Genetics

Well it is official; I’m on the downhill slide for chemo round one.  I had my 7th treatment yesterday.  It has also happened: I was forced to wear my wig today.  I’m not bald, but thinning and almost balding on the top.  So I thought it was time to get it out and wear it in public.  Thus far the reactions have been positive, but really what can people say? I mean they have to be nice to a cancer patient right???

Arrington says I look like a rock star and Delaney was scared of me this morning and just kept looking at me and then away.  She even had Gavin hold her, and that is rare, so she wasn’t sure what mommy had done to herself.  It was cute though.

Last week did get me down some and I can tell the treatments are slowly wearing on me but I’m still grateful I have more good than bad days.  I’ve been very dizzy after treatment 6 and 7.  Then on Friday I was planning to go to the track meet and woke up feeling horrible: nauseous, dizzy, migraine, and achy.  I thought surely if I shower and get ready I’d be OK, but I wasn’t.  So I had to miss my first event due to the effects of treatments.  Needless to say I was disappointed but Gavin took it OK.  He had people there watching him though.  Mom took the girls, since I was out of commission until about 2 PM.  He had fun and that is what matters but I was upset because cancer got me down.

I also forgot to mention Jon got his BRCA results a few weeks ago and he was negative.  Lucky goose.  We are grateful that both of the boys are negative and don’t have to worry about passing the gene on.  We’re eradicating this in our family!!  We did get some not so great news regarding Dad though.  We’ve known he had cysts on his kidneys since December. They were growing and hurting so he got into a kidney specialist. He was diagnosed with Polycystic Kidney Disease. Its progressive and 75% of people end up needing a transplant by age 70. Ugh.  We hope he won’t be in that percentage.  He’s had to make diet modifications and will be kept a close eye on by his doctors.  This is also a genetic disease.  Jon called mom and said so do we need to be tested for this too? Since there’s not much we can do to prevent it, it’s up to us if we get tested.  Right now I’m not planning too, as I don’t need another genetic condition on top of BRCA, but do plan to speak with my geneticist at MD Anderson to get her take on it. So please also keep dad in your prayers as he needs them too. 

Overall all life is good.  I’m thankful every day that I have so much support and care all around me.  From work, to church, to the community at large I’m very blessed.  My life is overflowing with love and sustenance.  I can’t imagine not having a support network during such a trying time and I thank God every day for all of you. 

I also thank God for my continued healing.  It was so funny, Fiona, my niece had an oochie on her toe.  She didn’t want to swim until it healed and was lying on the floor at moms.  I heard her say something like “Thank you for healing me body I knew you could do it” out of the mouth of babes so precious, innocent, and believing.  That is what I have to be and know I can learn from her.   So please continue to pray for me.  I know it is working.  And thank you god, and my body, for my healing. 

Half way Done with Round one

Mother’s day was a great day.  Grandma, Mom, and I went to Wichita Friday and spent the weekend.  It was fantastic to get away and spend some girl time.  We ate out and went shopping.  When we got back on Sunday afternoon Stephen had the kids dressed in the shirts I bought them but they’ve never worn before.  Delaney’s says “Find a cure before I grow boobies”. Gavin’s says “Real enough to support my mom Man enough to wear pink doing it.”  Arrington’s says, “This chick wears pink for her mom.” They were really cute and happy to see us.

Our kids are some of the best blessings God had ever given me.  I’m so lucky to have three beautiful children. Children are a true gift from God. One that helps me stop and smell the roses and one that helps me see the little things in life.

Last week was overall pretty good.  Since Stephen was at a conference, we stayed with mom and dad for a few days.  On his way home, Stephen had to go to the ER in Wichita because he got a piece of steak lodged in his throat.  Evidently he had a narrow esophagus.  They went in during an outpatient procedure.  Removed the steak and stretched his esophagus. It was a very odd thing, but luckily he’s alright and hopefully the issue is solved.  His colleague Eric Ryker was at the ER with him and took him to a hotel for the night.  I’m so glad Erik was able to do that, was with the three kids, and being exhausted, it was too much for me.  Erik was yet another blessing God sent for us. 

I had a reaction after chemo and my port got a rash, however it went away in a few days.  Although uncomfortable it was bearable.  Then on Thursday, I actually had to leave work for a few hours.  All of the sudden, I got shaky, my heart began to beat erratically, and my legs were like jello. It was very odd, as it came on suddenly and without warning.  I guess these things happen with chemo? I also started losing considerable amounts of hair Tuesday after last week’s treatment.  Arrington told me “mom, I bet you have bald spots with all the hair that you have falling out.’  But thus far, I don’t have any bald spots just very thin hair.  I’m prepared for it to fall out; and would actually prefer it to, as I’m getting tired of waiting and wondering when it will happen.  You see, God is helping me learn patience.  One of the many things he’s teaching me through this journey.

Today I had my 6^th treatment.  That means I’m half way done with my first round of chemo.  Yeah! Celebrate!   The treatment went well.  I am however wiped out and very dizzy.  Odd, as I’ve not had the dizziness issue before but I guess as I progress, different affects will occur.  I’m still thankful however that I’ve had very few other side effects.  

Overall, thing are going well.  I pray for this to continue.  I’m also very grateful for all the support and prayers that I’ve received. Thank you God for my healing.

Reflections

As I sit here and reflect back over the past year I can certainly say there is a fork in my road.  However I know I must not let it be a roadblock but I must instead look at it as the scenic view.  The path less taken.  I truly believe God has a plan for the trials and tribulations we encounter.  As Pastor Keith spoke about it brings us back to God and makes us rely on faith whereby strengthening us.

Yesterday was an exciting day.  I turned 33.  It was the start to a new year, new adventures, and to seeing the world as one huge miracle. Things look different then they did a year ago for me, however I never cease to see the possibility that lies ahead.  What will I do to make the world a better place as a result of my experiences; I’m still uncertain but I do know that I’ve been given this journey and with that knowledge I must make a difference in the world.

With this thought in mind, as I was watching the news coverage of the royal wedding I wondered: was Kate like so many other little girls that wanted to be a princess.  Did she dress in princess garb like Arrington does or was she less fascinated with the royals?  Did her mommy think someday her little Kate would be a real princess?  It’s often funny what kids dream up and what parents imagine their children to become.  Arrington was shocked that there were actually princesses.  She could not believe that Prince William existed and Kate was now a princess.  She said she’s like Belle or Tiana.  You know me; this conversation gave me a good chance to talk about political structures too; although I’m pretty certain she had no idea what I was saying. Arrington thought princesses were only pretend; something in a fairytale that one sees on TV. For now, I think I will let her continue to believe that as isn’t childhood a miraculous thing?

I can honestly say however that I’ve never thought of my girls as actually becoming royal princesses in real life.  Possibly a doctor or a lawyer; but a Princess?? Maybe it’s because in the US we don’t have a monarchy, but you know what, that actual position in life really isn’t one I’d truly want for my girls. 

What do I want for my children? I wish them happiness of course, but also freedom.  Freedom to make mistakes; and not to have the entire country watching and commenting on them.  Freedom to be who they want to be; and dress in what they choose to wear. Do you think Kate will have that kind of freedom again?  To me this Freedom is a miracle. A blessing that we so often take for granted.  Of course being a princess would have its perks but at what price?

I guess such is life.  To every choice we make there is a price.  Maybe small or maybe large but a result occurs and often many others linking back to that one choice.  In our house we talk about choices.  We talk about making good choices and when we make bad choices there are consequences.   We want to teach our kids how to make logical sound choices and that choices matter.  Even the ones you make when no one else is watching.  Aren’t these choices the ones that often reflect our true character?  Those choices that we choose just because we know it’s the right thing to do!

This year, my life has changed and I too want to change the way I look at life.  I’m going to take time to smell the roses, enjoy the simple pleasures, and treasure family and friends.  Sometimes I know I get too wrapped up in the daily struggles of life but this year is going to be the start of a fresh outlook and the goal of keeping a positive view.  Since my diagnosis I’ve certainly started counting my blessings as much as I do my tribulations.  I often think, I’m so lucky and life could be so much worse. 

Brenda and I went to training on Thursday and we had lunch with a few girls that attended the seminar too.  As we were talking, one shared with us that her husband was being deployed for at least a year to Kuwait.  I thought to myself, I’m so glad Stephen isn’t in the military anymore or that could be me.  This brought me back to the realization that everyone has trials and tribulations. That’s why we must remember to be kind to everyone we meet as they are all fighting their own battles.  It’s how we decide to react to those battles and if we choose to have faith that makes all the difference in the world. 

I encourage you all to Go out and count your blessings, keep an open eye for all the miracles that are bestowed upon us, and most importantly have faith that God will see you through.  Thank you God for my healing and for another Miraculous Birthday.

It's a Joyful Day

I wanted to share some great news.  I went to the oncologist today and he thinks the tumor went down by 1/8th.  It was 4x4 cm and now it’s 3.5x3.5cm.  This is great news.  Also, since it’s not hurting like it was previously that is a wonderfully positive sign too.  I am so blessed by this and not to have had many side effects.  I haven’t been sleeping well for the past few weeks, so he also gave me a sleeping aid.  I plan on trying that and seeing how it goes.  However I am so grateful for the success of the treatments and the very mild side effects that I’ve experienced thus far.

I am looking forward to this weekend.  Although it will be very busy, it’s going to be a blast.  Sunday will be a special day with nearly 60 family and friends at grandma and grandpa’s house then egg hunting for the kiddos.  Life is good, God is Good, and Thank you God for my healing.  Prayers are being answered every day. 

Pain in the Neck

Short Version: Second Chemo treatment went well.  They sped it up from 4 hours to 2.5.  Yesterday my neck began to hurt so bad I could not hold up my head.  It was on my left side where the port is located, so I think they must be connected in some way.  Same thing started happening around noon today.  Called surgeon that put in my port and she thinks it might be a kinked nerve.  Asked if I could see chiropractor and they surprisingly said yes.  Have chiropractor appointment tomorrow; hope it helps with this neck issue.

Chemo was interesting this week.  To start off with they were running late.  Like an hour and a half late. Wow, that wasn’t fun waiting an hour and a half to get infused with chemical agents.  Yuck.  So once they got me started I realized that the other two patients that were there that day taking treatments were terminally ill.  They were basically extending their lives by doing chemo but still had very short life span estimates.  Although they were both obviously Christians, and said that they were at peace with the fact they’d be with the maker sooner then they planned, it was still very hard to hear. 

I completely understand this, as I am not afraid to die, because I know I am going to be in heaven; however what makes me sad are those I leave and the thought of my kids not growing up with a mom.  I very rarely even allow this thought into my mind but spending several ours with the other patients made me think about it for a short time.  This was very sad to me, as both were also recurrent cancer patients.  I pray and pray that I will go into remission and stay that way, but on days when I’m faced with the harsh reality of re-occurrence, I do somewhat get panicked. 

When I finally got done with this week’s treatment I was more than ready to get out of there and focus on the positives.  The here and now and the fact that I believe in miracles and know God is going to take care of me, get me through this, and make me into a better person because of it. Thank you God for my healing.  Thank you God for my healing.

It appears each treatment might make me feel differently, at least at first, though.  This treatment has made it difficult for me to sleep.  Last treatment I was exhausted, this treatment my mind won’t stop and let me sleep.  I’m told it’s due to the steroids, which I can believe as my feet and hands are also swollen. My body is so tired yet my mind keeps going.  The weird part is that I’m not worried or thinking about anything in particular but instead weird, off the wall random thoughts that keep racing through my mind.

Unfortunately yesterday I had a very weird thing happen: my head felt too heavy for my neck to hold up.  My left side of my neck was in extreme pain.  I think it has something to do with the fact that they sped up my chemo and during the infusion I could feel a cold numbness in my chest around port catheter connected to my vein. It felt weird when infusing; but since they were speeding up the treatment, to the ‘standard time’ as opposed to the four hours they have me scheduled for, I figured that was normal. So I went home last night and had to lie down.  I also had to take some pain and anti-nauseous meds but after they had time to set in, the pain lessened.  However I still did not sleep well, I woke up every 30 minutes to an hour, but I’m assuming this is due to the steroids. 

Then around noon today my neck started doing the same thing.  Before it got to the point it did yesterday, I went home to rest and take some pain meds.  I also called my surgeon, Dr. Nicholas to see if any other patients had this issue. She called me back and this is an unusual occurrence.  I told her I do see a chiropractor and asked if she thought I could see him?  She did think it would be Ok and said it could be a kinked nerve especially if I regularly saw a chiropractor; he might be just what I needed to solve this odd occurrence.  I have an appointment tomorrow with Dr. Coulter in Alva.  Since Dr. Keeney stopped coming to Alva, I’ve been seeing Dr. Coulter.  I will be interested to see if he’s comfortable manipulating me with a port-a-cath but I’m hopeful he can and get this pain out of my neck.

Overall all, this week has been more stressful then last, but could certainly be worse so I’m grateful these are the only issues I’m experiencing. We started my daily injections again today and will do this W-F. From the lab results last week, these shots are working very well.  My white blood cell count was higher than it has ever been so this is very positive.  I’m very happy Dr. Truong had the foresight to start me on these before my count dropped too low.  He’s been very cautious with me and I’m so appreciative that Patty referred me to him five years ago.  I’m so lucky to have him managing my care.  While waiting for chemo there was a couple from Meade KS that had to come to Pratt for treatments.  I think they said it was a 2 hour trip one way?! I started thinking about that and how lucky I am to have Pratt within 45 minutes as opposed to having to drive to Wichita. 

 I also started thinking about how fortunate I have been to have Patty taking care of me for so many years.  She got me to Dr. Truong when she realized my white blood cell count was low five years ago and I was diagnosed with cyclic neutropenia.  At that time I did not need an oncologist, but instead a hematologist, and Dr. Truong is both.  He’s been working with me since then so I have built a trusting relationship with him that has been extremely beneficial for this diagnosis.   Patty also took me seriously when I came in with a lump in my breast.  She referred me to get the diagnosis and then also referred me when I asked her to so I could go to MD Anderson.  She, and the other team members at the Kiowa Clinic, have been fantastic. We are truly lucky to have such a caring and personally connected medical team within our community.  I know for a fact if I were still in Colorado Springs, my primary care doctor would not have taken near the interest or given me the care that Patty and the girls in Kiowa have.  Thank you all so much.  It’s good to know there is a team that cares in your corner.  So far, I’ve been extremely lucky to have such a great team working to help me.  All except for my first experience with the initial mammo and ultrasound in Wichita, I’ve been extremely happy with my care. 

I also know that I’m extremely blessed to live in such a wonderful community.  Over the past few days friends have brought us dinner on M and W nights.  I cannot express how grateful we are for these angels nor did I realize what a stress it would take off of us by having someone do this.  It really has lifted a burden that we didn’t realize we could use help with.  

I appreciate everyone for helping me and my family as we go through this time in our life; words cannot express my gratitude.  I know your prayers are working and can feel the love and positive thoughts that you are all sending my way.  Thank you God for my healing.