Saturday, September 15, 2012

4 Down - Prayers are working!

4 down- 8 to go!  Man I am squeaking by with my counts!  The song of the week is "I get knocked Down, But I Get Up Again" by Chumbawamba- No I did not download this on the IPod and if I did, I won't be admitting it to anyone!  Don and I have decided switching to the blood work on Thursdays while they are saving me time on Friday treatment days, they come with a lot of extra anxiety and news that I have a hard time swallowing with more time to think about it.  This Thursday I went again at lunch time to have my labs for Friday drawn.  Friday was supposed to be Taxol and Carbo so they draw the usual WBC count, hemoglobin, platelets, liver, and the added kidney function test so they can measure how much Carbo my little body can take. 

As much as I again felt wonderful, I still had a feeling I was a little low on the WBC arena.  I had my usual runny nose and when I woke up Wednesday and Thursday my throat was itchy and Thursday, my voice was missing until I got it warmed up at work that morning.  I decided dressing up nicer was key and that maybe switching up my routine a little would bring up those levels.  Don't tell me you have never done this....you don't want to follow the same routine as previous because you think it will give you a different outcome!  WRONG!  I left blood work and get the call from the nurse.  Your levels are still below chemo levels.  My hemoglobin went from a 6-7 (transfusions needed anywhere below 8) my WBC was at a 1.8 (last week 1.3, 0 means no immunity protection)   Oh and my platelets were low.  I didn't ask for this level because at this point I was on the floor in a ball again (not really) but I couldn't take it, plus I didn't know my last weeks levels, only that they were low, so I had nothing to compare it to.  The nurse told me she had already talked to Dr. Hantel and he was going to use the evening to come up with a plan for me.  She explained chemo did not look good on Friday and to come in definitely for another blood transfusion and platelets.

This time, I was more angry than sad and scared.  Angry that I just felt too good to deal with this.  Angry that my body will not re-coop like it should, it has been 3 full weeks since Carbo. Why is my body refusing to come back to normal? I returned to work and made it through the afternoon and decided I needed to give Dr. Hantel some time to come up with a plan.  Hopefully his plan would match what I want.  At least hit me with Taxol.  Don't delay both treatments.  I come home very anxious and nervous the Thursdays that I plan to meet with Dr. Hantel on the Friday anyways.  What is going to tell me, what if he thinks the tumor is bigger, what if he thinks it has spread, just an entire process that I have to end up taking extra Ativan to sleep and I usually cry in my prayers until I eventually fall asleep:  Please  take away the bad.  Just give me good news, I am so down, stop kicking me while I'm down God.  I need to be here for me, my children, husband and family.  Don't you see what a great person I am here on Earth, why are you challenging me.  Just a few thoughts, then I usually try to not make it so personal, but it all boils down to it is.  I have a stronger faith because of this, but I struggle so much. 

Let's face it, life was wonderful up until June 21, 2012.  We had our 2 children, we were making our next life changing decision to possibly relocate our family to Atlanta, this involved picking out the home of our dreams, day dreaming about waking up to warmer weather daily, will we get a pool?  Where are the best schools and day cares.  Our kids are the perfect age to make this change and Don and I are at the right place in our careers to make a decision like this.   We would be closer to my parents and Whitney, my in-laws are retired, they could come visit anytime they wanted and this would include them getting out of the colder weather too anytime they want!  Life is great!  Our biggest concern was can we leave our family and friends here?  Will they come visit? Will we really be able to go through with it?  Is it the right decision for us.  But we were well on our way and in the big scheme of things, we still had time for this decision-days and months and even a year.  We didn't have to face this decision daily, we were enjoying life!  Come June 21, 2012, our life has turned into a whirlwind of appointments that are mandatory, news that is never positive even when it is.  All long term future plans shattered and put on hold because getting through a day is the hardest thing you have EVER encountered.  How do you think a week ahead when you have to live for today? Don and I don't live life that way, we like to have a set plan. So this makes it very difficult for both of us.  We are so unclear on our future.  The motto minute by minute, day by day again comes into play here, but no one likes to do this day in and day out.  We just need that sign that everything is going to turn out okay and like everyone likes to say, this is just a bump in the road.  But waking up to the daily reminder that this is for real and this is our main focus is constant: no hair, the medicine, the bills, the tumor that is still felt daily, all are constant reminders that we have to live for today and put our bright future on hold until we can get through this.  So difficult!

Ah, anyways, back to the good news!  So yesterday I wake up and spent some quality time with the boys.  My appointment was scheduled for 10:30.  I'm trying to teach Ryan to clap and do "So Big".  The clapping he masters usually 10 minutes after I work with him and the so big, he does it, but I really don't think he gets what he is doing, but he does raise his hands and smile.  We leave for Dr. Hantel and drop Justin off at day care so he can have lunch and catch the bus for Kindergarten.  We tell him either Whitney or us would pick him up early today after Kindergarten.  He loves this on Friday's and really loves it when Don and I take or pick him up together.  So next step is Dr. Hantel.  He comes in and says to me "How is the boob".  I have to admit from day 1 he was so dry, I get his job is difficult, but I was used to going to the Dr. for good news for having a baby so to go from a smiley Dr. asking about my pregnancy to going to COMPLETE seriousness was so hard.  So my main focus from appointment 3 or so was to lighten up these appointments so I could handle it.  He quickly learned I am on a need to know basis.  I don't want all the gory details.  Tell me what I need to know to fight this tumor out of me.  So to hear this, I had to tell him, a point for you!  I think he likes it when I smile too.  He really has figured me out in the short (feels long) period of time I have met him.  Next he asked my opinion on the tumor.  Notice I do not really address this until I meet with him.  I have a strong opinion, but am afraid to say it because I am scared he won't agree and we will have another back set.  So to share what I shared with him, it is still there, I feel it daily, but my opinion is instead of it feeling like a hard rock, it feels like a sponge.  He takes a peak and strongly agrees and feels that it has significantly shrunk since we started treatment in June.  So much so that he felt it was 50% smaller than where we were that ugly day in June.  He felt for my lymph node and agreed that has disappeared completely.  IT IS WORKING, the drugs and the prayers are working!!!  
video



Next we go over my levels and he explains while they are low, they are still low due to the Carbo.  He reminds us that they hit me with a pretty strong dose of Carbo on week 1 because of my great kidneys.  So the plan, give my body 1 more week to re-coop on its own.  Yesterday we did just Taxol, no intervention with platelets or blood like the nurses originally warned me about.  I have decided the nurses are more Conservative and Dr. Hantel is more aggressive.  I trust both opinions but like the way Dr. Hantel will always think aggressively for me.  Even though it is scary at times and I get curious if this is the right thing, he has not let me down yet!  Next week I will get Taxol and a smaller dose of Carbo.  This will allow for future my levels to hopefully bounce back quicker so we don't have any other transfusions or delays.  After we see what happens with both drugs next week, assuming the plan will work, I should not be delayed with the end of treatment (set for November 9th) What it could mean is that the surgery might be delayed a week or 2 later just to allow for my levels to get to where they need for surgery, but all in all, we are not delayed by too much right now, he was very happy with the results and so was I.  

We started Taxol right away since my blood work was complete.  I was out of there by 2:45!  We left there and were able to pick up Justin and take him for ice cream.  We got him home and I realized at that point, the ice cream was maybe not the best....HYPER Justin came out. We drove to the park, his idea not mine, I think I could have made the walk since I was walking on clouds, but he wanted to drive so we did.  I was able to run some energy out of him and we came back to a nice evening spent as a family.  THANK YOU GOD!!

We are going to enjoy this weekend.  This is a huge gain for us.  We are well on our way.  This is what I have to keep in mind when I get kicked back, with all set backs, there has to be a gain!  There is no other choice!  Don is taking Justin to both races today and tomorrow for NASCAR.  I will go to his soccer game this morning hopefully during Ryan's morning nap and then Whitney Ryan and I have plans to do a little shopping.  Food, clothes, car seats, etc.  Let's hope we can squeeze it all in.  Who knows, if we do we do, if we don't we don't!  Then home to relax the rest of today and tomorrow so I can prepare for a great week!  My parents get in on Thursday, so mom gets to be my chemo partner on Friday.  Next Sunday Ryan is being baptized (finally) so I need my levels to rise so it is a good week for me and for all of us!!

Your prayers are working so keep them coming.  I love all of you! And I thank you for following us on this journey and always knowing when and where we need the prayers and support.

Love,

Amber

P.S. I have tried to download a video that Whitney captured of Ryan clapping after she shared with him my good news, for some reason it won't play.  So disregard, I can't figure out how to delete it and the big kids are still asleep and the little ones are yelling for breakfast, so disregard, but if you know what I need to do, you can share with me and then enjoy a super sweet video that brought me to tears yesterday at chemo when Aunt Whitney sent it.  Enjoy the one that looks to me like Ryan is praying and the one where Justin is giving me a huge #1 for my good news!  






1 comment:

  1. Such good news for all of you!!!! Finally! This doctor seems to know what he's doing, so have faith in him and the big guy in the sky and all will work out. So glad you are seeing progress and can enjoy your weekend. Always thinking of you, praying for you and hoping for good things to happen to you. Yesterday was one of them :) Love you Amber! Aunt Tam

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