Waiting and Staying Present With Bladder Cancer

 

Waiting and Bladder Cancer

Oh goodness! Waiting is so hard! Especially when you know or think you know that cancer is growing inside of you. You want everyone to MOVE so you can get this sucker out! You want to do all that needs to be done NOW so you can move on with you life. 

Wait, wait, wait, wait! 

When you think you have cancer or know you have cancer, and you have to wait... oh it is one of the worst things I have ever gone though. Life and death are in the details.

Well, that is not how healthcare works. That is now how bladder cancer works. Waiting is just a part of it. I think all of us at one point or another get seriously annoyed and angry at how slow things are moving. Don't they know I have CANCER? 

There is a process to all of this. There are protocols that need to be followed. There are lots of other patients going through really difficult things as well. 

You might need to wait to see the urologist. Then you might have to wait to see her/him AGAIN to have the cystoscopy. You wait for the test results to come back. After a TURBT surgery (where they take out the tumor and do biopsies), you will be waiting for your results of the pathology report. 

You are required to wait 4-8 weeks to start immunotherapy (called BCG - if you have stage 0 or 1 you will most likely have this protocol). You have to wait in between treatments to have a scope every three months. "Scananxiety" is a real thing!

Try your very best to live in the present. You have lots and lots of emotions flying around, and it's so easy to go to worst case scenario. It's so easy to worry about the waiting, and to worry about the treatments and the possible pain and side effects of those treatments. 

I love what one bladder cancer patient said about waiting: 

"One thing I didn’t understand when I started my bladder cancer journey was the waiting, I was so mad they weren’t moving faster but I found out later there a lot of protocols. So when they do biopsy also know as TURBT, you wait to have BCG to you heal, then there seems to be long waiting between appointments. Seems like every step forward there a lot of down time, and that real bothered me."

 Waiting for Surgery

We have to wait for the urologist to get us in for a cystogram. We have to wait for a surgery date. We have to wait for results. We have to wait for the insurance company. We have to wait for the BCG... and on and on!

The weeks prior to surgery were probably some of the most difficult days of my life. I found out on October 27, 2020 that I had a tumor growing inside of me. My experienced jerk of a urologist, was sure it was stage 0-1 cancer. The next opening for surgery was Nov 23 - what an agonizing 27 days!!!

The stages of grief were in full swing! I didn't stay in any of the stages for very long, it was quite the roller coaster ride - anger, denial, depression, shock, testing, bargaining, and even the start of acceptance. 

We didn't know for sure this wasn't cancer, but the fact that my urologist with over 30 years experience said I have the classic look of bladder cancer, was pretty convincing. 

I would have days in which in my mind, I would pretend I was dead. My husband later told me that he was doing the same thing. He was going through the same stages that I was going through.

What would life look like with me not here? Were my kids and my husband going to be okay if I wasn't alive anymore? 

I'm 41 years old...wow. Just wow.

Is this really happening to me? Did they really find a tumor or was that something else? (denial!)

What would my husband do as a widower of three young children? Would he move to be closer to family to get more support? Is everything in my life insurance up to date? Oh goodness, maybe I should have had a bigger life insurance policy!?!

Am I going to have to do chemo? Radiation? Am I going to have to pee into a bag the rest of my life? Am I going to lose my hair? I'm already dealing with suicidal depression, how can I find the strength to do this? 

I'm so angry this is happening to me and my family! Why cancer when I have no risk factors!?! I'm 41 years old! I'm a woman! I don't smoke! I have no history of cancer in my family!

Maybe I really don't need to do any of this. Maybe my urologist doesn't know what he's doing and he is just wrong. Maybe I should just let the cancer take me? I really don't want to go through treatments. This sucks! All of this really, really, sucks! All options are not the options that I want! I have no control or choice over this! I don't want to get out of bed! I don't want to do anything! What's the use?

My moods and thoughts would vacillate dramatically and violently, sometimes within days and sometimes within minutes. I was crying one minute, screaming another, praying another, laughing another (not this one so often) , completely numb another, in complete denial another, so full of joy that I'm alive another, and so on. 

It felt like I was not in control in any way! I was at the mercy of my doctor, and most of all God. What plans did God have for me? Where was God in all of this? 

The moments I was able to come to a glimmer of acceptance was when I processed this idea. When I was able to stay present. 

We didn't know what this was, it didn't help to stress about it now or to go to worst case scenario. Truly, I have no control over any of this. God has got this. He is in EVERY detail of our lives.

I had no control. This was not up to me. I would follow the protocols that my doctor put in front of me, do my treatments, do the surgery, try my best to eat right and exercise, take my vitamins - the rest was up to God. 

I would literally imagine in my mind, putting the cancer into a ball of light, and then handing it over to God. This would really give me peace. It helped me process, keep me calm, and keep perspective.

I couldn't believe that it took 4 weeks to get me into surgery. How much more did that tumor grow in that time (come to find out not much)? COVID-19 was in full-swing again. Everything was completely shut down again. 

Everything moves so slowly! My urologist is well-known and knows what he's doing. He's so busy because he has so many patients seeking after his expertise. I was willing to wait to get this done right.

Waiting for the Pathology Results

Because I had surgery so close to Thanksgiving, I knew that my pathology report on my tumor was going to take a little longer. My urologist reminded me of this as well. 

When the urologists secretary called me to schedule my appointment to get my results, the earliest he could see me was in 10 days after the surgery! UGH! Usually a pathology report comes back in 5-7 days.

MORE WAITING!!!

I take some more deep breaths. It's now been 5 weeks since I first found out I had a tumor, most likely cancerous inside me. I was cracking and loosing it! 

There is nothing I can do about this. I will try to be understanding. The Thanksgiving holiday was last week, and things are probably backed up. Covid-19 makes everything not work well.

When you ask God to help you be more patient, he will often teach you how to be patient by giving you experiences in which you HAVE to be patient. 

This was definitely one of those experiences for me.

This waiting period wasn't as intense for me, as waiting for surgery. Time truly does help with the sting of a cancer diagnosis. 

By the time I got the pathology report it was 37 days, from that first cystoscopy that showed me that a tumor was growing in my bladder. That is a long time to process all of this, and I was definitely handling things better.

My moods and emotions had stabilized.

Although I was starting to accept all of this, I was starting to freak out about getting the pathology report. 

Written in black and white, I was going to find out if this is cancer or not. 

Dec 2 finally comes. My urologist's office is 45 minutes away. I wanted my husband there with me because he is awesome, and he's a physician. I didn't know how I was going to react. I was assuming Dr. B (my urologist) was going to be an absolute jerk like he was during the cystoscopy. I was not expecting kindness, caring, or sympathy from my doctor. I needed to bring my own support.

I'm writing this post 10 months after this happened. I don't remember the details of this part well. Whatever the reason, my husband Greg could not come with me. I'm pretty sure it had to do with something that was urgent with one of my children, or something urgent with his work. He could not come.

I was devastated! I was ticked! I was scared! 

This was all last minute. When I found out Greg couldn't come, it was time to go! What in the world was I going to do? I could NOT face Dr. B and the possibility of a cancer diagnosis by myself. 

A dear friend of mine came to mind. It was a shot in the dark. How many people do you know that you can call up right this second and ask them this kind of a favor? 

Well I did. My friend's name is Rebecca. When the crap hits the fan, you find out real quick who your friends are. Rebecca is one of those friends.

I called Rebecca on my way driving to her house, hoping that she was home and that she could come. She is retired, so I thought there was a good possibility that she would be able to come, as long as she's home and didn't have other commitments.  

Gwen: "Rebecca! This is Gwen. Are you home?" 

Rebecca: "Yeah. What's up?"

Gwen: "Are you free for the next 3, maybe 4 hours? I need some help." 

Ugh... I sigh inside. I hate asking for help and I hate putting people out.

Rebecca: "Yeah sure. What can I do?" 

Thank you God for this dear friend!! Everything is going to be okay. 

Gwen: "This is going to sound crazy. I need you to come with me to Medford. I'll be at your house in like 7 minutes. Can you go with me to Medford to my doctors appointment?"

Rebecca: "... Uh... yeah! I'll be ready." 

This dear woman! She will never truly know how much this meant to me. There is something sacred about trusting another person with your worst fears, and for them to face those fears with you. What a blessing to have a friend that can hold you in this scary and sacred place.

I get to her house and pick her up, and off we go.

By this time, it looks like we are going to be about 15-20 minutes late. Driving to pick up Rebecca took a bunch of extra time. But I needed her! There was no way I was going to that appointment by myself. If you notice our conversation, she doesn't know what the doctors appointment was about. 

I had told her about the surgery, and the potential cancer diagnosis. But I hadn't told anyone but my mom, that today was the day we found out the pathology - cancer or no cancer. 

Rebecca had no idea what she was getting into. She knew I needed help, and she was there, ready to help.

But Rebecca is the type of person that is rock solid. I knew that she could handle this and be my rock. Everyone should be lucky enough to have a Rebecca in their lives. 

As we are driving along I tell her what this appointment is about. She said she was good with that, and could help. I was worried, that if I got the cancer diagnosis, that I would stop listening to what was said. I asked her if she could take notes, and ask some of the questions that I had, or anything that she thought of, if I was unable to do those. 

She agreed. 

As we're driving along, probably 15 minutes into the drive, I wanted to call the doctors office to let them know we were running 15-20 minutes late.

When I call Dr. B's office, they told me that I was not going to be able to be seen today. Dr. B had been called out to an emergency surgery. 

Dr. B's Secretary: "I'm sorry, Dr. B is not going to have time to see you today. Can I reschedule for next week?" 

I immediately pulled the car over. I knew that I was not OK. 

I - lost - it. I don't recall ever feeling this out of control in my life about what was coming out of my mouth.

Suddenly, without thinking my mouth exploded these words, like a volcano going off, halfway between crying and yelling: 

"NO! THAT IS NOT GOING TO WORK! I HAVE BEEN WAITING FOR OVER A MONTH TO FIND OUT IF THE TUMOR GROWING INSIDE ME IS CANCER OR NOT!

I WAITED 4 WEEKS TO GET SURGERY! I WAITED 10 DAYS TO GET MY RESULTS! I NEED TO KNOW TODAY! 

I'M A 41 YEAR OLD MOTHER WITH THREE KIDS AND I CANNOT WAIT ANY LONGER TO FIND OUT IF I HAVE CANCER OR NOT!

TODAY! I NEED MY RESULTS TODAY!!!!!!!" 

I have never in my life been so out of control when speaking with someone. All of my emotions of the last 37 days of waiting came pouring out, onto this poor secretary. 

After I was done yelling/crying at her, there was silence for a few seconds. There was a moment I wondered if she had hung up on me. I wouldn't have blamed her. 

Then out of the silence, with great compassion and kindness "Gwen, it's OK. Dr. B has to go to that surgery, but he will see you today, even if it's after business hours. He will see you and talk to you about your results. Does that work for you?"

HUGE sigh of relief and some more tears. How kind of this woman to react the way that she did. She heard my frustration and anger, and saw it for what it was. I was just terrified of having cancer, and I needed to know. I had reached my waiting limit.

Still being tearful but very calmly I tell her "yes, thank you." 

She scheduled me to have a phone call with Dr. B later that afternoon. It actually turned into a blessing, because now Greg would be there as well on the phone call. It was all going to work out.

I turned the car around, to drop off Rebecca. 

Yes, if you are wondering, Rebecca was in the car with me when I lost it. Somehow she is still friends with me! 😂 

I apologized for my outburst and explained to her the stress I was under. She told me there was nothing to apologize for.What an amazing human being she is. 

A few hours later the dreaded phone call comes. Greg and I are each on the phone line. Dr. B tells us that I have cancer. 

That was all I heard. I've seen movies and TV shows in which when something traumatic happens, people stop hearing what is being said. I thought this was just being overly-dramatic. I didn't think that really happens. 

Well, it did happen to me.

All my fears and questions all came to head. Tears started falling. I was so grateful that I was in the privacy of my home, instead of dealing with my incompassionate doctor in person (if you haven't read of my experience with my first cystoscopy click here). 

Greg was asking questions and taking notes furiously. I'm a nurse, so usually when I speak with my doctors, I have umpteen questions and I follow what they are saying. Not this time. 

It's that first stage of grief all over again - shock. I truly do have cancer.