In recovery . . .

Bone marrow is really really red!!! There is is folks -- my marrow dripping into my mom:)


Ahh, I am back among the land of the living. So the whole experience was really not that fun. And I really hate to say it, but before all of this happened I was shocked that anyone would not be willing to do this procedure for someone else. Well . . . I am not so sure I would do this for just anyone. For a family member - surely, but someone I didn't know, ummmm . . . I don't know about that.
I don't know if any of you follow my sister's blog, but if you don't you should check it out because she has a completely different point of view on the experience that I do. You can link to her blog from on the side of mine.
The day of surgery, I headed into the pre-op around 5:30 to get changed, do paperwork, get an IV, and talk to the anthologist. I currently had hives all over because I was so stressed about this procedure. When I finally got to speak to the anesthesiologist, my first question was - "So, do you know what you are doing?" Now, by this I meant are you planning on an epidural or general anesthesia - because I was going to quickly imply that general was the ONLY way to go for me. Dr. Lee quickly responded with the fact that he surely knew what he was doing because he had looked it up on the Internet the night before and he was planning on using general because that video was clearer. He was quite funny. I let him know that I had hives so that they did not think that I was experiencing an allergic reaction to anything - he ever so nicely gave me a shot of a little something that calmed me right down:)
I was finally wheeled into the OR where I vaguely remember meeting the doctor - I think I did - but that may have been a dream and the next thing I knew I was waking up in the recovery room. My blood pressure was LOW LOW LOW! They said that in the process of getting 1 liter of bone marrow, 3 liters of blood came out. Now as you remember I was only able to give 1/2 of a unit of blood during the donation, so when my pressure dropped to 60/40, they grabbed my measly 500 cc's and hooked me up. Slowly, my pressure cam up to 90/60 as I felt better. During this time, I had to use a bed pan twice which is something I never want to experience again.
Once I started feeling better, I got to actually start going to the bathroom - which was when the problems started. I could not get up and move around without throwing up. They tried like 4 different types of nausea medicine and nothing was working. Every time I moved, I threw up! So, this went on from 10:30 am (when I was moved to recovery), until 8:30 pm!!!!! At that point I wanted to LEAVE! I could actually see our hotel room from my bed in the hospital and my mom had already received my bone marrow and was in the hotel. So - I fought through one more trip to the bathroom to prove I was fine and then was discharged. As soon as I got to the hotel, I headed straight back to the bathroom to throw up again. So here is my mom, hanging out, feeling good after the transplant.Here is me right after arriving home.
The rest of the evening was very vague memories. I do have to say that I do remember my nurse like being an angel. The whole day I was in and out of awareness and every time I woke up I would see my nurse's face. Her name was Becky, so I have decided I have an angel Becky is all areas of my life ( home life, hospital life, and school life).This is the following morning.



So, by day 3, I am feeling a lot better. Still feeling like I have been kicked multiple times in the butt by a horse and the bruising is pretty grosso!!! But the nausea is gone so I am happy with that! I absolutely refused to take the oxycodone that was prescribed and I am just sticking with Tylenol to handle the pain. We are still here in Baltimore since my mom is going to and from the hospital daily. And . . . another note of interest, my mom did get the riggers after my bone marrow started going into her. My blood type is B and hers is O so she got the riggers (which is like uncontrollable shaking) during the transplant process and she had to be knocked out.

Here is the aftermath - which gave me a big butt look. Although you can't really tell in this pic . . .





This picture is really gross - but pretty cool. Do you see the holes? I had EIGHT of these in my skin. Ugh -- kind of makes me sick looking at it but it is part of the documentation needed!

So - every time the bandages are changed I still feel quite sick. I almost passed out this morning when we were attempting to get me into the shower - but day by day it is getting better. We are staying down here until Wed morning and then we will head back to PA for my mom to stay in seclusion in her bedroom. The nurse said that I should not do heavy exercise for 2 weeks which puts a big damper on my half marathon training - but so is life I guess.
Thanks to all of you who were praying -- but keep praying, I may be out of the woods - but mom is not. She is just beginning this battle.

Life as is . . .

Wow -- so I have to say that this has been exhausting and I have not even done the transplant yet. The problem lies in the fact that my mom is technically not supposed to be alone, but at the same time she cannot technically go anywhere. So, I have to wait until my dad and Nikole get home at 5:30 or 6 every night before I can go do anything or run any errands (which include training for this half marathon). For example, yesterday, I woke up at 6:30 to help my little sis get ready for school and then walked her to the bus stop. Now - walking to the bus stop is no easy task during the winter in PA -- it is like below freezing temperatures and we are standing there for 20 minutes, because unlike myself, my little sister is early for everything!!! So, after she got on the bus, I came inside to do devotionals and work on grad school until the cleaning lady arrived. Once the cleaning lady arrived, she took over my post as "watchdog" over my mom while she cleaned and I went to the YMCA to run. On the way home, I tried to stop at the jewelry store only to find out that they do not open until 10:00 am. I am still trying to get there to get the new ring that John bought me for Christmas sized. I got back from running, showered, got ready and we headed towards the hospital. We decided to have brunch at Craker Barrel because obviously going out to eat is NOT included in the "not going anywhere or being around people" clause that the doctor states. After our wonderful bruch, we headed to Baltimore. We stopped at Bank of America on the way so that I could cash a check - only to find that I had forgotten my ID in my dad's car from when I went to the gym the night before:) So, ring and bank had to stay on my list of things to do the following day. Finished the drive to John Hopkins, sat in a room for 4-5 hours while my mom and I talked, worked on grad school, and attempted to relax in a room the size of our car with a hard plastic seat to sit on - my butt goes numb EVERY day!
On the way home, I planned on stopping back by the Y to run in a see Nikki swim at her swim meet, but we were unable to make it on time so we just headed home. Once home, dinner had to be made. Now here I am going to say something that is going to shock you - but it is true. At this point in the day, my mother has MORE energy that I do. Like why am I more tired than a person undergoing intense chemo? Am I a really super tired person or is my mom a really super energetic person or is a combination of the two -- I would love to hear some thoughts on that . . .

So, I actually sat down to relax while my mother cooked dinner because I just couldn't do it anymore. After dinner, I went to the grocery store to get stuff for my dad while we are gone, picked Nikole up at the restaurant where she was having dinner with her friends, attempted to go back to the jewelry store only to find that they were closed again, and then returned home to tidy up the kitchen, put the groceries away, and keep working on the laundry. I sat down to watch tv for about 30 minutes, then headed to bed and tried to write to John a little bit before passing out.

Now - this same thing has to happen every day except that usually, I have to go run in the evening too because the cleaning lady is not here to relieve me. And I have to say - it is exhausting!!! I am almost excited for Friday to come because I will have to lay there for a few days and let my sister keep up the stamina for the daily activities!!!

Well, today, I just got back from getting coffee and having the car cleaned so my mom does not have to breathe in the dog hair from the back seat as her immune system weakens and now I am going to do my devotionals again and then prepare to head back to the jewelry store and bank before heading back to the hospital. I hope that at least today, I can keep up with my mom.

Gloves?

On Thursday, my mom had a Hickman catheter put in her to use for taking blood and getting her chemotherapy. Well, just to let you know, the catheter is basically a central line that goes directly into her jugular vein in the her neck. Yeah - you read it correctly. There is a thing stuck directly into that MAJOR vein. Then, the "thing" is run down her neck and comes out of her skin high on her chest. Here is a picture of it for better understanding.

Well, obviously this is a picture from the internet and not a picture of my mom's chest.

Anyway, today was the first day that we had to change the dressing around it. After kind of panicing inside (because I realized that there is most likely some blood involved), I doned my mask, washed and sanatized by hands, and took a deep breath. We both actually had to wear masks to do it. So, I pulled the sticky plastic thing off her skin that covered the entire catheder. At the same time, I kept making sure she was holding onto the line because I was freaking out that if I pulled to hard, it would dislodge the line and there would be a HOLE in her jugular! Yeah - that would be a quick return trip to the hospital.

After pulling it off, my mom took a peek under the dressing to check how bad it was and it really wasn't that bad at all. We pulled the dressing off - then I used this super cool invention. It was like one of those dish washing things that I sqeezed and alcohol came out on a sponge for me to wash around the area. I know that was stinging because it was alcohol going onto a hole in the skin :(

I washed it all up, then we put another type of prep on the outside where we were going to replace the sticky plastic thing. We did not have to replace the dressing because it was no longer "weeping", which is a really gross word. We sealed the hole all up in the sticky plastic and we pretty proud of our work.

At about the same time, I looked down to start cleaning up all of the materials and saw the gloves that were sealed in a bag - probably the gloves that I was supposed to use the do that entire procedure! I even remember thinking the entire time that it just did not seem like I should be touching all that stuff. I mean - we were wearing freaking MASKS for crying out loud and there I am touching the dressing and sealing it up in my BARE hands. So - at least my hands were washed and sanitized -- but I can be sure that I will NEVER forget to wear the gloves again!

My little miracle . . .

So, I cannot recieve any phone calls on my phone tonight because there is some sort of problem with Verizon in North and South Carolina. I found this out when I called tech support because three people texted me that they were trying to call and my phone was ringing with no voicemail, beeping, or doing nothing at all. I called tech support and they said it should be fixed by tomorrow morning. Well - John called me from a pay phone with no problem and I got to talk to him for like 15 minutes!!!! He is the only call that has come through to my phone tonight. . . So, thank you God for my little miracle phone call. You always come through :)

Personality Test

So, I just had to complete a personality test for one of my graduate classes this semester. Normally, I would not post such subjective information - but the accuracy of this test was CRAZY!! I was reading the in depth information about my personality type and it was like reading information that was written specifically about me!! It was hysterical and it really answered some the burning questions I had about why I am the way I am. Some of these questions were . . .
? Why do I put SO much on my plate at one time (grad school, running Special Olympics for the county, marathon training, building my own business, and a full time job in the course of time when my husband is in boot camp and I am preparing for a bone marrow transplant)?
? Why do I sometimes seem so very emotionally distant from other people - including my own husband at points in time?
? Why do I question if I live somewhere on the autism spectrum with my to-do lists,the LOVE I have for planning and watching the plan unfold, and my drive for perfection?

Well -- my questions are all answered! Here is what the test told me . . . (by the way - my personality type is only found in 1% of people in the world:)


Your Type is INTJ
Introverted - 78%
Intuitive - 38%
Thinking - 75%
Judging - 89%

Rational Portrait of the Mastermind (INTJ)
All Rationals are good at planning operations, but Masterminds are head and shoulders above all the rest in contingency planning. Complex operations involve many steps or stages, one following another in a necessary progression, and Masterminds are naturally able to grasp how each one leads to the next, and to prepare alternatives for difficulties that are likely to arise any step of the way. Trying to anticipate every contingency, Masterminds never set off on their current project without a Plan A firmly in mind, but they are always prepared to switch to Plan B or C or D if need be.
Masterminds are rare, comprising no more than, say, one percent of the population, and they are rarely encountered outside their office, factory, school, or laboratory. Although they are highly capable leaders, Masterminds are not at all eager to take command, preferring to stay in the background until others demonstrate their inability to lead. Once they take charge, however, they are thoroughgoing pragmatists. Masterminds are certain that efficiency is indispensable in a well-run organization, and if they encounter inefficiency-any waste of human and material resources-they are quick to realign operations and reassign personnel. Masterminds do not feel bound by established rules and procedures, and traditional authority does not impress them, nor do slogans or catchwords. Only ideas that make sense to them are adopted; those that don't, aren't, no matter who thought of them. Remember, their aim is always maximum efficiency.
In their careers, Masterminds usually rise to positions of responsibility, for they work long and hard and are dedicated in their pursuit of goals, sparing neither their own time and effort nor that of their colleagues and employees. Problem-solving is highly stimulating to Masterminds, who love responding to tangled systems that require careful sorting out. Ordinarily, they verbalize the positive and avoid comments of a negative nature; they are more interested in moving an organization forward than dwelling on mistakes of the past.
Masterminds tend to be much more definite and self-confident than other Rationals, having usually developed a very strong will. Decisions come easily to them; in fact, they can hardly rest until they have things settled and decided. But before they decide anything, they must do the research. Masterminds are highly theoretical, but they insist on looking at all available data before they embrace an idea, and they are suspicious of any statement that is based on shoddy research, or that is not checked against reality.
Alan Greenspan, Ben Bernanke, Dwight D. Eisenhower, General Ulysses S. Grant, Frideriche Nietsche, Niels Bohr, Peter the Great, Stephen Hawking, John Maynard Keynes, Lise Meitner, Ayn Rand and Sir Isaac Newton are examples of Rational Masterminds.

here is the website if you want to try the test yourself and post your results as a comment!

http://www.humanmetrics.com/cgi-win/JTypes2.asp

Bye-bye love, hello lonliness

Well, I must start out by apologizing that I have not posted the very wonderful news that I just have weirdo blood -- no crazy medical issues here:) When I arrived at John Hopkins the following day, they retested my blood with more tests - which was NOT just a little amount but instead 15 vials! The more in-depth tests revealed that I did not, in fact, have cancer myself. So - that was very releaving as you can imagine. About the time I found out the results of the tests, the nurse then gave me the exciting news that I WAS going to give the unit of blood. As you can imagine - I was overjoyed - yeah right:( I was happy though that the tests were back on and the transplant was still on the horizon. So - I gave blood with very little drama. I was not able to give a whole unit, but only a half unit until my little veins gave out. I have to say though that I was very proud of my veins for all the blood that they gave that day (good blood despite the fact that it may not be bold).

Now, onto the current news. My love has officially left for boot camp:( We traveled to Columbia, SC Sunday night, two dogs in tow, and got a hotel room. Had a very tired, but special dinner, and returned to the hotel for a couple of hours of restless sleep. After only 4 and 1/2 hours of tossing and turning, we got back up and I dropped him off at Ft. Jackson at 5 am then turned around and headed back to Granite Falls for work. Suprisingly the day went really good - but returning home was a very different story. It was like I just kept expecting him to walk in the door from work. It does not help me out that there are papers laying all over the house with his writing on them and a laundry basket of his clothing needs to be washed a put away. So - at least for right now, I will leave the papers where they are and the dirty clothing in the basket.

I am still trying to decide if it is better for me to be upset and cry for a while or to lie to myself that John will be home any minute -- I think I have chosen lying to myself - maybe not the smartest way to go, but it is what it is - right? The end of April is a long way away.

I just sometimes really question if I am strong enough to do all of this. Well, I KNOW that I am not strong enough, but God is. And I know that He is with me every step of the way. My mom is such a strong person - I have never met anyone as strong as her. And the good news is that my DNA is pretty close to hers - right? So, I just hope that her strength is in the portion of the DNA that I do have. I pray that God gives me a small portion of the strength that He has given my mom - because today was really hard and it needs to go up from here.

Day One of Testing

Well . . . in some ways today went a lot better than I thought it would - and it other ways it was worse. It started with bloodwork - oh the dreaded bloodwork. Why do I freak out with needles? I mean I freeze when the talk of needles and taking blood begins. Like I was so stressed out by the upcoming bloodwork that I actually gave the lab tech the wrong birthday - what is up with that? And EVERY single time - after they stick the needle in and dig around a bit . . . I think - hmmm, that wasn't so bad - I shouldn't be as nervous next time. Yeah - right. So - I had to give 9 vials of blood - ugh - it makes me shiver just to think about it. Despite my intense praying for fast blood movement and my visions of healthy blood pumping through my body, my vein pooped out after 5 of them (one of the many reasons I HATE getting blood taken - my veins really struggle with it). So - a second one had to finish the job and through that whole second vein I was thinking - "And you think that you are getting a whole bag tomorrow - right:)

Then, I had to get chest x-rays done - which was not a problem at all. I have to say, I am very appreciative of the large lead blanket that they used to cover and protect my ovaries. Because frankly, my ovaries need all the help they can get since they struggle on a good day.

Next was the health history with a nurse and discussion of the actual bone marrow procedure which is pretty amazing and is definitely worth the time to explain . . .

1) I will be put asleep (thank you GOD) and the doctors will drill into my hip with a very large needle.
2) The doctors will suction out bone marrow from one hip. They get the most stem cells from the first pull and each pull after results in less stem cells and more red blood cells. Once they are only getting red blood cells, they will move to the other hip and do the same.
3) I will just chill (sound asleep) as my marrow is sent to the lap for the stem cells to be counted. My mom actually has a specific number of stem cells that she needs so the lab will count to make sure enough were captured (technology is truly AMAZING)
4) The lab will chat with my doctor and tell him either to sew me up or suck some more. This process will continue until they have enough. And then I will be done - easy as apple pie - right:)
Prior to sewing me up (I really don't think they are even sewing), they will replace my red blood cells using the unit that I donated if I lost too many during the procedure).

So - this process was explained, I was send to have an EKG, and my mom and I went home!

So - now to the not so good point of the day. We are headed home as I continue to drink water and dread the unit of blood they will attempt to take tomorrow (although I was pretty excited about the fact that the nurse told me to each whatever I wanted for breakfast!!!! - aka eat a lot!).
Then we get the phone call -- something is not good with my bloodwork. I am still confused by all of this and hope to have a much clearer explanation tomorrow - but basically, my unit donation had to be canceled tomorrow and replaced with further testing because the blood seems to be indicating a clotting problem. The numbers are showing that my blood is not going to clot fast enough. So what does this mean???? Well, it either means that I have a bigger problem underlying this clotting factor or that I just have weirdo blood. If I have a bigger problem - I am not even going to go into the suggestions that they had because it would be truly ridiculous - then transplant goes bye bye:( If it is just a weirdo blood thing - then I can get meds to fix it - i think - to make my blood a little "bolder" (like bold coffee versus weak coffee) as my aunt called it - and then I can give the unit of blood and go on with "the business" as usual.

So - as of right now - I am released from the dreaded massive "blood donation" to give a smaller sample for further testing. At the same time, my mom will be ingesting both radioactive materials for a heart scan and formaldehyde for another type of scan in the course of 4 hours in the hopes that we are going through with "the business" on the 29th.

Radioactive materials and formaldehyde in the same day . . . really? That seems like a GREAT way to get someone ready for a life-saving transplant:) Gotta love science.