An Emotional Day

I woke up to the sound of my Tornado Teen singing again this morning, "Happy birthday Day Two!  Happy birthday to Mom...happy birthday day two!"  You guessed it...he decided it was an even better surprise if I got breakfast in bed on an unexpected day.  And it was enjoyed for sure!  

Coming off my high from my birthday yesterday, today was a little emotional.  What I did not discuss in yesterday's blog was an upsetting phone call from my radiologist.  It was not that I did not want to discuss it...just that it came late in the day and I had to process it first and determine a plan to set things right. 

See the nurse from my radiologist called to set up my consult for the radiation.  I assumed she was talking about my new radiation plan for my brain tumors.  But she had called for my back radiation treatment, which had already taken place.  It would then take a discussion about my case with Dr. Zubyk and a call back.  No big problem...but when she called back she said that I was right about needing a consult because I was going to need to learn about a new radiation procedure called Gamma Knife.  I told her that she was mistaken, as I had had that radiation procedure for my first brain tumor in December.  Basically, we went back and forth and she finally decided the best option for her was to let me talk with the radiologist at my newly schedule appointment.  I felt confused and annoyed and had the night to dwell on it.  

My decision was to go in to chemo today and ask to talk to Dr. Drengler's nurse about the issue to set this straight.  I had already been thinking about this...I want all my medical records...anything written about me in my possession, so there will be no doubt that I know what is happening to me.  This experience with the nurse yesterday evening just sealed the deal that I am not getting everything correct as I thought.  

So, when I arrived at the clinic there were only two other patients and my sweet Nurse Cyndi only had me to assist.  She asked how I was doing and I told her that I was a little upset.  So, she sat down and told me to tell her all about it.  Once I told her the situation, she agreed to send a message to the nurse (Monica).  A reply came back that she was on her way to talk to me.  And I explained my concern again.  She immediately printed the notes from the last week that she had and it was helpful but still not enough.  So, I said I needed the information from the radiologist office too.  I just want the correct information about what is being done for me.  

Before I knew it, I was talking directly to Dr. Zubyk by phone.  She clarified that I had had a different procedure than I thought and the confusion probably came because in my previous consult she had given me all the possible options and one of them was Gamma Knife.  I guess I thought it was one procedure option with the tool being used under the name of the Edge, but that is the actual procedure name.  I have never had Gamma Knife done.  So I will soon have another procedure under my belt it seems.  So, once again I emphasized my desire to have everything in writing from now on.  She agreed this would be best and she would have it all for me at our next visit.  

While I had her on the phone, I asked what her evaluation was about these new tumors.  Since these were all new from the brain MRI done in November, did it change her outlook on my case.  She told me that from now on, instead of a brain MRI every six months, I will now have one done every two months.  AND...if new tumors show up in the next scan we might need to discuss full brain radiation instead of individual tumor radiation.  She said they tend to not do this because it would lead to memory loss.  So, that was a not so fun thing to hear.  She also told me that she was on her way to a consultation on my case with Dr. Drengler and Dr. Jude.  So I guess I will find out about that consult some time later this week.  

Backtrack to my talk with Monica...when I talked with her about needing better documentation...I told her one thing I am concerned about is that my children may one day want to know that all was done for me by my doctors.  They will have questions as adults and I did not want them to have to hunt down the information, but to have it readily available for them when they want it.  I knew that the doctors were doing all they could for me but it would help them see it too.  Monica told me that they do care and that Dr. Drengler could often leave the office by mid-day but stays on many hours reviewing cases.  I told her I knew he worked hard and I never had any doubt.  

I do not know but somehow the treatment time seemed to go slow today.  I just could not get the entire situation out of my head.  I felt lousy.  I did not even have my special lunch for the nurses and staff as I had hoped.  I did talk with a couple of other cancer patients and that was good.  We talked about how life is crazy but that is what makes us want to enjoy it...the twists and turns just make life interesting.  Yet, I still felt not right.  

Nurse Cyndi told me at the end of the day that I had done the right thing.  My voice needed to be heard.  It was only because I voiced my concern...very out of character for me as a patient...that brought Monica to talk to me...that got Dr. Zubyk to call so quickly.  I know that I needed this missing information to give me peace...but at what cost?

One other thing I told Monica was that I needed to know what was causing the pain in my chest...I did not feel like this was being addressed.  I made her feel the bulge in my chest.  She said she would discuss it with Dr. Drengler.  By the time, I was driving home early afternoon, I got a call from Dr. Drengler.  He once again seemed so tired.  But he told me that he had spent the afternoon re-reviewing all my recent scans.  He determined that a very hazy spot at my sternum did show up in the scans but it did not seem to be significant.  However, he told me that I am very in tune with my body and I know what I feel.  So, from now on if I am having pain in an area with even a haze, we will determine a treatment plan.  My cancer has never been prone to the normal detectors until it is more advanced.  If we can find spots earlier, we need to do it.  

So hear I am reflecting on the day, and I cannot help like I let my team down today.  Unlike the patient I spoke about in yesterday's post, I tried to be kind and loving about my concerns.  However, it still puts doubt in their minds that they are doing everything they can do.  That is the last burden I want to put on them.  They are who have gotten me as far as I am in this battle for life.  Only God alone gives me more confidence.  However, it makes me feel like I am no different than the screamer who demanded more than she could have...more than the staff are able to provide.  So pray for my medical team today...pray that they know they are making a difference for many lives.  But also pray that they find healing at the end of the day when the days are tough.  God knows I pray for this because they are my medical heroes who I have come to care for in a special way.  

I close with these Bible verses...knowing that I do need healing but not just physically...I must go before God once again for spiritual healing...A much great gift.  

"Is there no balm in Gilead? Is there no physician there? Why then has the health of the daughter of my people not been restored?" - Jeremiah 8:22

"Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven." - James 5:14-15

God bless you all for hearing my woes.  Knowing that God will hear your prayers for me gives me no greater joy!