Sunday, October 31, 2010

Day 4

Today has almost been the best day yet, considering the circumstances. I scheduled my injections for 9:30 am every day. I really could schedule them for any time I wanted, but I chose that time because I could still get to my church meetings, which start at 10:20. Plus, it's not too early or too late. Things went so smoothly at the hospital, I could tell it was a Sunday. Meaning there must have been some divine intervention. I actually got to church 10 minutes early (which never happens!) and Jon-Michael pulled up with the kids at the exact same time! Hmm, it could be that I'm the reason we're barely on-time/late every week...ok, it's just true.

The nurse, a new one yet again, was super nice today. She did a great job with my injections, and she even told me in so many words that my stomach looked good for having two kids. Well that just made my day! (Even though it's not true...I'm not blind to the changes pregnancies force on my body.) It was still nice to hear though. She warmed up my shots and did them slowly enough that it felt just fine. And she was very pleasant to visit with. Actually, three of the four nurses I've seen have complimented me on something! I got a few comments on jewelry, and I got another one on my shoes today. I think the nurses are all just super nice. Although, the nice-but-not nurse from Day 2 didn't compliment me at all....but I'm not bitter about it or anything. Ha!

So I was expecting hard core pain today, especially after yesterday afternoon. From Day 2 to Day 3, the frequency and intensity of achiness (is that word?) was pretty significant, and I expected it to be the same from Day 3 to 4. Yet it was not. Hallelujah! First of all, even though I did have the anticipated stomach pain right after the injections, it felt like nothing compared to the other days. And I was not looking forward to dealing with the discomfort as I sat for 3 hours through church. I figured it was one of those tender mercies that, for the most part, I was completely unaffected during church. I did have a couple of flare-ups, but I could totally handle it.

I did notice aches in more places, like my knee (only one so far) and my one shin, well actually, just my whole left leg. But not all at the same time. My hips and lower back still hurt, but today it was more reminiscent of menstrual cramps. Seriously, if that's the worst of it, bring it on. I mean, I get that every month, and I haven't died yet. The only thing that was worse from last night and today is my hip sockets. Sometimes when I'm about to stand up, it feels like they're out of place, which of course, they're not, but I have to sit back down and brace myself to actually stand up. It's a very strange feeling. But it's fleeting. Honestly, I kept waiting all day for this killer pain to set in, but it wasn't even as bad as yesterday. Or maybe I'm just used to it now. Actually, now that I'm thinking about it, my lower back is mildly uncomfortable, and I just felt something in my left femur. I really doubt that the pain is lessening, so it must not have been that bad to begin with because I can mostly ignore it now. How's that for a selling point? It hurts less the longer you do it!

Ok, that's not completely fair to say. I feel really lucky to feel as well as I do. I talked to the director today and I was pleased to report how good I felt. She's been keeping tabs on me since I started receiving the injections, which is really nice. And I've been told countless times that if the pain became unbearable, I could call her or the hospital and get a prescription for something stronger. It must feel worse for some people, because Tylenol, which I generally find ineffective, has worked fine. Part of the daily questions I'm asked for the study are about various, and sometimes rare, symptoms. I have no rashes, no nausea, I'm sleeping great, my appetite is normal, my digestive system is functional, no vomiting, no bruising...I think those are all the weird things they ask me. Like I said, I feel great, considering.

Yesterday a friend of my commented that she wouldn't be able to be a donor because of her health, which made me wonder what sort of health restrictions they have. I mean, I have been taking an anti-depressant for, let's see, 12 years now, and they had zero problems with that. Plus, I'm a bit anemic and have low blood pressure. (Maybe that explains all those fainting spells...and if you haven't heard of any, I'll dedicate a post to those stories in the future!) Anyway, I was going to ask the nurse about that today, and I forgot, being so flattered because I have such a nice looking stomach and all. I figured they would have something on the website, and they do! Here's the link: http://www.marrow.org/JOIN/Med_Guidelines_Join/index.html

I have determined by reading through it that most people are probably eligible. Of course, there are no guarantees that you'll ever get contacted. Some people never get contacted. Recently I watched the movie "Seven Pounds." (If you haven't seen it, and want to, skip to the next paragraph, because I don't want to spoil it with what it made me think of!) Because I was already in the middle of this process, donations were on my mind and I totally figured out the movie not to far into it. Maybe I'm not that clever, but I never figure out movies, so I was impressed with myself. Because of what I know, it also made the movie completely unrealistic in a lot of ways, though I did enjoy the story. I thought a lot about what I'm willing to give. I think it's really easy to forget that people are dying every day because they never get a compatible donor for whatever it is they need. A lot of donations require someone to die, so (with the exception of this movie) getting a match is out of anyone's control. I just remembered I saw the end of "John Q" on tv a while ago, and that had a different, but related story. From what I saw, John Q took some doctors and nurses hostage and wanted them to transplant his heart into his son's body because a suitable match couldn't be found. Of course, that's not how it works, you don't kill yourself to save someone else.

My thoughts are directed to the Savior. He sacrificed himself to save another. You, in fact. It's not at all likely that I will ever be in a position where I have to choose my life or someone else's. But would I do it? For someone I don't know? For someone I do know? For someone I love? For my own child? But, really, would it matter who they are? I think of the scripture in John 15:13. "Greater love hath no man than this, that a man lay down his life for his friends."

Please don't misunderstand me. I don't mean to compare myself to the Savior in any way. Really, it's worse to have the stomach flu than what I've experienced thus far. I can think of lots physical pains that are worse than this whole ordeal. Not to mention emotional or mental or spiritual pain. These are just thoughts that come to my mind as I contemplate the significance of sacrifice and what that really means. I don't feel like I'm sacrificing, because 24 hours from now, I'll be almost completely back to normal. My body will be able to recover lost cells with a few weeks, if it even takes that long. I haven't had to change anything over the last few days, except for the time I've spent. (I'm even getting reimbursed for the miles I'm driving!!) I feel like I'm gaining a lot more than I'm giving up. It's almost like it's a bonus that someone could live because of what I'm doing. It's so easy. I'm so glad I've been able to experience this.

And tomorrow is the big day. I have plans to read and watch movies in bed and sweats. I'm positive I could name 10 people right this second who love that! It's a pretty sweet gig. Plus I get to order whatever I want from the hospital cafeteria! (Hey, it's free, and someone else made it...sounds great!) I can't wait!

Saturday, October 30, 2010

Day 3

And so it begins. Actually, last night I had my first "achy bone" pain. It was fairly mild, and it was in my ribs. It initially reminded me of how my chest feels when I've run too hard when I'm out of shape. Probably none of you have experienced that...but anyway, it was different than I expected. I was expecting constant increasing pain and my bones to feel swollen or something. It's not really like that at all.

This morning's injections were better than yesterday. Probably the best day yet. Again, because I was prepared, and the nurse warmed up the filgrastim and dispensed it slowly. (Thank goodness!) And she was really efficient. I was in a hurry today because I had some plans this morning, and I didn't want to be late. She was really nice and very accommodating. Unfortunately, I think she only works on Saturdays, because I would love to have her be my nurse again!

Each nurse deliberately places the injections in a different place each time. So now I've got this fun little collection of tiny red spots and/or bruises around my stomach within a few inches of my belly button. And I've still got a total of four more shots to go! Maybe I'll see if they connect into a cool design when it's all over.

Actually this process of donating peripheral blood stem cells and receiving filgrastim injections is part of an ongoing study to determine the effectiveness and long-term side effects versus a bone marrow transplant. It's been going on for over 10 years and the side effects are well documented, so I'm not concerned about being a "test subject." But as a result, I've been answering a lot of questions about if I'm experiencing pain, where, and its severity. This morning I rated all the pain as mild, when I felt it. It was mostly few and far between. And after my injections today, I would bump up the rating to moderate. Mostly. But it's hard to determine what would be called "severe."

Since I first felt the "achy" feeling last night, I've been trying to figure out a good way to describe it. It's not easy, because it's not like anything I've really felt before. Last night, it was more surprising than anything else, because I wasn't expecting that sort of sensation. It's a kind of dull pulsing feeling, mostly lasting for one or two seconds. Today, it moved down to my lower back and hips and continued in my ribs and sternum. It's starting to last longer, like five seconds or more, and definitely more intense. In spite of my whining here, I'm trying to be tough, but sometimes I can't help but wince because it comes on so suddenly and stronger than before. It feels like something should trigger it, like moving funny hurts when you pull a muscle, but it's not like that. Sometimes it hurts when I sit down, whereas I think it should be more uncomfortable to stand. This morning I walked to the garbage can and threw something away, and that started a major flare-up in my ribs. Perhaps it's not at all related to what I'm doing and just arbitrary, because I can't really figure it out. Even though I'm sure it will get worse tomorrow, I only have one more day to feel it. I've been told that the relief is almost immediate upon starting the extraction, which will be bright and early on Monday morning.

This has actually been a testimony building experience for me. Jon-Michael and I decided to think about having another baby after Bryce turned 2, which was in June. We began talking about it, and prayed about in July. I got an immediate and emphatic no! I was surprised, because I don't usually receive such direct answers to my prayers. After a few weeks I questioned that answer because I felt like it was a righteous desire. But as I reflected back, I knew I received a clear answer. It obviously wasn't the right time.

And not long afterward, I received the phone call that I was a possible match. After I answered the extensive health questionnaire, I received a call to clarify a few of my answers. I knew one in particular could be a problem...it was the one about whether or not we planned to get pregnant in the next 6 months. (It is extremely unsafe to receive filgrastim injections while pregnant, and they did multiple blood tests over the course of my preparation to verify that I was not pregnant before I received them.) We had originally hoped to be pregnant within six months, even if I had to wait a month, since it wasn't meant to be in July. But we discussed it and decided that if I was selected as a donor, then we would wait. But patience has never been my strong suit. After I began the process to find out if I was a good match for the patient, I wasn't confident that I would be a donor. The odds were not that great. So, doubting Heather that I am, prayed about it again. Well, I got my answer, and it was again, no.

Obviously, I was selected. Even without my patience and faith, things worked out as they were supposed to. Even though I'm sure I'm not able to share it as eloquently as I experienced it, I felt very blessed to be a part of this. It is just another testament to me that our Father in Heaven knows us. As individuals. He is as concerned for this man who will be the recipient of my stem cells, as He is for me and my desire to continue my family. Of course it's possible that there would be another person out there who would be a match for this man, but it's possible that there's not. And even if there is, it may be that they are not in a position to donate at this time. I really don't know the likelihood of all of that, but if I was selected as a match for this man, and we don't even live on the same continent, I feel like it's significant that I was in a position to donate. Not because of me. I'm not anyone special. But our Heavenly Father wants this man to be a recipient, and He made sure that someone was able to be a donor. I'm grateful to be part of that, something bigger than myself. I was given an informational video before the process started, and a woman said that she would do it again in a second. I haven't even finished everything, and I know I feel the same way.

Friday, October 29, 2010

Day 2

Today was better and worse than yesterday. Although the better wasn't that much better and the worse wasn't that much worse, so I can't complain too much. I went to get my injections this morning feeling much more prepared. I actually had to wait a while for them to get to me, and I'm glad I didn't have to do that yesterday. I think it would have just stressed me out.

I had a new nurse helping me today. She was very pleasant, but not nice. Well, that's not fair to say. I guess I just had an exceptional nurse yesterday. They both explained a lot of things to me as they prepared me for my injections. Yesterday, I was told that they heat up the filgrastim, because if not, it has a bit of a kick going in, and I didn't want that. After experiencing it yesterday, I agreed. Also, they inject it very slowly so it doesn't hurt as much. And, like I said yesterday, it wasn't too bad. Actually the worst part of getting the shot itself was how long it took, just because when you breathe or laugh or talk, you can feel the needle because your stomach moves when you do those things. (Or maybe it's just me because of that redundant tissue...) It's hard to hold perfectly still and still make small talk with the nurse. :)

Today the nurse was, as I said, very pleasant, but apparently she didn't heat up the filgrastim, and she injected it fairly quickly...definitely faster than yesterday! The first shot wasn't too bad, similar to yesterday, but I could tell she was doing it more quickly. But the second one hurt, and I knew what the other nurse meant when she referred to it having a "kick." It was nice to have it over quickly, but I think that made it start hurting more quickly that the day before.

Today I was prepared and I took my Tylenol before I got there to try to curb the stomach pain I knew I would have. I believe it helped, but since I knew I wasn't going to die from it, I think I was also a little more mentally prepared for it. I didn't experience any of the anxiety I had yesterday when it started to hurt, and I feel like the pain subsided much more quickly as well.

Both of the nurses, as well as the CMDP director, who came with me yesterday, told me that I would probably start experiencing the bone pain on Day 3. I'm glad it will be the weekend so Jon-Michael will be around if I really start to feel crumby. My nurse today told me that it would start in my long bones, and my flat bones, like my forehead. Apparently flat bones have a lot of marrow. That could explain the headaches, which I had originally chalked up to stress, because I'm not used to having Caleb home all day. (Yea for fall break...mostly!) Actually I'm sure it's a little bit of both.

It's interesting because my fall break was a little different than I originally anticipated. Two weeks ago today my sister Allie had a baby, and 4 days earlier than that, my sister-in-law Danielle had a baby, so we planned to visit both of them during fall break. (It was frustrating to realize I couldn't just up and leave like I could before because of school, but I'm still grateful for Caleb being academically occupied for half of every day!) The plan was to leave last Friday morning and return on the following Wednesday, because my injections started on Thursday. I was really looking forward to meeting two sweet new baby boys and seeing their families. On Friday morning I got up and said my morning prayers, and instantly felt like I shouldn't go to Utah. Long story short, I didn't go. I was very disappointed, but the more I thought about it, the better I felt. I really don't know why I wasn't supposed to go. Maybe it had something to do with me being able to being a donor. That is definitely a worthwhile reason to stay home. Especially because it is literally a matter of life and death.

In the mean time, Tylenol isn't terribly effective on my headaches, but it's the best I can do right now, so I can't wait for the achy bones to start...I'm sure I'll have an even whinier post tomorrow!

Thursday, October 28, 2010

Day 1

Many life changing adventures start with a phone call. Such is the case with me. In late July I got a call from the Colorado Marrow Donor Program because I was tagged as a possible bone marrow match for a patient. I had forgotten that I joined the registry...8 years ago. Although, I remembered it then; I almost passed out when they drew my blood because they totally had to fish around in my arm to find the vein to get the sample...ugh. I donate blood on a regular basis (or as much as I can in between pregnancies and nursing, which means not as much in recent years) so it was not a big deal to me to join the registry when they came to my office at the City of Arvada years ago.

A search specialist with the CMDP called me initially. She asked if I remembered joining and if I was still interested in being on the registry. Well, who says no to the opportunity to save someone's life? Although, sad to say, people do. Using the blood sample I provided when I initially joined the registry, I came up as a possible match. After confirming my continued interest, I had to go through some additional steps. I had to fill out a (very!) complete health history online and answer a lot of questions over the phone. Once that was finished, I had to go into a Bonfils Blood Center to get some blood samples drawn to find out if I was a good match. Apparently only 8%, or 1 in 12, people who are initially contacted are a close enough match to be a donor. It was a little sad for me to find that out, because I was excited at the prospect of being able to participate.

This was not only a unique experience, but one very dear to my heart, and that of my family. My father-in-law, Mike DeShazer, was the recipient of a similar donation about a year ago for his leukemia, a blood cancer. His sister was the donor. In terms of family, there is a 1 in 4 chance that a sibling will be a good enough match. If his brother or sister was not a match, the next step would be to check his parents and children, which had 1 in 8 chance of being a good match. His mother passed away, and his father is old enough for it to be too risky. I said to him that it was good thing he had 8 children! We had a good laugh about that.

Many of you know, he passed away in February. As a family, and personally, we feel a lot of peace about it. In this way, I'm so grateful to have the chance to help someone else.

I had to wait almost 7 weeks to find out whether or not I was good match. On September 23, I got a call from the director of the CMDP and she told me the news. I still had to go through more blood tests and a complete physical and more health history. (Many thanks to all my friends who watched my kids during all these appointments!!)

Not long afterward, I received a call from a doctor at the CMDP and he told me all the details. My patient is a 41 year-old man with acute leukemia. (I later found out that he is also an international patient...I have no idea where, but still!) I would be donating not bone marrow, but peripheral blood stem cells. I was familiar with this procedure as it was exactly what my father-in-law received. It involves removing these cells, which are produced in the bone marrow, from my blood. I must say, it was nice to know I wouldn't have to (though I would have!) go under the knife for a marrow donation, which I have heard is extremely painful.

This procedure is less involved, and, to me, seems similar to dialysis. I will have the blood taken out one arm, then it will be fed through a machine to remove the stem cells, and put back in the other arm. The only problem is that enough of these stems cells do not exist naturally in the blood. I needed to get five days worth of shots to stimulate my body to force stem cells into my blood stream before my extraction. And with that freakishly long preface, today is Day 1 of injections.

As I was reviewing the information I had been given, I began to feel slightly terrified by all of this. (Although, again, I should just be grateful I'm not donating the actual bone marrow!) It's not receiving the shots themselves, which can be given in the arm, leg, or stomach, but the side-effects. The most common, and expected, is bone pain. My aunt-in-law, Krsten, who was the donor for her brother, told me that it felt like having a balloon blown up in your bones, like they were expanding. The CMDP director told me I would feel like I had arthritis in all my bones. There are other possible symptoms, but this bone pain is what I'm not looking forward to.

Of course, this would not keep me from donating. Prior to my Day 1, my patient started a lethal round of chemotherapy. It would essentially kill all his diseased bone marrow. My donation would provide him cells so he could create new bone marrow and new cancer-free blood. If I backed out now, he would almost certainly die.

Jon-Michael gave me a priesthood blessing to help me get past my minor insecurities. I felt good as I went to Presbyterian/St. Lukes Hospital this morning to receive my first set of injections. I got them in my stomach...the thought makes me feel ill...because it would hurt less there because "women tend to have more redundant tissue there." (Meaning fat.) Haha...well, receiving the injections really didn't hurt any more than any other shot. (So I guess my redundant tissue did the trick!) It was a tiny needle, like a flu shot. So I left, still feeling good. It only took 20 minutes to really start hurting. And it wasn't in my bones yet, just at both the injection sites. It was like the filgrastim just sat there in my stomach and then finally decided to spread. It was very uncomfortable, and I started to feel some anxiety because I was driving, and I didn't want it to get worse. Fortunately, the pain subsided within the next half hour, and I have felt fine since then.

Even though this is just the beginning of the procedure, which will happen on Monday (November 1), this has been such a rewarding experience. Every person I've met has been so nice and many have told me how great they think it is that I am doing this. I don't think it's great that I'm doing it, because I know any of you would do the same given the chance. It's also been particularly rewarding because I've met a lot of the hospital staff that knew Mike while he was in the hospital. One nurse today told me how much she liked him and thought it was neat that he played his guitar at the hospital all the time. I almost started crying when we were talking about it today. I hope I can help someone else's husband or father or brother or son. I know what a difference it can make. I've got a link to the National Marrow Registry Program here on my blog. It's called Be the Match. You could be a life-saving match for someone too.

Tuesday, October 19, 2010

Which Ward?

The boys and I are driving to Utah this weekend to visit family and meet a couple new babies! We won't be attending our ward (Heather Ridge Ward) because we'll be gone on Sunday. Caleb and I were talking about where we will be staying.

Me: We're staying at Allie's house. (My sister)

Caleb: Does she have a church there?

Me: Yes.

Caleb: Do you know what her church is called? Actually I think it's called the Allie Ridge Ward.

What a little turkey!

And here are some pictures of my kids, since I haven't posted any in a while!

Caleb being his cute self.

Bryce, who is equally adorable.


Caleb at swimming lessons...he really enjoyed spitting water out of the pool.

Caleb and Brandon, who were in my group on a kindergarten field trip to the Rocky Mountain Pumpkin Ranch!

video

And Caleb racing Lydia...who do you think will win?