Counts are Holding Strong!

I am definitely back on the feel-good bandwagon.  I had a crazy busy weekend with little sleep and lots of fun... and I'm still feeling good.  Yay!  It was nice being surrounded by friends all weekend and feeling well.  My only current complaint is food… My stomach has been unhappy for over a week with most food unless it's pretty bland, so for lunch right now I'm enjoying a smoothie :)  And for dinner I’m thinking a milk shake… yes, I lead a very rough life, haha!

I learned last week (and I should have expected this due to the fact that my white counts are high maintenance), my oncologist is interested in weekly blood tests again. This way she can tell exactly when they start to drop too low and when to start my nupogen shots. They only dropped slightly last week so hopefully it'll be another week until I have to start... I go back tomorrow to find out for sure, eek!

At the hospital last week I was wondering about what I should blog about until my attention was drawn to a woman in the waiting room. She was dressed cute (not in pj clothes like most who receive treatment) with bright colors, trying her best to look her best… because she obviously wasn't feeling it.  When her name was called, she got up out of her chair to walk back to treatment, but suddenly she looked quite faint. It was obvious she was in pain and struggling. The nurse rushed out to hold her arm and help her walk. She motioned for another nurse to grab a wheel chair quickly.  This woman was trying so hard to not make a scene, but it was very noticeable that she was really sick.  The nurses are wonderful, not making a big deal about her struggles and helped the woman keep as much dignity as possible as they wheeled her back for chemo.  To be polite, nobody in the waiting room watched the scene... but everyone knew what happened.  We've all been there.  For a cancer patient, it's embarrassing to show weakness.  It brought back many memories for me of being wheeled in and out of the hospital because I was too weak to walk.  I see myself in so many of the patients today, trying to push through the pain.  I had too many similar instances when I moved back to St. Louis from college.  I would be in for routine labs and meeting with my doc in between treatments, hoping no one could tell how much pain I was in.  But before I could even get out of the lab, the techs caught on and would send me over to the treatment area to treat whatever the issue was for the day (platelet transfusion, blood transfusion, fluid hydration, etc.).  My assumption is that the woman from last week did not receive her chemo treatment.  Her body was noticeably too weak and she needed more time to heal before her body received more chemo.  

As I left Siteman that day I reflected about the woman’s struggles and how far I have come since those days.  I’m proud of myself for pushing through.  But I am also most grateful that I do not have physical pain and suffering this time around like the other patients I see.  Yes, I have side effect annoyances, but there is not much in life that one can compare to high-dose chemo.  It’s hell.  It’s the most intense physical battle… trying to stay strong and positive while your body is slowly shutting down… not easy.  This time I’m not physically suffering (well, except for that random fractured rib last month, ha!).  This time it’s definitely a mental battle.  It’s not easy to adjust to the fact that I will have cancer for life, but I’m not suffering from pain – this is livable.  I can do this.  Observing the woman last week put it into perspective for me – what she’s going through isn’t tolerable.  But what I am experiencing is… it’s time to suck it up and be the bigger person in this situation – it’s time to accept this life change.  I will not let cancer win - physically or mentally!!

Back to School

Tomorrow is the official first day of school.  Let's hope this energy boost continues!  I'm feeling great and ready to take on my kiddos :).

In honor of the big day, I want to share something that occurred last week and warmed my heart... 

One of my little guys wasn't feeling well on Friday.  No idea what was wrong, he just simply had a fever.  Another teacher was consoling him (far away from me and my low counts!) while he cried on her shoulder from feeling icky.  One of my girls was sitting with me watching the other teacher help the poor guy.  The little girl, age four, says, "Why is he crying?"  My response was, "He has a fever.  He doesn't have a cold or a tummy ache.... he just doesn't feel well... and we don't know why.  When we don't know what exactly is wrong, some people call it "under the weather".  The little girl continued to watch the boy, paused for a moment, then looked at me and smiled, "Well I'm on TOP of the weather because I feel good!"  

It was one of those moments when everything around me disappeared and my attention was completely wrapped around her words.  Typically when a child sees a peer receiving special attention, he or she will try to find a way to receive his or her own special attention.  But her optimism on life is remarkable... and inspires me to continue to only look for the positive as each day passes.


Here's to being on top of the weather :)

Feeling Goooood!

I've had a high-energy kind of day!  No real rhyme or reason, just feeling good!  I've had energy for days upon days now and I am still finding myself surprised at how good I feel!  My day started off lazy in bed which is the BEST way to start the day.  I had brunch with one of my favorite people, Curt, and spent the rest of the day playing with clothes (ok, more like working) at BLUSH where two more favorites in my life stopped by, the Crofts!  I've been spoiled today with love and affection, maybe that's why my energy is only growing?!  I actually caught myself several times dancing around the store... by myself.... for no reason whatsoever, I simply had TOO much energy!  Crazy!  I can get the hang of this :).

Life back on the pill....
Still feeling about the same!  My upset tummy I'm afraid might never go away... but I'm adjusting.  And learning what types of food work well and which ones absolutely do not!  (Today's lesson: leftover quesadillas from Amigos - happy tummy!)  Tiny bit of nausea, random rashes, and vertigo have returned, but overall, no big complaints :)
 
I think what has added to this energy boost is a much more calm mind.  I'm mostly caught up at school which is a HUGE help.  We officially start on Wednesday, so I have tomorrow and Tuesday off - YIPPIE!!  I am going to soak in some major R&R.  I think I hear a massage calling my name :).  Also this week I have finally stopped freaking out that these tumors aren't leaving any time soon.  Still not happy about it, but I am letting it digest.  It really doesn't affect me day-to-day, but when I think about my future... relationships, children, finances... I'm still quite annoyed.  I know there is a light at the end of the tunnel... although it's pretty dim right now... but I know it's there! 


Here's to another high-energy week!  I am in love with feeling good.  It's been awhile :)

Back on the Pill!

It was a quiet day at the Siteman Center today.  The lab techs were hanging around in conversation while my receptionist was enjoy People magazine.  Most of the oncologists are out of the office this week.  Krissy happens to be out of town as well, so my good friend Sarah King  stepped up to the plate this week.  Patients were not scheduled today for appointments because my doctor is out of town.  But since my counts were too low last week I needed to revisit one week later (today) and discuss dosage options with my oncologist's resident and nurse coordinator.  It was nice not seeing them rushed - they were able to relax and stay for a bit and chit chat about more than my irregular diet patterns. 

The good news.... my neutrophil counts are back up to 1500!  So back to the pill!  Not so good news.... They expect my counts to drop below 1000 (minimum amount to stay on the trial) every time from here on out.  There is a drug to help keep this from occurring - Neupogen.  Typically patients take Neupogen for several days before treatment to boost their white blood counts.  I was on this drug my first time on chemo.  Since I do not have weekly/bi-weekly/etc. treatments and I take my pill daily, I will be taking this for 3-4 days up until my blood tests.  This will ensure that I am above 1000 and can stay on the trial.  Why is this bad news?  Well, it's not necessarily bad, it's VERY good news that I'm able to stay on the pill... this drug is just not enjoyable... it's administered by a shot.  Yuck.  I can have my blood drawn, receive IVs, and have shots administered without even flinching these days.  But this is a shot that I have to give myself!  I've done it before, but it's not easiest to give to myself.  I've administered my own hormone shots in years past, but those were a bit more simple.  Neupogen kinda burns when it goes in and needs to be pushed slowly.  SO, I'm going to give it a try and see if I'm okay with doing it myself.  If not.... looks like I'll be paying extra to have one of the nurses at the lab do it for me.  Unless any of you are pros at giving shots and are interested in the job?!  Haha!  The main reason I am not looking forward to the drug is because it causes major lower back pain.  How the drug works is it stimulates the growth of white stem cells in my bone marrow, increasing the cells to divide and conquer!  But when bone marrow is working double duty, I can feel it.  Bone and joint discomfort is expected, especially in my lower back, where a good amount of stem cells are produced.  Usually by the third or fourth day I'm in so much pain sitting is unbearable (I used a big yoga ball in college when I was on it before as my chair - looks like I might be investing in a new one!).  I will return to the lab in 3 weeks to have my blood tested and my doctor will decide how much of the Neupogen I will receive.  Then I will start the shots just days before I start my 6th cycle of the pill and meet with my doc.  Overall, I am very happy that Neupogen exists.  It is allowing me to stay on the trial which is keeping my tumors from growing - this is very very very good.  Time to suck it up again - it's only a shot... it could be (and has been) worse!

The rest of the appointment was calm and relaxing as we discussed my kiddos at school, their recent vacations, own children, and how pleased we ALL are about my current energy level and overall health.  That antibiotic worked wonders!!  There was a lot of discussion about the digestive issues this drug has caused on my body... and I will absolutely not get too much into this... But for the first 3 days off of the pill I wasn't able to keep much of any food down.  I wasn't feeling sick what-so-ever, but it was like clockwork after eating.  So I'm trying a new med and hopefully that will smooth things out (although I think my body is starting to adjust on its own already, phew).  And yet I still somehow managed to gain another 1.5lbs this week?!  Haha!

Thanks again for your amazing kind words and encouragement.  It's going to be several more months until they come up with a dosage of my pill that both my tumors and I can agree on.  So until then, I will focus on my amazing friendships and continue to live my days to the fullest :)

Life off the Pill

Today marks day 6 off of the pill.  I see my doctor (actually, she's out of town.  I see her Fellow and Nurse Coordinator) tomorrow.  I will have my blood tested and hopefully have a higher neutrofil count and will once again be eligible for the trial.  I'm not really sure if I've noticed much of a difference.  I have TONS more energy and I feel like I'm running a mile a minute.  Possibly because school starts in a week and I'm already working full time with the kids while trying to get set up for the year (yes, sounds strange - for pre-k we go year round.  This week the elementary teachers' kids return, so while I'm trying to prep for my year that technically starts next week, I'm actually kinda-sorta starting this week with most of the kids...).  So trying to prep before I start even though I've already started brings on a lot of anxiety/energy.  I've been trying to keep myself mellow and my nerves calm by leaving all school work at school and keeping myself busy in the evenings with a social agenda, but at the end of the day I'm still wired!  Chemo withdrawals?!  Haha!  When school calms down I'm sure I'll calm down.  

I've finally adjusted to the fact that these tumors are sticking around.  Nope, don't like it one bit.  But it is what it is, so time to suck it up and deal with the facts.  Yes, finally a week later I've accepted the news and I'm moving along nicely.  Thank you all for the encouragement and support - it is the reason I am able to move forward without worries :) 

Still Letting it all Soak in...

So it looks like I'm going to have cancer for longer than expected... still haven't grasped onto that one yet!  I am SO extremely fortunate that this trial is available for me and keeping my tumors at a standstill.  It's crazy to think that the cancer has lived inside of me this whole time (past 8 years) and is not interested in leaving... am I really that exciting?!  I still say this news sucks, and I really really really don't want to live with it (mainly the side effects!), but it's time for me to suck it up and move on.  It's not a death sentence, just a slight nuisance that will be hanging around for.... um, forever?  Ug, let's hope not, that sounds like a long time!  But as I've reflected the past few days (and taken this weekend away from the world), I'm realizing there is nothing I can do but accept this.  Sounds easy, I'm usually pretty good at it... but it's been harder this time.  I'm still not 100% okay with the results, but getting closer.  Like I've said before, I don't dwell long; it's too exhausting!

I am completely blown away by all of the calls, messages, and emails from friends over the past few days.  Some not even close friends, more like acquaintances or friends of friends.  Either way, I am completely touched.  And maybe I shouldn't say blown away, I think I might be over using that by now... There have been so many who have reached out to me, I am most grateful and thankful for such wonderful people in my world.  Nope, your kind words and yummy food will not get rid of my cancer or help these annoying side effects; but they ALWAYS put a smile on my face.  I cannot thank everyone enough for their support - it is truly helping :)

I got a card in the mail this week from my friend Katie, my longest friendship of over 20 years.  We use to be neighbors growing up until she married my other neighbor and they moved states away to Colorado.  Katie has been sending care packages, flowers, cards, cds, tums, and pictures of her beautiful baby, Lucy (my current Facebook profile pic) to help keep me going ever since day one in 2003.  Katie and her husband, Bryan, have even done Team-in-Training with the Lukemia & Lymphoma Society to raise money in my honor.  This week, Katie simply sent me a card.  The outside said, "In my perfect world, we would be neighbors..." and I didn't even have to read the inside before the tears came.  She can't be here, but her love is always here.  She can't fix my cancer, but her tiny effort and tremendous love are helping slowly fix my mindset.  She was by my side when my mom passed as well as in my hospital bed watching movies with me during my transplant.  Even my lifelong friend cannot fix any of this... but she sure knows how to make it easier. 

As most of you know, my friends are my family.  My actual family is tiny-tiny which is one of the many reasons my sister and I stick together so closely.  Being able to count my immediate and extended family on one hand is why I cherish my friendships so very much.

I am absolutely blessed in life to have two close groups of girlfriends in my life.  I also have the Carman Kids - my neighborhood friends who I grew up with on the sewer (who Krissy and I still spend our holidays with).  I have worked endless jobs in the last 10 years providing me with friendships that have lasted longer than the jobs, as well as dozens more through friends of friends, parents of friends, neighbors of friends, etc.  I am truly blessed.  This is why I started my cancer blog from the beginning.  I was already mentally exhausted from wrapping my head around another relapse, that keeping my friends in the loop became tiring as well.  I feel slightly lame that I blog, and guilty I don't have personal conversations about my weekly blood counts and health status.  Considering that this is something that I will be living with for much longer than hoped, blogging about it has become a wonderful medicine in itself.  I find it as an outlet to vent and keep those who I care about in the loop.


I was recently playing around with Blogger, learning about the different things I can add to my page.  Yes, very dorky.  I was able to read stats about who and how my blog is visited.  No, it does not provide actual names or how many times someone visits.  But I found out my page has been visited over 1,800 times.  SERIOUSLY?!  I only started this blog 5 months ago... I figured it was a mistake.  I further looked into it...  I am being followed by 8 other countries, while Internet Explorer is used 31% of the times and Foxfire 29%.  Haha, not that you care one bit about that aspect- but how crazy!  I am truly touched and feel honored that so many out there care and stay up to date.  I thank you all so very very much.  I've said it many times before, but there's no way I could get through this headache if it wasn't for you.  If Katie can't fix my cancer, I don't expect it out of you.  But you sure do know how to put a smile on my face and that is appreciated more than you realize.  


Thank you :)

Not what I wanted, but still not bad....

I went into today's appointment knowing I wasn't going to get what I want (read yesterday's post).  I'm not a big dweller in life - if there's a problem, I fix it.  If it cannot be resolved, I move on.  Unfortunately, I have a problem that I am learning might never be resolved.  

When I stated this trial four months ago, I was told that the goal was to "maintain growth."  Well I surprised everyone when after two months on treatment and my tumors began to shrink!  It was unexpected, and graciously appreciated!   We celebrated and hoped for continued success.  


I learned today that my tumors are at a standstill.  They are not growing, they are not shrinking.  My oncologist is happy with this status - this is what she expected from day one.  I on the other hand... still letting it sink in.


It's hard to think that this treatment is something I could be on for the rest of my life.  I have no where near adjusted to all of the side effects.  My doctor said that she was wanting to lower my dosage after 6 months to see if this is something I can stay on permanently and still live a decent lifestyle.  As of right now I am on the highest dosage.  Her goal is to lower the dosage enough eventually over time that the tumors continue to stay stable, and I can handle the side effects.  But then we learned today that the dosage decrease might actually happen sooner than later... 

I have my blood counts tested every time I visit the doctor.  We discovered today that my white blood counts have bottomed out.  They have dropped low enough that I am not eligible for the trial.  I'm am going off of treatment for a week in hopes to raise my white blood counts.  If by next week they are still too low, they will consider lowering the dosage for sure.  I am very disappointed that I am having to leave the trial for a week, but also very excited to take a mini vacay from my nightly pill!  Maybe I'll feel some normalcy?!  Then again, it took me almost a year after treatment the last time before I felt normal again (although that included a year of chemo, then transplant, and radiation!).

So health wise, I'm not doing so bad.  Of course I wish they would just go away, that would be amazing, but it's time to start adjusting that this is something I might be living with for much longer than I had anticipated.  It's not the end of the world, just need to adjust it into my world.


But that wasn't the only news today... My doctor also discovered a new area in my chest - it's small and has very mild activity.  She believes it is just remains from the respiratory infection I recently recovered from.  It's in a new area, not the area affected before so she does not believe it's cancer.  And considering that my cases of pneumonia have been so severe it was a toss up if the images in my chest were from infection or tumors, that she is sticking with infection on this one.  She's not worried about it, so I'm not going to even give it another thought (until my next scan to make sure it's gone!). 

The most shocking news of the day is something we have never discussed, nor did I know it was even possible!  Last month I was experiencing severe muscle pain, primarily in my chest and lower back.  I still feel it in my arms and legs, and only slightly in my chest (it doesn't hurt nearly as bad though).  The muscle pain is a side effect, but simply feels like I worked out way too hard.  It was the muscles in my chest that became so painful I was on painkillers.  Turns out it wasn't muscle pain.... my cough became so intense during my 2-3 month respiratory infection, I was coughing so hard that I fractured my own rib.  Yes, fractured a rib from COUGHING.  Now I don't feel like such a baby that I was complaining from muscle pain - I'm actually quite a hoss who still worked everyday and pushed through the pain!

So here's to a recovering rib, increasing white blood cells, and a new perspective on living with cancer.  I see the doc again next week, hopefully back on the trial!

The Day Before Phone Call....

This is how it goes with "scans" (I know, I'm repeating myself here...)

Monday:  PET & CT scans
Tuesday: Sit around and wait while my doc gets the results
Wednesday:  Meet with my doc about the results

Tuesday is probably the most annoying day.  Monday I'm usually spoiled rotten during the scans and I'm okay with others knowing the fate of my health (also, read yesterday's post - not a bad day at all!).  Wednesday, I'm filled with butterflies, knowing I will have the results in just hours.  Tuesday.... Tuesday just sucks.  And today was one of them!

In between scans and the doctor's appointment, I ONLY receive a phone call with news if it's not what we were hoping for.  (Like when I was informed I had relapsed - occurred on a Tuesday.  Last time when my tumors were shrinking, there was no phone call, they love sharing good news in person :).   So, Tuesdays suck.

Today wasn't a horrible Tuesday, but not what I hoped for.  I was playing with the kiddos at school when the phone call came.  I was in such a wonderful moment with the children, I chose not to answer and let it go to voicemail.  I continued my fun with the kids until I found a moment strong enough to listen to the message.  Possibly it was saying they were pushing my appointment back an hour?  Haha, I'm pretty good at lying to myself!

Turns out, my tumors are "stable".  I didn't call back to find out anymore.  Details will come tomorrow.  I know enough for now.  It's not what I wanted.  I wanted more shrinking.  It wasn't bad news (at least they aren't growing or duplicating!!) but it wasn't what I wanted.  I think last time I was completely overwhelmed with shock and joy that I was slightly expecting the same for round two.

I listened to the voicemail once again, just to make sure I heard it correctly.  I hung up the phone and looked up to see a child who had his arms wide open waiting for me.  I fought back any tears from disappointment and went to him.  He has no idea.  He barely remembers me being gone for a week last spring and returning with an "ouchie" that still is visible on my neck.  But he knew at that point I needed a hug in my life; not because I showed sadness, but because, just like I know when he needs a hug during his day, he knew I needed one in mine.  And all frustration and disappointment was forgotten. 

This chemo might be my life saver, who knows what drug will finally come around to rid of this cancer in my body.  But I know 100% for sure that my children are better than any chemo I have ever received (and that includes their "side effects", too!! :)

PET Scan, Round Two

Wrapping up four months on the chemo pill... Wow!  I had my bi-monthly scan this morning to monitor the tumors.  Cross your fingers for more shrinking!!

I like being the first appointment for the day - I HATE having to fast during the middle of the day.  I woke up at 5:21, one minute after my alarm was SUPPOSE to go off.  I rechecked it umpteen times, still confused why it did not go off.  Apparently my subconscious was aware of the issue and woke me up on time - thank goodness!  

I was greeted with familiar faces upon my arrival, and my check-in process to Nuclear Medicine has become a breeze.  I've always been a familiar face to them over the years, but now I've just become a regular.  Not exactly the coolest place to be a regular at, but it's comforting to be greeted by those I know.  

My radiology tech I have been a patient with since I first started treatment at Barnes 7 years ago.  She didn't recognize me with my long hair at first!  I also haven't seen her the past few times I've been scanned so it was nice to chit chat with her.  She was disappointed in my veins - I've always had excellent veins for IVs - but it took her two attempts and both arms to finally get a draw back of blood.  Luckily for me, she is wonderful and it was absolutely pain free :).  After I was settled in my room with IV and gross chemical-water drink, I was cozy under two warm blankets and ready to pass out for the hour.  I turned on the fish (best tv program ever) and began to snooze.

With my experience from living in a hospital, sleep is IMPOSSIBLE unless you are heavily sedated.  I was dozing in and out when I felt the presence of someone at my door.  Tall, dark, and handsome (a new tech) was passing by and spotted me sleeping (it's not everyday they see patients in their 20s AND with hair in that department).  I started to laugh when I saw him, feeling caught watching the fish on tv.  He gave me a hard time for being one of the few patients who can chug down the gross chemical-water (practice makes perfect), then he and his smile was on his way.  

Dozing off again... woke up to find a new tall, dirty blonde, and handsome in his doctor coat entering my room.  It's routine to meet with a doc about my current health, injuries, and anything he should know before reading my tests.  I explained my respiratory annoyance, but I'm pretty sure I left out some details as I became lost in his green eyes and the sweetness of his demeanor.  


After my last attempt to snooze, it was time for me to be scanned in the tube and then on my way to school.  I don't know who or what, but someone was looking over me today, providing me with one of calmest testing mornings I've had in a while :)