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.

Monday, June 24, 2013

An Old Aquaintance

The first week of the new round of treatments went well. A few hiccups, but overall not too bad. Get this. A very typical side effect on Taxol is neuropathy in the hands and feet. Guess where mine landed? My face! Oh Yah, cause that's not weird feeling like you want to scratch your numb tingling face and neck off. Brilliant!

The second and third week started off in a similar way. After chemo, there is a burst of energy from the steroids which lasts, and lasts. I stay awake all night doing.... nothing and everything. Insomnia?  Awesome! Tuesday morning is a blur. Then next few days I struggle. I realized that I was crashing throughout my days. I would start to feel like I was getting sick. You know, light headed, dizzy, hot, cold, then hot again, tummy growls and general blekkiness feeling all over. THAT feeling.   I discovered that I needed to eat quite frequently throughout the days or I would get this "crashing" sensation. Then, once I have indulged in some calories and protein,  rather than thank me, my stomach says what the heck am I supposed to do with this? And it gives me grief for the next hour or so. It's a lovely circle. The next thing I noticed was an ache in my chest and my heart was pounding.  This was happening a few times a day.  I noticed I was really struggling to get to sleep at night and then my mind would take advantage and run wild.  Really? This round was supposed to be easier. What's going on?

An old acquaintance had come to call. I didn't recognize my visitor at first, but slowly, after a week or more, the face became familiar. I love having company and spending time with family and friends even when I don't feel well. I welcome the distraction... but this was different. I didn't invite this acquaintance to come back. I think they knew they were unwelcome too, because they didn't bother to let me know they were coming. They didn't barge in and announce their visit. They just subtlety came in through the back door and made themselves comfortable.  I was never told how long they planned to be around and I certainly didn't get a room ready for them to enjoy an extended stay. Yet, none the less, I had a guest.

At first, I attempted to be hospitable and welcome my unknown guest with gracious hospitality. I made room in my schedule, cleared the evening calendars, and opened my heart to this visitor. I was attentive to their needs and gave without holding back. With each passing day I became aware that my visitor was taking up too much time and my chemo symptoms were getting worse. I needed to rest more. I wasn't getting enough sleep. I needed to take it easy and relax. My mind was on a roller coaster. I was starting to feel anxio..... anxious! Wait a minute! I know you! Your ANXIETY! You have not come to be an innocent guest. You have come to leach my energy, steal my life, and utterly destroy me. I recognize you and I assure you, you are most unwelcome here. I would never willingly open my home to you.... but without realizing it, I did. I would never invite you to reside in my mind and yet here you are.

I need to ask you to leave NOW! You're not wanted and I have other more pressing matters to attend to.

Monday, June 17, 2013

Chemo Day, Up Close and Personal

For today, no big long reading assignments..... just a few chuckles.   Enjoy!  We sure did!    

Monday, June 10, 2013

Chess Anyone?

I am happy to report to you that this last round of chemo went well.  And I mean exactly that.  They assured me that I would experience some side effects from the 50 milligrams of Benadryl like being sleepy, groggy even loopy.  It never happened.  My nurse stayed with me, dutifully explaining the side effects of the new chemo drugs and as she was winding down she says calmly, "but I don't think you're going to have a problem with it."    I asked how she could tell.  She replied that it had already been dripping for 30 mins. and I would have noticed some of the effects by that point. She had the best distraction techniques.  I didn't even realize she had already started it.  So 5 hours later, I had completed round 1 of 12 with minimal discomfort.

That night I was feeling remarkably better than with previous treatments.  The kids and I went for a walk.  A 2 1/2 mile walk actually.  It was great!  None of the weird brain humming noises.  No chemical fuzziness.  Really this week has felt pretty darn good.  I did experience a few symptoms, but when you compare it to the last round? this was minimal.  They were still annoying and uncomfortable at times.  Gentle reminders that I am still in fact fighting cancer and undergoing chemo treatments, but friends, that's what Tylenol is for.  And let's just say that my nurse is not the only one with great distraction techniques.  I am becoming a skilled master in the art of diversion.  If I don't want to think about having cancer and dealing with chemo, I fill my house with teens, snacks, and more snacks.  Done!  This trick never fails me and I love having them all around.

A few weeks back, a new friend from Boise asked me a question.  I think he just wanted to see where I was at mentally and to challenge me to really think about the cancer, and look past the obvious.  When I responded, I was kinda just throwing up whatever popped into my mind as I sat pondering the question.  He asked simply, "What am I gaining or learning about myself in this whole process?"  My response to him was this...

"I am gaining an empathy for others with cancer that before had been held at bay by fear. I am learning so much. One thing in particular is that it isn't always about me, even if it is about me. What I mean is that since I have allowed God to use me through this I have been put in the path of so many people that I would never have even met had it not been for this situation. I think this has strengthened my trust in God because he has allowed me to see some of the fruit. I trust him more with his direction for my life even when it doesn't make sense or I just plain don't like it. Another thing along the same lines is that it has slowed me down enough to see those around me more clearly. I am used to being fast paced, get it done, centered around my world, my kids, my families needs. I have said repeatedly, I wouldn't raise my hand to do it again, but I wouldn't change it either. I could keep on going. I am learning that God is enough, period, that Blizzards cure a variety of illnesses, and that it is overwhelming and humbling to be blessed by both friends and unexpected people. My kids and I have experienced an outpouring from very unexpected people and have been very touched. Sometimes there are no words really.
And...... that I am one bad ass cancer fighting chick, who intends to kick the crap out off this mess and come out of it with a cuter hairdo."

He asked if he could share my answer and I figured why not right?  The responses kinda surprised me.  People I didn't know sending supportive, kind words and prayers my way.  I know I was sure encouraged by a friend who shared openly about her experience and I want to do the same.  Sometimes I feel like I am a willing and active player in a super natural chess match.  I never know where the other team will make their next move or how it will affect my team, but I am engaged and ready.  Sitting on the sidelines passively watching is not what I am called to do.  If I had to say which piece I would identify with, I think it would be the queen.  Not because I want a crown, after all it really wouldn't fit well on my smooth, round, bald head right now.  I say the queen because she is agile and can move freely about the board.  She can move where she needs to move and defend whom ever she needs to defend.  She can go on the offensive and play aggressivly when it is necessary or sit back and wait for the opportune time to strike.  I want to be like this.  I want to be ready to move when he says move.  I want to act when the time is right and I want to be willing to sit and wait when prayer is what is needed.  We are all given a life time clock and the choice to play and stay engaged.  I don't know all the moves, but I am willing to learn and ready to play.  

You know, on second thought.... I am probably that crazy, wildly entertaining, often inappropriate, court jester who doesn't mind being being laughed at cause after all..... that's his (her in my case) job!  I got kicked out of the serious and intellectual game of chess because I laugh at my baldness, make ridiculous wise cracks about my cancer, and generally throw out all reasonable side effects in favor of an ice cream treat!  It's way more fun to laugh and it helps others feel more comfortable being around me.  I see this truth when I am around little kids.  They ask what's on their mind and are completely comfortable telling me how weird it is that I have no hair.  I make a goofy face, chuckle and agree whole heartedly.... and it's all very good.  These dear one's make me smile, a lot!

I had planned on sharing this entry yesterday, but that obviously didn't happen.  At this point in the day, I have completed round 2 of Taxol and Herceptin.  Once again, God allowed me to come through the treatment with minimal side effects.  I also got to have some great chat time with several different friends.  I realize this is going to sound strange, but cancer has been great for encouraging me to be purposeful and intentional with my friends.  I get to have some great conversations about things that really matter.  I will always treasure this and really hope to maintain this perspective.  We make time for what is important in life and I have a much clearer picture of that now.  

I know that many of you who read this are mighty prayer warriors, so I would like to call upon you for some overtime.  Several people I know are in need of prayer.

A very dear friends' daughter is in the hospital.  She had emergency abdominal surgery to fix a problem they didn't realize she had until now.  Prayer for a full and speedy recovery and peace for the family.

Another friend had brain surgery almost two months ago and is still fighting with seizures and balancing medication.  She is having to pray through a big decision this week and is looking for clarity and wisdom. 

A 10 year old boy is having to go through some major surgical procedures to remove or disconnect the left hemisphere of his brain to help control seizure activity. Wow!  10 years old.  Scary.   Prayer for him and his family in all aspects.  

Prayer for Chad, a friend who is actively purposing to help families going through major medical scenarios in life.  I pray for strength for him to walk along side those who are hurting, financial provision to make it happen, and wisdom to use his gift to honor and bless those he is in contact with. 

Prayer for a friends daughter and unborn grand baby.  Mom is experiencing some problems.  I pray that this little one continues to stay on the inside a while longer to develop strong healthy lungs and a healthy little body.

I have multiple people in my life right now who are experiencing depression and anxiety.  I pray Isaiah 26:3 for them.

I have at least two friends I currently know of that are on the cancer journey as well.  Pray that they would experience the presence of God and the encouragement of friends and family and healing for their bodies.  

And I know 5 people who are several years along in their fights and are at varying different places in that.  I pray for continued strength and hope. 

I would love continued prayer for my cancer journey.  I find that I get tired more often, I have aches and pains in weird spots, and I wrestle with not over thinking things.  I know the road ahead is long and at times that feels discouraging and I can find myself feeling down.  I continue to feel this strong prompting to write, so I would ask for prayer that I am sensitive to the Holy Spirit and what it is he wants me to write about. 

 We are happy to celebrate with the following graduates:  Christian, Shanti, Sarah, Joy, Sarah, Alex, Hope,  Autumn, and almost Mark.  Way to go guys!!!

Find rest, O my soul, in God alone; my hope comes from him.  He alone is my rock and my salvation; he is my fortress, I will not be shaken.   -Psalm 62:5-6

Monday, June 3, 2013

What's Really Under that Hat?

As you can see, I am getting a little more comfortable with my current hairstyle.  Hey, at least I can be showered and ready to go out the door in under 15 minutes.  Now that's something.   Once again, Tristan helped me out with some pictures, so now you can see the actual head shots.  It was strange to get used to at first and I have to say it took me longer than it did for the kids to adjust.  Most of the time I wear a bandanna or a hat, but I do have some fun wig choices too.  And if I am just putzing around the house or out watering the garden, well then I go el natural.  Well, my head does anyway.  And would you check out the shape on that noggin!

Last week at our school, a young man showed up with a sling on his arm.  Now this young man is an active, crazy, hilarious kind of a guy and I love his quick wit, but he always seems to be doing something to hurt himself.  As he approached, I looked at his injured arm and asked in mock dismay "What is this?  What did you do now?"   He quickly raised the non gimpy arm, pointed to my head and said, "Well what is this?  What did you do?"   That is what I love about him and that is the perfect attitude to have with your bald chemo friends.  Keep it coming!  and I promise to have an endless supply of Otter Pops waiting for you.

I made it through the final round of the AC chemo drugs.  It wasn't easy and I eagerly looked forward to feeling better, stronger, and more energetic. What "they" said was true.  It takes longer to recover after each treatment.  Then I found out because I was going back to having my chemo infusions on Monday, and Memorial Day was on a Monday, I would get an extra 5 days off.  Boy do those extra days make a substantial difference in how I feel.  I felt really good this week.  It was great timing too.  This was the kids end of school concert, recital, and drama performance week.  It was so nice to be able to attend everything and feel almost normal.  I realize that is a stretch especially for me but, it really was a great week.

I received another piece of really encouraging news this week.  I had the follow up echo to see if there was any damage from the Adriamiacin.  While this test is basically an ultrasound of the heart, which you think would be relatively painless, I assure you it's not.  They have to maneuver the little device in and around and sometimes right on through your rib cage.  Then, when they get the desired angle on your heart that they are looking for, they ask you to exhale all the air in your lungs and then HOLD it.  Hold it?   Hold what?  There's nothing left to hold.  I have to admit that a few times, I could hold it no longer and thought I would sneak a little hit of air.  The tech nicely informed me that she could see when I was breathing and if I needed a break, just let her know.  Dang it!  Busted!   Anyway, when all was said and done and my oncologist gave me the results, they said my heart looked great.  No permanent damage.  Thank you Lord.  The next drug, Taxol, can cause temporary problems, but nothing permanent.  I will have to have echo's every three months just to keep tabs on the ol pump.

Today begins the second phase of my chemo treatments and as odd as this may sound, I am a bit nervous.  Once again I have to wait and see how my body responds to this new drug regimen.  It will include Taxol and Hetrceptin.  Taxol is the chemo portion that I will be getting weekly for the next 12 weeks.  It brings with it some new potential side effects to add to all the others like hand and feet neuropathy, diarrhea, more chemo fog, (cause I haven't had enough of that yet,) continued fatigue, and more hair loss if that's even possible.  As you can see I still have my eye brows and eye lashes.  I am hoping I get to keep them, but who knows.  Although there is potential for all of these, I am told I should fare quite well considering how I made it through the first batch.

 During the first treatment, they load you up with Benadryl before they drip the chemo.  They also keep a more watchful eye one you during the 3-4 hour infusion.  They do this in case there is an allergic reaction to the drug.  Really?  We are trying to kill any stray cancer cells with highly toxic chemicals and their worried about allergic reactions?  Bring on the Benadryl and keep it coming.  Let's kill these suckers and be done with it!  Just sayin.

Herceptin is a different drug that I will be getting since my cancer was HER2 positive.  This will continue every 3 weeks for a year.  Then I am looking at two more surgeries next summer.  When I tell people this they are a little shocked at the length of this process and I have to admit it does seem like the road keeps on winding up ahead, but one of the things I am learning is to live more in the moment and to enjoy each day.  While I do love to be spontaneous... when the house is clean, the dishes are done, the garden is weeded and the bills are paid..... I tend to be a planner.  I look ahead and try to anticipate what's coming and plan accordingly.  Now I realize there is a time for being prepared and that it can be very beneficial for many things, but I am also learning to take some things day by day.  For Instance, it doesn't do any good to look at the year to come and be discouraged by what I can't control.  Instead, I will go forward day by day, treatment by treatment and just take it as it comes.  So far I have been pleasantly surprised by who and what God has brought along this walk way.  I have learned many things, but that's another blog.

This probably is too, so just pardon the chemo brain cause I wanted to share it.  The Cancer Center (Spa) does a lot to assist in patient recovery and wellness.  They offer Yoga, classes to help you look good when your not feeling like you do, meditation, massage, and acupuncture and weekly art classes.  I have been going to the art classes.  The first week was acrylics and boy was I the new kid in class.  I think I frightened the hair right off that poor teacher.  After some careful pointers and some gentle instruction, she led me to a finished product I was pretty proud of.  I was able to attend a water color class and a Golash class as well.  I am not even sure that is how to spell it, but it has been my favorite medium so far.  It is like watercolor only opaque. So you can just layer the colors, one on top of the other and mistakes are easily covered over and the picture keeps growing and changing as you layer the different shades creating even more depth and texture.  It is a great way to let everything else go for just a minute and focus on what's in front of me.  Each week at the end of class, we all stand at a distance and admire each others artwork.  We have learned how personality and attitude come out in our art via the color choices and the brush strokes or paint application.  So far, all three teachers and fellow artists have said my art looks happy and joyful.  I found that very interesting. Regardless of whether or not I know how to hold the brush properly and keep correct balance or movement in my paintings, and even if I don't know what I am doing, technically speaking, the joy of the Lord is flowing out of me and right into my art.  I truly believe that "A joyful heart is good medicine, but a crushed spirit dries up the bones."  Proverbs 17:22