Tuesday, July 15, 2014

Sorry This is a Long One

Good Morning!  These past few weeks have been busy weeks.  I wish I could say busy as in so much fun that I have not had time to think or write about cancer, but that is not entirely true.  Somewhat-but not all why I have not updated.

To start with the good news!  Mom is here!  She arrived on July 3rd.  Our family was at the lake, but dad and Whitney were here to greet her and welcome her!  Dad got the job!  He actually started today.  He is a bit nervous being the new kid, but Justin let him know he will do fine making friends and reminded him it is just like going to camp where you don't know anyone.  Whitney got the job!  Whitney started her job yesterday out in Washington DC.  She won't be working out there, but they do the first weeks training out there.  She too was nervous, but after talking to her last night, I really can hear the excitement in her voice.  Seems like this company will be a good fit for her.  Don started a new job!  Don has been questioning leaving his company for awhile and when he received an offer from a competing company, he decided it was not something he could pass up.  He had been at his previous company almost 10 years.  It was a great time for him to make a change.  Mom and dad close on their house mid August.  Most know that Dad, Whitney and I picked out the house and dad put an offer on it and got it without mom seeing it.  That took some big time trust!  Well, luckily mom saw it last week and loved it so we did good!  They will close in August and I think are excited to get settled with their own stuff again.  I will miss them here but know like everyone else, they are a phone call away should we need something.  One more big thing (I'm sure I have forgotten some), but Jess and her family were here last week.  We had an awesome week.  A lot of visiting, time in the cars, swimming, baseball, etc. Justin loves having all of these boys in the house since of course all he wants to do every night is play a base ball game or soccer game.  So it was great to have more boys who are just as anxious and excited to get outside and be competitive.  We did some stuff around here and also took them up to the lake for 2 days.  It was a great get away with great weather!  We did a lot of boating and the kids were able to do some tubing on the lake since it was so calm with no one really being there during the week.

Cancer front / yucky parts!  Ever since my doctor has informed me that one of my levels was rising, I have been very anxious and very in tune with my body and realize very much so that the chemo I was on was not working.  I also was having pain issues that I felt were getting out of control again.  Sleepless nights, not being able to get comfortable even in a seating position, shortness of breath because the pain was so unbearable.  You name it, I had it along with pain that is still localized in the right chest area.  I e-mailed Dr. Phillips a few weeks ago and let her know that I would be there that week for chemo and I would do as she asked and finish that cycle but I wanted a new plan and I needed an increase in pain meds.  When she didn't respond, I called and found out she was on vacation.  Luckily one of her associates could help with the pain medicine situation, but could not help with the plan after this chemo cycle.  So the Wednesday of the 4th, I e-mailed Dr. Phillips again and asked her to have a plan for me when we meet on July 11th.  I also asked her to find a new pain management plan instead of just increasing my doses of current meds since they were not working.  I think you reading this can tell I am getting a bit irritated at the plan my doctor has put in place for me.  It is tough though to go in and address these things.  I get she is not God and can't fix all of my problems, but I do believe that she has the power to fix my pain issues so that I can get that behind me and use all of my strength fighting cancer and or being with my family.  Upping my doses on meds that make me sleepy makes it very difficult to do anything.  I can't drive at times, I sleep so much that I don't see my kids, husband or mom and dad.  I don't want to live this way.  So I needed to address this with her, but I guess my concern was coming off upset.  I picture if I were the doctor and a patient came at me upset, I would think the patient is upset because they can't rid themselves of cancer and they need someone to be mad at so they are mad at the doctor.  That is not the case for me.  I am happy with her so long as I feel she is doing everything in her power to treat me.  I know there are things that are out of her hands.  For instance, if a treatment doesn't work, I get it.  It sucks, but it is not her fault.  But again, when I'm on the phone weekly asking for pain meds to be changed, I think there is more she could be doing.

So after this email I received a response front he trial coordinator in regards to a trial I may qualify for in Boston.  We were at the lake at this point so I asked her to send me an attachment with the trial information.  When I received it, it stated it was a Phase 1 trial.  This means it is the first time being treated on humans.  I get that trials have to start somewhere, but in my condition, I do not feel comfortable starting in a phase 1 trial especially in Boston.  I panicked and e-mailed the coordinator back explaining my concern and then asked a tough question: are you giving me this trial because I am out of approved drugs to use to fight this.  She responded that this is not the case and to call her.  So I spent some time on the phone with Kristin and she explained that they were thinking a trial requiring travel might be something I should do right now.  It was going to be a drug with very little toxicity and as we continue with the drugs here, they are only going to get harder and their opinion is to travel while I can and then do the harder drugs as my body starts to wear out and I need to be around my kids.  I told her I would call Boston to get more information, but yeah right!!!  My body will not give up to these tougher drugs!  So I contacted Boston and learned that the trial is an 8 week cycle.  Basically you are seeing a doctor or getting chemo throughout the 8 week time so I would need to live there and if it worked, plan to stay to start another 8 week cycle.  The trial is currently full.  He anticipated there being an opening in 5-6 weeks but if you have to have a 3 week wash out period from chemo.  So I asked if I had started a chemo, would they wait the 3 weeks for me to go off of treatment and he said it would depend if there were others waiting and that could start right away.  Don and I have decided to not rule this out, but leave it in God's hands.  If it is meant to be, it will happen.  In the mean time, move on move on!  The rest of our trip for the 4th was uneventful.

Last week we went up with Jessica and family on Wednesday afternoon and stayed through Friday.  On Thursday while at the lake, I came in from boating with Ryan and mom to lay Ryan and I down for a nap.  During this time, my pain intensified to the point where I was crying and having a hard time getting comfortable.  I took my pain meds but they did not work.  Whitney, Jess and mom took turns massaging my back, bringing me ice packs while Don brought in and took out at my request my bio mat.  It was a lot of work on them and what makes it so much worse is I hate them seeing me like this.  They can not fix it but try so hard.  I don't want to tell them to stop because a massage calms me down, but really they can't take the pain away like they want.  So it almost makes it worse for me.  I don't know actually what is worse: being in pain, or being in their position.  Both are so frustrating!

Friday Don and I headed to see Dr. Phillips in the afternoon.  I first saw the nurse and when she asked how I was tolerating chemo I started crying (I wanted to hold back as much as possible) I told her this drug was not working and I had planned to talk to Dr. Phillips about it.  She is so sweet and reminded me that I have such a crowd of fans at the hospital and they do not want to see me upset or giving up.  I let her know there is no giving up, just sad and frustrated.  But it feels so good to know that everyone there is behind me!  When we saw Dr. Phillips she was filled with ideas on pain management.  She decided that pain needed to be bumped up to first priority and cancer being 2nd for now.  We decided that I will do some palliative radiation (Palliative means not cancer fighting but helps with quality of life) She had my radiation doctor, Dr. McCall come see me and she looked at the area and felt 5-10 treatments could help stop the nerve endings from continuing to bother me.  Next she called a doctor for pain management.  She told me he is very hard to get in to so to keep my phone by me because they would be calling to schedule an appointment.  Finally she wants me to visit the wound center because some of my skin on the chest wall is cracking from being dried out from the chemo.  It is so much so in areas that when I shower, the bad skin falls off and then it bleeds.  I have done a great job taking care of the area, but one bad infection could hurt me so it is time to see the wound center.

Dr. Phillips then discussed the cancer with Don and I.  I let her know my concern with rising level and she explained to me she goes more by physical exam than a blood test that could fluctuate by time of day, something I ate, etc.  So she feels that since I do not have symptoms else where, my other blood work looks good, my physical exams always go over well, that we need to fix the pain these next couple of weeks and then get back on chemo.  So prayers for this cancer to just stop would be great!

I met with the pain Doctor yesterday who is actually an anesthesiologist.  He examined me and felt that putting nerve blockers in would block some of the nerves.  He said we would try this for a couple of weeks and if it doesn't work, we could to a nerve ablation which is where they go in and actually burn the nerve endings.  None of this is permanent so this will be added appointments as the pain comes back.  So yesterday we started with 4 nerve blockers.  These were done under my right armpit (On top of all the red inflammation -YES).  He had to turn on the x-ray because they are placed around the ribs. I was asked to lay on my left side with my arms all goofy so they could get to this area.  I was already uncomfortable because of the way my arms were it was hurting my chest wall, but I thought manage through it, this is going to take the pain away.  Next was the insertion of the blockers.  I cried like a baby.  It was the most painful thing ever.  I do feel I have a high tolerance of pain, but this was horrible.  The entire time I kept thinking he mentioned having to come back for more, I can't do this.  When he completed he apologized and explained that until he got in there did he realize how much inflammation there was so next time he would do a twilight sedation.  Thank Goodness!

If you are still hanging in on this long blog, Mom and I left that appointment and headed to the city to meet with Father Rookie.  I was referred to him by one of Justin's classmates mothers.  He is a healing priest and used to travel the world helping others.  We arrived early so we were invited to look at the Basilica which was beautiful.  Then we went to a room big enough for 5 people and we did the healing service.  The service was special.  After prayer, he sprinkled us with holy water and anointed us with holy oil.  When the service ended we talked to Father Rookie some in regards to his travel.  This is when we learned he was 98 years old!  What a special man with such a talent.  I am so happy I was referred to him and that he prayed over me and my mom.  It will be something we will always remember and cherish.

Tomorrow I have radiation mapping, which is where I lay on a table for a few hours while the radiation techs mark me up to make sure they are radiating the right areas.  Once this is done a mold is made for me to use every day for radiation and I can't remember from last time, but the treatment starts fairly quickly from there.  Friday I will see the wound specialist and then that brings the weekends which consist of Nascar down at the track for Justin and Don.  I am invited but it will be a day before decision. I am not sure I can sit in the chairs that long.

Thank you for taking the time to read this, I know there was a lot of information.  I should update more often so it doesn't get this long.  Please continue the prayers for my pain to be taken away, the cancer to go away but if not go away STAY while we work on these other areas.



  1. Always in my prayers Amber. God bless...& NO MORE pain...!!

  2. Amber, my name is Kat and I am a friend of Diana Decker. I have been following your post and am inspired daily by your strength and determination. I pray for you daily and ask that this cancer and pain be removed from your body at this moment in the mighty name of Jesus. We rebuke the enemy and will no longer let him have hold of your body in Jesus name. Stay strong and believe that God's plan is greater and more wonderful than we can ever imagine. I speak blessings and victories over you and your family. God bles.

  3. You ARE an inspiration, Amber. Thank you for sharing through your blogs!

  4. Amber, HI! I am still going to church almost daily. You are at the top of a very short prayer list. Your courage in an inspiration to me. I understand everything you are doing and applaud you for your decision making. Having some experience in this medical challenge, I believe you are doing everything I would have done. Be well...Jim Gannon

  5. ​Hi Amber,

    You don't know me, but I know you through Gary and Lauren. My hubby Brian used to work with Gary a couple of years ago. They still keep in touch. Gary told us about the benefit you had a few months ago. Unfortunately, we were not able to make it. I think about you and your family a lot. I read some of your blog and feel like you are a gal pal that I would love to hang out with. Just wanted to let you know that we are rooting for you! Continue to be strong, girl!

    Best wishes always,

    Marie Wasielewski