Transplant Day - Friday, June 22

Tomorrow is the big day, and when I say big day I mean transplant day!  I was admitted into the hospital last Friday, and have been here ever since.  Assuming that I don't start running a fever or have any issues keeping food down, I'll be able to escape the hospital walls on Saturday!  Sure, I'll need to come into clinic everyday for the next 30 days or so to be closely monitored, but it'll all be outpatient.  My patience has been tested on more than one occasion over the course of the week between the constant vital checks, blood work, pill-popping, and general lack of sleep that you really have no idea how thrilled I am to get out of here.  It will be glorious!

When I arrived on Friday,  it didn't take long before my room became a revolving door.  Stephanie Madson had entered the building, and it felt like everyone was chomping at the bit to get some time with me.  Every 20 minutes someone new was coming in to introduce themselves letting me know how they may be assisting me throughout the week. While I appreciated the pro activeness approach on their end, I just really wanted a little time to myself to get settled.  Not to mention I wasn't going to remember any their names anyway!  It was information overload, but I think I did a decent job just trying to roll with it.  What else is a person supposed to do?  

It didn't take long before I was already missing the girls (our cats), and I started getting nervous about these chemo days that were quickly approaching.  To make things worse, the doctor came in wasting no time filling me in about all the nasty potential side effects I could/probably would experience along the way:  extreme nausea, vomiting, fevers, chills, mouth/throat sores, etc.  I know it's their job to just lay it out on the table so that if it happens, you've been warned per se.  It's just not something I really wanted to hear, and it just added to my overall anxiety on the matter.  Thankfully outside of some mild acid reflux and an evening's worth of weird shoulder muscle spasms, I haven't experienced any of these symptoms, and the doctor seems baffled by the fact that I haven't been puking my guts out day in and day out.  I've been told that the fevers and mouth sores can occur later on at home so I'm not exactly in the clear yet with that, but they said it is encouraging to see how well I have handled all of this. I must say, I'm pretty proud of how my body has handled this week as well. 

Speaking of being proud of my body, Josh and I got some encouraging news on Friday regarding my F-SH levels.  You may remember from a couple blogs ago how I was telling you about how high the number was when they originally took it indicating that my body may be trying to put me into early menopause.  Well we had the levels re-tested the Thursday before being admitted, and they dropped to 8.6!  Josh and I were both completely floored!  How did they go from 59 to 8.6?  This was pretty amazing news to us as 8.6 is a perfect range for someone my age.  Who really knows what could have caused such a drastic change in the number, but we'll take it.  We are still trying to protect ourselves by going in with a more pessimistic mindset about the whole thing, but it felt good to get news like that.  We brought up the study again asking if that meant I could now participate, but I missed the deadline by a week.  The physician was nice enough to reach out to the study head and she agreed to let me proceed with all the study drugs and follow the protocol even though I won't officially be a part of their study data.  In my mind, this really turned out to be a best case scenario.  I am able to get the daily required shots without all the legwork involved in being a study patient.  Score!

The shots started up right away on Friday, one being a long-acting dose and the other a short-acting.  Thankfully I only need to get a couple rounds of the long-acting drug because if you could see the size of this needle, you'd be amazed!  The syringe itself looked like some sort of crazy tranquilizer meant for a horse, and unfortunately, it's one that has to be given straight into the butt cheek.  When the nurse (Sarah) came in with the syringe I looked at her and she looked at me and there was an understanding that this was probably going to suck for both parties involved, but we got right to it.  The bed was adjusted so that it was completely flat, and I rolled on my side away from her clenching one hand on the handle bar with my other hand clenched into Josh's.  I took a few deep breaths, Sarah did the count down from 3, 2, 1 and then I felt the tiniest poke.  I was expecting to be in quite a bit of pain, but it turned out not being bad at all.  If anything, the short-acting shots hurt more as those need to be given in the back of the arm where the skin tends to be much more sensitive.  I get these little buggers everyday until 6/29, and then only time will tell.  Being that this is a study, nobody really knows for sure if these shots will help to preserve my fertility, but why not give it a shot?  Whatever the outcome is of these study drugs, I can say that I gave it my all to better increase the chances.


This week has been anything but a joy, and even though the staff has been great (for the most part), it's time for me to get through this transplant, and hopefully never look back.

After checking in on Friday.  Ready to get this show on the road!

Saturday - All hooked up to the chemo drugs and watching a little TV in bed.

My morning pills...

My schedule for the month...

Moving right along!

I started cell collections first thing Tuesday morning, and guess what?  I'm already done!  It only took me 2 days to collect all the cells needed, and then some.  The grand total for Tuesday and Wednesday came to 6.8 million cells collected - the goal number to reach was 5 million.  Tuesday alone I collected 4.25 million, and the doctors were quite impressed.   They kept telling me not to be surprised if it takes a little longer with how much chemo I've previously had, but apparently that didn't matter so much in my case!  I can thank both the growth factor shots and Mozobil for helping to speed up the process.  I was just told yesterday that the Mozobil shots are $14,000 a pop, and each growth factor shot I get is $1,500.  Isn't that outrageous?  I've received 17 shots of growth factor and 2 shots of the Mozobil. I'll let you do the math, but all I can say is I'm blessed to have such good health insurance. 

Naturally, we had a few "hiccups" on Tuesday morning when they were trying to get started because that's just how I roll.  As the nurse was trying to draw blood from both of the lines to use for labs, neither of them were working very well.  I guess sometimes the placement of the line can cause the issue or how I'm positioned so she had me turning my head from right to left, tried sitting me up, having me lay down, and even had me put my arms above my head to see if it'd help.  Nothing really seemed to work to get the blood return she was looking for, and I was starting to get nervous.  As it turns out I had some blood clotting that was building up in the lines causing all the issues so they went ahead and ordered a medication to break those clots up.  Unfortunately the medication needed to sit in the lines for a good half hour before they could try again which delayed the process of getting started.  In the end it was worth the wait.  The line that they needed to use to take the cells worked great from that point on even though the other one is still being stubborn.  Thankfully there were no issues pushing stuff through this line being that its primary purpose is to put the blood back into my body vs. pushing it out.  Nobody seems too concerned about the line not doing both, so if they're not worried, I'm not worried.

I took a bunch of pictures from the 2 days of collections that I thought I'd share with you all...
Here is the machine that the blood flows through.  Looks complicated, doesn't it??

The machine in action.  

The clear bag is Sodium Chloride, the bag in the middle holds the red blood cells, 

and the bag on the right holds plasma

Close up of my central line in action...

The red one pushes the blood out while the blue one gives the blood back

Mom & I on day 2

 

The final product for day 2 - Turns out there are 2.55 million stem cells in this bag!

Since I've reached the stem cell collection goal, the physician I saw today told me that I could expect a call sometime this afternoon letting me know what the bed situation looked like on the BMT floor and when I may be able to be admitted for my week's worth of chemo.  Sure enough I received a call around 1:45 this afternoon letting me know that a bed is all ready for me tomorrow morning already so I'll be checking in at 10 AM, and will be there for the next 5 days or so to get chemo and to have these healthy stem cells put back into my body.  

Please pray for patience for Josh and I as we get through the next several days in the hospital.  Between the lack of sleep due to constant interruptions for vitals, and finding out how I handle this new form of chemo, things could get interesting! 

I'd like to first start this blog entry by saying how proud I am of this guy!  My hubby Josh is a rock star, completing the Minneapolis Half Marathon last weekend after all these months of training.  Not only did he finish, but he was recognized for coming in second as top fundraiser for the Minneapolis chapter.  We were originally supposed to both run the Rock 'N Roll San Diego, but with needing additional chemo after the ABVD along with all this stem cell stuff, we decided to look into a race closer to home.  Thankfully the Minneapolis Half is also affiliated with LLS, and we were able to get our money back for the hotel we booked, so it all worked out!

Here are a few pictures from race day...

Picture taken after the race enjoying the beautiful weather

Around mile 8 or 9 we think

STILL smiling!

  

Just a tad tired after completing a whopping 13.1 miles.

He may or may not kill me for posting this picture :) I will take my chances.

I wish I could have ran the race with Josh as originally planned, but I'm glad I was at least able to see him cross the finish line.  It was a little touch and go with all the road construction down there!  A coworker and I rode together thankfully otherwise who knows where I may have ended up!  No more than 5 minutes after we got down there and found a somewhat decent spot on the sideline Josh was crossing the finish line.  That was a little too close for comfort, but everything turned out ok!

Alright, so now on to whats been going on with this stem cell transplant process...

First thing every morning since I got released from the hospital I have been going in to the U to get lab work done, a growth factor shot in my stomach, and meeting with a rotating physician so she can listen to my heart and lungs, and discuss what the lab results look like each day.  For a while there my counts looked as though they were going to drop significantly (which is to be expected), but then they all of a sudden started coming back up  Thank you growth factor!   With all the previous rounds of chemo I've had it's pretty common for my counts to take a nose dive and stay low for a while before recovering.  The physician each day seemed pretty impressed by my counts which was encouraging to me.  My body is responding the way it should be to the medications being given.

On Sunday and Monday my white blood cells (WBC) were around 1.4 and I was advised to start pulling myself back from large crowd environments (work, grocery stores, malls), and if I needed to go out and about during peak times, I'd have to wear a mask.  I admire those so much who walk around wearing a mask, and especially the women out there who rock their bald heads vs hiding it under a hat, scarf, or wig.  I have decided I'm just not that person.  I left my wig at home one morning and just wore a baseball hat to the clinic, and it ended up leaving me feeling so vulnerable and just uncomfortable.  I didn't want to make eye contact with anyone and was counting the minutes until I could leave the clinic and head home.  I really thought I'd be able to just let go and not care at some point, but it hasn't happened.  My wig has turned into a security blanket for me if you will.  I feel bad some days when I'm sitting in the waiting room with a bunch of bald women, and I'm the only one wearing a wig.  They all know I'm wearing a wig, and in that moment I feel (dare I say it) ashamed.  What's my deal?  The only thing I can think of is that I've never liked too much attention on me whether it be positive or negative, and unfortunately being bald AND female is going to attract attention.  On top of that, I don't want people feeling sorry for me, and I know there's a potential of that occurring.  People don't have to say anything.  It shows in their eyes every time.

So back to the counts...

On Tuesday of this week my WBC's jumped to 3.9, Wednesday they really jumped to 11.4, Thursday I was at 17.9, and today they were around 22 or 23.  These counts will only continue going up until the next batch of chemo is given, but that won't occur until after all the cell collecting is complete.  What the doctors are waiting on now is for my platelet counts to come back up.  Those go down right with the WBC's so when they start coming back up, everyone watches closely since cell collection typically starts when the platelets reach 30 (or close to).  Studies have shown that people tend to collect better when the platelets are in that 30 range.  On Tuesday my platelets were at 19, on Wednesday they were at 20, Thursday they were at 21, and today they were at 23 so I'm getting there!  

I was even given a master plan today and you know how much I like having a plan!  I will go in to the clinic tomorrow and Sunday just for the growth factor shot, and then on Monday I'll go in in the afternoon for the shot, labs, and a mozobil injection which will prepare my body for cell collection on Tuesday!  Mozobil which along with the growth factor (neupogen) prepares the blood for the stem cell transplant.  It actually mobilizes the stem cells causing certain blood cells to move from the bone marrow to the blood so they can be removed for transplant.  I know all to well that the plan can always change, but I'm feeling so positive in what lies ahead.  I finally feel like myself again after this last round of chemo, and am in a much better place emotionally in terms of this potential infertility situation.   I just feel like everything really is going to be OK and will work out as it should.  I'm one step closer to the finish line and it feels good!