Day 40 - Head Pains

Hey everyone...this is going to be a short post. For the past couple of days I've been dealing with major headaches from my medication, and I haven't really been doing a whole lot besides sleeping or staying in the bedroom with lights turned off...

In all seriousness though, the pain is so bad I can barely focus on a whole lot, and I'm currently on a cocktail of oxycodone, regular strength Tylenol (which never does much for me), Ativan, and heat compresses to my head and neck to try to manage. I'm almost positive the headaches would go away if I took an Advil, but it's a bleeding risk and I'm not allowed to...which just makes matters difficult in the meantime.

However, today marks 40 days since transplant day...meaning I only have a mandatory 20 days remaining here in Baltimore. If all stays the same and I just hold out this headache situation for 20 days, I get to go home!!! I'm past the halfway point now! Hopefully, my blood counts continue to get better between now and discharge day so I can write more. For now...I need to avoid looking at the computer screen and continue to sleep it off.

Day 27 - An Evil Horse

Amazing what a little extra sleep can do to a person. All my life I've never been a morning person, but for one month I gave up my late nights and woke up at the crack of dawn to take giant pills on an empty stomach and walk (or more recently been wheeled over) across the street to my daily 8:30am appointments. This made me not only very cranky but extremely tired. Fatigue was already killing me and to have to force my body to do something it was not ready to do was absolute torture.

Thankfully it all came to an end when my mom took over as caregiver this past week. Since there was no more turnover of caregivers during my appointment time, I was able to put off my appointment until around noon...and thank God I did. I've never felt so much more awake and energized!! It was so bad that I actually shocked my nurse practitioner when I walked in the other day with a smile (first one she's seen since transplant day). Despite my body still feeling quite fatigued, I felt like I could take on anything.

I also started to see my blood counts slowly but surely begin to climb, which is a very good indicator that the transplant has taken and grafting has begun. My sister's cells have begun attaching themselves to my bone marrow and have started setting up shop to create more cells to take over as the dominant immune system and kill the cancer. Since this happened I've stopped needing the daily shots, stopped taking some pills, but started adding many more...fun.

I also had the worst ever pain to hit me at 4am a few mornings ago. I remember turning over in my sleep and then BAM!

I woke up to the most god awful pain twisting in my lower leg. Strained in agony, my mom came over to try to smooth out the cramp that was burning. It suddenly dawned on me...I was experiencing my first ever Charley Horse. I had been fortunate to go through my life without experiencing this pain, but due to certain medications I'm on and the fact that my potassium levels were a slight bit higher than usual and magnesium levels a bit low (also thanks to my meds...), I was susceptible to the agony of this crushing moment. Thankfully the pain subsided quickly and the soreness went away after a couple days...still...that was THE WORST.

I've also acquired new, more interesting side effects such as tingling sensations in my fingertips when touching cold or warm objects. It's the weirdest feeling, but neuropathy is quite common with the recent chemo that I was on. I've been told it will go away on its own in the next couple months...so I guess I have to get used to that.

Finally, I got the best news when I went to my appointment today...I'M GETTING DAYS OFF!!!!

Since my counts are now on the rise, I will be getting Wednesdays off!! You know what that means?!? MORE SLEEP!!!!!

But in all seriousness, this is a major improvement and one I'm definitely going to highlight as a stepping stone to recovery. I'm hoping that when all this is over that I can go back to school (hopefully by the end of the summer) and possibly visit my grandmother and recuperate by the beach for a little while. It seems to be calling my name and the ocean has always been the best place for me to heal both physically and mentally. One day...one day I'll get there. It's only a matter of time.

Day 14 - I Just Want To Sleep

It's been 10 days since my last post...and I've been struggling with how to follow up on my blog. Part of me feels it's too soon to say anything after the loss of Needa, but another part of me feels like there is never really going to be a right time...so I might as well give it a go. I'm struggling to just come up with the words to simply explain how I'm feeling because I don't feel like myself. Lately, I feel pressured to not let myself be anything but positive and optimistic. Emotionally, I've been rather numb since my last post. I haven't allowed myself to truly grieve and by doing so I wake up every morning trying to convince myself that it actually happened. My friend is gone and there isn't anything I can do to change that. I'm stuck in the acceptance stage of grief and will probably remain there until I come home. Until then, I can't afford to dwell on the issue.

Every day since then has been a serious challenge for me physically as well. My blood counts dropped to almost undetectable levels and my energy is completely gone. Simply putting on a shirt in the morning is enough to make me feel like I ran a mile. It got to the point where I had to accept the fact that I couldn't make the walk across the street and had to take a wheelchair to my appointments for two days. All I want to do is sleep...and I could if it weren't for the early morning appointments or the several different pills I take around the clock. I now live vicariously through the 10 alarm clocks I have set on my phone that tell me when to eat, when to take a pill, and when to sleep. It's insane.

The only joy I really get is seeing my caregivers rotating in and out. With every new face is a new adventure and a closer step to the finish line. I even got a little taste of that today when I went in for my appointment this morning and my blood tests showed a tiny increase in my counts. Despite it being a small victory, I was told that I could stop taking two of the pills I've been taking. What a relief!! Finally, I'm seeing some progress and a good indicator that everything is going as planned!

The only thing I need to look out for now is bone pain from the daily Neupogen shots I'm getting (same ones I had with the ICE chemo earlier this year)...which I have prepared for with a stash of oxycodone; thank God for pain meds! I also have to start keeping an eye out for any signs of GVHD which will most likely be starting at around Day 30-40. I'll probably talk more about that when the time comes. So stay tuned for more updates!!