This is Me!

This is Me! The good, the bad, and the bald. You get it all! But I have hair now. This spring I'll be rockin the pixie.

Thursday, September 26, 2013

Counting Marbles

Well, I have had four treatments so far and I have to say it isn't really what I expected it to be.  The final prep appointment was annoyingly uncomfortable.  As I was laying there on my custom made mold, with my right arm above my head and my left arm pasted to my side a terrible thing occurred.  One of the lasers was hitting me directly in the left eye.  Don't panic!  It wasn't that kind of laser.  It was a light beam for measuring.  Anyway, this bright green light caused a small tear to form in my eye.  I willed it not to leak out.  I even snuck in a silly prayer that it would stay in place.  But it kept growing until it could no longer fit in the corner of my eye and it began a slow trickle down the side of my face.  Normally this wouldn't be that big of a deal, right?  I would just reach up and wipe it away and be done with it.  Today however, I am to lay completely still while they take images, scans, and measurements of the area to be radiated.  At first, I wasn't too worried.  I figured it would fall and that would be it.  What I failed to realize was that there was a light breeze blowing through the room.  It was causing my poor salty drop to itch as it tried to make its' way.  I determined to not think about it.  I would think about something else like the cramp forming in my leg muscles.  OH GREAT!  That wasn't helpful.  I realized I was starting to twitch.  Concentrate!  I thought.  I just need to concentrate.  I can do this.  Wait!  Shoot.  Is that another one?  A second drop was beginning to follow.  I am not going to make it.  Relax.  If I can just relax... okay that's not working either and now there are two itchy drops.  The twitching was getting worse.  They are going to notice I need to just ask permission to ITCH!  I know this may seem silly, but I was so uncomfortable after an hour of not moving.  My muscles were cramped up and I had to have help getting up and off the table.  Nice! 

The radiation process is not much more than laying completely still, in a very specific position while they turn on the big guns and fire em.  I don't feel anything from the radiation itself. I can hear the different tones and see the machine rotating around me, but that's about it.   I will also say that the radiation chamber is a place were the term modesty is fond memory. To compensate, they provide nice toasty warm blankets to cover all the already covered parts.  The techs are great though and I am quickly getting accustomed to walking in and rippin of my shirt to get er done. 

Another thing I am learning is how ridiculously mathematical this whole process is.  It made my little bean counting heart very happy when they started talking about central axis, peripheral diameters and so many other different numerical measurements.  I almost forgot it was because they wanted to get the exact angles and measurements before they shot me with very specifically measured amounts of radiation.  It is a very precise science that I am so thankful for.  I have met not only the techs who set me up each day for exact depth, angle and locations, I have also met the physicist who determines my radiation  and measures it with diodes to make sure it is accurate and the dosimeter (not sure I am completely accurate on that word, he said it so quickly)  who calculates the exact details of my whole plan.  And then of course there is my radiologist who came up with the plan in the first place.   All of these people have been great, but I will tell you that the physicist and the radiologist are too smart and serious for their own good.  They don't get my CFP jokes.  I layed there on Monday while they were adjusting and measuring and re aligning.  It seemed so serious and intense.  What better time for a good ol wise crack.  I asked "So, are ya ready to nuke me?"  and the answer came back in a very serious tone, "This is a very precise and specifically targeted treatment."   Well duh!  Like I would voluntarily lie here if you were just gonna willy nilly aim that big gun and FIRE it at me!!!  Poor man.  I am gonna have to work on him a bit more I can see. 

Today as I sat in the radiation waiting area, I noticed a small bowl of glass marbles.  I had seen them before, but hadn't sat there long enough to read the sign beside it and see the small gauze bags.  The sign said to take as many marbles as you had days of treatment and then each day put one back to count down.  I happen to be the person that not only loves to do lists, I am the person that will write in the item I just did if it wasn't on the list just so I could cross it off.  Yes, I am one of them.  You might be able to relate.  I am also the person who loves count downs so as you can imagine the idea of decreasing my bag of marbles as I knock another one off was very appealing.  So today, I collected 31 marbles.  Tomorrow I get to put one back and that will feel good.

PS - My oncologist called me herself with the results from the echo I had on Monday.  Ejection valve output is back up to 55%.  Let the infusions resume.  Thank you Lord!

Psalms 57:5
Be exalted, O God, above the highest heavens!  May your glory shine over all the earth.

Friday, September 20, 2013

CFP's

It is time to unveil the mystery behind the initials CFP.  You have heard me toss it out into conversation with out any explanation, leaving it to hang there like the lone pepper in an Olive Garden salad. Oh sure, you know it's there, but why?  Is anyone going to eat it? What is its' purpose I mean after all, it is Olive Garden.  At least that explains the 3-4 olives lingering at the bottom of your salad bowl.  And whatever happened to the giant olives they used to put in there?  Anyway...  It has been a funny little side joke between my sister-in-law and myself.  Actually, she coined the phrase.  It came about as a result of my insensitive or tacky comments about cancer, namely, my own cancer.  CFP stand for Cancer Faux Pas and it might look something like this:

Tami :  (Oh look!  M & M's)  grabbing a handful

Concerned Friend : (You aren't going to eat those are you?)

Tami : (Why? What are they going to do?  Give me Caner?)

Concerned Friend : (                         ) Shocked and speechless

Here is another example that I am sure my kids will attest to.

Mom:  (Hey, would you guys help me clean up the backyard and oh by the way I think there are rats in the greenhouse we need to get out.  Thanks)

Kids:  (Really?  Are you kidding?  Rats?  What are we supposed to do?)

Mom: (come on guys. I have cancer and could really use your help.  I am still really tired and my joints ache.  Can't you just help me by getting this cleaned out.  The garden could use weeding too btw.)

How about the one I shared at the beginning of this journey.  It came from a great kid who is notorious for CFP's and other FP's and I love this about him. 

I think it was right before my first surgery, the kids all had a party to show their support.  Several of the teens from my running class were there and they had all pitched in to raise money and get these Team Tami bracelets.  One of the kids shouted out into the big group of people "Who needs breasts when you have friends?"  Good point    With the left over money, they purchased Zaycon Chicken breasts.  Not to be outdone, I felt it fitting to add "And look I have plenty of spare breasts now anyway!"

This one I didn't do, but we thought about it and I actually told the poor border patrol that I was going to do it.

Tami: approaching the border with kids and mom in the car.  The suggestion comes in to wait until the middle of the questions and then casually pull off the wig as he is looking at my passport. 

After we told the very kind border patrol of our plot he said (oh no, I can't deal with that one.  I am retiring in one year)   ??? 


Please understand this is not intended to poke fun at anyone else with cancer.  This has been strictly directed at myself and my cancer experiences.  I think most of you already know this about me, but just in case I wanted to make this very clear.  I am in no way minimizing the cancer journey that others are on.  I am simply choosing to pepper mine with cayenne and keep it spicy.

I know there are a lot of other incidents where I am guilty of the CFP, but I would rather hear from you....  please commenet back or message me your favorite CFP that you heard me engage in.  And please don't be shy. 
 



 

Thursday, September 19, 2013

Radiation Prep

Last week began the "planning" phase of my radiation treatments.  I guess this is good.  Not like I want them nuking unnecessary parts.  I have to say it is an interesting process.  You have probably heard about the tattoos?  This is that part.  I went in Friday to talk with my radiology Dr. and he re confirmed the plan.  7 weeks, 35 days, every weekday.  

In order to make sure they are hitting the same spot every time they do a few things.  First order of business... to make a body mold.  I realize this sounds a bit intriguing and maybe oddly fun, but I assure you it is not that exciting.   They have you lay down on a rock hard bean bag that has had all of the air sucked out.  They position your body the way they want it for during the actual radiation and then they pump the bag full of air.  This loosens up all the beans and allows them to continue to form it around you.  So with my hand on my head and arm resting to the side they push and shove the form until it looks like what they want.  Then they suck all the air back out and it begins to tightly form around you.  "OOPS!  We forgot that we are doing your lymph nodes too.  I need you to turn your head to the left.  Sorry.  I can't fill it back up and let your head shape form because then I would have to do it all over again."   Oh dang it.  So I get to lay there with a bump in the side of my head every time I go in.  Oh well.  It's just a little uncomfortable.  I can live with it.  After all it's not like they are pumping me full of toxins or anything crazy like that.

After the body forming portion of the appointment, we come to the mapping session.  This involves red permanent markers, wires with tape on them, and small lead bb's being placed in strange and unmentionable places.   By the time I was done, I looked like the night sky in late summer.  I had at least the Big Dipper happening and after they tattooed the two dots on, I think one could argue Cassiopeia could be seen.   Yes, I now can say I have my first and second tattoos.  Not fun or daring.  Not permanently displaying a symbol of hope, rebellion, or even religion, but tiny little permanent reminders.  Reminders for the radiation techs to pay attention and keep the red beam on the little black dots so I don't loose anything else.   With all of my red markings, my special bbs and the wiring along the scar lines I am ready for my photo shoot.  Yes, I did say photo shoot.  And yes, with a camera.  Ugh.  Really?  More pictures of my sisters?  To my real sisters, I only wish it was with you all. Clearly I made it through all of the run way blitz.  Then they ran me through the scanner with all my hardware in place.   I tell you what... this is gonna be some kind of plan.

I have another planning appointment this Friday.  I guess they wanna get it right when they are lightin you up.  They said it was another longer appointment.  Then the real fun begins.  Actually, I have heard from multiple sources the actual treatments themselves aren't bad at all. 

Monday will be a busy day.  I will have my first treatment of radiation and my echo cardio gram to check on my heart.  I have been faithfully walking and trying to strengthen it back up.  I would be lying if I said I wasn't a little worried about it.  My radiologist has the same issue with his heart and it meant no more running.  Okay.  I guess if that is the worst of it, I will adjust, but I really don't like how it feels.  I can actually feel the difference, especially at certain times like during running or if I get too hot.  Nor do I like the idea of being 41 with heart issues as well as already having had cancer once.  Since neither of these things are issues I can control, I will do my best to let them go.  I was describing how I envision entertaining the what if's to my friend the other night.  I see it as trying to tie a boat anchor around my neck and call it jewelry.  No one does that.  It's not helpful, it wouldn't look good, it's not useful and everyone knows it would work better as a belt, Right?!?  No.  But seriously.  It's just the next step in the plan.  And check it out!  I have HAIR!

Hebrews 4:16

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Saturday, September 14, 2013

Team Julia

I met another amazing woman at the cancer center.  The nurses really wanted us to meet and attempted to connect us without giving away patient information.  We are similar age, similar family size, shared faith, similar cancers, and very similar sassy, "What? You mean I am bald?" kinda attitudes.  We missed each other a few times, but on one of my appointments I thought I would go back and see if she was around or at least find out when she would be in.  Of course the nurses couldn't tell me if she would be in on Monday when I would, but they suggested I look for a younger patient, usually with long brown hair, and an attitude.  I left the center and was in my car ready to pull out when I see two people from the center running around the parking lot.  I paused for a moment and sure enough they came running up to me.  "She's here!  Julia is here!"  We were going to get to meet after all.  

I parked my car and followed the nurse in.  They weren't sure where she was, but they knew she had recently come in.  We searched all of the chemo nooks, but came up empty handed.  I felt like I had seen someone in the lab area that kinda matched her description so we rushed back that direction hoping not to miss her.  Low and behold, there she was... waiting for a shot. 

I introduced myself and we began to chat.  An hour and a half later... I realized we did have a lot in common, but it was more than that.  I felt encouraged and inspired after talking with her.  I want to be like her when I grow up... NO, I want to be like her now.  I sat talking to this young woman who has been in chemo for 4 years.  No, that is not a typo.  Four years of toxic drugs being pumped into her body.  She has grown and lost her hair multiple times.  She has had to have a pace maker put in and she can't have radiation because it will fry her bones and that's not good.  And she was smiling and joyful.  She wasn't fearful or angry.  She isn't dying from cancer, she is living with it, her words.  And when I say living with it, I mean just that.  Her chemo infusions are a part of her routine, but they don't dictate her attitude.  They may affect how much she can do, but don't prevent her from living her life. 

I was so excited to visit with her and had no idea how much it would affect me.   I feel stronger having met her.  She fights for herself and for her family.  She oozes life from her very being.  You aren't even tempted to feel sorry for her because she isn't feeling sorry for herself.  She also fights for women around her in need of help.  Her family has put together a team.  "Team Julia".  And they fight and fund raise to help other women going through breast cancer.  It is an expensive undertaking to say the least and her family and extended family race, run, bike, triathlon, and Ragner to raise awareness of the disease and to financially help others in our community who are struggling to afford life with breast cancer.   Click on this link to read more about Julia and her journey. 
 
 
 
Add Julia and her family to your prayers.  I know from experience that there are days...  The mental game is a tough one and even the strongest of warriors need support and encouragement. 
 
 
Thanks everyone.  I really wanted to share a little of her story with you.     Don't worry.... the CFP explanation is coming soon.

Thursday, September 5, 2013

ECHO, Echo, echo....

I used to think this term, echo, was just the cool sound that came bouncing back and blew past your face after yelling into a deep ravine.  I have learned in the past 6 months that it is more than just that cool scientific bouncing of sound in air.  It is in fact, a special test used to measure the function of your heart and all its' valves and ventricles.  This brilliant test is also probably something that escaped my knowledge due to the fact that I am a young (hey don't knock it, in cancer terms I am young), active, healthy person who doesn't have heart issues.   Well.... fast forward to now.  I am so grateful that they are so cautious about everything cancer related.  Not that they have a huge choice when they are pumping my body full of chemicals that are completely TOXIC!  

As many of you know, I had an echo a few weeks back.  Yesterday, I met with my oncologist to have some blood work done and to go over the echo results.  It's not that it was horrible scary news, but it wasn't normal good news.  I have mildly impaired left ventricle systolic function.  A lot of words to say that the blood going in works fine, it's the pumping out that is not working as efficiently.  It is a side effect of the drug, Herceptin, that I will be on for the next year.  With this knowledge, they have postponed my Monday infusion and scheduled another echo.  What my oncologist is hoping to see is that the function level is not decreasing.  Stabilized is okay, increasing is even better, and pumping like a seasoned marathon runner is what I am voting for.  I am not limited in what I can do, in fact the opposite is true.  Exercise is helpful to strengthen the muscle.  I had been hesitant to do any running cause I could feel my heart was pounding differently when I ran, but I have been walking a ton.  Boy do I hate starting over, but I am a highly motivated individual!

While I am not overly concerned about this set back, I would ask for your specific prayer for this.  It will be an ongoing issue that they pay close attention to for the next year while I am receiving the infusions.  You can bet I won't be waiting around to hear what they say.  I'll be proactively moving and working towards a stronger healthier me.

INFUSION COMPLETE

These were the two words I was looking for last Monday, August 19th, when I completed the last of my 16 treatments.  It was a great day!  A good friend picked me up.  We stopped at Woods to grab a coffee and the girls recognized me and gave us our drinks and scone for free.  Then I had great visitors while we were there.  And to finish it off, my mom and the kids brought in cake and balloons.  It was really quite a day and an even better way to finish off chemo.  That evening, even though I had the worst chemo buzz ever, with my legs shaking and my mind humming, some amazing people came and helped me celebrate the finish line of this portion of the race.  Funny thing is... I never did see those two words.  Instead I got an "air in line" message.  We'll take it!

Being done with that part is so nice.   I opted to take the week off from writing.  I figured if I did, I might have some of my brain back.  The days following my last treatment were pretty exhausting.  Especially Tuesday.  Monday night was a great way to celebrate being done, but I only slept two hours.  Dang steroid buzz.  Tuesday was mostly a blurr.  By Thursday and Friday I was pickin up steam.  This week has been even better.  I am beginning to remember things more, not everything, so don't quiz me.  I have noticed there are some lingering side effects that I am hoping will slowly disappear, but nothing I can't live with if they don't.

One thing I have noticed is that I didn't realize how feminine eyelashes and eye brows make me feel.  While I was fortunate to keep some sparse eye lashes for the duration, my poor bottom eye lid has a scant 2-3 on each side.  Yes, I am able to girl em up to look feminine, (sparkling teenager eye shadow is an amazing tool), but it has felt very weird to not have these two eye accouterments.   I didn't realize how attached to them I was.  In some ways I almost feel like they truly make me feel and look like a woman cause you should see me in the morning with out them.  It's very odd.

So many have asked me how I am now that it is over or have asked other family members if I am glad to be done.  And while yes, the nastiness of chemo is over, I would covet your continued prayers.  I have til next May or June with infusions every 3 weeks and daily radiation coming up in a couple of weeks.   I realized that during this season, I have rarely prayed for healing.  I mostly have focused on asking God to use me where I am at and to give me peace, wisdom, and direction.  I am grateful for the things I have learned.  I would have never had the desire to help others with this nasty critter.  Nor would I have had the empathy for those who are there.  I may have felt badly for them, but now I realize, that for me at least, that was not the emotion I wanted for people to feel when they looked at me.  I wanted them to join the team fight with enthusiasm, not sadness and pity.  I look at these fighters differently now.  I never realized how strong this group of people have to be.  So now, when I see a fellow fighter, I set aside any thoughts of the pitiful "awwhhhhh" sigh, and dive in with compassion, interest, and a tad bit of sassiness, peppered with the occasional and appropriate CFP.

I have recently been asked by a few people for specific prayer and I wanted to share these requests with you. 

A friends grandma is experiencing a re-occurrence of ovarian cancer and it is "floating" around in her.  The prayer request is that she would stay solid and find strength in her faith.  I would add prayer that she experiences a tangible peace.

I ran into an old friend at the fair only to learn that he had a massive stroke last year.  I pray God would be ever present with him, bringing peace to his mind and that he would continue to get stronger and regain ground that was lost.

My grandpa is attempting to say some good byes as his time is coming to an end, and along the way, he experienced a medical emergency.  I pray he gets to see who he is supposed to see and say what ever he needs to say before he goes home.





Sunday, September 1, 2013

Raspberry Gleaning

 Can I just say that gleaning as a distraction is incredible.  Two weeks ago, I received a call that we were going to be able to glean raspberries.  I strongly encouraged the crew that picking free raspberries was a good idea.  Ok, I may have used the "C" card to get my way, but hey, we're talking raspberries here!  We drove out, found the field and grabbed our boxes.  We went two to a row and got to it.  The pickin is much slower on a glean, but as you can see, we did pretty darn good.   Terin busted out two more batches of raspberry jam, Gavin froze enough for a raspberry sorbet, and I got 3 gallon size bags of frozen berries for everything else.  Not bad. 

I had decided before going to our weekly Saturday glean that I wasn't going to take any "extra" food.  I was too tired to process it and had plenty of other things to be doing right now.  WRONG!  Can you blame me?  There was a full box of perfect canning tomatoes.  I am certainly not going to let those go to the pigs if no one else wants them.    12 beautiful quarts later.... not to mention the salsa, and cucumber n tomato salad.   And these were yummy tomatoes.  Not the usual store bought with no flavor.  The tasted like they were fresh from the garden. 

So while I may have invoked my right to use a CFP to get my team to help pick berries, in the end it was so worth it.  Not sure what a CFP is???  Stick around... I'll tell you later.

 
 
I will leave you with this amazing recipe...
 
FRESH RASPBERRY CAKE
 
1/2 c butter softened
1 egg, room temp
1 c sugar
1c milk, room temp
1 t vanilla
2 c flour1 T baking powder
1 t salt
3-4 c berries
 
Combine all ingredients except for the berries and mix well.  Pour into a 9x13 pan and top with the berries.  They should almost fill the surface.   Bake at 350 for 35 mins.
 
Cool and then glaze with the following
 
1 1/2 c powdered sugar
1 t vanilla
2 T butter
2 T milk
 
This recipe is also delicious with blackberries.  I have tried it with frozen berries and don't like it as well, but you be the judge.  The combination of the homemade white cake and the fresh berries is pretty ridiculous.  Enjoy!!!