Warning: you will need Kleenex while reading this....

I cannot take credit for writing this, although I could very well be the author.  I think any cancer patient could be the author of this.  I thought about whether or not I wanted to post it, but I think it is important for you, the reader, to understand what is going on in a cancer patients head.  I also want each and every one of you to never take your health for granted and take the time to take care of yourself.  Maybe if I had taken the time to focus more on myself, I would have found my cancer earlier.  I also pray that as I move from cancer patient to cancer survivor, these feelings will not be so strong.  I never will forget, nor do I want to forget.   There is a lesson in all of this.  I believe that with all my heart.  I am a teacher, and always wanted to be a teacher, ever since I can remember.  And everyone knows teachers do their best work when they lead by example and create concrete life experiences for their students. 

My thoughts follow the posting.

Holding Hands with Cancer



Allow me to educate you a bit on what life is like when cancer is holding your hand:


- You feel as if you have been handed a death sentence when you don't understand what the crime was


- You want to weep every night at the thought of your child's future without you by his side as he reaches each milestone in life


- Your heart breaks a little every day when you think about life without your parents, your family, and especially your spouse/partner because it was cut short by the cancer


- You ask your husband every night if you are going to live a long life, if you are going to be okay


- You realize what hell on earth really is like when you sit through 4 hours of chemotherapy every 2 weeks for 4 months, watching the red poison enter your battered and bruised arm because your veins are bad; then you go home and wait for the nausea, disorientation, the discomfort, the pain, and headaches to begin, then just as it ends, you go in for another dose.


- You watch through saddened eyes how quickly your parents have aged through all the chemo and surgeries, how stooped your husband's shoulders have become and how big your child's eyes are when he asks if mommy is feeling better


- You struggle through the fatigue, the pain and the second degree burns that radiation causes as you drive to the hospital EVERY day for 6 weeks to "excise" whatever cancer may be left


- You battle with weight loss, then weight gain, hair loss then hair gain and start to realize how vain you used to be and how little that matters in comparison to just making it through this day and the next


-You worry about your financial situation and make sacrifices in order to provide for your child so that he is never to go without even if you and your husband do because you cannot work


- Your heart aches every time you think, talk, or imagine what your future holds as now your mortality is in the hands of cancer


- You tell yourself: please let me live another day, survive another scan, move ahead with my life without cancer and cherish every birthday, holiday, anniversary that you are able to experience and celebrate and hope that you make it to the next


- You bargain with God, Buddha, Allah, Ra, Zeus, anyone that you think may hear you - let me live long enough to see my son grow up to be a man, though I will never EVER stop fighting!


- And you always ask "Why me?"


Now, my thoughts. 

-I don't feel like I have been handed a death sentence, but rather, the fact that none of us are immortal has been shoved in my face, decades before I wanted it to be.  I do sometimes wonder what I could have done that was so wrong, to deserve this.  

-Sometimes when I can't sleep I will sit on the floor in my children's room and watch them sleep, give them kisses, cry and pray to God they don't have to grow up without a parent.  I love them so much and want to protect them from the pain and sadness in the world.  I just want to keep them safe and happy. 

-I try not to ask people if they think I am going to be ok, because who wants that guilt if things don't work out the way we'd like them to?  I do say that I'd like to survive this, and live for decades.  I struggle with some situations as I'd really like to say sometimes if I'm not here for blank blank, this is what I'd like to happen, but people don't like to hear that.  However, how will I make sure things I feel strongly about get voiced, or carried out if the outcome we all pray for doesn't occur?   I'd like to ask my doctor if she thinks I will live a long time, but I am afraid of her answer. 

-My chemo was 27 weeks long, every Thursday.  Usually it was my mom who came with me, but I did have a good friend come with me a few times, as well as my sister in law, my dad and husband.  It was hard hearing my name be called each week, Kari Lynn, like when I was 8 and did something to get in trouble.  Before I was diagnosed, I used to make the joke you know it's serious when they call you by your first and middle name.  Loyola always calls me by my first and middle name.  The waiting room was almost as hard as Loyola did not give me a regular time so there were always different people in the waiting room.  The second glances as I walk by, the heads that pop up from their magazines when the nurse ask me to verify my birth date and they hear 1976.  Doctors and nurses have walked into the exam rooms and turned to my mom, rather than me.  Assumptions.  You know what happens when you assume.  Each week it got more routine, but it never got easier.  Although there is comfort in routine and knowing what to expect.  A few times tears would run down my face as they would push that red poison in my port, knowing that I would feel terrible for the next four to six days.  Knowing that the next week I'd be back again, doing it all over again.  Praying that this medicine works. 

-The effects of my diagnosis on my family is devastating.  The writer has nailed it.  My parents and my husband have aged so much this past year.  My children are terrified.  I am devastated that I have brought this situation into our family.  I know I didn't do anything to bring on this cancer, but I have a lot of guilt for my diagnosis brought this pain and sadness to my family. 

-I am in the first week of radiation now, and am going to have the same attitude that I had during chemo.  I know what people say, but that doesn't mean that it is going to happen to me.  I will deal with the side effects as they occur.  I will believe that the pain is temporary, but the effects will help me live a long life.  I will take it one day at a time. 

-Self image is hard, and I am just going to roll with it.  I am not letting my body define my image of myself.   

-The finances are hard, but so many people have contributed to the bank account, held fundraisers, brought us dinner, that this is not as big of a burden as it could have been.  So thankful for all of you!

-My future is uncertain, yes, but guess what? so is everyone elses.  I imagine myself doing all the things that I want to, and hope that I can see these visions through.  I imagine myself at my children's first day of each school, their graduations, weddings, birthdays, births of their babies and my 50th wedding anniversary.  I even imagine my children screaming they hate me and slamming a door in my face when they are teenagers!  Yes, sometimes these visions make me cry, but it also gives me the strength to fight on the hard days. 

-I don't bargain with God anymore.  Although I did in the beginning.  But what I asked for, or bargained for, was for my loved one's lives.  I would take this disease, if that meant that it protected the ones I loved from ever developing this disease.  I also ask God to please don't let me suffer terribly from this disease. 

-I don't spend a lot of time asking why me? Why not me? Why anyone?   I wouldn't wish this on my worst enemy, and I don't spend time trying to figure out how there are murderers and rapists in this world walking around healthy while someone like me who just wants to raise her little family and contribute to society while she does it, can be struck with this illness.  There isn't an answer other than life isn't fair. 

What this doesn't mention, is what this cancer has given me.  The support and strength of family and friends, community members and strangers.  The chance to let people know how I feel about them, and the chance for people to tell me how they feel about me.  The chance to show the world that this can happen to anyone, at any age and to be aware of your body and advocate for yourself.  The chance to treasure each day, each moment and each occasion. 

Trip to Onalaska, WI

Last weekend I picked James up early from school on Friday, we dropped Katie off at Mama Diane's and James and I headed to Onalaska, WI to visit our friends Reg, Alex, Nick and Nate.  They used to live in our townhouse complex until this past August.  This is the longest car trip James and I have taken and I was a little nervous on how he'd handle it.  It went very well.  James entertained himself nicely on the way there, no sleeping like I'd hoped!  He drooled as we drove past the Wisconsin Dells, I promised him a trip next spring, and marveled at all the interesting things we passed on our four hour drive.  Here are some pictures from the trip....

                                                                       Alex and Nate

    Such city slickers...  had no idea what this was and then once I did, maple syrup collecting, I had to take a picture of it!

                                                               beaver dam

The beavers were gnawing on this tree and the boys were trying to finish the job...

playing alng the river.  there are 7 rivers that converge here, and train tracks that run by it too.  james could have played here all day..

                                                             A happy mommy and james!
Thanks alex for a great weekend!  we hope to visit again soon!!!!

Update

Just wanted to give you all un update. My surgery went well. Jay took the kids to school in the morning and then we left for the hospital about 10am. Got there, checked in and was put into a surgery prep room. Jay and I think it was the same room I was in when I had my knee surgery last year. Got the surgery rolling about 12:30 and left the hospital about 4:30. I want to thank my mom for picking Katie up and taking care of her in the afternoon. I also want to thank my sister in law Tracy who picked James up from school and entertained him until bedtime.

I am sore and a little swollen, but nothing compared to my last surgery. My mom stayed last night and will stay tonight too. The kids are enjoying playing with her dog, especially Katie. I am a little freaked out thinking I still have another surgery to go, but I just have to think about something else. Take it one day at a time.

I have my dry run radiation tomorrow morning at 8:45. Then, I'll start treatment Monday. One step closer....
Thanks for all your prayers and concern.

they found each other!

After a whole year apart, they found each other!  Maybe I can find myself again after this year too....

OMG!

So, there is really no time to post this as I like to sleep until the last possible second and then run around like a crazy peson getting the kids out the door to school, but I was just so excited I couldn't wait....
I went downstairs to make the kids breakfast and was hearing a weird sound.  After a few minutes I realized it was a bird.  Duh, haven't heard birds in a while.  It kept going so finally I looked out the window.  The SAME MORNING DOVE that made a nest in my flower box off the second floor deck is back!  (postings in April and May talk about it if you want to read, see picutres). The kids are so excited and so am I!  I wonder if there will be another nest?  I tried to take a picture, but I scared the bird away.  Will try again later.  Yeah!  Spring is coming!  My journey was starting while they made their last nest and laid eggs last spring, and maybe as my journey is ending we will watch the same thing again! 

New Plan....

Hello everyone, a quick update to the new surgery plan.  My surgery has been rescheduled for the 23rd, and they will take my port out then as well.  I will go for my "dry run" practice radiation appointment on the 25th and then start radiation treatments on the 28th.  I am planning on 5.5 weeks of radiation, but have not heard the final number of treatments.  Again, after radiation then I have to wait about a month and have the final reconstruction surgery done.  I am assuming the reconstruction will be done around June 2nd, exactly one year after my initial surgery, the double mastectomy.  I find that very fitting, and view it as a complete book that starts and ends on just about the same date.  I also like that as it goes along with this "never going to happen again" metality.  I feel like I keep getting these little signs.  For example, I had 27 chemo treatments that ended on Jan 27th, my upcoming surgery, is a second attempt, and involves three parts, and is occurring on the 23rd.  And I am having roughly 28 radiation treatments that start on the 28th... see where I am going with this? Maybe it is just me being a human and trying to find a pattern in everything, but it just feels like it's signs from God telling me that everything is going to be ok. 

I am also thankful for your continued prayers.  Keep them coming because I still need them.  I know that for me, praying makes me feel calm, centered, and spiritually fulfilled.  I find comfort in taking the time to talk to God, ask for his guidance and express my graditude for all that he has given me.  I hear a lot, from a lot of people, that they say prayers for me all the time, quite a few have said they say a prayer for me every day.  I really think God is listening to you all.  I feel like he is.  I  have some dear friends who are traveling to the Holy Land this week, with Father and other members of our church, and we were asked to pray for them to have safe travels this week at Church.  I did, but I also prayed for them to enjoy the trip, and to find true spiritual peace on this journey.  What an awesome and powerful experience their trip will be.  Those friends, and Fr. will be praying for me too, when they are on their journey.  I appreciate that they are taking the time to think of me, and pray for me, on their journey.  I hope they also say a prayer for all those touched by cancer, and for peace for each and every one.

No go on surgery

A quick update. I just got off the phone with the gynecology oncologist who got a call from the radiation oncologist, with whom i had my mapping appointment today in order to start radiation. One of the tests they did was a ct scan and a chest X-ray, which showed that I have pneumonia and cannot have my surgery tomorrow. I am disappointed as this prolongs the rest of the plan, and pushes my end date back. But I can not have a good outcome if I have surgery sick, so I am glad that my mapping appt was today. God was looking out for me. I have been rescheduled for the 23rd of march and will keep you posted. Thanks!

Circling.... and now we are cleared for landing!

For the last week I have felt like a plane circling above the airport, unable to land due to bad weather.  I have just been in this holding pattern.  The oncologist doesn't want to see me for three months (YEAH!!!!) Early last week I had my appointment with the oncology radiologist and oncology gynecologist (didn't know they had those, did you?) and the plastic surgeon. Then, I have just been waiting to hear from departments for appointments for mapping and surgery.  I finally heard today, and I have a plan.  Now I can land.  I am having my mapping appointment on Tuesday and then I should start radiation about two weeks after that.  I have times for my daily radiation.  My first two weeks will be at 12:30 every day, the second two weeks will be at 8:45 and the last two weeks will be at 9:30.  Once I get a start date, I will be posting some child care needs for Katie on the Helping Hands Site as Katie only has full day care on Tuesdays and Thursdays.  On Wednesday, March 9th I am having surgery.  It's Ash Wednesday, the start of Lent.  If you are Catholic, you know that you are supposed to give something up for Lent.  I am making the joke that I am giving up my ovaries for Lent.  I think it is a pretty good joke with excellent timing.  If I don't keep a sense of humor, I'll spend all day crying.  It is an easy surgery, they are doing it laproscopically (sp?) and using one of my gallbladder scars, so I won't have any new scarring.  (I had my gallbladder removed in 2000- another issue that every doctor was sure wasn't the root of my issue as I was 24 and thin.  Should have learned my lesson then....)  The only thing that is kind of bad about all this is the timing.  James has Spring Break next week, as he follows the college schedule, and Jay has to go to Detroit late Thursday for an early Friday morning meeting.  But, with creative thinking and a lot of help from my mom, dad, Jay, Magical Minds Studio and my mother in law I am hoping I have pieced it all together.  We'll see! 

I am feeling pretty good about the plan, and am looking forward to getting through radiation.  I am a little nervous as it is another unknown.  Unknown how I will react to the treatment, unknown how tired I will be, unknown what I will do with my children every day, unknown unknown unknown.  What I do know is that I am getting closer to the end of this process and radiation at it's worst is still a cakewalk compared to chemo at it's best.  Plus, once radiation is done, I just have the reconstruction surgery to do and then this journey will be complete. 

I know this has been a long road, and a lot of you have stood by me, especially my mom.  It is tiring, and I know it is taking quite a toll, but we are getting closer to the end of this journey.  Hang in there with me please!  And if I can ask one more thing, please continue to pray for me, my family, doctors and nurses that care for me and everyone touched by cancer.