Limbo

Not liking having to do the updates lately.  Wish I had good news to report. Seems like every time we turn around there is something bad.  We expect bumps every now and then but it's getting ridiculous now.  Ridiculous and scary and frustrating, and exhausting and emotional and expensive and the list goes on and on.


Yesterday, Bill had called me. While he was at work he received a message that his oncologist would like for him to set up an appointment with him to go over the PET scan results. Bill wanted me to call and make the appointment. He also wanted me to find out what the results were.  The only time they call is when the results are not good.  Which is why Bill was emotional.  Knowing the results are in, knowing the doctor wants to talk to you about them, knowing the doctor only does this if the news is bad, knowing all of this, equals pure emotional hell.  It always has.  This time even more, for the fact Bill was told last visit if this current treatment doesn't work there is nothing else this oncologist can do. 


Receiving this phone wasn't much of a surprise.  Last CT didn't show any growth but it didn't show any shrinkage to the lymph nodes either.   I did what Bill asked me to do. I called the office.  I scheduled an appointment and asked for the results.  The nurse I talked with didn't know the results. I explained to her Bill's emotional state. I also told her we were told in the past from the doctor himself, we can get the results over the phone and that the results can be given to me.  She told me she will talk to the doctor and call me back. She called back.  This time she seemed flustered.  She said she talked with the doctor.  He said the news wasn't good. She said she doesn't think she should be the one to give the information and does not feel comfortable doing so.  That Bill will have to wait until he sees the doctor.  I told her if that's the case she needed to get him in A.S.A.P. She said the earliest she can do it Thursday (2 days later).  I kept my cool but I was infuriated.  If the results are bad, Bill can handle it.  The not knowing is what really does him in.  It's not fair to keep him waiting and upset for that length of time.  At least the doctor could have called and talked to me briefly and explained in detail when he went in for the appointment.  


I was stunned.  Didn't really know what to tell Bill at this point.  He was at work, emotional, and I knew if I told him what just happened would make it worse.  It would have been easier to tell him the cancer had spread in the liver or whatever the case maybe and the doctor will discuss it in detain on Thursday then what had just happened.  I waited awhile before I found the courage to call him.  I told him the nurse didn't know anything and he has an appointment for Thursday.  He was still upset and I asked if he wanted to go home.  He said he is trying to stay busy and he didn't want to come home early.


When I picked him up he was still upset.By this point he is angry that he has to wait .  The truth is always better then the unknown.  The kids were with us, so I didn't say much on the ride home.  When we got home, I told him what I knew.  He was upset, scared, and angry to say the least.  It didn't take long for him to settle down.  We talked and cried for awhile and after we talked things were better.  We both suspect that tomorrow we will be told the chemo isn't working and treatment will be ending.  We talked about the kids. He talked about the pumpkin plants that didn't do well this year. He mentioned how he is going to try again next year, if there is a next year (his words not mine).  He told me that when the time comes he wants me to move on and he doesn't want me to be alone.  I told him I will go on but I don't have to move on. We talked about the doctor's office and how poorly it was handled.  I can understand that the nurse didn't want to tell us.  That isn't her job.  But the doctor could have called and told me briefly.  They should make it a routine to schedule appointments after a test to discuss the results rather then wait for the results then deciding to schedule. We both agreed, even if this is the end with this oncologist Bill is not done.  There is still a fight to be had.  


Then the conversation went into what to make for dinner. Bill said pizza.  I agreed.  He deserved to have a greasy pizza.  So we splurged and ordered from a place that had the most greasest pizza we knew.  We watched TV and surprisingly Bill was able to fall asleep.


Sometimes it takes a great fall to make a great rise.  Bill went to work despite my plead for him to call off. I threw myself a pity party when the kids went to school.  After the party was over, I contacted an agency that helps cancer patients find a trial study that best fits the patient.  I was told there are over 300 trials Bill maybe eligible.  He emailed me 15 which he thinks would be the better ones to try. He suggested I take them tomorrow for the appointment and discuss them with the oncologist.  I am not sure if the doctor will take the time to look over them though.  The gentleman also suggested  a second opinion (which Bill and I have already thought of), he also suggested further genetic testing needs to be done on the cancer which may help in finding the best treatment/trial for Bill. 


In the mean time, Bill is trying to keep himself occupied.  He is struggling to keep his emotions in tact.  I feel very helpless at this point.  Right now he doesn't want to talk about it any more which I can understand.  The fact is, there is not much to say right now anyways.  Since, we do not know for sure what the results are.  I wish I could find away to help him get his mind off of it.  Tomorrow afternoon we will get the news.  I will write another blog in the evening.