or just being overtired and overwhelmed or what.

My Mom has dropped me off and I am back at my apartment, feeling kind of glum still. Its been a long week and I guess now that its back to "regular" its all catching up with me. I guess I just need to catch up on my sleep and take deep breaths, let things come one day at a time. In 30 days Doreen should get an update about my recipient and I have been asked to be hold how he's doing. I can only hope that its good news.

Monday, April 5, 2010

Day Five, Entry Two

Today has been crazy busy. I just got up from a nap following my apheresis. I guess the best way to begin would be to loop back to the beginning and start from there.

This morning I got up at 6:15 am, showered, and headed to the blood donor center. I was nervous, just about the needles and the whole procedure. My Mom got to the center a little before 7:00 (6:53 am - can you tell I was paying attention?). We waited in the waiting room until Doreen came down to greet us. I filled out all my paperwork then got my fifth set of injections. After that it was wait, wait and wait some more to allow the filgrastim to start working.

Okay, so it was probably only 15 minutes or so before they called me in to the donation room. Jackie and Melissa, two nurses/apheresis specialists, hooked me up to the machine. It was kind of surreal at first. An IV in my left hand and a blood donation needle in the crook of my right arm. I almost cried, not because it hurt, but because I think I was a little overwhelmed.

At first the apheresis machine beeped at me a lot, indicating that the flow pressure was low and that Jackie should check the needle to make sure my blood was flowing well. Once I calmed down and got talking more the machine stopped beeping. The procedure itself wasn't that bad. I remebered not to move my right arm (good) and just relaxed.

The nurses were fun to be around and helped the 5 hours go by much more quickly than I thought. Nick came by at a little past 9:30 am. It was fun to watch him because he got to see the donation from a new perspective after having donated. He brought a peanut butter fudge cheesecake, which was absolutely amazing. Everyone thought it was wicked cute that he had done that. It definitely got him bonus points from all of the blood donor center staff.

Thankfully I didn't feel "tingly" from the anti-coagulant and I didn't feel nauseas or faint. I really think the nurses at the blood donor center helped, they kept me amused and made new friends. The experience with the Rhode Island Blood Center has been absolutely amazing.

What woke me up from my nap was that Dr. Young called and let me know that I definitely have to go back to the blood center tomorrow for round two of apheresis. My Mom had gotten her hopes up that we might not have to go back after being told today that there was a possibility we wouldn't need to. The donation today resulted in half of the CD-34 cells that the people doing the transplant want for my recipient. I am really hoping that tomorrow we can get the second half that they want.

Dr. Young also told me that my plasma levels, after tomorrow's donation, are going to be on the low side of healthy. That means that I have to be very careful for a while not to cut myself badly or to play full-contact sports because my ability to stop bleeding will be lowered. Oh and my white blood cell count continued to rise, it was originally 7.2 (first day) then it went up 25.2 and after my injections today it was 30.4.

Now that I've been through one apheresis I'm not so nervous about doing another one, which is good. I know that I just need to relax and go with the flow (no pun intended, although that would be a good one haha).

Well its off to the Providence Place Mall for my Mom and myself, I get to buy my Easter present now! Woo hoo!

Day Five, Entry One

Sorry for the lack of updates yesterday, I got really excited about my Mom coming down and didn't get back on the computer once she arrived.

To kill time between getting up for the day (11 am) and her arrival I threw on my bikini and laid by the closed outdoor pool. I figured catching some rays, making vitamin D and reading were a good way to spend my time. I didn't feel like walking anywhere because I figured Mom and I would be doing a lot of that.

My Mom got to Providence at around 2:30 in the afternoon. Thankfully my Nana (grandmother) had sent down a heating/massaging pad for your back. We hung out in the room for a little bit before we headed to Thayer St. and Brown University. Brown is beautiful, its definitely on my list of schools to look into for (eventual) graduate school. Then we headed to the Cheesecake Factory for Easter dinner. I had garlic noodles with chicken. It was really good. It had mushrooms, asparagus, tomatoes, and chicken with garlic noodles.

After dinner we relaxed in the room and I watched Discovery channel's Life series, amazing!

But as for right now I am off for my first round of apheresis. I kind of got nervous again last night before bed. I just need to take deep breaths.

Sunday, April 4, 2010

Day Four, Entry One

Happy Easter!

This morning was an initially early one for me, I had to be up at 7:00 am to go get my forth set of filgrastim injections. Patricia needed to head out early in order to spend time with her family. Today the injections seemed to sting more than usual, maybe the backs of my arms are rebelling against being jabbed everyday.

After I got back to my hotel I snuggled back into bed and slept for a while longer, I even slept through a text message which isn't something that happens very often. Normally my ringtone wakes me up, but I guess my body is fatigued from the filgrastim and the walking everywhere.

The aching has spread from just my lower back to my hips as well. I noticed it last night as I was laying in bed trying to sleep. My left femur was also aching a bit too, but only the left one. As of right now I don't feel all that bad, just tired. Patricia told me this morning that the medication has a 6-hour peak time when the aches get the worst. For me it seems like the aching is worst right before bed (which is well past 6 hours post-injection).

It is kind of crazy that the apheresis is tomorrow. I'm getting nervous again, despite my best efforts not to be. I don't know what I am so scared of, the concept is pretty simple: don't move your arm with the non-flexible needle and you'll be fine. I guess I just worry that they are going to tell me my CBC is too low and that I have to have surgery. It isn't that I'm scared of surgery, because I'm not - I have had 4 already (appendectomy & 3 ACL reconstructions), its that I am worried about having to reschedule everything back home because of it.

Well, it is a beautiful day out so I am going to go find somewhere comfy to plop myself down and read. I probably ought to do my homework but I think I'll worry about that later.

Saturday, April 3, 2010

Day Three, Entry Three

I love that you can legitimately order just about any type of food for delivery using your computer. Awesome.

I just used Foodler.com to order chinese food to my room. I got a general tso's chicken combo - it comes with rice (or veggie lo mein) and crab rangoons (or spring rolls or an eggroll or chicken fingers) for only $7.50! I had to spend at least $10 to get the delivery so I bought a bowl of wonton soup and used a 15% off your first order from this restaurant coupon. I've never had it so I am hoping its a positive first experience.

I just popped open one of my bottles of kombucha, passionberry bliss flavor. I'm a bit nervous about it but at least they were on sale (two for $5 rather than $3.50 a piece) so if I hate them its not that bad. I guess I'll have to update with my thoughts on kombucha and wonton soup at some point.

For now I am going to relax and wait for my delivery to arrive.

Day Three, Entry Two

After my first blog today I went back to bed and curled up into a ball. I fell back asleep until 10:39 when one of my friends from back home called me. He felt bad so he told me to call him back later. Ten minutes later Nick called about meeting up today. He had a few things to do so we agreed on 2:30 or so at Borders for coffee.

By the time I got done with my phone calls I decided I might as well stay awake and eat lunch, so I had cold pizza leftovers and called my friend back. We didn't talk about anything in particular except getting together once I get home.

Since I knew I'd be going to the mall anyway I left the hotel early to explore the mall and see the stores. My Mom told me that she'd buy me a little something for Easter once she gets down here so I thought that I might as well head there early. The mall is HUGE compared to the mall back home. Back home we have one floor, period. There are like 5 floors at the mall here. Its crazy. I decided to start from the top and work my way down. I got sidetracked on the top floor though because I absolutely fell in love with the store Lush (http://www.lushusa.com/shop). Amazing! I am definitely getting my Easter gift(s) from there rather than buying clothes. The other store I fell in love with is the Crate & Barrel. I love to cook so all the little gadgets they sell are cool. I think for graduation I am going to make a registry so that people can just buy me gifts from the store.

By the time I made it through all the floors Nick had texted me to let me know that he was on his way to Borders. We met up for coffee even though neither one of us drank coffee. He got an Odwalla juice and I got an orange-mango slushy. There weren't any tables open so we walked around Providence for a bit. We just talked, not even about the donation process, but about everything. School, sports, the future, and yes, the donation too. He's dead set on bringing cheesecake by on Monday so at least I know I'll have a sugar rush. We talked until ten minutes before his shift started and then I headed back towards the hotel.

Rather than going straight back to the hotel I walked up to the Whole Foods again to get some juice. I wound up getting 2 bottles of Kombucha(http://www.synergydrinks.com/kombucha.html), which is this fermented tea drink that I've read about online at health blogs, and a bottle of sparkling water (raspberry lemon flavor). I just thought this would help me hydrate and mix it up from plain ol' tap water.

Now I am finally back in my hotel room, snuggled in for the night. I need to decide on food for dinner so I need to either 1) Google delivery restaurants in the area, 2) order room service, or 3) go down to the restaurant in the hotel. Number 3 is my last option so I guess I better get Googling. Even though I napped today I am still feeling very tired and my back is still achy. I kind of want to eat dinner then curl up in bed. I have to be up early (my appointment is scheduled for 7:30 am so that Patricia can head out for her family Easter gathering) and I might have to walk to the blood center so bed early is probably a good idea.

I am really hoping that I can find a chinese restaurant that delivers. I want general tsao's chicken and white rice.

Day Three, Entry One

I don't know why, but I am suddenly grouchy. Today has barely even started and I am over it. Maybe I just need to lay back down for a bit and then get out of bed on the right side.

I had injection round 3 this morning. My back ache is still there, it isn't intolerable but it is enough to let me know it is there. I am curious to see if only my back aches or if the aches spread as I get more filgrastim in my system.

Plans for today: none as of yet. I haven't heard back from Nick, but he did work until 12:30 last night so he is probably still in bed. I'll give him until 11:00 before I go off and adventure on my own. I might head back to Whole Foods at some point today to get some juice. I want something other than water to drink that will hydrate me. Even water with lemon sounds better than plain tap water.

How I'm feeling as of 9:41 am: inexplicably grouchy with a back ache.

Friday, April 2, 2010

Day Two, Entry Three

Grrr. I just typed a whole entry that was deleted when I tried to post it. Sometimes I hate the internet.

After some down time in my room following my adventure to the zoo I walked to the Cheesecake Factory (and, as I found out, the whole mall). I went to talk with Nick. He is very nice and took some time out of his shift to talk to me about the process. During the conversation he decided that Monday he would bring me a piece of cheesecake while I am having my apheresis. I felt bad keeping him from work so I didn't ask all the questions I wanted to. I think tomorrow we might meet up before he has to work so I can ask them all then.

It is going to be nice to have another person to talk to. To be honest I am getting a little lonely. I like to think that I am an independent person but I can only take so much social isolation. My Mom isn't getting here until Sunday afternoon so being able to meet Nick has been nice. I am very thankful that the blood center contacted him and that he was okay with meeting me. Insert sigh of relief here.

Other than that my back is aching still. I can't tell if its the filgrastim working its magic or if I just have been walking so much my back is angry. I'd like to hope its the former of the two options, but who knows. I am at the point where I think I am just going to curl up in bed after posting this. I ordered pizza, Tuscan 6-cheese, delivered to my room so I have that to munch on if I feel like it. I ate a few slices already so I am pretty full. Poor TV signal might put a damper on me watching a whole lot of TV tonight but maybe I will fall asleep and it won't matter.

So to summarize: my back is aching and I am lonely. I am hoping that tomorrow I can at least eliminate the lonely factor. I can deal with achiness. Tylenol and laughter works wonders.

Day Two, Entry Two

I just got back from the Roger Williams Park Zoo, I had so much fun. I did notice that my lower back has started to ache. Its one of those dull, I-hurt-but-not-enough-to-be-anything-more-than-a-nuisance types of aches. I haven't noticed anywhere else aching (as of yet).

I had my first experience with Rhode Island public transportation. Doreen, another one of the lovely ladies from the blood center, dropped me off at the zoo after my second set of injections.

Speaking of the injections, let me just say that they sting. In my case, the left arm stings more than the right. I am also one of the rare cases that requires post-injection band-aids because I bleed. Leave it to me.

Anyway, back to my original story, the zoo and public transportation. So I didn't have to worry about getting there. On the way back I had to take either a) the bus system or b) a cab. Considering the expected cost of a cab was $14.50 I chose the bus system. I sat for nearly 40 minutes at the bus stop only to be told, upon asking the third bus (the first two that drove by were 'out of service') driver, that I was on the wrong side of the street. When I finally got onto the right bus there were a ton of people complaining, one passenger was really mean to the driver when he got on, and I was already ready to get off the bus. At Kennedy Plaza I missed by second bus the first time it was at the station. Thankfully while waiting I met a nice woman who talked to me about home. It was nice to share things about Maine, like Stephen King's house and winter weather, with someone. She was getting on the same bus as I was so she made sure I didn't miss it the second time around. The bus was crowded so I didn't ask the bus driver for help about where to get off the bus. On a proud note I got off at a stop that was so close to the hotel that I could see it. Considering I have no sense of direction I am happy that I did it all on my own. Maybe now I can show my Mom around once she gets here!

I think my next stop for the evening is the Cheesecake Factory to meet Nick, the young man who just donated through the blood center. I am excited to talk with him about everything. I want to ask a lot of questions and just get a first hand account of what to expect, even if it involves some things that aren't great.

Day Two, Entry One

I am much more well rested after hitting the hay early last night, although I did give myself a kink in my neck from sleeping awkwardly. Last night I adventured up the street to the Whole Foods Market and fell in love. The first thing I noticed when I walked in was the spicy smell in the air. I love stores that have that. I wandered for about an hour, kind of aimlessly. I went in for bagels and cream cheese for breakfast in my hotel room (to go with the pears I brought from home). I wound up leaving with bagels, cream cheese, garlic hummus, crackers, and ranch dressing for when I order pizza in tonight (I have the odd habit of dunking my pizza in ranch, you may cringe but try it - it is SO good!).

I am just about on my way out the door for round two of my injections. I don't have any side-effects as of yet, but we will wait and see. In my own Biology major way I am curious as to how achy you get. I guess I should give myself a few days to wait and see, then I will more than likely have my answer.

Patricia just called me again to relay the information of a young man who works at the Cheesecake Factory here in Providence who just donated. He was quite excited to hear that there was another donor in the area. She gave me his work schedule for today and tomorrow so that if I felt like going to chat I could. She also gave me his phone number.

If I go to the zoo today that could very easily be an after-zoo trip to go chat with him about the whole process. Even though the information you get is thorough, it is always nice to talk to someone who has been there and done that. It eases your nerves a bit more than a pamphlet of information.

In a way I wish my Mom would've just called in sick and come down for the whole trip. Its not that I can't be alone, I do just fine on my own, I just want company while exploring the zoo and the neighborhood. I find it more fun to share exploring with others than to do it alone. Oh well, she will be here Easter Sunday.

How I am feeling so far today: much more well rested, no abnormal aches and pains yet, less nervous than yesterday, and excited to go to the zoo.

Thursday, April 1, 2010

Day One, Entry Two

It is now past 4:00 o'clock in the afternoon. Since my first entry I have successfully made it to Providence, without any flood anxiety - apparently the worst of it is further south than where I am, and had my first "appointment" at the donor center. Patricia, one of the women from the Rhode Island Blood Donor Center, picked me up at Kennedy Plaza and took me directly to the blood center. Upon arriving there we went over the daily question list I will answer each day (how do I feel, am I aching, if I am aching where am I aching, etc). Then I had my vitals taken and the blood for my baseline CBC drawn. The nurse also administered my first dose of Filgrastim, one injection in each arm. Filgrastim is the medication that will force my white blood cells into over-drive and into my blood stream rather than remaining in my bone marrow. I will go back for the next four mornings to have injections in each arm.

As for my plans for the rest of the evening I am currently plotting a trip to the Whole Foods Market that is 4/10 of a mile away for staples such as bagels and cream cheese. I am also working on the logistics of getting myself to Roger Williams Park Zoo before the wonderful weather and weekend are over. I am thinking that dinner will be delivery pizza followed by snuggling into bed nice and early.

My feelings so far can pretty much be summarized as I am thankful to have made it safely to my destination and that I'm still worn out from my early morning. The hotel is beautiful and is fully equipped with a gym and pool as well as a restaurant and spa. My room is cozy and has a nice big screen TV and its own bathroom. Overall I don't think I will have any problems with comfort (in terms of living accomodations anyway).

I am still nervous about everything and just hoping that my CBC levels remain good. Maybe it is selfish, but I really want to be able to give the patient receiving my stem cells a second chance. I want to help and one of my fears is that my CBC will drop below acceptable levels and somehow the actual marrow donation won't pan out and that I will have failed this person who is depending on me...

Day One, Entry One

It is so early. I have already been up for 2 hours today, an unprecedented feat in my normal life. If it weren't for a 6:30 am bus I'd likely still be sound asleep in my bed. It is crazy to me that I am on my way to Rhode Island to begin the peripheral blood stem cell donation today. It is hard to believe that three months ago I was just learning that I might be a match for a patient. I am beginning to get nervous, there are a lot of what-ifs swirling in my head. What if I get stuck in Boston due to the flooding in Rhode Island? Then I'll have to be in Rhode Island longer, which means missing more work and school, I don't mind but I am sure my boss and professors might. What if something goes awry with my plasma count and I have to schedule the bone marrow surgery? Same idea as before - more missed life back home. Even though I am nervous about everything I am very excited at the same time. This is such an amazing thing that I have been given the opportunity to do and I am proud to say that I am doing it.

To summarize my feelings as of 7:06 am: tired, nervous, and excited.