What Does It Mean to Live?

Phyllis and I met 2 years ago this month! Can you believe it?! She is doing well and she just got back from a trip to Hawaii with her family. Traveling and spending time with the ones you care about most are what I envisioned for her back before I knew her. When I first learned I was going to donate, my hope was that by me donating, someone would have a second chance at life. And when I think about life and living, that's what I dream about... traveling, exploring the world while being with the ones I hold nearest and dearest to me. Everyone has different ideas of living, but when it comes down to it, we are all human and we all want the same thing - love.

You often hear people ask, if you found out you only had X number of days to live, what would you do? So what would you do? Make the most of today and of every day. Put down your phones and live in the moment. Be present. You'll never remember the best day of technology you ever had but you'll make memories that will last a lifetime and when you're taking your last breath, you'll know that you truly lived.

Happy Friday!

Dreams

It's that time again... time for an update: 

Phyllis is doing well and in fact, just had a birthday! It just so happens that my fiancee and I got engaged on her birthday a couple years ago (before we even knew her! - Crazy, right?!)

She and I speak regularly, maybe 2-3 times per week. We both wish we lived closer but sometimes life and circumstances just get in the way. Hopefully we will be able to see each other sometime this year? Personally, I think Americans work too hard and don't get enough vacation days :p I'd be fine taking a month or two without pay so I could travel. Ahh, I'll keep dreaming. :)

Serenity

Phyllis

Well, the one year mark from the donation came and went. I sent Lee my info out right away but considering the lag between NMDP and such, I assumed I wouldn't hear much for a while. To my surprise, within a couple days I received an email directly from my recipient! Her name is Phyllis and she lives almost completely on the other side of the country. We have been emailing back and forth since then and it has been such an awesome experience. I look forward to hearing from her and always smile when I see an email from her pop up in my inbox.

She's doing well and I've even gotten to speak with some of her family members too. She's an amazing woman and I so look forward to getting to meet her and her family and finally give her the hug I've been holding onto for her for over a year now. 

I cannot believe how much things have changed in over a year. I looked back at some of my older posts and was reminded to keep counting my blessings. 

Leukemia Free!

I received a card from my recipient midway through last month. She wrote me to let me know that at her 6 month check up she was still leukemia free! Amazing news! She wrote the letter in mid July so I've come to learn that it takes about a month for it get from her all the way to me.

At this point, it's been almost 10 months since the donation and I get more and more excited knowing that come November, we will no longer need NMDP to correspond.

Almost there!

Hello all,

No news lately but I'd assume that all is going well. I realized yesterday that we are midway through July which means we're 8 months in and only 4 more until the 1 year mark!

I hope everyone is enjoying their summer and getting some time to relax!

More Letters!

A couple days ago, I received an email from Lee with a letter attached from my recipients sister. It was such a beautiful letter... she told me how beautiful her sister is, inside and out and how her sister is such an amazing person full of love, laughter, generosity and strength - pretty much exactly how I pictured her.

It warms my heart when I hear from them. :)

Wonderful News!

A little over a week ago I received a letter from my recipient saying that she's doing really well. She was released from the transplant facility before day 100 and actually could have gone home sooner than she did but her family was sick so they didn't want to risk it. She also said she was looking forward to meeting me and being able to hug me and thank me in person.

As everyone can imagine, I was so excited to get this letter - it truly means the world to me and I'm eagerly counting down until the 1 year mark in November :)

Connections

My recipient had been on my mind all night Saturday night. I sometimes wonder why she weighs so heavily on me at times and then think that maybe it's because she's thinking of me too and our thoughts are connecting. Days will pass and life gets busy and the donation doesn't even cross my mind but then some days I can't think of anything else and I'm amazed all over again at how blessed I am to have been able to be part of such an awesome thing. I wonder about her often and I wish I knew how she was doing. I haven't received an update so I'm going to assume that no news is good news.

Do something amazing today :)

Precious Time

Time has so quickly escaped me. I've been experiencing my own personal struggles lately and have let the stress of life grab ahold of me and bring me down.

Unfortunately, I do not have any more updates on my recipient, but I did realize that it has been more than 100 days since the donation and those were the most critical days. I hope everything is going well for her and her family. I will post an update as soon as I get one.

Engrafted Stem Cells!

I received a phone call on Friday with some news about my recipient. The stem cells have engrafted so she's making my blood cells now! She is doing well and was discharged from the hospital which is great news!

Merry Christmas!

2 Weeks Post Donation

Well, it's been 2 weeks since the donation took place. The area where the line was is still healing... I have a massive bruise in the groin/thigh area and a tiny little scabbed area where they inserted it. I rested up for a couple days then got busy and was on my feet a lot and I noticed some new bruising and swelling so I had to try to stay off my feet and ice the area for a day or two. It's looking much better now though. It's pretty much the coolest looking bruise ever and I wish I could show it off just for fun, but it's probably not socially acceptable to say to someone "hey, wanna see my cool bruise?" then whip off my pants to show them ;)

Anyway, I haven't heard any word from or about the recipient. I guess I am a little disappointed to have not heard anything yet but hopefully I will soon!

Lee will probably give me a call within the next couple of weeks and maybe have an update for me about her and how she is doing. Until then, I hope everyone had a lovely Thanksgiving and aren't stressing out too much this Christmas season... keeping in mind the real meaning behind Christmas :)

Donation Day Details

We got there at 6:30am after not sleeping at all the night before. They took vitals and had me sign some consent forms. They drew some blood to check all of my baseline levels and we had to wait for the results to come back before I could get the last filgrastim injection. In the mean time, the vascular surgeon came in and started to prep me to get the line put in. The process was quick and they used lidocaine to numb the area. They did the entire procedure right at the bedside. It caused a bit of discomfort but it wasn't anything major. There were 2 tubes connected to the line so the entire process was done through that... no needles in my arms all day! That was really nice! Otherwise I wouldn't have been able to move my arms around at all.

My handsome honey being manly carrying my bag 

The blood work came back and I was able to give myself the last filgrastim shot at 8am. Yes, I asked to give myself the shot because I've mastered it over the last 4 days making it completely painless. Per the NMDP, I had to wait 1 hour after the filgrastim injection for the process to begin so that was finally started at 9am. During the process, they want to make sure your blood isn't clotting through the tubes while it's being sent through to the apheresis machine so they use an anticoagulant to avoid that. The anticoagulant they use decreases calcium levels in the body so they give you a calcium drip. Symptoms of decreased calcium include tingling of the lips, possibly fingers, nose or other extremities. Probably 10 minutes in I started to feel my lips tingle a bit so they increased the calcium drip until the tingling subsided.

We were exhausted!

The entire day was just a lot of waiting. I think around noon the lab took a sample of what had been collected so far to see how the sample was looking. They said it was looking good so I hopefully wouldn't have to continue with the collection tomorrow because they were worried about that. One of the nurses told me that my CD34 cells were really high which was a good thing so that was promising. I reeeeeally didn't want to spend the night in the hospital with that line stuck in me all night!  

The apheresis machine

Around 3pm the collection ended and they took samples of the stem cells to send to the lab. From then I had to wait to see if they had gotten what they needed, and if they did, I had to wait 2 hours for the line to be removed. I found out that they got almost twice the number of CD34 cells that they needed so the countdown to 5pm was on! I couldn't wait to get that line out! They took the line out at 5 and the nurse had to put pressure on it for 30 minutes. The nurse literally sat at my bedside and put pressure on my groin area for a half hour... we had a fun conversation lol. The protocol at the hospital was to treat the vein as an artery; since they weren't stitching it shut, that meant the 30 minutes of pressure, and after that I had to leave a 5lb sandbag on the area for an hour. It stopped bleeding almost right away but I had to wait anyway. An hour and a half after the line was removed I was able to get up and walk around and they wanted to make sure the clot held while I moved around. They patched it up with some gauze and tape and by 7pm they wheeled me downstairs while my lovely boyfriend got the car and we were able to go home. The second the nurses walked in at that 1 hour mark for the sandbag I started taking the sandbag off and the gauze and popped right up out of bed because I was so eager to leave (and also go to the bathroom!)

Lee checked in with me a few times during the collection to see how I was doing. He was there for me through the entire thing and everyone involved was absolutely wonderful! The stem cells were being flown out with the curriur this morning (Friday). Hopefully once she receives the transplant he'll let me know and keep me up to date so then I can keep the blog up to date!

Yesterday was certainly a very long day! But I feel awesome today! The side-effects have been gone since Wednesday evening (day 4 of the filgrastim) so that was certainly really helpful so I wasn't aching all day during the collection. I honestly feel completely back to myself aside from the slight pain and tenderness from where the line was.

My cells!

I sent this picture to a friend of mine and she replied: "amazing to think there's someones future in that bag." That really made me think. This could save someones life. We forget how delicate and precious our lives are until we fear we might not have another day. I'm so honored to have been given the opportunity to do this... and how easy it was for me to do it. Sure, it took time out of my life, but it was worth it and I'd do it again in a heart beat.

Donation Day!

The day is going well. We arrived around 6:30am and they drew some blood to check my white counts. I gave myself the last injection around 8am and then we had to wait an hour before the collection could start. They put a line in my femoral vein and the process was kind of uncomfortable. The doctor used lidocaine to numb the area and they did it right in my hospital bed. I was totally fine with everything until I started to feel blood trickle down my leg and I started to get a little light headed. I don't do blood well. It feels like a weird pressure in my groin area but it's nice to be able to move both arms. 

The side-effects are completely gone and I'm so thankful for that because it would make sitting here even more uncomfortable. 

We are hoping they get a full collection today so I don't have to stay until tomorrow and it should be ending around 3:30pm. The line has to stay in for 2 more hours after the collection and then once they remove it I have to wait around for another couple of hours to be monitored but then I can go home hopefully. :)

6 am

It's 10 minutes to 6 and neither of us slept much. I'd say we both got maybe an hour or so. My honey stayed up with me and kept me company because I was so anxious. He found a vending machine and brought me back my choice of snacks when I was hungry earlier :)

I have to say the aches are hardly noticeable and haven't been since last night so that's certainly a nice change!

Anyway, the next update will probably be from the hospital!

So Close!

Well it's 2am and I haven't slept at all, nor has my boyfriend because he's been awake with me. He gets an A+ for being awesome. I slept a lot earlier today so maybe that's why I'm not sleepy. I'm really nervous so he's stayed up talking to me and helping to calm me down. I'm oddly hungry to the point where it hurts so the boyfriend went downstairs to find some crackers or something. How awesome is he? :)

Filgrastim Injection #4

Well, today is day 4. Tomorrow is the big day and the last injection. I'm definitely more nervous than I thought I'd be and I'm looking forward to getting the filgrastim out of my system.

I'll be leaving soon for the hotel because we have to be at the hospital at 6:30am! Good thing the hospital is only a couple blocks away!

I took some Nyquil last night so I could get some sleep and it definitely helped. I think I was asleep before 11. Since I'm home, my mom came in and laid down with me and got a heating pad for me. I always want my mom when I feel icky so I was glad to be home. The heating pad was really helpful! I'm so lucky to have such an amazing mother. 

I woke up around 6am and took a Tylenol; my mom saw my light on and came in and rubbed my legs for me and I went back to sleep until 9 or so. I was awake until at least 11 or maybe even noon but I fell back to sleep for a good amount of the afternoon. I spent most of today in bed just because I could. I've been fairly achy on and off all day and still feeling kind of nauseous on and off too but thankfully no vomiting. My head hurts too. Pretty much all of the same side-effects as the last couple days. My mom was nice enough to bring me home some soup for dinner since I haven't really been eating much. 

Wish me luck and send lots of prayers my way and to the recipient!

Filgrastim Injection #3

I went to the doctor today to get a blood test done to make sure everything is going okay. I've been getting really bad headaches and Lee wanted me to get checked out. I assumed it was just a side-effect of the filgrastim and was reluctant to go to the doctor but she told me to come in and get blood work done so I did and everything was fine. I've noticed that I feel worse at night and in the mornings; once I'm awake and moving around I feel a lot better.

Side-effects include: headache, achy legs and lower back, some back and neck pain, slight nausea at times but no vomiting.

More than half way there!! :)

Day 2-3 Side-Effects

It's the morning of day 3 so I haven't gotten the third injection and I'm really uncomfortable. I was up a lot of the night tossing and turning. It hurts to sit still for too long. I have this dull but constant ache in my legs and lower back. I've had a super headache on and off too. I'm feeling a little nauseous but I can't tell if that's from the medicine or lack of sleep last night. 

I have to drive home today which is about an hour and a half drive... Not too long but I really don't feel like moving, let alone packing up my car and driving. 

This really makes me cherish my health. I know cancer patients sometimes receive filgrastim treatments so they go through this too and I'm sure this is nothing compared to chemotherapy. I can't even imagine. I wouldn't be strong enough to do that.  

Filgrastim Injection #2

Well, I've made it to day 2! I woke up today not feeling the greatest... my legs were really achy, a dull ache in my lower back and my throat felt a little sore/swollen. Sometimes when I'm really overtired my legs feel that same ache so I almost thought that was what it was. I took some Tylenol and took a nice long shower and felt much better afterwards.

I did my shot around noon and it wasn't that bad. I'm actually kind of happy I'm doing it myself so I don't have to drive anywhere to get it done. A little pain at today's injection site and still a bit from yesterdays... almost like a bruise but that is to be expected.

I started to get some busy work done and was able to finish it but then I started playing some mindless games on my phone and instantly fell asleep on the couch. I actually slept most of the afternoon away... probably a good 2 hours or so.




Tomorrow is another day!

Filgrastim Injection #1

I just gave myself the first injection. I was really nervous but it wasn't that bad. I injected 2mL of filgrastim, which was a 600 micrograms dose. Luckily you can inject up to 2mL subcutaneously so I only had to do one injection. Those receiving a greater volume of the medication may get an injection in more than one site.

I inserted the needle and started pushing the medication slowly. The slow injection was the key for decreased injection pain. Your body can only absorb so much fluid in a short amount of time so by giving it a little extra time, it makes it a bit less painful.

The area was a little sore and it radiated around the injection sight for a little while but it's fine now and it's 9pm and I'm still doing well. No side effects yet! I'm still going to continue taking Tylenol regularly in hopes that it will help with what's to come.

Until tomorrow!