Worrisome Week Waiting

The week and one day from the day I had surgery until I received the results from the doctor as to whether the cancer had spread and the stage was probably one of the worst periods of time in my life.  I was feeling good after the surgery.  I had no pain, just soreness.  After the awful pain that I had endured in the months prior, it was a relief.  I was actually able to sleep at night (sort of but the worrying interfered).  

I have never had such mood swings and poor Dave was the one who had to deal with me.  That is why it is important to me that he is able to continue to golf as that is something he absolutely loves. I had so many people checking on me plus Patrick was here. 

Of course, I imagined the worst.  The scary part for me is that I had no symptoms prior to the pain starting and so I had no idea how bad it might be.  The CT scan (which was done first) showed some thickening of the bladder wall but the MRI said it was normal aging. I was very worried that it had spread to the bladder.  But once again, I had no symptoms of any kind other than the awful pain.

Last Tuesday, Nov. 2, I got a call from Dr. Bhoola's nurse practitioner.  She gave me the results. It had not spread to any other organs but it was in some of the lymph nodes.  She said it was Stage 3.  I can't remember a lot of the conversation but I was actually relieved that it hadn't spread even though it is more aggressive than first thought.  I was scheduled for my follow-up appointment for Nov. 16 and she asked if I wanted to come in earlier.  I said "PLEASE!"  So she scheduled me for the next morning at 10:45.  I told her that when I went in the first time and had to go alone that it was very difficult to get that kind of news all alone.  She said that Dave could come with me which was a huge relief.

We met with Dr. Bhoola and he explained everything.  Right now I am cancer free. They were able to get everything. However, if I don't go through any treatment, there is a 90% chance that it will return somewhere else.  He said that he wants to do an aggressive treatment and it is statistically a 70% chance of it being completely gone.  However, he said he sees a higher percentage in his practice.  He talked about side effects and said that older people don't always have as many as younger for some reason.  I had a whole list of questions to ask him but he answered them before I could even ask them.  

The chemo will be every three weeks for six times.  It will last about five hours.  I will get one radiation treatment, I think after the third, and that will be done at MD Anderson.  All of the chemo will be done at his office.  He did tell me that I will start losing my hair after the first one and then after the second it will be gone. That really doesn't bother me.

I did ask him about continuing on the Board.  He knows how difficult it is to be on a school board right now.  He told me to follow my heart, stay active, and do what I felt was the best for me.  He also told me that they will be checking my blood regularly so if it looks like I shouldn't be going anywhere, he will tell me.

After we finished with Dr. Bhoola, his nurse practitioner spent a lot of time with us going over all kinds of things. She gave us a place to go to get a wig and a list of everything I will need in terms of over the counter meds, etc.  I did record both but haven't listened to them. 

I had some blood work done and then talked to the scheduler about getting the port put in, etc.  They had to submit everything to insurance before I can get started.

So another waiting game. He said I could get started this Wednesday.  However, they  can't schedule me until they get all of the insurance authorization taken care of.

After we left the doctor's office, we went to the wig store right down the street.  I am not much of a fashion plate and just wanted a wig that looked as much like how I wear my hair now.   I was able to get one and it is very nice.  Now I just hope I can put it on correctly.  

I called on Friday because (believe it or not) I am anxious to get started with this and get it behind me.  They still hadn't received the insurance clearance.   Saturday morning, I received a call from the insurance company saying that everything was approved through Nov. 2022.

I called the doctor's office today to see if they had the information and the wonderful young lady said she would talk to the person who does the authorizing and see what they could do.  I told her that I had received the call on Saturday.

Around 5:30 this evening, this delightful lady called me to tell me that everything was approved. She said that our state retirement insurance is AMAZING and that they will even pay for rides to and from chemo if I need it.  She also said that my years of service as an educator made me deserving to have such great insurance.  That meant a lot.

So hopefully I will be able to start this Wednesday.  Since it was after 5 when she called, she said someone would get in touch with me tomorrow.  I can do the first treatment without a port.

What a roller coaster ride this has been and know it will continue to be.  However, I feel absolutely positive that I am going to beat this.  I am in good health and I am a fighter.  

So many people have been so wonderful to us.  Between meals, texts, cards, phone calls, etc. I am so blessed in so many ways.  We have only cooked one night.  I am fairly sure that I won't be eating normally all of the time over the next weeks, but need to wait to see what my reaction is going to be.

It has been interesting to me to see how different people react to this kind of news.  Most have been wonderful, but others don't know what to say.  That is okay with me as everyone deals with issues differently.  I get that.

So tomorrow morning I am getting my hair  cut because that was suggested before it starts to fall out.  My hairdresser was wonderful and got me in right away.  We have a board meeting starting at 4 and it will be my first time out in public.  Of course, I will be wearing my mask and being extra careful.

DAMN COVID!  Not that there is ever a good time to get cancer, but with the lack of respect in our society for this and the risk of it spreading, makes these times that much more difficult.  I truly wish that everyone would continue to understand that it is still out there and be respectful by getting vaccinated and continue to wear masks  in public.  I have felt that way all along, however now that I am in this position, it really hits home.   I have to be extra careful. I read today that the Arizona Department of Health says that Arizona is the only state where COVID is the leading cause of death.  How sad is that!  

This is not political.  This is absolutely a health concern for every human, especially those of us who are dealing with what I am.

Enough of that.  We are being careful and will continue to do so.  I have every intention of being around for a long time--Dr. Bhoola said I should live into my 80's or 90's so I am not that easy to get rid of!!!

And once again, I can't begin to say how grateful I am to have Dave by my side.  He has been here to support me, put up with my ever changing moods, and be the kind and gentle human being that he is.  As long as he can golf, I am in good hands!!!!!

I don't know what I would do without Judy's support.  She is there every day for me, as is my cousin, Cecilia.  They are a blessing in my life.  Patrick has been a huge help and it is much appreciated.  

 "TO BE CONTINUED..."