A Long Post for a Long Day - the war begins, first battle begun!

Hello again!

Truth be told I wasn’t sure this blog would make it up tonight. Unfortunately I was battling my scanner (thank you dysfunctional wireless network!) until just recently when I gave up on the thing. Technology, such a wonder but when it doesn’t work it can make you want to pull your hair out! (I know there’s a joke in there somewhere... but I’m too tired to work it out. feel free to comment one).

Also this blog is a long one, mostly because I can’t sleep thanks to the super power anti nausea drugs. Im rocking out to Desolation of Smaug and typing this up, you may want to get a steaming cup of tea or coffee to fortify yourself and please ignore any massive grammatical errors or randomly misplaced words. I am going to post this without properly editing it as I should try to sleep before the sun rises and I know (due to the statistical report I receive) that people like to check the posts on Saturday AM’s.  

 A quick housekeeping item: I know a lot of people have been having trouble posting comments on my blog. I’ve tried to do some trouble shooting and the best I can come up with is that you need to be signed into your Google+ account.  Google+ is free and I have to admit I personally am a fan as it personalizes my google account and integrates my laptop with my cellphone.  If you have a youtube account it is the same email address and password. Now how to create an acocunt:

1.          Enter your comment in the comment section.
2.      In the “Comment As” option select: Google Account and hit publish
3.      You will be taken to the Google Account sign in page

a.       Fill in the quick sign up sheet  (the hardest part is finding an email you like that isn’t used)

b.      Retype out the funky letters you see

c.       VOILA! You have an account!

  If you have any issues please let us know I will continue to work on trouble shooting this.

Back to the ongoing saga. Yesterday when we left off my flight arrived late last night and Steve and Dad were racing the snow storm to the Canadian border. After a few hours sleep I woke up early to have a phone chat with a friend who I haven’t talked to in a while. Unfortunately due to some error in time zones it was a tidge early and they were still asleep. That aside I got up and got ready for my. During this process the animals ears perked up and Kelly walked to the door and gave a single low bark. This signals approach of a recognized friend. She was a bit understated. Steve walked through the door! This was a pretty amazing moment as I had not spoke with him or dad since late the previous evening and was not sure they would make it. Him and dad traveled 18.5 hours through the night to get back to Saskatoon in time. That action speaks for itself. I am blessed.

My first appointment was at 9:30 this morning. A teeth cleaning. My chemo appointment was set on Friday, I left for Mayo on Monday and arrived last night so this is the first I could get in to see any dentist. Unfortunately I tried to get in with a family friend but it was not possible and I went to a strange clinic. Thanks to Mom for not only booking this appointment but for escorting me around town. Blondes in Beemers Car Service can live on as you are currently a blonde! Yah! It has a much better ring than Baldies in Beemers. It was straight from the dentists to the fertility clinic to receive our lupron injection. As typical it was a little more interesting than any other injection I’ve received. Steve and I met with the fertility specialist to assuage our concerns regarding starting chemo and lupron on the same day. We then proceeded to the injection which included a big ol’ needle to the gluteus maximus! Whoopie! That said it was actually quite comical as I have learnt that at a fertility clinic and with breast cancer ones more “delicate sensibilities” need to be tossed out the window and a more clinical resignation to ones personal areas adopted. All I could picture was a Christmas tree ornament I had seen at the mayo of an early 20^th century scene of the similar situation but in better costume.

a completely unfair image, but my artistic embellishment on the situation

Feeling a bit put out we walked out to the car, me with a slight duck walk and a low and behold a great big treat was waiting for me! Steve’s work friends were generous enough to put together an amazing gift pack!!!! I have never seen a more customized gift basket in my life. It brought tears to my ears; unfortunately I was determined to not cry today and therefore after a moment or two of concentration maintained composure! This gift pack included a beautiful blanket that perfectly matches my living room! Equine magazines, my top 4 favourite treats and a sensitive skin body wash and lotion beautifully displayed with balance and symmetry of a professional basket! Comically one of the first things I thought was quoted from a friend of ours who would often exclaim “SPOILED!” when Steve would do something to spoil me in front of his buddies. Ironically now you (you know who you are) are in on the “spoiling”!  A great big thank you to the SHR folks involved in the wonderful card and gift and a great big virtual hug to Sally for organizing such gift basket perfection!!!

Gift basket perfection!Comfort, sweet, savoury and presentation!

After this rallying moment we hopped in the car and I hugged my gift bag all the way to the hospital. I kid you not, 3 people tried to pry it from my fingers but I would have none of it! Short of carrying the whole thing with me into the cancer clinic I have been nearly inseparable from it! Linked arm in arm with my parents and husband I marched for the first time to the front lines of this war.  Last week we had surveyed the battleground when we met the oncologist and spent the past week reviewing the battle plans but today was the first day of real battle.  We marched linked to the main doors but I insisted on walking through the doors strong and independently. Not that I didn’t know, feel or enjoy the support of my honour guard but it was important for me to face this battle standing tall. So after a few quick hugs and winged by Steve and my parents we walked through the doors. Upon entering the clinic the first thing I saw was a gleaming beacon of MacDonald Clan strength! My gorgeous cousin Marla ready and armed with a strong hug and strengthening words!  It helped me stand a little taller and prouder knowing I had “the strength of the clan” with me.  An interesting side note with my relatives  and I is that the first thing I recognize is: there is a person who is related to me, and then I identify who it is. It is a unique distinction from recognizing a person and then recognizing how you know them. I think this speaks to the strong family ties that I have. This same phenomenon seems to apply outside of visual recognition and includes auditory as this happened earlier in week. When another cousin who I don’t  recall having ever spoken with over the phone called me. I instantly recognized him as a relative in his first few words and knew exactly who he was by the second half of his first sentence. We had an amazing conversation and I was able to gain both support and strength from him. His brutal honesty and genuine sentiments were real, refreshing, honest and beautiful. Thank you!

The shirt my dad thought he got me  

the comical surprise on the back!

Minutes after registering at the chemo centre my “twin” walked through the doors. Seriously we are still mistaken for twins. The nurse even asked us today. Ashley came and sat with me while waiting to go in and even helped me open the next pendants in my journey bracelet and discussed what my best food options were for lunch with me.  As the Gerstmar crew can really fill a room, Steve and I went in alone to get set up with my IV.  I will be getting a picc line or possibly/hopefully a port put in for future treatment, however it was more important to start the battle than to wait for the picc line. I took a few anti-nausea pills and then the IV was inserted and we started with a saline bag to get the ball rolling. I was then given another anti-nausea drug through IV. At this point Steve gathered the troops and brought them in. Unfortunately Ashley had to leave at this point but mom and dad came and hung out with us. My chemo treatments are pretty short so it wasn’t too long.

 An interesting effect was how physically cold my arm got. I originally thought it was a sensation of cold not actually cold until I touched my arm. Let me tell you how weird that was! I quickly caved and got a warm blanket to wrap my arm in. Another weird thing about today was walking with an IV pole. Now I’ve moved a few IV poles around during my days in the cath lab, but it’s much different when the IV pole is attached to you wrist by a “pointy thing” and a short tether.  Luckily “careless movement of limbs” was also eradicated in the cath lab and the entire endeavour ended without a hitch.  Another interesting acknowledgement is that both the IV itself and walking with an IV pole attached to ones arm are symbols of “illness” that I struggle to identify with within me, the nurses were quick to laugh with me about my “first IV and IV pole” baby steps.

The staff at the clinic have once again all been amazing! Really taking the time to ensure everything is done just right! There are some risks involved with administering some of my Chemo drugs via IV and the ladies were phenomenal in taking care to ensure everything was done to prevent damage. This includes actually physically administering some of the drugs via syringe and hand pushing them whilst monitoring veins and my surrounding arm for a reaction or leak. Unfortunately at the beginning I wasn’t much help as I tend to be hypersensitive to pretty much everything so the IV was causing discomfort itchiness etc which was hard to discern between issue and hypersensitive but after about 30 minutes I was getting the hang of what is normal. It is really quite an odd sensation! Some of the drugs come straight from the fridge so instead of warm blood pumping up your arm it’s any icy cocktail cascading up (not down) your arm towards your elbow through the bicep and into the shoulder at which point it was too warm to notice further journey. Another silly thing was although I knew my hair wasn’t going to fall out today, I felt like it would. So as unreasonable as it was I was happy to have a full head of hair for the duration of the treatment. Near the end of my treatment my big bro came to plant his banner in this particular battle field as well!

The dynamic trio ?

We all gathered back at our house where mom ran to the store and got some chicken and groceries for our fridge and we started eating. And thus the post chemo journey began. As some of you know, I recently discovered migraines don’t magically go away when you get diagnosed with cancer and lucky for me I was in for a bit of a doozy today so it is hard to identify the exact nature of the comorbidity of the migraine and chemo “sensations”. Knowing my unique sensitivity to the world around me I was ready for whatever was thrown at me. Knowing I was likely going to go for a bit of a ride. When we got home my speech started slurring, I started mixing my words and the “brain fog” or what I called “brain dumb” set in. This is a very demoralizing sensation as the initial feeling is equivalent to your IQ dropping a solid 50-100 points. Entire words (and simple ones like purse or table) completely erase from your brain and you seem to replace them without noticing with completely new ones and or you are no longer able to construct simple sentences. I have always felt this would be a pretty neat study to see if there is a link between the original word and the seemingly incongruous words it is subconsciously and seamlessly replaced with.

Any who, I quickly learned to work around it as it is nearly identical to migraine brain. The best way to describe this is that you have not lost your knowledge or intelligence however it is hidden behind a thick wall of thorns. When you first look you can’t even see your “knowledge” through the thorns but if you know it’s there little whispers of light peak through. However, you can’t charge head long at those hints, if you do you get tangled in the thorns and stopped dead in your tracks. Instead you must pick your way methodically through the thicket looking for the gentlest path. It’s pretty hard to explain but none the less, I got my brain back with a bit of effort. That said, this does not come without a cost and the knowledge you are trying to recall needs to be worth the energy and time it requires to retrieve. Simple things like common courtesy and manners no longer come effortlessly and need to be mentally added to each communication which makes simple conversation alone challenging.  Now while experiencing this fog I started to experience drunk like symptoms. I danced around the living room and was simultaneously feeling very nauseas.

After the house started to clear out the real “ride” began. My migraine started to build into a crescendo and the nausea was along for the ride. At first this rattled me, as I was in a significant amount of discomfort.  Until I realized I’ve been battling migraines since grade school. This was nothing new, same species of monster different skin color. So with the support and care of Steve I started battling the symptoms as I would a migraine. I woke up from a nap with my official first “hot flash” caused by the lupron that was injected previous to the chemo. So now I am battling nausea, migraine and hot flash. Once again I felt a few moments of confusion when I realized, I’m used to being uncomfortable in the heat, I can deal with this and I did. 

Post Chemo game face!

The first post chemo hour my body was in more or less a state of shock and didn’t do much but my response was pretty quick thereafter. When my body realized this wasn’t going away it seemed to go into “what the hell?!” mode. It was bouncing from one side effect to the next in what seemed like pretty extreme force and random intervals. I soon realized it was just my body trying to decide on the most appropriate response to this assault and I prepared to set my anchor and ride out the storm. My bodies preferred response to the chemo seams to have landed on the tried and true combination of muscle cramp, migraine and nausea. Steve started trying to rub out the cramps but as it had soon spread to every significant muscle group we realized we were out gunned. On too chemical warfare. We were then stuck on the debate of pulling out the big guns or just some light artillery to combat the cramping and migraine as I had both on hand. I started small with one tylenol and (thank you sensitive body!) it worked! I was thrilled for the muscle cramping to go away and the migraine to feel less explosive!  Phew!

Appetite has been a tricky one. I am craving carbs. This is not news to anybody with an acquaintance with my sugar addiction but I worked hard to stick to low glycemic carbs as much as possible.  Steve has been great at engaging me to eat small bites of food throughout the evening. When the nurse said it was important I don’t start losing weight I snorted. It seems this may be one of the big battles ahead, finding meals that are healthy, lower carb and low glycemic and non dairy that I can eat enough of to maintain my weight while battling the nausea. That said, if I can chug garlic water I can nibble food throughout the day.

The side effects seem to come in waves, but luckily it is nothing I have not faced before. Due to my heat sensitivity and my attire while horseback riding I am used to feeling “overheated” and uncomfortable. So this drug induced menopause so far has been easy to manage aside from a lot of unnecessary sweating. In response to the chemo my body has seemed to have tested a few responses and settled on migraine or migraine like symptoms to fight the fight. This includes the fog. This fog is terrifying at first as you feel dumb as a log. It comes and goes throughout the day. But I learnt at an early age to deal with the fog. In fact I had to completely relearn how to do math and write essays in high school thanks to “the fog”. Therefore once it was identified it was easy to find the right parry to counteract this strike.   The “high” from the anti nausea drug has been easy to utilize as I am still typing! So tonight it was not an issue. The migraine although pretty uncomfortable is also not new nor is it intimidating. It is frustrating and trying but it is almost like having a frenemy or old sparring partner come visit. You are so acquainted with their movement patterns it is familiar. Familiar is in its own way comforting. You may break a sweat or come out exhausted but you have a block and a parry for all of the tricks and intricate assaults and you know you are still standing at the other end. Therefore although not particularly impressed that my current chosen response is migraine and nausea, I am comforted in the familiarity and rhythm of that sparring match. On Monday we plan to discuss some drug options to help with the worst of the migraines and nausea that aren’t quite as strong as my current heavy artillery but a little tougher than the Tylenol.

Of course my strongest weapons on this journey has been Steve. Having grown up together we are intimately a tuned to each other. Steve having already journeyed with me on some pretty rough migraines and was a seasoned veteran on the battle field today. As the commanding officer he was fighting exhaustion and fatigue to balance the thin interpretational line between listening to what I say is happening and listening to what he saw was happening. Then issuing suggestions or in some cases the tactful issue of commands to best respond to the first unpredictable assaults and waves of side effects.  An interesting observation made through the battery of side effects is that the hot flash seems to indicate an ebb in the migraine pain and therefore was an earmark for some relief. As we started to recognize and manage the side effects Steve was able to get some rest. Steve’s support and leadership on this journey has been truly admirable!

ready for battle!

Today’s journey was of course very intimidating. Having never been a patient in the hospital for anything other than some sort of riding injury which generally resulted in X-rays and some pain killers I have never been truly “ill”.  But that alone is the big fear. The unknown.  We did our best to prepare for the unknown, we convened in the “war room” many times, spent hours researching and educating ourselves for the first battle, but ultimately we didn’t know what would happen, a fear of first blood. But fear is normal. We face fear in every aspect of our life. And although this is not a new concept I often laugh and say lack of fear is often an abundance of ignorance. Courage is not found in the absence of fear. It is in the acknowledgement and acceptance of fear that we gain courage and can face the fear head on! In acknowledging fear we are able to overcome that fear. This is something that I have been lucky enough to train not only in myself and the horses I work with but with my students and we all teach each other something new about facing fear almost every day. I have been lucky enough to face fear and adversity in many forms in my life and now think of it like hours in the sparring pit. So many life experiences have molded together lately to allow me to sail through this journey. For myself today, acknowledging that I did not know what was really going to happen or how I would respond was the first step, the next was the knowledge that I was willing to accept the challenge of whatever “worst case scenario” could come and the knowledge that the risk and challenge were worth the benefit. The final step was knowing that I had the support of many “banners” by my side today to bolster the lines where I may have been a bit thin.  Today was the first day we really got to fight back. As in most battles we had to travel to get there and of course were travel weary. But we were ready and prepared and we walked through those cancer clinic doors with our banners snapping, our heads high, our eyes clear and our hearts steady.

We’re ready to fight!

Left Foot’n & Right Foot’n,

Steve & Alyssa