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.  

It's A Go

Thanks to Bill's new doctor, he was able to have his PET scan this morning.  It went well.  Now the waiting game begins.  He see his oncologist Friday, and we are hoping for the results then.


Last night was a very long night for us.  Bill had to check his sugar levels and call the doctor every 3 hours.  I felt guilty every time I called her, especially at 3am.  Bill is doing very well giving himself the injections. We are both having trouble getting enough blood from his fingers for the testing.  I realized this morning his fingers are very callously and I think that is the problem.


He is sleeping now.  He took the kids out for awhile earlier this afternoon so I can sleep.  Now, he is trying to catch up on his zzz's. I am on my way out the door to get some groceries.  It's going to be challenging.  Bill loves his carbs and not that big of a meat eater.  


Hope everyone has a great weekend. 

More Drama

This morning Bill had a chemo infusion.  One of the chemo nurses, Stacey, was informed that the PET scan was not done.  She confronted Bill about it. Yesterday, he has his pre-chemo blood work done which always include a sugar test.  She looked at the sugar level from yesterday, and it was very high as well.  Stacey scheduled an appointment for  Bill to see an endocrinologist this afternoon.  


Bill started to feel defeated.  It's been one thing after another lately and now this.  I tried to reassure him everything will be OK.  If he watches his diet, walk, and maybe take a pill he will be fine.  I gave him a Xanax, fixed him some lunch, and encouraged him to  lay down for a bit.


When we get to the appointment the nurse taught him to check his blood sugar. Not a big deal.  Then the doctor came in and looked at his past sugar levels.  It seems that the new chemo regiment might be causing his blood sugars to be elevated. There is a family history of diabetes.  So maybe the combination of family history and the new chemo medication has caused him to be diabetic now.  


Dr. Kimm examines Bill and casually mentions that Bill will need insulin.  I know there is insulin and I know there are pills that help carry insulin.  I was hoping she was referring to the pills.  It wasn't so.  Bill has to give himself insulin injections 4 times a day now.  I was proud of the way he handled the news.  It's going to take him a few days to get use to the testing and injections.  He has the weekend off and I am sure he will have adjusted by the time he goes back to work on Monday.


He has to see a dietian next week.  He mentioned to Dr. Kimm I have a degree in nutrition. She asked me if Bill would need to see a dietitian.  I figured he would be better off talking to someone else since he doesn't listen to me. 


He gave himself two injections earlier this evening.  His blood sugar is still high. I called Dr. Kimm and she increased his dosage.  He had to do two more injections and test again at midnight.  I have to call her back after that.  I feel guilty calling her that late.  She is trying to get his sugar levels down so he will be able to have the PET scan in the morning.  


After all of this, I hope he will be able to have the scan.  I am crossing my fingers and my toes.  

Saturday

Bill's PET scan is scheduled for this Saturday at 8am.  Hopefully all goes well this time.  There is only so much a person can take. The stress of this is taking a toll on him.  He is having it done at a different hospital.  I am hoping we can find some one to watch the 2 little ones so I can go with.  I know he is going to be nervous how it is and trying to find a new place on top of that well.... He won't be a happy guy to say the least.  

Not This Time Either

PET scan was for this evening.  Bill left work at 5, showered and left for the scan.  Same thing as last week. Except for this time I gave him a Xanax to help relax him.  We get there and have paper work to fill out. A few minutes later the tech came out to get Bill. He talked to us for a few minutes and answered my questions. This was the first time someone ever took the time to explain the  scan.  


About 30 minutes later, both Bill and the tech came walking out.  The tech said that Bill's sugar was elevated and he was not able to have the PET scan because of it.


We have to wait until tomorrow for a phone call to reschedule the appointment.  We are hoping he can have it done early Saturday morning.    Bill is doing OK.  He had a long day and is beat.  Hopefully the third time in a charm.  

Oops

No PETscan today.  I feel so bad for Bill.  He was a bag of nerves this morning when he came home from work.  Rushed and took a shower and we left for the scan. When we got there he was tired and nervous. I went to register him and the receptionist looked confused.  She pulled out a stack of papers and said his appointment is for 8pm tonight.  I didn't think to ask am or pm when they called yesterday to remind us of the appointment.   Especially, since the clinic closes at 8pm and we are usually there over 2 hours for this.  The scan is done from an outside agency and they were the ones who made the appointment.  I felt bad for the receptionist since she had nothing to do with the  confusion. 


Needless to say, Bill was very perturbed with good reason. He calmed down quickly on the way to breakfast. He was upset about being late for work tonight without giving them a notice.  So he decided to go in next week instead.  I called the company to reschedule the scan.  I waited on hold for 10 minutes.  When I finally got through, he said he would call me back.  I waited and waited and finally after 2 hours he called back. In a way it was good he didn't go today.  Since, he was never given the complete prep instructions.  He is having the scan next Tuesday at 6pm. 


I really hate to see him go through all this stress again next week.  The good thing though.  He has an appointment to see the oncologist next Friday, and hopefully we can get the results then. Instead of waiting and worrying for a week or two for the results. 
Sally 

PET scan in the morning

I just found out I have a PET scan scheduled for tomorrow morning.  I have to be there at 8.  I will be cutting it close since I work until 7am.  UIC is requesting this.  It's routine to have it done after a S.I.R.T. procedure.  http://www.uwhealth.org/radiology/selective-internal-radiation-therapy-sirt/10503

Even though it's routine, it is still going to be worrisome.  More so now then ever.  The results maybe another life changing event in my life. I can only think of 4 possibilities it could be.  The first one, there is no change. Wouldn't be the greatest news but at least the cancer is being contained and not growing.  The second possibility the cancer activity has lesson.  Which I will be dancing the jig if I hear this news.  The 3rd possibility could be a miracle has happened and I am cancer free.  Anything is possible and I do believe in the power of prayer but God's will may not allow this.  The forth and most dreadful possibility could be chemo is not working.  Cancer is growing and there for chemo treatments will be discontinue.  This is my biggest fear.  No one wants to hear they are doomed.  Especially me.  


Whatever the results, I know by the grace of God and the help of family and friends I will be able to handle it.  It frightening knowing that this time could be it.  Since there are no other treatment options, scans are scarier then a scary horror flick.  Not a good comparison since I love horror flicks. Let's  just say I am about to be scared out of my britches, waiting for the results.  

I or Sally will update with the results as soon as we know.  As for those who encounter me in their daily lives, I might not be my chipper self.  This is why.  Please understand and avoid me if I am a grump.  Thanks.  

Sometimes life gives you a few twist and turns.

I feel guilty to gripe. I am grateful for the life I have, my family, my job and my health. Yep, that is right.  I am grateful for my health.  I am not laying in a hospital not being able to function so even though I had much better days I am happy for my heath.  


I try to be positive and go along with life as if nothing is wrong.  I try, but that doesn't always happens that way. I feel like I have no choice but to get out of bed, put on a happy face (even though I always look grumpy)  and continue with my life no matter how I feel.  To be honest though, this has been a difficult summer for me.  I have had some good days but I mainly feel like crap.  If it's not one thing it's another.  I try to push myself and still do things especially with the wife and kids. I don't complain but I know when Sally knows I am not feeling well.  She will ask numerous  times if I feel OK and I can tell she is worried so I put a damper on her day as well.  I am so tired of feeling tired and like crap all the time. I wish I could have more good days then bad.  


Chemo itself is getting more depressing for me.  I was told 30 months ago I would need 12 rounds of chemo.  30 months later I am still in chemo.  I will probably be in chemo until the day I croak or the day they tell me chemo isn't working and to go home and die.  Yes, it's a depressing thought but it's my reality.  Not sure if it would have been better to know the truth from the start. I might have given up before I even began.  Dealing with chemo side effects for 6 months or even a year isn't so bad knowing it won't be forever.  Dealing with side effects knowing it will be a way of life forever, is really getting to me. Some days more so then others.  


The truth isn't always so pretty.  It's easier for me to act like everything is fine then to admit it really sucks.  The thing about life and bad days is that there is tomorrow.  Sometimes, a day makes an entire difference.  This is how I feel today but tomorrow I might wake up and love life.  That is what usually happens.  But as for lately, my life is nothing but whats it going to be today? Maybe I am just feeling sorry for myself. Actually that's not it. The hot weather we had this summer I know knocked me down as well as my stomach ulcer I been feuding with . I know that each day can change like the weather. I will have to deal with it and make the most of it. Not just for myself, but for my family and friends. This has been a rough summer, but I still had a lot of fun with my family and friends. Went to Indiana Beach, a few concerts , a couple of Ball games and went to my brothers with my kids to name a few. He lives off a lake and has a pool. The kids love it there, wish we could go more often. That helps me through the rougher patches. So things aren't actually that bad. Just have to adapt to the more unpleasant days. This is all for now. God Bless you all and thanks for reading and being a part of my journey to getting better.