What is chemo? Mel's Treatment Diary

It's funny when I tell people now that I'm back on the "real" chemo.  I'm pretty sure only 30% of people I talk with have a real understanding about chemotherapy.  It's not just one drug.  Chemo consists of over 100 drugs, and every drug has it's own name.  I have been around the block enough to have received about a dozen of them.  I am currently on just one chemo drug.  I am back with the majority of patients receiving chemo through an IV.  Some chemos are simply administered through a shot or pill, which I was lucky enough to try out for 9 months.  Some chemos need to administered more specifically into the body including a spinal tap (ouch!).  I've included the last 8 years of my chemo history to give you a bit of understanding about how chemo works, and how it affected me directly.  This is insanely long, so also simply check out the links I provided throughout and at the end of this for more info!

Here's a bit of my chemo hisotry:

When a patient is first diagnosed with Hodgkin's Lymphoma, the protocol is the chemo cocktail ABVD.  Chemo cocktail?  Right up my alley!  Most (if not all) chemos are abbreviated because their names are close to impossible to pronounce let alone try to remember!  ABVD stands for adriamycin, bleomycin, vinblastine, dacarbazine.  (And if you are at all familiar with adriamycin, all I can say is UG!)  BVD was infused from their individual bags over several hours.  The adriamycin was administered as a push in a giant syringe which took only minutes.  The iv machine could do it, but I had the nurses push it so I could receive breaks from losing my cookies!  (just thinking about that giant red tube makes me feel nauseous!)  I was on ABVD for 8 months receiving treatment every other week.  That was back in 2004.  Total treatment time for all 4 drugs was an afternoon.  Not amazing, but not bad at all.  As for side effects, I lost my hair and was completely nauseous.  Although I found a quick treatment for my nausea (I did not care for the nausea meds provided by my doc) - I indulged in food.  Food was my best friend helping me to feel better physically and mentally.  I gained about 30 pounds by the end of the ABVD treatment.  The other big side effect was fatigue.  I slept for about 48 hours straight after every treatment; I called it my chemo hangover.  Think about your worst case of the stomach flu on top of your worst hangover... that's a chemo hangover.  It only lasted days, and by the end of the week I was energized enough just to do it all over again.  I was permitted a handicap sign for my car so I could park as close to every one of my classes on campus - the fatigue was pretty bad.  I look back at how strong I was not letting cancer take over my life as a college student - damn I impress myself! 

My tumors did shrink during the treatment as expected, but unfortunately they were stronger and started to grow again towards the end of the 8 month protocol.  Hodgkin's Lymphoma patients have over a 90% success rate with the ABVD so this was surprising and disapointing considering my age (21).  The amount of treatments that every patient receives is different depending upon the stage of the cancer.  I was only in stage 2 at the time.  Since the ABVD failed at putting me into remission I had to move back to St. Louis for more in-depth treatment.

Next on the chemo list: ICE.  Sounds pretty cool, but totally deceiving!  Ifosfamide, carboplatin, and etoposide had to be administered in the hospital for a 3 day span.  The chemo itself wasn't so bad, but the bags took FOREVER!  I was on chemo for about 60 hours straight - that's a long time to be attached to an iv pole.  This was administered 3 times over a 9 week span (Fall 2004).  

Now this is where I learned that chemos are used differently.  The point of ABVD was to rid of my cancer, although it did not work.  The ICE treatment is not used to rid of tumors, but to prep the cancer cells for a total clean out that will soon occur with high dose chemo (yes, it is much more scientific than that, but even if I wanted to, my chemo brain couldn't even begin to get into the technicalities of B-cells!).  I lived the cushy life as a cancer patient in the hospital for 3 days at a time.  I wasn't ever in pain or sick, just nauseous, so I stayed strong and let the whole world spoil me :)

I took a few weeks off after ICE and rested (and took many trips to Mizzou and SMS to visit friends when I was feeling better).  This allowed my body (and mental health!) to become stronger for what was about to occur: my trasnplant.

Now, the misconceptions about my stem cell transplant...  It is not a bone marrow transplant.  My cancer has not spread to my bone marrow (which was most recently tested last spring and is still clean!).  Although it is similar...  Stem cells are in your blood and are the creator for everything else in your body.  The reason for the transplant was to allow my body to recover from the high dose chemo.  High dose chemo is the queen bee of all chemos. Unfortunately, I do not have the memory or research of the exact drugs I was on at the time.  There were a handful of them and their doses were rather lethal.  But they were strong enough to kill my tumors so it was a risk we had to take.  I was admitted to the hospital for about a month for this all to take place.  It took about a week duration for the different drugs to be administered.  Every day I became weaker and weaker.  I then spent time being lifeless just laying in bed letting the chemo work it's job on the tumors.  The issue with chemo is that it cannot be controlled to only kill my cancer cells; it all kills all of the good cells as well.  While my tumors were dying, the rest of my body was slowly shutting down.  I do not remember much about the time in between the chemo and transplant, I believe I slept through most of the week.  It was painful and miserable, talk about a chemo hangover!  When enough time passed for the chemo to destroy the cancer but not my organs, it was time for the stem cell transplant. 

Weeks prior to this I harvested my own stem cells.  My blood was pulled from my body through one catheter (my port), sent through a giant machine that I referred to as Snuffelleupagus, and then returned to my body through a different catheter.  While my blood stopped through Snuffelleupagus, my stem cells were extracted and saved for my transplant.  And now it's time to brag... this process is referred to as pheresis.  Pheresis can take a couple days up to a couple weeks to get enough stem cells collected from your blood.  There is no rhyme or reason to it, but extracting stem cells from blood takes different amounts of time for every patient.  Determining my health factors, they figured about 3-5 days for me.  And yes, you are stuck hooked up to this machine ALL DAY.  Well, I made my way into the Barnes book of records - I completed pheresis in ONE DAY!  While the rest of the people my age were trying to ace their mid-terms, I was dominating pheresis :)  I do believe when I received the amazing news in my hospital room that night I jumped on my iv pole and began riding around shouting, "Pheresis ain't got nothing on me!"

Back to the transplant - After about a week of observation, it was time to replace my stem cells and let my body heal from the high dose chemo.  Stem cells are administered like a blood transfusion, but it doesn't take as long.  It made me sick and created yet another awful hangover, but within days my body began to regain strength and come back to life.  By the end of the month span I was out of the hospital and back in my own bed.  I had a home health nurse take care of me daily until I was ready to reenter the world about a month later!

Lastly on my trip down treatment lane, I followed up with radiation treatment.  I received it for about 30 minutes everyday for 30 days.  This occurred about 2 months after my transplant.  The radiation was aimed on my affected lymph nodes, preventing the from occurring once again.  Going into radiation, I was overweight.  Not horrible, but for being 5'4" 160lbs. is definitely over weight.  The radiation was directed to my chest where my lymph nodes/tumors had once been.  Radiation is like getting a bad sunburn, so my back and chest turned brown.  Also, my esophagus was affected from receiving a sun burn as well.  I was unable to swallow food by the halfway point of treatment because it was too painful.  My overweight body quickly became an unhealthy 115 lbs. due to starvation.

It took my body about a year to fully recover from all of the treatment.  It needed to regain nutrients and weight.  I was in remission and back in the real world.  Although follow-up scans never showed promising news.  My tumors grew primarily in my chest.  After all of the treatment was said and done, there was a tiny bit of "activity" in my chest.  It was not enough to be concerned about, but it grew about a hair's width every year so my oncologist kept a close eye on me.  I was in remission for over 6 years when I relapsed - the activity she had been watching finally grew significant amounts.   

Since I have already tried the ADVB treatment once ending with failure, it is not expected to work a second time.  Although a second transplant is still an option if my tumors do not respond to the chemos they are trying now.  When I was being treated in 2004 it was believed that the cancer was simply in my lymph nodes.  The doctors have learned from my relapse that the cancer is also in my blood.  The question I am asked most often, "Why don't they just remove the tumors?"  First, one of the tumors is in my lung - not easy to remove!  It's possible, but requires a lot of inpatient care.  It's dangerous and unnecessary since I am functioning so well with it in there.  The other one (possibly two) are just outside my lungs.  The actual tumors are not what is killing me.  The cancer cells in my blood can be carried anywhere to create tumors.  By watching my tumors shrink we know that the chemo is strong enough to kill the cancer cells in my blood as well.  IF the treatment they are trying right now does not work and we end up with another transplant, I will not be able to use my own stem cells - they are tainted with cancer.  Krissy will be the first one tested as a match.  And if she's not (cause really, what do we actually have in commom?! haha), then we'll hit up the donor list.  Then it'll be back to the hospital for the high dose chemo and transplant.  That is hopefully not going to be necessary!

Now that we know the lenalidomide pill did not work for the past 9 months since I have relapsed, I am on Brentuximab Vedotin.  It is an infusion, but luckily only a 30 minute drip.  The only big reactions I am having thus far is intolerance to some foods and bits of feeling lethargic.  I gained 15 pounds on Lenalidomide, mainly because I stopped any physical activity - I'm just too pooped!  I should have a bit more energy and am being forced to eat very healthy with BV so I'm hoping to get my body back into shape.  I have noticed a tiny bit of hair thinning, but luckily I'm not expected to lose my hair!

Since I have relapsed I have been very fortunate to have simple side effects.  The statistics are not looking so hot for where I am in the Hodgkin's process, but this new drug, BV, is providing some promising results.  

For more info, check out the American Cancer Society.  They are after all the Official Sponsor of More Birthdays.  Pretty damn cool if you ask me :)

I love this sight too .  Learn more about my specific cancer from MacMillan Cancer Support. 

Healthy Holidays

It has been a very BUSY holiday break so far and it couldn't make me happier!  I have a full 2 weeks off from school with one down and one still to go!  I jam-packed my first week with Christmas parties, nightly outings, dinners, happy hours, couch cuddling, and of course Christmas with the fam.  Although I think Krissy got her fill of me on Christmas, haha!  Christmas Eve included me "stopping by" Ronna's which turned into an almost 4 hour visit.  At last night's gathering with close girlfriends we toasted Michelle's engagement to Pete.  Tonight I will do it all over again with different girlfriends toasting Toni and Paul.  I visited my own city including Imos and the Arch with Lisa and her new bf, Tim.  I have had lots of Amy and Katie time including dinner, my favorite Robust, and a good 'ol BAM party.  Christmas was also spent with my second family, the Neighborhood friends, where the singles beat the married, a Nerf war erupted, and we laughed until we cried (haha!).  JRob and I have found ourselves living up life all around town into the wee hours of the night taking pics with Santa on the street.  It has been beyond busy and more fun than I could have ever asked for.  Here I am, on day 7, and finally having a morning to myself.  I still have a day full of my Maryville bff, Kelly in store, as well as Baby Lucy love, a lego extravaganza, a sister tea-date (as much as I annoy her, she can't hide for long!), Toni time, NYE, and hopefully a day all to myself :).  

I have found myself spending more time than usual reflecting on my enjoyable adventures so far this break.  I have been healthy which is the most important and most exciting of it all.  Still a bit of the cold, but nothing bad at all!  My cough has had me lying to countless people that it's just a cold, but then again, most of the people I have been with know it's not just a cold.  They just get me water :). 

My favorite part about this past week is I haven't been thinking about my diagnosis.  It's starting to become a part of me, time is finally letting it soak in.  The most recent news is a bit scary, but even more reason not to focus on it and enjoy what amazing people I have in my life. 

I still have a whole entire week of this amazingness!  (and yes, that word was for you, Kristin Jane :)

Increase in Chemotherapy = Increase in Retail Therapy!

A very good and old friend of mine, who I have mentioned before, decided he needed a visitor while he was wrapping up an out of town deposition in Minneapolis this past weekend.  So after a bit of arguing back and forth via text (because how many times can I have friends fly me around until I say enough?!), I was pleasantly surprised to open my email a couple weeks ago to discover airline tickets waiting to whisk me away to Mall of America for the weekend!  I knew it was going to be a week of scans and doc appointments for me, and Curt just received an honorable recgonization at his firm, so this was going to be a weekend of celebration for the both of us (well, with the hope that I was receiving good news from the doc).  When I arrived in Minni and didn't come bounding off of the plane shouting great news of shrinking tumors, he had a feeling I wasn't arriving with good news - but we left it unsaid, not to get in the way of my first meeting with Mall of America. 

The day was filled with frivolous buying, awing over ginormous lego sculptors, feeling dizzy just watching the children flip in circles on the roller coasters, indulging in delicious food, and learning the map so well that I was able to provide assistance to the tourists.  When my feet and the Visa became tired, we ventured over to the W Hotel where I officially decided I was living the life of somebody else for the weekend.  I am not one to shop around the biggest mall in America as if I own it or spend my weekend in a swanky hotel for the fun of it.  I rent a room from my friend and work a second job at a boutique so I do not feel guilty spending money on myself instead of Barnes.  From the moment I landed to the moment we sat down at dinner, I felt like someone else... and it felt amazing.

After our MOA takeover, I hung out in my room for awhile sitting in the windowsill gazing over the gorgeous city, reflecting on the past 48 hours.  My cancer is growing.  I have NO idea how to handle this news.  I immediately want to cry.  But I'm so use to receiving upsetting news, I'm really good and just laughing it off and hoping for the best.  My emotions are like a roller coaster.  I can be so strong and optimistic, and then I'm lost in my thoughts about the future, finances, loss of freedom, side effects, fatigue, insurance, relationships, and the list goes on.  I can't just say I'm on a pill anymore... I'm on real chemo now. 

Curt and I roamed the streets and shops for a bit - including the skyway (the best idea EVER in a freezing cold city) - and ended up at an adorable restaurant where our table was soon filled with a delicious meal that neither of us could finish.  It was a postcard perfect night.  Giant snow flakes were falling outside the window, the staff was absolutely enjoyable, the atmosphere was cheerful with holiday decorations... and I was still pretending to be someone else.  But it was time.  Time to face the facts.  It was this very moment I was looking forward to most about the trip, being able to let it all out. 

I hadn't sat down to reflect on this recent news with anyone yet, so this trip couldn't have come at a better time.  Besides helping me get a B in high school chem and causing a ruckus at Healthquarters, Curt has always been there to lend an ear and thoughtful advice when I find myself lost in life (which has happened all too many times as a result from losing my mom and being diagnosed myself).  I began with the facts and ended with the hope slipping through my fingers.  (Thank goodness he felt the need to order us 8 plates of food because it took us that long to get through it all!!)

I finally admitted, to him and myself, that for the first time in eight years I am realizing that I might not beat this.  I keep my head pretty damn high and do not dwell on the fact that my tumors are stronger than all of the chemos they have tried.  And I haven't stopped being optimistic and believing that there will be an end - an end that involves me WINNING.  People always say, stay strong and you will beat this.  Well I am being strong!!  I have no control over the tumor growth.  So why must they keep growing?!

I vented about the fact that my friends are always going out of their way for me (including him).  I'm being spoiled.  When it's to the point where I find myself needing to ask others for help - they always help.  But they also help even when I don't ask nor need it!  My sister is carrying the weight of her life and now mine on her shoulders.  People are only giving more and more to me and I cannot keep up with repaying the favor.  It's overwhelming to be given so much attention and help.  I feel entirely selfish and don't know how to handle other people taking care of me for much longer.  And it's not that I do not appreciate it - I honestly would be lost in life without the help from friends.  But I feel so bad that they are always taking care of me.  Then the best line of the whole entire weekend occurred right then and there, "Melrose, you are not being selfish, you're being stupid."  I think I laughed until tears built up.  It was exactly what I needed to hear.  He helped me remove myself from my own shoes and look at it from the outside in.  Looking at my situation, I understand where others are coming from.  I would do the exact same for anyone one of my friends.  Stressing about other people wanting to be there for me is absolutely stupid to stress about.  It's not easy always accepting help, but I need to remember those who love me will be by my side, even when I say I'm fine, because that's what friends do.  I am so lucky in life to have such amazing friends.

I also came to the biggest realization of my cancer career that night.  I am constantly "running away" from my cancer, pretending to be someone I'm not.  I am quick to hide my cough as allergies or a cold when in reality it's because there is a tumor growing in my lung.  It feels so good to not look like I have a terminal illness.  But it also makes it that much easier for me to lie to myself.  Is it really being positive when I brush off my diagnosis as not a big deal?  I'm quick to talk it down because the chemo I went through before was more intense.  If I don't look that sick, then I'm really not that sick, right?  It makes it that much easier to pretend to be someone else.  But when I get home, the truth is there waiting for me.  As well as the anger, frustration, and jealousy.

I am often praised for my good spirit.  But is it really considered being in good spirits when I'm running away?  Well Curt brought it to my attention that I might feel like I'm running away, but it's not actually considered pretending - it's being a fighter.  I'm focusing on what makes me happy in life.  I put my energy in the positive, not the negative.  I don't sit around in bed and cry because I have cancer, I get off my ass and live life (well, when I'm not sick).  In actuality, I'm not running, I'm loving living and not letting cancer become who I am.  Last time, I knew there was an end in sight, so it was easier to let the cancer be in the spotlight, then let it end.  This time, the end isn't quite clear, so separating who I am from who the cancer is has become a bit more challenging.  But I like fighting, it's much more fun living life and being confused about how to allow everyday changes occur than it is to be moping in bed about the changes. 

I felt recharged when we left the restaurant.  As we walked through the Christmas snow globe of downtown, I was ready to once again own the fact that I have cancer.  I'm not entirely happy with the fact, and that's a battle in itself - being okay with something so ANNOYING in life.  But I'm a fighter, I am learning more and more everyday about how to deal with it.  Some days aren't hard at all.  But some days are and I need to learn that it is okay.  When the going gets tough, like it did this week, the tough goes to Mall of America with Curt.

This cancer may or may not win the battle with my body, but it will never win over my soul.  I will be the strongest fighter because although I'm not selfish with receiving help from friends, I am selfish about life and I want to indulge in every opportunity that knocks on my door... or just appears in my inbox.

Brentuximab Vedotin... Try saying that 5 times fast.

The new chemo I am on is called Brentuximab vedotin.  Or simply Adcetris.  Your choice.  Definitely not as fun to say as lenalidomide, but I don't mind one bit as long as it works!

This drug was recently approved by the FDA in August and has great success rates with Hodgkin's patients like myself.  Yay for high success rates, boo for having to pay for it (the chemo pill I was on was not FDA approved yet so the drug company could not charge me while I was in a clinical trial serving as their guinea pig).  BV is to be used after all other recommended chemos and a stem cell transplant have failed - which are both true of me.

This drug is cooler than most chemos with how it exactly works.  Most chemos like to take over the whole entire body and while killing the cancer, so it also harms good blood cells, organs, etc.  BV is attracted specifically to my cancer cells causing them to die, not divide.  Although it's main focus are cancer cells, it will still kill off and lower my good blood counts, but not as drastic as my previous chemo pill.

As for side effects, I'm dealing with pretty much the same annoyances as I was with the pill.  But since they do not expect them to be as intense so hopefully I will feel a bit of relief!  The only new side effect that is being introduced is neuropathy (I didn't know what it meant either - it's numbness in my hands and feet).

So far I've been feeling the fatigue (but I don't know what it's like to not feel that) and inability to digest food properly.  I think that is causing the fatigue as well - within minutes to an hour after eating a meal my body decides it's time to get rid of it, leaving me feeling zero energy.  Tonight and last night I've had low grade fevers - nothing horrible to call the doc about, but my body is telling me that something is up!  I'm feeling kinda icky... wondering now if I'm coming down with another cold or infection.  Hope not!!

The one side effect that really caught my attention is hair loss.  When my resident was rattling off the side effects, she said, "You should not lose your hair..." and I immediately responded with, "SHOULD not?!".  Now, this is not common nor expected to occur, but the joke is that I always seem to fall into the minority when it comes to percentages - a true talent of my body.  There's no point in stressing about this possibility.  If it happens, it happens.  Being bald has it's advantages... but I also think I'm able to be so okay with this because it is doubtful to actually occur.   The most that is expected to occur - IF it even occurs - is just hair thinning. 

Because this drug only takes 30 minutes to be administered (as opposed to chemos that take hours and even days) and it is not as harmful on my veins, they are not on the port bandwagon.  I am VERY pleased to know they do not see the benefit of me having another surgery and a gross port poking out of my chest again!  I did express my concern though that I am VERY fortunate to still have great veins for a cancer patient - I have nurses and techs tell me this all the time.  They look good for being an 8 year veteran!  But this is also because I have always had chemo administered through a port, not my arm.  The more my arm is used, the more those veins become damaged and IVs become more painful.  I already have a good amount of scar tissue built up - and I'm not even 30.  If this drug does not work and we switch to something else, then they will put in a port for sure (hopefully this one works!!!).  But with BV we are going to wait out the first few treatments and see how it goes without a port.  Unfortunately I did not do so well when the first treatment was administered.  The nurses were unsure if either the fluid was really cold or if it leaked, but it was painful.  I could feel the pressure in my vein as it went up my arm and I could feel my arm swell up.  It hurt and I was uncomfortable during the whole entire process.  Let's hope it was just a fluke and next time will run much smoother.  Otherwise a port might be in my future sooner than later (if ever!). 

Last Wednesday was my first treatment marking it my first cycle of treatment.  I will have blood work, visit with my doc, and end with treatment every 3 weeks.  My first round of scans on this drug will occur at either the 6 or 9 week cycle - I will find out at my next appointment.


Overall my docs are very excited about this drug.  They are optimistic to see shrinking results immediately with the hope that it could possibly eliminate my tumors all together.  Unlike the lenalidomide, I cannot stay on this drug forever even if only stability occurs.  I'm actually limited to a year (haven't looked into why).  So lets hope for some major shrinking in the next 12 months!!

Medical News Today has a good article about Brentuximab vedotin if you are interested.

Big Changes

First, I cannot thank everyone for their endless love and support.  The emails and text messages have been blowing up my phone for the last 24 hours.  You are all so wonderful and make me feel so loved.  I appreciate it more than you know.  And even those who I do not even know, but have taken the time in their day to send me a message of hope, I am truly grateful.  Thank you.

There is so much to explain, but I'm going to keep it short and sweet for right now until I have the time to sit and really focus on the details.

I received news that my tumors are no longer responding to the chemo, so they have started me on a new drug.  Disappointing news, but they are still optimistic.  Health wise, nothing should really change - I will be able to tolerate the side effects just as well as I have been with my prior drug.  The big change is that it is no longer a pill, it's an IV treatment so it will now be administered at the hospital every 3 weeks.

I was doing okay with the news, but now that it's had time to settle it's starting to get to me.  Everything happened so fast yesterday.  I was on a chemo pill for the past 10 months - easy peasy.  I didn't really feel like a cancer patient.  But during treatment yesterday I was surrounded by cancer.  I was on the side of treatment with the patients who are on clinical trials or studies, like me.  Except they look a lot worse.  There were 5 other people in my treatment pod.  The woman next to my bed looked at me surprised, "You don't really have cancer do you?!"  I explained my story to her and the other women around me.  Next thing I knew everyone was taking turns sharing their stories.  The woman who looked ten times more ill than me also had more optimism than me... and the doctors have given her only one more year of life.  The woman across from me was in so much pain she could only cry - and she was on a heavy morphine drip.  Another woman was asking me about the scientific differences between our similar cancers.  I went into details about the different types of cancer cells, but spared her the information that her cancer is much more deadly with a high recurrence rate.  I did not belong there with those woman.  For starters, they were at least 20 years older than me.  They were bald.  They were over weight and just looked sick.  I felt guilty throwing my healthy looking, young body in their faces.  I'm going to suck it up and put on my best smile, but I am not looking forward to my next treatment.

The good news - my cough (that has only been getting worse) will hopefully clear up for Christmas.  They have decided that it is growing worse because the tumors in and around my lungs are growing.  My amazing resident told me her Christmas gift for me is a diminishing cough.  And I can't think of a better Christmas gift :).

Feeling good vibes

My inbox and text messages are blowing up today.  Thank you for the support, it feels so good to not be alone in this.  

THINK SHRINK!!!

Month 10 Scan Time... THINK SHRINK!

I'm hanging out in Necular Medicine for my 4th round of scans on the trial. My bed is as cozy as always with my heats blankets, but the ice cold cocktail and saline drip do quickly make me chilly! It's time to nap for an hour while the radioactive dye finds its way to my tumors. I see my doc on Wednesday for the results... THINK SHRINK!!

December 4th

I woke up stirring around in my bed a bit, unhappy to be awake before my alarm.  I rolled over and opened my eyes to notice the hall light was on.  I laid quietly and could hear someone downstairs.  I looked at the clock - I still had a good 30 minutes of shut eye.  I rolled over again, hoping to fall back asleep, wishing my dad would remember I hate it when he leaves the hall light on - I like sleeping in complete darkness and that little light under the door drives me nuts!  But then again, why is he even up?  I am the first one up in the house on school days.  Is it Saturday?  Is my clock wrong?  Then it hit me - my mom.  Something must have happened.  The anxiety began to build.  She was last with us on Thanksgiving, before she slipped into another coma.  This coma seemed to be a long one.  Everyday when I would come home from school my dad and the dog would greet me at the door.  We would hug and I would always ask, "Did she wake up today?"  It was just a few days ago when instead of hearing, "Not today.", I was responded with, "Honey, I don't think she's going to wake up from this one." 

I laid there, not wanting discover the truth, but I already knew.  It didn't take long for me to figure it out, nothing felt right about that morning - and I had only been awake for a few minutes.  I put on my slippers and walked downstairs.  My father was in the kitchen already making breakfast.  He turned and looked at me as I entered the kitchen.  "Why are you up?", I asked.  Without any words, he came over and hugged me, "She passed away in her sleep last night."  

I don't remember too much more about that day, just a lot of people in and out of the house.  It was really hard to say goodbye to her Hospice nurses, they had become family to us over time.  Relatives, the minister, and neighbors came by to help my father with the organizing and planning for what was to come.  By the end of the day, I was ready for a bit of normalcy in my life.  I was excited that schools were letting out and I waited for Katie to come home.  I walked down the street feeling a bit of freedom from the sadness that loomed in my household.  Unfortunately, it was at Katie's house too.  I didn't stay long, but enough to gain a some peace of mind; and to wish Katie a happy 11th birthday.  

That was 15 years ago, December 4th, 1996.  Since then it has become easier, but it'll never be easy.  But having friends like Katie, and waking up to emails from her, 15 years later, are what keep me strong.  She is no longer two houses down the street from me, instead she's about 4 states away.  But she knows how to be there for me on days like today - even if it is her birthday. 

Thinking of you today. It sucks that all this sickness and side effects are creeping in, but I know your mom is watching down on you and is your biggest cheerleader.  You learned how to be strong and handle adversity from one of the best.  When I think of when we used to hang out in her room with her, I don't remember her as being sick. I remember just a happy mom who would smile even as she got tired and closed her eyes. I see that positive attitude and spirit in you now too. I am amazed at it, but it is one good case of "the apple didn't fall far from the tree". 

Wish I could be there with you today, and way more often for that matter.  Also, thanks for always celebrating with me on my birthday all these years. I have to think that it might not be the time when you want to be all joyous, but I appreciate it.

Love you lots and miss you. Thinking of you always.

Happy Birthday, Katie, and thank you for helping me start the day off right.

Finally some pep in my step!

This week has deininiately been MUCH better!  I've continued with the 8:00 bed time and I'm wondering if the snot will EVER leave, but the energy is back up!  Hooray!  I still have some moments of dizziness where I catch myself finding the room spinning, but I am keeping my meals down and it's been weeks since my temp has spiked for no apparent reason, so I'll take it!  It feels so damn good to be getting over this. 

Over the past few years I would catch myself driving with the windows down, loving the wind and feeling absolutely great when I would be slapped in the face with reality - this is a moment I should cherish.  I CANNOT take my health for granted.  And I found myself doing that every now and then, forgetting how horrible it was or how bad it possibly could be.  It's gut wrenching sometimes to know I have big plans in the near future and there is good probability that I will wake up ill and unable to attend.  That is why I am such a big believer for living in the moment.  I almost feel like Jim Carey from Yes Man, I have no reason to turn down any invitation or opportunity.

Being with friends over Thanksgiving was very therapeutic as well - much needed mental medicine.  I also have had this annoying abdominal pain looming over my head.  We had NO idea what it was.  Strange pain, comes and goes, but slightly intense.  I felt like this was just something else to add to the laundry list.  There is ALWAYS something.  And that was getting to me - knowing that once I get over one bump in the road, another bump will be there waiting.  But I'm happy to realize that my slump is over and I'm ready to deal with the bumps head on! 

As for the abdominal pain, I had a CAT scan on Monday - totally annoyed to be paying hundreds of dollars and missing an afternoon of work - but at least my oncologist and I will have peace of mind.  The good news - nothing showed up!  So it's not a tumor or crazy infection.  We are banking on muscle tear.  And now you wonder, what on earth is this girl doing to tear a muscle?  Well, as you have learned one of my many talents is injuring my body without any realization.  In the past 5 months I have fractured two ribs simply from coughing.  This muscle tear would be a result from vomiting - that stomach flu seriously beat me up!  It is not healing very quickly (going on 3 weeks now), but it's also very tolerable.  It could absolutely be worse!

It feels soo good to have an increase of energy, physically and mentally, and to be feeling well again :)