In the first post, I mentioned that I am writing this blog to get my feelings out in the open. I have looked all over the internet (admittedly I'm not the best Googler in the world) but I can't find anything that addresses what adult children of parents who have cancer face.... Are we supposed to be strong and just suck it up, buttercup? Because if we are, I am failing miserably...
Mom has finished all of her chemotherapy (twelve sessions with two types of chemo) and radiation treatments (30 sessions over the course of three weeks). She actually didn't have a lot of bad side effects from the chemo but the radiation therapy was really bad... I've never seen my mother in so much pain.
All of the chemo is now out of her system and mom goes tomorrow for a PET scan to see what all of this treatment has done to the tumor... Next Tuesday, she will meet with the Oncologist to get her results. We've been in a bit of a holding pattern for the past few weeks. People ask me how my mom is doing and I go through the motions explaining that we're waiting for the chemo to get out of her system and then re-scan, etc...
When I try to talk to friends about how I feel, I can't get it out. I don't really have words to describe these feelings.
I will say I pray that the tumor is gone and my mom is cancer free and I will continue to pray every day that she remains cancer free for the rest of her life.
But here's the problem... I saw those statistics and I have read that this cancer almost always comes back... Even when (And I say when because I believe in my heart it will happen) the results come back and the tumor is gone, mom has to go get re-scanned every six week for an undetermined amount of time to make sure it doesn't come back...
I can tell you the last three week of waiting have left me an emotional wreck. I don't know how I am going to do this every six weeks!?! All of this anger and fear and raw emotion... If someone were to say the wrong thing to me right now, I am liable to either blow up or crumble into a crying mess on the floor.
Sometimes, I wake myself up screaming uncontrollably at the top of my lungs in the middle of the night. I'm assuming from a fleeting subconscious thought of losing her. Other times I wake up with a wet pillow from crying in my sleep.
I need to try to figure out a way to release this anger and fear. I've always felt silly talking to shrinks in the past but I may end up having to give it another try... I'll keep surfing the web for pointers in the interim... That and staying busy.
Thursday, July 23, 2015
Monday, July 20, 2015
Something to hope and pray for... (Intro Part 2)
After my initial shock of hearing my mother tell me she had cancer had worn off and after I stopped yelling into the phone about how I wanted to kill my mom's doctor, I started asking questions.
I work in the insurance business so I have dealt with the tests associated with a cancer Diagnosis (on the claims side of things). So I immediately started asking my mom questions. What stage is it? What kind is it? Where is this cancer center and who is this thoracic surgeon? When is the appointment? When are they doing the PET scan?
It then dawned on me that I was probably overwhelming her... Bless her heart, she had no idea of half of what I was talking about. I got the surgeon's name and told mom I would start researching stuff... I realized shortly before hanging up that my little brother (He was 33 about to be 34 but he will always be my little brother) hadn't said a word during the entire conversation... I asked if he was still on the line and he said yes. Mom asked if he was ok and he didn't respond. She then said through tears that she was going to beat this and that we had nothing to worry about.
I got off the phone and started screaming at no one... How could this have happened!?! Any of my friends would tell you that I am not a violent person in the least but I swear if that Doctor had been in front of me right then, I can't tell you how many people it would have taken to keep me from beating him to a bloody pulp!
I called my brother to check on him and to vent... I yelled about the Dr and how he could have avoided this by giving mom the CT scan months ago. I was just mad at the world and my brother was still in shock.
After I calmed down, we had a very candid conversation about the situation and I told him that there were going to be times that I was going to need to rely on him to be there for her when I can't... He lives so much closer to her and can get to her in less than four hours vs. my 10 hours in a car or a 500.00 plane ride then a two hour rental car ride from the airport...
In order to keep us both busy, I told him to help me research this Surgeon and the Cancer Center/Hospital that mom was going to. Hoping this would give us a project that would keep us both busy and occupied, I started researching myself. I looked up all the different types of Non Small Cell lung cancer which was what they said it was... Different treatments, etc...
It all depended on whether the cancer had left the original mass and spread or (metastasized) to a different part of her body... I called mom and my brother to talk to them about my findings...
Now we had something to hope and pray for... That it hadn't spread...
Three weeks go by...
The CT scan confirmed it was lung cancer and she also had Thyroid cancer. The lung cancer hadn't spread!!!
I have since learned that a dual diagnosis of cancer is pretty rare. Normally a tumor is confirmed one type of cancer and it spread to another part of the body, It is still called the original type of cancer. The Dr confirmed that mom actually does have two types of cancer but the Thyroid cancer was really small and slow growing so they decided to attack the lung cancer first...
Mom called with the plan. They were going to remove her entire left lung and it would be a slow healing process but she could still lead a normal life with one lung and she would be cancer free... I can't really convey the emotions that went through my head... I was happy and scared for my mom at the same time. I flew up and we got a hotel room in downtown St louis the night before the surgery... My mom, aunt, brother, stepdad and myself had a good dinner. We joked and ate and then went outside and took silly pictures in front of the St Louis arch. I will never forget that evening... It was the first time in my adult life that our family had ever done anything touristy together. We had never gone on vacation together before and I later told mom that we have to start vacationing together.
The next morning, we got up and went to the hospital at Oh God:30am and mom was prepped for surgery... We were able to stay with her for a little while and then they started the drugs. I remember at one point, my brother came in and the nurse said, "Here comes your baby!" I was so nervous I could have puked but that made mom smile and that helped me...
They shoo'd us out at one point so they could get started... It was going to be at least 5-7 hours... They were supposed to call us periodically to give us updates. So when they told us the Dr wanted to talk to us after an hour and a half, we didn't think anything of it. My brother had gone to the car to take a nap. I told my stepdad I would go answer it. I walked up to the phone and the Dr asked for my stepdad. I went and got him and watched his face as he picked up the phone... My aunt came and stood by me and I kept staring at my stepdad's face... I was looking for a sign of good news... The Dr kept talking and when my stepdad turned away from me, I knew something was wrong. My aunt started crying silently and I told her to calm down. We don't know what is going on yet... My stepdad and the Dr talked for way too long and when he hung up, my stepdad sighed and said, "It's inoperable. They're closing her up and the Dr will be around to see us in recovery in about 30 minutes."
An hour later we're sitting in a circle around my mom in recovery. She knew something was wrong but she didn't say anything... She was still doped up and out of the blue told us we needed to go to Hawaii.. lol It was a good tension breaker..We were all sitting around waiting for the Dr. He showed up, pulled up a chair and my mom looked at him and said, "I shouldn't be seeing you until tomorrow. What's going on."
Doctor: "Any time we operate on cancer, we always take a biopsy to confirm it's cancer. There are two types of lung cancer. Non Small Cell, which is the more common type and the type that I was sure you had and then there is the less common Small Cell Lung Cancer. You have Small Cell Lung Cancer. It is not curable but it is treatable. I had the lab check it twice and so did I."
Us: silence.
Doctor: I have contacted an Oncologist so you can start treatment. This type of cancer is usually well treated with Chemotherapy and Radiation.
In hind sight, I should never have said this out loud. I don't know why I did but it kept me from asking the question I was too scared to ask...
Me: "I read that Small Cell Lung Cancer is linked to smoking. Is that true?"
Dr: " Small Cell Lung cancer is almost exclusively linked to smoking. Appox. 99% of all small cell lung cancer cases are either smokers or ex-smokers."
Me" Why don't you go ahead with the surgery. It hasn't spread, right?"
Dr: "We almost never operate on Small Cell lung cancer. It is very aggressive and the benefit of operation doesn't outweigh the risk. Your mom is going to need all of her strength for the chemo and radiation." he turns to mom... "The oncologist will talk more about this to you. They will be calling soon to set up an appointment.
He said a few more things and walked away. I immediately texted a Dr friend of mine and asked him about small cell lung cancer. I didn't like his response. It mimicked the reason why I didn't ask the question I was too scared to ask the Dr... What do you mean Its not curable?!?
We went back to the hotel and my brother got on the phone with his wife to catch her up to speed... I fought it as long as I could but I finally gave in and started researching everything I could on small cell lung cancer...
It responds well to chemo and radiation... Yeah. the Dr told us that already... Its exclusively linked to smoking... Yeah the Dr told us that too.. Next page. Prognosis. "Oh My God! Oh My God!"
The Dr said my mom was somewhere between stages two and three...
I dropped my iPad, my brother hung up the phone and I cried.
I work in the insurance business so I have dealt with the tests associated with a cancer Diagnosis (on the claims side of things). So I immediately started asking my mom questions. What stage is it? What kind is it? Where is this cancer center and who is this thoracic surgeon? When is the appointment? When are they doing the PET scan?
It then dawned on me that I was probably overwhelming her... Bless her heart, she had no idea of half of what I was talking about. I got the surgeon's name and told mom I would start researching stuff... I realized shortly before hanging up that my little brother (He was 33 about to be 34 but he will always be my little brother) hadn't said a word during the entire conversation... I asked if he was still on the line and he said yes. Mom asked if he was ok and he didn't respond. She then said through tears that she was going to beat this and that we had nothing to worry about.
I got off the phone and started screaming at no one... How could this have happened!?! Any of my friends would tell you that I am not a violent person in the least but I swear if that Doctor had been in front of me right then, I can't tell you how many people it would have taken to keep me from beating him to a bloody pulp!
I called my brother to check on him and to vent... I yelled about the Dr and how he could have avoided this by giving mom the CT scan months ago. I was just mad at the world and my brother was still in shock.
After I calmed down, we had a very candid conversation about the situation and I told him that there were going to be times that I was going to need to rely on him to be there for her when I can't... He lives so much closer to her and can get to her in less than four hours vs. my 10 hours in a car or a 500.00 plane ride then a two hour rental car ride from the airport...
In order to keep us both busy, I told him to help me research this Surgeon and the Cancer Center/Hospital that mom was going to. Hoping this would give us a project that would keep us both busy and occupied, I started researching myself. I looked up all the different types of Non Small Cell lung cancer which was what they said it was... Different treatments, etc...
It all depended on whether the cancer had left the original mass and spread or (metastasized) to a different part of her body... I called mom and my brother to talk to them about my findings...
Now we had something to hope and pray for... That it hadn't spread...
Three weeks go by...
The CT scan confirmed it was lung cancer and she also had Thyroid cancer. The lung cancer hadn't spread!!!
I have since learned that a dual diagnosis of cancer is pretty rare. Normally a tumor is confirmed one type of cancer and it spread to another part of the body, It is still called the original type of cancer. The Dr confirmed that mom actually does have two types of cancer but the Thyroid cancer was really small and slow growing so they decided to attack the lung cancer first...
Mom called with the plan. They were going to remove her entire left lung and it would be a slow healing process but she could still lead a normal life with one lung and she would be cancer free... I can't really convey the emotions that went through my head... I was happy and scared for my mom at the same time. I flew up and we got a hotel room in downtown St louis the night before the surgery... My mom, aunt, brother, stepdad and myself had a good dinner. We joked and ate and then went outside and took silly pictures in front of the St Louis arch. I will never forget that evening... It was the first time in my adult life that our family had ever done anything touristy together. We had never gone on vacation together before and I later told mom that we have to start vacationing together.
The next morning, we got up and went to the hospital at Oh God:30am and mom was prepped for surgery... We were able to stay with her for a little while and then they started the drugs. I remember at one point, my brother came in and the nurse said, "Here comes your baby!" I was so nervous I could have puked but that made mom smile and that helped me...
They shoo'd us out at one point so they could get started... It was going to be at least 5-7 hours... They were supposed to call us periodically to give us updates. So when they told us the Dr wanted to talk to us after an hour and a half, we didn't think anything of it. My brother had gone to the car to take a nap. I told my stepdad I would go answer it. I walked up to the phone and the Dr asked for my stepdad. I went and got him and watched his face as he picked up the phone... My aunt came and stood by me and I kept staring at my stepdad's face... I was looking for a sign of good news... The Dr kept talking and when my stepdad turned away from me, I knew something was wrong. My aunt started crying silently and I told her to calm down. We don't know what is going on yet... My stepdad and the Dr talked for way too long and when he hung up, my stepdad sighed and said, "It's inoperable. They're closing her up and the Dr will be around to see us in recovery in about 30 minutes."
An hour later we're sitting in a circle around my mom in recovery. She knew something was wrong but she didn't say anything... She was still doped up and out of the blue told us we needed to go to Hawaii.. lol It was a good tension breaker..We were all sitting around waiting for the Dr. He showed up, pulled up a chair and my mom looked at him and said, "I shouldn't be seeing you until tomorrow. What's going on."
Doctor: "Any time we operate on cancer, we always take a biopsy to confirm it's cancer. There are two types of lung cancer. Non Small Cell, which is the more common type and the type that I was sure you had and then there is the less common Small Cell Lung Cancer. You have Small Cell Lung Cancer. It is not curable but it is treatable. I had the lab check it twice and so did I."
Us: silence.
Doctor: I have contacted an Oncologist so you can start treatment. This type of cancer is usually well treated with Chemotherapy and Radiation.
In hind sight, I should never have said this out loud. I don't know why I did but it kept me from asking the question I was too scared to ask...
Me: "I read that Small Cell Lung Cancer is linked to smoking. Is that true?"
Dr: " Small Cell Lung cancer is almost exclusively linked to smoking. Appox. 99% of all small cell lung cancer cases are either smokers or ex-smokers."
Me" Why don't you go ahead with the surgery. It hasn't spread, right?"
Dr: "We almost never operate on Small Cell lung cancer. It is very aggressive and the benefit of operation doesn't outweigh the risk. Your mom is going to need all of her strength for the chemo and radiation." he turns to mom... "The oncologist will talk more about this to you. They will be calling soon to set up an appointment.
He said a few more things and walked away. I immediately texted a Dr friend of mine and asked him about small cell lung cancer. I didn't like his response. It mimicked the reason why I didn't ask the question I was too scared to ask the Dr... What do you mean Its not curable?!?
We went back to the hotel and my brother got on the phone with his wife to catch her up to speed... I fought it as long as I could but I finally gave in and started researching everything I could on small cell lung cancer...
It responds well to chemo and radiation... Yeah. the Dr told us that already... Its exclusively linked to smoking... Yeah the Dr told us that too.. Next page. Prognosis. "Oh My God! Oh My God!"
The Dr said my mom was somewhere between stages two and three...
"What do you want to do now?" (Intro Part 1)
Hi...
My name is Christopher but my friends call me Topher. I have to be honest... I'm not the greatest writer in the world but I felt a need to start this blog...
My 58 year young mother has cancer.
I can't find anything online that can remotely begin to help me process the emotions that I am experiencing. I don't think a counselor can help me so I am hopeful that by getting this all out of me, I can start to process what I have been feeling and maybe even help someone else that might be feeling similarly...
It all started last fall...
My uncle had recently passed away with Lung Cancer and my mom started having trouble breathing in October 2014... No other symptoms other than she just couldn't catch her breath...She went to her regular doctor and told him what was going on and even said, "My brother just passed away with lung cancer and I want to make sure I'm ok." The Dr responded by saying oh you're fine... It must be bronchitis... Here are some antibiotics and steroids...
Three weeks later, mom is worse... She goes back to the Dr and says, Hey I'm not getting any better... As I said last time, my brother recently died of lung cancer and I want to make sure I'm ok. His response... Oh... You're fine... It's a touch of allergies... Here are some more steroids and Antihistamine pills...
Another three weeks go by and my mom is even worse. She is wheezing at this point... She goes back to the Dr and he at least orders a x ray this time and doesn't see anything... New diagnosis... chronic bronchitis... More Steroids and Antibiotics...
I went to visit mom over Christmas and she literally sounded like Darth Vader... I told her she needed to go back and demand a CT scan... Bronchitis doesn't sound like that! She said she would and she did but again, the Dr dismissed her concerns. After another month or so, I told her that she had better go back to the Dr and tell him she was not leaving that office until he ordered her a CT scan. Either that or I was going to drive ten hours up there and go with her and dare him not to order it for her.
She did what I asked and he ordered the scan. Two days later he called my mother back to give her the results.
First words out of the doctor's mouth when he walked into the room. "Well I wasn't expecting this... You have Lung Cancer. What do you want to do now..." My blood pressure is going up right now just thinking about this again...
My mom says (as only she could), "What do you mean what do you want to do now? You're the Dr, you're supposed to tell me what to do!"
The Dr then tells her she should probably go to St Louis (Closest Metropolis and Cancer Center) and calls to get her an appointment with a Thoracic Surgeon two days later.
Two hours after she found out she tried to call me but I was in an appointment. She tried three times and then called my brother and made him three-way me. I finally got out of my appointment and was able to answer. At the time, I had no idea mom had gone to get the results yet... She told us what the doctor told her and it knocked my breath right out of me.
I saw red and my life was changed forever...
My name is Christopher but my friends call me Topher. I have to be honest... I'm not the greatest writer in the world but I felt a need to start this blog...
My 58 year young mother has cancer.
I can't find anything online that can remotely begin to help me process the emotions that I am experiencing. I don't think a counselor can help me so I am hopeful that by getting this all out of me, I can start to process what I have been feeling and maybe even help someone else that might be feeling similarly...
It all started last fall...
My uncle had recently passed away with Lung Cancer and my mom started having trouble breathing in October 2014... No other symptoms other than she just couldn't catch her breath...She went to her regular doctor and told him what was going on and even said, "My brother just passed away with lung cancer and I want to make sure I'm ok." The Dr responded by saying oh you're fine... It must be bronchitis... Here are some antibiotics and steroids...
Three weeks later, mom is worse... She goes back to the Dr and says, Hey I'm not getting any better... As I said last time, my brother recently died of lung cancer and I want to make sure I'm ok. His response... Oh... You're fine... It's a touch of allergies... Here are some more steroids and Antihistamine pills...
Another three weeks go by and my mom is even worse. She is wheezing at this point... She goes back to the Dr and he at least orders a x ray this time and doesn't see anything... New diagnosis... chronic bronchitis... More Steroids and Antibiotics...
I went to visit mom over Christmas and she literally sounded like Darth Vader... I told her she needed to go back and demand a CT scan... Bronchitis doesn't sound like that! She said she would and she did but again, the Dr dismissed her concerns. After another month or so, I told her that she had better go back to the Dr and tell him she was not leaving that office until he ordered her a CT scan. Either that or I was going to drive ten hours up there and go with her and dare him not to order it for her.
She did what I asked and he ordered the scan. Two days later he called my mother back to give her the results.
First words out of the doctor's mouth when he walked into the room. "Well I wasn't expecting this... You have Lung Cancer. What do you want to do now..." My blood pressure is going up right now just thinking about this again...
My mom says (as only she could), "What do you mean what do you want to do now? You're the Dr, you're supposed to tell me what to do!"
The Dr then tells her she should probably go to St Louis (Closest Metropolis and Cancer Center) and calls to get her an appointment with a Thoracic Surgeon two days later.
Two hours after she found out she tried to call me but I was in an appointment. She tried three times and then called my brother and made him three-way me. I finally got out of my appointment and was able to answer. At the time, I had no idea mom had gone to get the results yet... She told us what the doctor told her and it knocked my breath right out of me.
I saw red and my life was changed forever...
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