Day 106 - Post Treatment, Still Fighting

It wasn't until I started writing this post that I realized I'm post 100 days after transplant. Wow. Already I feel like I've come so far, and yet I have so much more ahead of me; just thinking about it makes me queasy.

At the start of last month, I took on a major stepping stone; I went back to school for an online summer course. These last few weeks have been very difficult as I have no energy to do much, and I'm still dealing with some lingering side effects from transplant. However, the great thing about this online class is that I can do it at my own pace (for the most part) and it gives me something to do. If I didn't have that, I'd be extremely bored and most likely severely depressed. I'm not even allowed to go back to work until next year when my blood counts are back and I've gotten all my childhood vaccines again. At the moment, I essentially have the immune system of a newborn baby.

Physically I'm still very weak, which definitely has an impact on what I can and cannot do. I sleep for a majority of the time and have hardly any appetite. I've also been dealing with this pulsing sensation in my ears that just doesn't seem to go away. After seeing an ENT specialist, I was left with more concerns than I would have liked. He couldn't tell me if this was something neurological, vascular, or nothing at all...but he did have suspicions on whether it was related to the blood clot I had at the end of my transplant ordeal. Next month I get an MRI to check and see if there are any problems...if so, I might need surgery.

Needless to say, this past month has been emotionally difficult considering everything going on. My hair is starting to come back, and I've managed to lose 10 pounds since I was discharged, thanks to my waning appetite. I resumed my perfect attendance at my cancer support group and have even caught up with a few friends of mine. I even managed to go to a Celtic festival with my mom and sister for a few hours (I had been dying to eat some haggis since my trip to Scotland). Despite all these wonderful things happening, I still feel empty and low. I thought things would start looking better once I was out of transplant, but the reality is that the fear of relapse is ever more present.

Everyone keeps telling me to "Stay positive!" or "You're cured!" and "You can finally go back to normal life!"...and I'm really trying...but the PTSD from dealing with this transplant, and everything that has happened in these past 3 insane years, is starting to catch up with me. It's gotten to the point where I had to decide what I want to do with my life based on my health predicament. I've been avoiding the summer sun in fear that just the mildest burn could end my life. Every day I have a moment of panic where I quickly check my neck for fear of finding a lump again. I can't sleep at night, because I keep having nightmares where my transplant doctor tells me my cancer has come back and there's nothing left for me. Everyone has been complimenting me on my hair growth, but I can't even enjoy it since I fear for a future where I'm told that I will have to lose it all over again. I try so hard to repress the fears, but it's just too much. There are very few people who seem to really understand as well. It's frustrating to think that even after all the treatment I've endured, I'm still fighting...only this time for sanity and peace of mind.

Thankfully, I'm planning to take some time for myself and get away from home at the end of the month. I'm hoping to be in a better state of mind when I return so that I'm ready for the fall. In September is when the real showdown happens: two transplant follow-ups, a CT scan, and I begin the childhood vaccines. In the meantime, I'll just keep writing essays for my class and distract myself with the World Cup. I may never "go back to normal life"...I've already accepted that...but I hope that with time I can move forward and away from this nightmare. I just have to remember that there is still so much left for me to do and that even in my darkest moments, there's so much to be grateful for.

Anyway, I hope you all have a wonderful 4th of July, and I'll try to update again on here soon!

Day 63 - Home Sweet Home

Hey everyone!! I'm so sorry...I had meant to post an update much sooner than this, but things were constantly getting in the way. For one, I'm still experiencing headaches at an alarming rate. I'm hoping that will die down as the days go on as it's medication related and I discontinued a pill that caused the horrible pains just 3 days ago. Another reason I've been delayed in writing up a blogpost was due to the agonizing pain of a blood clot that formed in my jugular vein which thankfully I caught in time. I was dealing with fevers and couldn't sleep since just the slightest touch to my neck was excruciating. At first, the doctors thought it was simply muscle related, but after doing an ultrasound they immediately found the clot and started me on a blood thinner injection I have to do twice a day for the next five weeks. This all happened just days leading up to my discharge.

Discharge day was last Thursday and what I was anticipating to be a smooth and easy day, turned out to be anything but. I started off with getting my catheter taken out. It was quick and easy, but it definitely stung like a bee sting thanks to all the alcohol prep and the fact that they had to put pressure on the spot of my neck where my clot is as they took it out....not pleasant. Then I came back to the cancer clinic to get my lab results back only to find out that I needed a blood transfusion. They were ready to access my chemo port but after several attempts poking me in the chest over an hour, they didn't have any luck. My port hasn't been used in about 2 months (it had been covered by the bandaging of the catheter) and it was quite tender being in the same spot as where my catheter had just been. In the end, I had to get a lovely jab in the arm with a huge IV. Again...not fun.

Finally, the day came to an end, and I was able to leave Baltimore the next morning. Part of me was relieved to finally be away from the constant appointments and being stuck in the tiny apartment for most of the day. Groundhog Day finally came to an end!! I'm happy to be around trees and greenery again instead of the cold grey buildings of the city. I love city life, don't get me wrong...it was just not ideal being in Baltimore of all cities. Still, I can't help but count my blessings that I was able to get such great care from Johns Hopkins...I can't recommend a better cancer center.

I'm taking things very slowly though as I am trying to readjust being back home. On the first day back, I managed to pull muscles in my legs, because I wasn't used to climbing 2 flights of stairs over and over while unpacking. Whoops. Now that my legs are recuperating, I'm looking forward to what the summer has in store for me. I'm taking a summer course starting next month and I plan to slowly build back my endurance so I can start working out again. It's still too early to go back to work though and I've been told I won't have my old energy back until probably next year. That's ok...if there's one thing cancer has seriously taught me, it's patience and just taking things one day at a time.

So, once a week for the next four weeks, I will be reporting to follow up appointments....and then once every other week following that for the next six months. At the end of discharge day, I got the results of my first CT scan which showed that I'm still in the clear and that there are no signs of recurrence (something that would be very rare at this early stage). Hopefully, it will last. If I make it to the one year mark, I'll be in a generally safe place...even better if I make it to 5 years with no signs of cancer. However, if I relapse between now and March 20th of next year, there's really nothing left for me....but I feel confident that all will be well. There's nothing I can do now but wait for the next scan. Only time will tell if the transplant worked. Time...something I hope to have much more of. There's gotta be a reason why I've made it this far and defied the odds.

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!!

Day 0 - A New Birthday

The last post I made on here was on Sunday, the day before my radiation appointment. There has been sooooo much that has happened to me in the last few days so I will try to break it down and condense as much as I can. So get ready for a whirlwind of events.

Radiation day crept up on me and left me no time to really mentally prepare myself. I tried so very hard to put up a brave front and felt so weak having to ask the nurse to up my anti-anxiety medication before I went down to the radiation oncology department. As every minute went by, my mind was racing faster and my blood pressure was naturally a bit higher that day. Ever since I was about 10 years old I always had this fear of radiation. X-rays and a few scans here and there were ok but full-on radiation exposure creeps me out. Something about the idea that invisible rays damaging the body is just so unsettling to me. For years I kept reassuring myself that I wouldn't need radiation therapy unless I was much older and ended up getting breast cancer, which seems to run in my family. But that was then...and this is now...and there's no transplant without a dose of total body radiation. So I bit the bullet. 

The machine was monstrous compared to my tiny 5'2'' self. 

It was intimidating as I climbed up onto the stretcher and laid down on my side. I asked to have some AC/DC music playing to get me going, but not even that could tune out the thoughts of worry screaming in my mind. I gripped my pillow, shut my eyes tight, and stayed on that stretcher for 30 minutes of exposure. It's true I didn't feel anything...just like taking a long X-ray. It's the fact that I couldn't feel the destruction that made my mind go numb.

After radiation, I was in a mental low and didn't feel like doing very much besides getting to the next day. I felt drained and disturbed to think that these invisible rays were entering my body, destroying my bone marrow and potentially damaging my organs in the long run. I've been reassured a thousand times that there are many safety checks and that the amount is measured on the tech's computers. It also was a very low dose. And in the end, I did it. I faced my greatest phobia...and I pray I never do that again.

The next day came along...March 20th...the first day of spring. It was only fitting for it to be my transplant date. They call it my "new birthday"...although I still prefer my own around Halloween, thank you very much. Anyway, the day started off as any other morning; getting up, grabbing breakfast, and making the walk across the street to the transplant clinic. I wasn't anxious or concerned at all and was just happy that the day finally came. I had been told that the transplant would be anti-climatic...though for me, it ended up being anything but. When I got to the clinic I had my vitals checked and they hooked me up to some pre-meds. My sister was already in surgery getting her bone marrow harvested for me. I was waiting in absolute anticipation.

(Just for you Noelle)

It wasn't until around noon that I got the big red bag full of my sister's bone marrow cells. They hooked me up the same way they would with any IV and I watched as the cells slowly dripped into my catheter. About 15 minutes into the infusion, things started to feel a bit odd. I was actually in the middle of FaceTiming with one of my dear friends when something just didn't feel quite right. My face started to feel flushed and I started to feel queasy. Shortly after I ended my call I spiked a fever of 103.5, was painfully vomiting, and I was shaking uncontrollably. Even piling 6 warm blankets didn't do the trick to stop the shakes, so the nurse decided to give me a bit of morphine which not only stopped the shaking but made me pass out.

Next thing I know, I wake up to the nurse telling me that I successfully completed the transplant and that the reaction I had was most likely due to the fact that some of my sister's red blood cells were still latched onto the bone marrow in the IV pouch. Since my sister's blood type is B- and mine is O+, it was like receiving an incompatible blood transfusion. Thankfully the moment the transplant was done the shakes subsided altogether and my fever began to drop. Despite that, they still instructed that I stay overnight in the hospital for monitoring around the clock. It was a very long and exhausting day and night.

In the end, everything turned out ok. The transplant was completed and now the long 60-day wait begins to see if it actually worked. I have a good feeling it will and I am confident that there will be a happy ending to this battle. The worst, I believe, is behind me. It's Day 3 now and I am just so grateful for every additional day that passes by. As I'm typing this I'm receiving my last round of chemotherapy to suppress my immune system so that my sister's cells can thrive. My white blood cell count is already below 1 and there is no going back at this point. I know in my heart that I've made the right choice to take on this transplant. I just pray that I have minimal side effects down the road. I'll give another update soon, I promise!!

Groundhog Day

Hello from Baltimore!!!! Wait a minute...I've already done that. This week has been a very peculiar one for me. Every day has felt more and more like a duty rather than a cure. I wake up in the late morning and have brunch. I walk across the street and go to the transplant clinic. I go to the same station to get my vitals check and then report to a lounge chair to get my chemo. I'm there anywhere from 2 to 4 hours (depending on my blood counts) and then released. Then, I walk back across the street to the apartment I'm staying in. Finally, after a little bit of free-time, I have dinner, take my temperature, and go to sleep....only to do the whole thing all over again the next day. I'm literally living in a Groundhog Day scenario and will be doing this for the next two months.

As for an update on my treatment regimen, I have successfully completed the pre-transplant chemo, with today being my last day. 

Besides the minor queasiness, it was generally well tolerated and now I proceed to the next step...total body radiation.

My appointment is set for the afternoon and I'm seriously dreading every minute that passes by. I know all will be ok and it will be over in a matter of minutes...but that still doesn't diminish the phobia that has been growing from an early age. I've been told mixed messages from the nurses regarding getting some sort of anti-anxiety med, and I'm determined to take two Ativan should they choose not to give me anything (as I know one pill will not be enough to calm me down).

After this is the big day!!! Tuesday I get my transplant!!!

My wonderful sister will be donating some of her bone marrow to potentially save my life. In all honesty, though, my part is very anti-climatic. It's given to me in a giant IV bag and I probably won't notice any side effects until a few days after Day 0 (Tuesday). The Groundhog Day ritual will still continue as I keep reporting to the clinic every day for monitoring. There are even two days where I will be receiving post-transplant chemotherapy to suppress my own immune system, allowing my sister's bone marrow to take over. Otherwise...it's just waiting and watching to see if the transplant works. I pray it does as it's the only thing left for me.

Anyway...that's honestly about all that is new on my end. I would like to take this time though to thank all the people in my life who have not only supported me but have willingly offered to be there for me during this difficult time. Special thanks to my mom who still stood by me even though I was at my lowest on Tuesday, and an extra special thanks to my current caregiver, Linda who has taken extra good care of me and put up with my crazy randomness this past week. Haha! I love you all and thank you from the bottom of my heart!!!

The Beginning of the End

Hello from Baltimore!!! 

I've finally made it to the start of transplant!! On Monday I packed the car with all my comfy clothes, activities, and even my ukulele for the long stay at Johns Hopkins. My mom and I stayed in a hotel the first night since I had to wake up super early for my first procedure, and I couldn't check into my apartment until Wednesday. I took advantage of the hotel's pool and did a few laps since I was told I wouldn't be able to swim for several months. My mother also treated me out to a restaurant that serves all-you-can-eat meat since I was told any meat that I have for the rest of the treatment needs to be cooked well done (I'm not a fan of that). It was the calm before the storm and I definitely enjoyed every minute of it.

Tuesday rolled around and besides radiation day, it was a day I was absolutely dreading. I went to Johns Hopkins early in the morning to get a Hickman catheter placed in my chest. I was nervous because 2 years ago when I had my chemo port implanted, they had me on twilight sedation...and for some reason, it didn't work which made the procedure incredibly traumatic. So I was very tense going into this one especially since this catheter was going to be partially sticking out, and cosmetically, I didn't like the fact that I would be carving up my body even more.

Thankfully, the doctor who was overseeing the procedure was absolutely wonderful. Not only was he from the same area I'm from (which is out in the middle of nowhere), but he seemed to really understand what I was going through. He talked me through everything and was incredibly reassuring. And sure enough, the moment the twilight sedation hit me, I was out. Slept like a baby...and I was so incredibly happy to wake up to the doctor saying "it's all done!" that I had tears of joy. Not only did I not realize anything going on but they decided to do it on the same side at my chemo port meaning fewer scars. I'd tell you what happened after that but I honestly have no recollection of anything that happened besides waking up in bed at the hotel again. Crazy.

Anyway, the following day was Wednesday...moving day!!! More importantly CHEMO DAY!!!! At around noon I checked into my first appointment in the transplant clinic (known as the IPOP...no idea what that stands for yet). I quickly learned to appreciate this catheter since they do all the bloodwork and chemo through it. I will never be pinched again while I have it in...thank goodness, my veins can take a rest. Once the bloodwork came back all clear they hung up my chemo bags on the IV and got started. The chemo was quite honestly so much easier than I thought it would be. I mean...I've already done several over the last couple years so I'm kind of used to it by now. I even felt totally fine when I was finished and walked out of there proud.

It wasn't until after chemo that the whirlwind of events happened. First I had to check into my apartment. After figuring out the parking and filling out the paperwork, my mom, my amazing caregiver Linda, and I drove down the street to the closest supermarket to pick up some food to stock the kitchen. It was really confusing figuring out what to buy since I may have an appetite now but later on I know I probably won't. After zooming up and down the aisles we finally purchased some meals and went back to unload EVERYTHING out of the car. I lost track how many trips I made...and it didn't help that I'm on the top floor either haha!

Needless to say, I slept very soundly last night. Today was Chemo Day 2 out of 5 and all went well again. Chemo lasts for about 2.5 hours so it's not too bad. Here's hoping the rest of the week goes as smoothly. Transplant day is this coming up Tuesday and I can't wait!

Yes...I really miss my pug.