Archive | September 2012

Front seat Forerunners

Kingda Ka is the world’s tallest coaster and the fastest in North America.  It goes 0-128 mph in 3.5 seconds taking you 45 stories high. It is over way too quick but it worth it if the line is not too long!  It’s amazing from the start.

Even in mid-life, I enjoy roller coasters.  They are still my favorite ride at amusement parks.  I can easily bypass any rides in the park that spin or leave you hanging upside down for an extended period of time but not the coasters.  The faster they go, the higher they go, the bigger the drop, the better they are. Maybe I like them because they remind me of life…lots of ups and downs, twists and turns in different directions, uncertainty at times while we try to stay on track with our lives.

We made our annual trek to an amusement park at the end of the summer.  I told my kids that this year I might just bring a book and sit as I didn’t think I would have the energy and stamina to do all the walking and standing and waiting having just finished my  chemo sessions.  Once there, however, I was just as excited as they were to get on the coasters.

It was not a busy day, lines were not long, and except for a few that really bang you around a lot I went on them all.  In fact, some we rode several times.  I had never  ridden in the front seat before.  Usually the line is too long to wait for the front but this particular day it wasn’t.  I wanted to see what all the hype was about riding in the front seat.  Well, let me tell you, it is definitely worth the extra wait.  It was like a whole new ride.  I had ridden in the second row and just moving up one more seat to the front gave it an entirely new feel.  You know how once a coaster gets up to the top of the first big hill it takes a few seconds to wait for the tail end to catch up?  Momentarily suspended over the crest of the hill and looking directly DOWN at the ground with nothing in front of you is awesome.

Nitro is my favorite coaster of all in the park! I love the freedom you feel without all the seat restraints.

The real surprise came on the descent and for the duration of the ride as we quickly picked up speed.  In the front seat there is NO resistance in front of you.  The wind is so strong blowing against your body.  I kept my eyes partially closed for fear that my contacts would be blown out.  I tried to keep my mouth closed in case any bugs  flew into it but it’s hard to scream with your mouth closed.  Before the ride started I tied my chemo  head scarf under my chin as well so it wouldn’t blow off!  That made for a funny photo on the ride when they snap the picture.  It was thrilling being in the front row!

I thought about how being in the front and taking the brunt of what’s coming and smooths the way for those that follow you.  Even riding in just the second seat, the wind paled in comparison to how strong it was in the front seat.  It made me think of how far cancer treatment has come with the years with research and clinical trials that patients have subjected themselves to.  When I started treatment I was asked if I wanted to be part of a clinical trial that I was eligible for because I am HER-2+.  I was handed pages and pages of information about the study to read.  I had a 50/50 chance of being placed in either the group with the experimental drug or the placebo.  It was double blind and therefore my doctor would not know either.  The duration of the study would be for 10-13 years and would include additional tests, visits, and follow-up during that time.  I was told that if I was receiving the experimental drug that I may or may not benefit from it.  In addition, having to be infused with one more drug would mean an even longer time spent in the infusion center with each chemo session.

El Toro is fun to ride. It is the third tallest (188 ft) and the second fastest (70mph) wooden roller coaster in the world.

As much as I would like to do what I can for cancer research and in addition possibly help my own cancer battle, I chose not to participate in the clinical study.  My time is too valuable and my schedule does not allow for any more involvement than is absolutely necessary.  I could not commit to additional visits, tests, and check-ups over the next year, let alone the next 10-13 years.    I already do not like the fact that I have had to have any kind of drugs infused  in my body, especially one that is not approved.  If I did commit to this I would want to know that I was getting the drug and not a placebo after all my time and effort.  Others obviously feel differently but for me I could not make this commitment.  We owe a lot of gratitude to those that DO make that commitment and participate in clinical studies.  Without them we wouldn’t have the approved treatments that are being used today.  My hats (and hair) off to you!  These are the forerunners, the front seat riders! I applaud you! Thank you!

I thought of another forerunner, John the Baptist.  He was Jesus’ cousin who prepared the way for Him.   Luke 1:76 says,  “And you, my child, will be called a prophet of the Most High;  for you will go on before the Lord to prepare the way for him.”   Jesus is also referred to as a forerunner for us, as high priest entering the holy of holies (see Hebrews 6:19-20).    Psalm 59:10 says, “God will march out in front of me.  He will let me look down on those who tell lies about me.” (NIRV) “I will go before you And make the crooked places straight.” (Isaiah 45:2 NKJV)  He  has gone already and ascended into heaven ahead of us and is preparing a place for us to live eternally (John 14:2).  How exciting that He made the commitment to make a difference in all of our lives, assuming all risks which for Him included death, so that we would be spared the side-effects of a fatal disease called sin!  He has conquered “the resistance” for us!  WOW! Now that’s a true front seat rider!

Good News Update

9/22/2012 –

Radiation: Good news, my radiation appointment time will be moved up to 3:45 pm (from 7:45 pm) starting on 9/28.  This will be so much more convenient as I will be able to go for treatment right from work instead of driving back each evening.  This will save not only on time but on gas!!!!  The other good news is I have not felt fatigue from the radiation and have a lot of energy throughout the day.

Weight: Not losing but maintaining. I will take no more gain at this point! I had started walking and even a little jogging but then went back to work once school started and have not been able to fit it in.  I need to add some form of exercise into my schedule.  Hopefully once my radiation schedule is changed and I have a more normal schedule it will be possible.

Skin deep Beauty

I have tried to take advantage of the different workshops and activities offered through the cancer department at the hospital I am treated at.  One particular class is a two hour workshop on how to make yourself look beautiful so you  can feel better about yourself while going through cancer treatment.  Due to scheduling difficulties I was not able to attend one of these until very recently and had to drive a little distance to a different hospital in order to attend.

When I entered the conference room I felt like I was walking into a little girl’s princess birthday party.  The table had little mirrors standing up at each place with bags of makeup and various things at each place.  The only thing missing was cake but they did have bottles of water for everyone.  We sat on sides of the table depending on the color of our skin tone because the makeup kits were arranged that way.  It didn’t take long for all of us to start meeting each other and sharing where we were in our treatment, comparing hospitals, side-effects, etc.  Again, it was that cancer camaraderie as we were quickly joined in sisterhood.  During the course of the night, the “host” had to ask everyone to be quiet several times because we were so wrapped up in conversation.

Our “host” spent the evening “demonstrating” not only how to put makeup on but instructing us in the order to do it in.  There were twelve steps.  No one had told  me I was going to a twelve step program!  “Hi!  My name is Sue and I am a recovering cancer patient.”  I said our host was “demonstrating” in quotes because she never took her makeup off at the start and never actually touched her face with anything the entire evening.  She also was not allowed to physically help any of us or apply makeup to our face but was only allowed to demonstrate, so demonstrate she did by pretending to put it on her face! It really was quite comical.  Just as comical was the sorry looking lot of us.  I think the majority of us were the type that hardly wore makeup even when we didn’t have cancer.  Either women were there looking for a social gathering or the fact that we normally don’t wear much makeup meant we really needed this class especially now!  I was amazed at all the different products to use.  What was really nice is that companies donate all the products and we were each able to leave with a large bag full (our goody bag from the “party”).

In addition to the makeup, we also had a brief session on wigs although I think everyone there already had a wig.  Different types of hats and head coverings were also shown.  I must say that all of us did look very pretty by the end of the evening and probably felt a little better about how we looked at the moment anyway.

The next morning I was excited to try to repeat what I learned the previous night after I got out of the shower.  I opened the bag of supplies I was sent home with and was dumbfounded.  What was I supposed to put on first?  Twelve steps were far too many to remember this early in the morning.  Okay, I lied.  It’s too many steps to remember at any time of the day!  Which one is for the eyes?  What direction are you supposed to start applying from?  It was time consuming too.  Remember how I said it was so quick for me to get ready for work now that I have no hair?  Putting on all the stuff to make yourself look beautiful is very time consuming!  I decided after that first morning that I would stick to just a few simple things so my eyes and eyebrows can be seen since my lashes and brows are gone.  It helps to give others something to at least focus on and know it’s your face they are looking at.  Other than that, I’m still me and am happy being plain me.  I do congratulate all you beautiful looking women knowing the time it took for you to get ready!

I met a woman at radiation who told me she was going to get her eyelashes “done.”  I didn’t know what she was referring to and she said you can get individual eyelashes applied/glued on to fill in places you lost them during chemo.  I asked her where you go to get that done assuming it was some expensive type of salon and to my surprise she said, “Walmart.”  Now that sounds like something doable in the future.

It’s important to take care of yourself and to look presentable but we don’t all need to look gorgeous everyday unless we’re a model and even then someone else does it all for you.  It’s fun to dress up and follow the 12 steps if we’re going somewhere special or for a certain occasion but that’s not for me on a regular basis.  I tend to believe that real beauty is deeper than skin deep.  Proverbs 31:30 reads, “Charm is deceptive, and beauty is fleeting;  but a woman who fears the Lord is to be praised.” (NIV)  1 Samuel 16:7 says, “The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.”(NIV)  In Galatians 2:6 it says that God does not judge by external appearances.  “ Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.” (1 Peter 3:3-4 NIV) I’ll take striving to be a model for inner beauty any day over outer beauty.  I’d rather spend my time and effort working on the inside than the outside.  You know what, I feel better too!

Do you need to hear that YOU are beautiful?!  Check out this link to “Beautiful” by Mercy Me:  http://www.youtube.com/watch?v=bmUfJtsaqps&feature=related

Radiation Rendezvous

Well I entered the next “phase” of my treatment, radiation.  For me this involves a nightly rendezvous I could sum up as “ladies night out at the spa.”  I get to go a total of 33 times consecutively with my membership, Monday to Friday.  Right now they only let me enter the club at 7:45pm but I am hoping an earlier time slot opens up.  I get preferential treatment with a parking spot twenty feet from the radiation unit’s door with my own parking pass.  I disrobe and put on my spa gown depositing my clothes in a locker and then get ushered to the desk, checking into this elite club by confirming that “yes,”  it is my mugshot on your computer screen and announcing my birthdate once again.  If I had ever forgotten my birthday by this point in life, it has been drilled into my brain over the course of treatment where I have confirmed it what seems like thousands of times over the past 5 months!

Next, my two personally assigned radiation therapists bring me into the spa room for my workout.  They prepare my bed just for me, to my specifications.  The only problem is that I was never consulted.  The “bed” they use was designed for giants.  I am 5′ 7″ and they have to give me a step stool in order to climb up on this bed.  I’ll never understand how a bed that moves in all kinds of directions can’t be made to be lowered to a comfortable height to get on to!  You literally have to climb up onto the bed, take your arms out of the gown, and kneel on all fours.  Picture this!  The bed is split and there is a space that you have to reach across and get your hands to the head part and lay face down in sort of a superman (or superwoman) pose. There are even hand grips to hold onto above your head.  The first time I saw these I wondered if the bed was going to rotate and if you could use these to hang on to so you wouldn’t fall off.  Next I have to bend my left leg and cross my foot over my right leg.  I have to try to rest and put my weight on my right hip.  It’s like playing the hokey pokey while laying down.  This is just what I have to do.  They actually have a photo of me in “my” position on their computer so they know what I am supposed to look like on the bed, taking out any guesswork.

This is my spa bed. Take particular notice of the contour of the surface where your chest goes.

Now the therapists do their part.  They push down on different parts of your body and tug and pull the sheet underneath you.  They tell you not to help them and they readjust your body, stretch your arms, re-position my breast to fit on my pattern they drew on my mold, tell me to scoot down a little farther, relax my shoulder, etc.  I guess this is getting a workout without having to do the work yourself?  If you are comfortable then you are not in the right position!  One definite is that your rib cage has to hurt as it presses against the table where the opening starts. They call out numbers.  My magic number is 92.4.  Maybe it’s a favorite lottery number? They work in a semi-dark room…I think this is for the spa effect.  There is music playing.  It’s a laser show as well as they line up lasers with the tattoo marks they have placed on my back.  But wait.  At my age there are also moles and beauty marks.  Did they line them up with the right markings on my back?  I often wish they had tattooed numbers by them as well to make sure they line up with the right marks!

Then the therapists leave the room.  They told me the first time that once they leave they can see and hear everything from outside.  I felt like a little kid being left in a classroom as the teacher steps out.  What was I really going to be able to do in that position high up on a table with a dressing gown slightly covering me?  Who would want to go through all that re-positioning a second time in one evening anyway?

This is the “spa” version you think you are getting. (Image courtesy of Varian Medical Systems, Inc)

The table moves forward and up and the radiation turns on for a minute or so blasting only the breast I had the lumpectomy on from one side.  This breast is hanging below in the cutaway part of the bed.  The rest of me is on the bed and protected from radiation.  Then the machine completely rotates around and does the same thing from the other side.    It does not take long at all and you don’t feel anything which is great.  I wait for the stool to be put back in place and climb down to go get changed.  It would be nice at some point if I got a massage while I was still up there or cucumbers on my eyes or a manicure or something but for now I will have to settle for zapping any remaining cancer cells.

As for side effects, my pee is not glowing and I haven’t picked up any martian signals yet.  I’ve been told it could make me a little fatigued but I haven’t felt any different.  I have to use a lotion daily after my treatment to prevent skin irritation.  It reminds me of Crisco in appearance and consistency.  I haven’t tried cooking with it yet but may if I have some leftover once I’m done.

Did I mention that there were “rules” while I am going through radiation?  I was told that I could not shave my underarm on the side that is being radiated.  Well, I still don’t really have any hair growing there since chemo so that isn’t a problem.  You won’t have to worry about me having a hairy underarm!  I can only use a certain natural deodorant or cornstarch.  I can use Dove or a mild soap to shower and then pat the skin dry.  No under-wire bras allowed.  I cannot take more than 100% of the daily recommended dosages of A, C, E, CoQ10, and selenium (antioxidants).  Limit green tea to one cup per day. Okay, so cut out everything supplement wise that IS good for you if you are having x-rays.  Avoid direct sunlight on my breast.  Well, aside from the fact that summer is over I don’t sunbathe topless anyway.  I also have to apply Crisco, I mean that lotion to my breast after each treatment.  I guess if I break the rules they will cancel my membership and take away my parking pass.

I realize that rules are put in place with our best interest in mind  and for a reason.  All the re-positioning and lining up with lasers and marks and numbers are to make sure you are at the right distance from the machine and in the correct position to receive the correct dosage of radiation in the exact place that you need it.  Each patient is different and needs to be in a different position to get radiation exactly where they need it.

It’s amazing when you think of the accuracy and precision involved in trying to get the radiation to get just the area that had the cancer cells and try to spare as many good cells as possible in the rest of your body.  Hebrews 4:12 says, “ For the word of God is alive and powerful. It is sharper than the sharpest two-edged sword, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires.” (NLT)  God’s Word is even more precise than a laser beam of radiation with all it’s technology involved.  It can cut between the soul and spirit of man, between the joint and the marrow.  It’s so accurate that it’s truth can expose our innermost thoughts and desires!  And it never makes any errors!  God was light years ahead of radiation!  Amazing!  Isaiah 55:11 says, “so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.” (NIV)  God’s Word accomplishes what it is sent out to do.  I can only pray that the radiation sent forth to my body does the same!

 

 

Cancer Camaraderie

Well today I was fortunate enough to attend the “Celebration of Life” luncheon given in recognition of the 25th Annual National Cancer Survivors Day, given by the The Cancer Program at the hospital I receive my treatment from.  I really wasn’t sure what it was going to be like but the keynote speaker looked interesting, I was available, and it was free.  I hadn’t invited anyone to go with me because I wasn’t real sure what the whole thing was going to be like.  On the way there a major road I needed to access was closed at the entrance ramp and detoured me in the opposite direction.  Upon finally getting turned around all three lanes went into one and I found myself sitting in traffic thinking I would be very late.  I was ready to turn around and just come home but I am so glad I didn’t.

Upon arriving I assumed there must be other functions going on with all the cars and people dressed up.  I was greeted warmly at the door and to my surprise there were no other functions going on.  The place was filled with 700 people, mostly cancer survivors, some doctors and staff, and some friends.  Remember I said I came alone?  At this point it was easy to find seating for one and just look for an empty seat.  I tried to pick a table of women around my age and sat down.  A waitress took my order and when the food was served I had a delicious salmon dinner.

The speaker was a comedian who was also a juggler and an author but more importantly is a 20 year cancer survivor.  His message on surviving with a positive attitude was filled with jokes that especially appealed to anyone who has undergone cancer treatment and dealt with hospitals and doctors.  We laughed repeatedly.  He even entertained us by juggling.  We all received a copy of his book to take home as well.  I was so impressed that even in a room of 700, my oncologist recognized me, came over, called me by name and welcomed me!

As much as I enjoyed and appreciated a free luncheon with a delicious meal and entertainment, I enjoyed even more getting to know the women at my table.  I think within a few minutes after a round of introductions we all felt so comfortable with each other that it seemed like we had known each other for years.  A mixture of ages and races didn’t separate us.  It was like the “Sisterhood of the Traveling IV’s.”  We shared our stories with each other and had a common thread.  We could easily relate to each other and laughed at similar experiences.  We all agreed to come again next year and sit in that same area of the room to find each other.

I find this is true not just with strangers I meet that are cancer survivors, but even with acquaintances I already had.  Once I was diagnosed, I immediately sought out others that I knew who had been through a cancer diagnosis and treatment and felt a certain kinship that wasn’t there before.  I think this happens because until you receive a cancer diagnosis yourself, it’s hard to know exactly what that feels like.  For those of you who are fortunate enough to not have received a cancer diagnosis, you’re unfortunately not part of our club!

2 Corinthians 1:4  says, “He (God) comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.” (The Message Version)  Hebrews 4:15 says, “ For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin.” (NIV)  We all need each other and it’s so important for us to encourage one another, especially when you can totally relate and understand what someone else is going through.

My hats (and hair) off to others in my cancer kinship club!  We will survive!

Herceptin Highlights

So” chemo”  is over for me now but I still need to get an infusion of herceptin every three weeks until May 2013 (a full year).  This was the one drug that gave me a problem each time I was receiving chemo and would literally burn as it started going in my veins.  Through trial and error we found that extending the infusion from 30 minutes to 45 minutes and diluting it with a bag of saline would prevent the burning from occurring.  Even so, I was nervous about having to receive a herceptin infusion for a year.  On Wednesday, 9/5,  I had my first “herceptin only” infusion and except for having to get stuck twice to find a good vein, it went well.  No burning!  Of course, I had to tell them what to do…I don’t understand why with technology they can’t include this information on the computer screen they bring up for me when I go.  It should be listed there…whatever.  I was surprised that I wasn’t in the short-stay room (for infusions under one hour).  I was looking forward to sitting there talking to other patients during the infusion but was in a private room once again.  It worked out okay though as this was after a day at work and I am still a little tired getting back into a new routine so I was able to take a little snooze.

Herceptin is for treatment of early-stage breast cancer that is Human Epidermal growth factor Receptor 2-positive (HER2+) which is what I am.  It is an aggressive early stage breast cancer that about 30% of women with breast cancer have.  The HER2 gene makes a protein (HER2 receptor) which is like an antenna on the surface of cells.  These receptors receive signals that tell it to grow and multiply.  Breast cancer cells can have as many as 2 million receptors on the surface compared to a normal breast cell which only has 20,000 receptors.  Cancer grows and spreads rapidly.  This is why  I was so thankful I was diagnosed while I was still in stage 1.  Herceptin is the only approved treatment for HER 2+ cancer.  It attaches itself to the receptors and blocks them from receiving growth signals (extracellular), slowing and stopping the cancer.  Herceptin alerts the immune system to destroy cancer cells it is attached to, while leaving good cells alone.  It also blocks intracellular HER2 signalling.   In studies, women who received herceptin for one year had a higher chance of remaining cancer-free longer when compared to women who did not receive herceptin.

http://www.aboutcancer.com/herceptin_0211.htm

Yes, there are side effects.  Is there anything medically related that doesn’t these days?  I’m not concerned with fatigue and the others but the more serious and less common is that it could cause damage to the heart and lungs.  Because of this I have an echo-cardiogram periodically and they are always listening to my lungs.  Thankfully all is well.

You would think that it would be a good thing to have extra antennae or ears to pick up signals and grow…except when we’re talking about cancer cells.  As humans, we have to be careful about what the antenna in our lives is picking up and what signals are being transmitted to our inner core.  Proverbs 4:23 says, “Above all else, guard your heart, for everything you do flows from it.” (NIV)  We need to be careful what we allow our eyes to see, our ears to hear, and places we allow our feet to take us to.

Next week radiation starts and I’ll update you on that.