JULY 2ND, 2018 - Stroke vs. Cancer - What I have experienced and observed through the eyes of a wife who has a husband who is a stroke survivor and a cancer warrior.
A story of survival and the realities people face when faced with the impossible
We married in 1998. My husband was a hard worker. In fact, most of the time he worked his full time job in retail management and gigged all weekend. He was a lifetime musician but when we married he wanted us to have a secure life and being a musician doesn't always make that happen. So he worked his full time job and gigged on weekends. We were living the dream, well our dreams anyhow.
We had a nice home, cars, toys, vacations and our health until we didn't. My husband actually got injured on the job, a back injury which started the decline in his health and all the things that would come next. On Christmas Night 2009, my husband had a stroke. I took him to the local hospital and we spent the night in the emergency room and were released the next morning with the instructions to follow up with our Primary Care Physician. We had to wait for the doctors office to open and get an appointment 2 days after Christmas. When I brought him in to see the doctor, the doctor didn't like what he told him. My husband had experienced blurred vision, a terrible headaches and slurred speech on Christmas night. He also had some very vivid flashbacks of memories. The emergency room doctor didn't follow up on that because his vital signs seems normal. Our Primary Care Physician who had been caring for my husband since his back injury thought a CT scan of his head was in order. Long story short, that CT Scan revealed that my husband was in the midst of having a stroke.
The primary care doctor told us to get to St. Mary's Hospital immediately in Athens, GA. He called ahead and the Stroke specialists were waiting for us. They took very good care of my husband there. It turned out that my husband had a blood clot in his brain. This clot cut off blood the back of his brain. This area affects balance, some eye sight, coordination and some memories. After 6 days in the hospital on January 2, 2010 my husband was released. We were told he would have to be on blood thinners and we would have to get his blood tested weekly. That meant either going to our PC Physician weekly or all the way to Athens for the Coumadin Clinic. We opted to go to the doctors office around the corner. The only problem with that plan is that there are tons of germs in doctors offices.
Following dreams and moving to Tennessee
Having a stroke puts things in perspective. There were many things we wanted to do before we both left this earth. One of those things was to continue the pursuit of songwriting. We tied up loose ends in Georgia. That included getting trained how to use the INR machine at home so we could move to a rural area in Tennessee into a Farm House on a ridge and not have to see the doctor weekly for testing. Hubbies Cardiologist thought we were responsible enough to allow us this training. From that point on, I have tested his blood every single Thursday afternoon since around the fall of 2010.
Side Effects of Stroke
My husband's stroke left its mark but ones that were not that visible at first glance. His eye sight returned with new glasses. He now walked with a slight gait and if he turns to fast, he will loose his balance and fall. His short term memory is shot (he probably couldn't tell you what he ate for breakfast.) Me leaving him unattended for any length was just not going to happen. You see, with his kind of stroke, a blood clot, there is only 3 hours to get the patient emergency medical treatment. If I were to leave the house for an 8 hour job and he should stroke, it could mean life or death for him. So I opted to work from home and be there for him. I was able to make him healthy meals, make sure he took his arsenal of pills daily and rest when he needed it.
Other people and stroke
What I was surprised to discover was that most people didn't think much about the stroke. Our world had just crashed in around us, nothing would ever be the same and nobody seemed to notice. I don't even recall anybody even calling me and asking if there was anything they could do to help. Were we so self sufficient and nobody thought we needed a damn thing? One of his old band-mates knew this guy, a rich guy who had been diagnosed with Cancer. They actually said to us, we should get together and do a benefit for this RICH GUY. Here my hubby just had a stroke and his COBRA had just ended so he was uninsured and nobody offered to do a benefit for us. Mind-boggling..
To add insult to injury, if my husband said he couldn't do something, one friend actually said to him, "Don't play the stroke card." I was baffled, pissed and deeply hurt at how uncaring most folks were. It was like no big deal to them and we quite frankly felt we were leaving nothing behind when we left Georgia. I always wondered if people just didn't understand stroke and how that changes peoples lives.
The truth of the matter is that life was never the same. We have lived day to day always wondering if the next stroke, the fatal stroke is going to happen and when. That thought never leaves you alone. Every Thursday when we test his blood, we keep our fingers crossed that his numbers are good. It is at the point that if his dosage needs to be adjusted, I know how much to add or take away. After doing this weekly for 8 years, you get pretty damn good at it. Through the years the blood thinners have thinned my husbands skin, especially the skin on his lower legs. Brushing up against something like the edge of a cardboard box can cut his leg right through pants. If he gets a cut, a cat scratch or any kind of lower leg injury, it can take up to 2 months to heal. Between his herniated discs from the back injury and the gait, he can't walk far so he has a scooter we have used for the past 3 years to go grocery shopping or to a park. Again, this is the man that used to work 2 jobs, seven days a week. We used make the weekend gigs out of town our own little getaways. We were living large, and having lots of fun making music and spending time together.
Along comes CANCER
Most people who have been following our journey know this but for those that don't, I will give an abbreviated version of what has transpired thus far.
In October my husband was treated for what we all thought MIGHT be a KIDNEY STONE. Now, I do have to say, I didn't think it was a Kidney Stone because I knew people that had experienced them and my husband only seemed to have minor discomfort. After being treated with antibiotics and some other drugs that doctor thought would help with kidney stones, things seemed to get better. In November a few days before Thanksgiving my husband pissed out a blood clot. I immediately took him to the Emergency room. The Emergency room doctor told us we needed to follow up with a UROLOGIST. I asked her why? Was this a Kidney Stone. She said no, 'your husband has a thickening of his bladder wall." I said what could that mean?? She said bluntly, 'CANCER."
Next step was UROLOGIST who had no bedside manner and whose office was decorated in 1970's decor. He did a procedure in his office where they actually put a scope up through the penis to look inside the bladder. He finishes and comes in and announces that my husband has 'CANCER'. I was like, 'don't you need a biopsy to be able to say that conclusively?" He took offense to my question and said, "I have been doing this for 30 years. It's CANCER." Then he promptly led us out of his office saying something like he would set up a procedure my husband needed in the hospital across the street soon and they would let us know when. We left his office shell shocked and numb. I know we discussed who would drive home but I can't tell you who actually did.
I called the insurance company to see if we could have a 2nd opinion. The insurance company said yes and they also asked about our experience. I told them what had happened. They filled out a complaint against this doctor. His bedside manner was the worst I had ever seen. WE didn't want him touching my husband again. We went to Nashville for the 2nd opinion. That doctor told us that my husband would have to have a procedure where they do in and scrape out what looks to be a tumor. Then they test it to confirm what kind of cancer and to see if it is on just the top layer of the wall of the bladder or if it is in the bladder muscle. We had that appointment on December 12 in Nashville. Hubby also has a CT with contrast where we were told that the cancer had not spread. That call came on December 13 and we were thrilled to hear it was only in his bladder. At this point, we were still keeping things quiet. You don't want to say the words CANCER. You never want to say the word CANCER. The holidays were upon us and hubby got scheduled for Mid January for that procedure. This happened during the snow storms in Tennessee this year and I ended up having to drive us home doing like 20-30 miles per hour on the Interstate while hubby was hooked up to a huge catheter that was draining blood and urine into a bag. It was a nerve wracking trip. I am not sure how we made it home. 2 days later the doctor called with the results. It was worse than they thought and it was in the muscle. That meant that things were going to be harder than we thought. He wanted us to see his partner who did the most advanced cases. Nothing like getting a message like that left on your machine. That was the day I drove to the pharmacy to pick up pain killers for my husband and sobbed in the arms of a Rite Aid employee as I recalled the message I had just listened to that morning. We prayed together and I went home with pain killers in hand and a smile on my face. I did not tell my husband that news. I just couldn't when he was in such pain already.
That catheter stayed in a week and we were instructed how to remove it at home. That was a terrible moment. I was not sure if we were doing it right but we did. It was out and after a few more weeks of healing, he was scheduled to see the partner. I was forced to tell him at this point that the CANCER was in the muscle because he was going to hear it from the doctor.
I am going to have to do this in a 2 part post because I am not sure how much you can actually write here before it stops you. See you in the next post.
A story of survival and the realities people face when faced with the impossible
We married in 1998. My husband was a hard worker. In fact, most of the time he worked his full time job in retail management and gigged all weekend. He was a lifetime musician but when we married he wanted us to have a secure life and being a musician doesn't always make that happen. So he worked his full time job and gigged on weekends. We were living the dream, well our dreams anyhow.
We had a nice home, cars, toys, vacations and our health until we didn't. My husband actually got injured on the job, a back injury which started the decline in his health and all the things that would come next. On Christmas Night 2009, my husband had a stroke. I took him to the local hospital and we spent the night in the emergency room and were released the next morning with the instructions to follow up with our Primary Care Physician. We had to wait for the doctors office to open and get an appointment 2 days after Christmas. When I brought him in to see the doctor, the doctor didn't like what he told him. My husband had experienced blurred vision, a terrible headaches and slurred speech on Christmas night. He also had some very vivid flashbacks of memories. The emergency room doctor didn't follow up on that because his vital signs seems normal. Our Primary Care Physician who had been caring for my husband since his back injury thought a CT scan of his head was in order. Long story short, that CT Scan revealed that my husband was in the midst of having a stroke.
The primary care doctor told us to get to St. Mary's Hospital immediately in Athens, GA. He called ahead and the Stroke specialists were waiting for us. They took very good care of my husband there. It turned out that my husband had a blood clot in his brain. This clot cut off blood the back of his brain. This area affects balance, some eye sight, coordination and some memories. After 6 days in the hospital on January 2, 2010 my husband was released. We were told he would have to be on blood thinners and we would have to get his blood tested weekly. That meant either going to our PC Physician weekly or all the way to Athens for the Coumadin Clinic. We opted to go to the doctors office around the corner. The only problem with that plan is that there are tons of germs in doctors offices.
Following dreams and moving to Tennessee
Having a stroke puts things in perspective. There were many things we wanted to do before we both left this earth. One of those things was to continue the pursuit of songwriting. We tied up loose ends in Georgia. That included getting trained how to use the INR machine at home so we could move to a rural area in Tennessee into a Farm House on a ridge and not have to see the doctor weekly for testing. Hubbies Cardiologist thought we were responsible enough to allow us this training. From that point on, I have tested his blood every single Thursday afternoon since around the fall of 2010.
Side Effects of Stroke
My husband's stroke left its mark but ones that were not that visible at first glance. His eye sight returned with new glasses. He now walked with a slight gait and if he turns to fast, he will loose his balance and fall. His short term memory is shot (he probably couldn't tell you what he ate for breakfast.) Me leaving him unattended for any length was just not going to happen. You see, with his kind of stroke, a blood clot, there is only 3 hours to get the patient emergency medical treatment. If I were to leave the house for an 8 hour job and he should stroke, it could mean life or death for him. So I opted to work from home and be there for him. I was able to make him healthy meals, make sure he took his arsenal of pills daily and rest when he needed it.
Other people and stroke
What I was surprised to discover was that most people didn't think much about the stroke. Our world had just crashed in around us, nothing would ever be the same and nobody seemed to notice. I don't even recall anybody even calling me and asking if there was anything they could do to help. Were we so self sufficient and nobody thought we needed a damn thing? One of his old band-mates knew this guy, a rich guy who had been diagnosed with Cancer. They actually said to us, we should get together and do a benefit for this RICH GUY. Here my hubby just had a stroke and his COBRA had just ended so he was uninsured and nobody offered to do a benefit for us. Mind-boggling..
To add insult to injury, if my husband said he couldn't do something, one friend actually said to him, "Don't play the stroke card." I was baffled, pissed and deeply hurt at how uncaring most folks were. It was like no big deal to them and we quite frankly felt we were leaving nothing behind when we left Georgia. I always wondered if people just didn't understand stroke and how that changes peoples lives.
The truth of the matter is that life was never the same. We have lived day to day always wondering if the next stroke, the fatal stroke is going to happen and when. That thought never leaves you alone. Every Thursday when we test his blood, we keep our fingers crossed that his numbers are good. It is at the point that if his dosage needs to be adjusted, I know how much to add or take away. After doing this weekly for 8 years, you get pretty damn good at it. Through the years the blood thinners have thinned my husbands skin, especially the skin on his lower legs. Brushing up against something like the edge of a cardboard box can cut his leg right through pants. If he gets a cut, a cat scratch or any kind of lower leg injury, it can take up to 2 months to heal. Between his herniated discs from the back injury and the gait, he can't walk far so he has a scooter we have used for the past 3 years to go grocery shopping or to a park. Again, this is the man that used to work 2 jobs, seven days a week. We used make the weekend gigs out of town our own little getaways. We were living large, and having lots of fun making music and spending time together.
Along comes CANCER
Most people who have been following our journey know this but for those that don't, I will give an abbreviated version of what has transpired thus far.
In October my husband was treated for what we all thought MIGHT be a KIDNEY STONE. Now, I do have to say, I didn't think it was a Kidney Stone because I knew people that had experienced them and my husband only seemed to have minor discomfort. After being treated with antibiotics and some other drugs that doctor thought would help with kidney stones, things seemed to get better. In November a few days before Thanksgiving my husband pissed out a blood clot. I immediately took him to the Emergency room. The Emergency room doctor told us we needed to follow up with a UROLOGIST. I asked her why? Was this a Kidney Stone. She said no, 'your husband has a thickening of his bladder wall." I said what could that mean?? She said bluntly, 'CANCER."
Next step was UROLOGIST who had no bedside manner and whose office was decorated in 1970's decor. He did a procedure in his office where they actually put a scope up through the penis to look inside the bladder. He finishes and comes in and announces that my husband has 'CANCER'. I was like, 'don't you need a biopsy to be able to say that conclusively?" He took offense to my question and said, "I have been doing this for 30 years. It's CANCER." Then he promptly led us out of his office saying something like he would set up a procedure my husband needed in the hospital across the street soon and they would let us know when. We left his office shell shocked and numb. I know we discussed who would drive home but I can't tell you who actually did.
I called the insurance company to see if we could have a 2nd opinion. The insurance company said yes and they also asked about our experience. I told them what had happened. They filled out a complaint against this doctor. His bedside manner was the worst I had ever seen. WE didn't want him touching my husband again. We went to Nashville for the 2nd opinion. That doctor told us that my husband would have to have a procedure where they do in and scrape out what looks to be a tumor. Then they test it to confirm what kind of cancer and to see if it is on just the top layer of the wall of the bladder or if it is in the bladder muscle. We had that appointment on December 12 in Nashville. Hubby also has a CT with contrast where we were told that the cancer had not spread. That call came on December 13 and we were thrilled to hear it was only in his bladder. At this point, we were still keeping things quiet. You don't want to say the words CANCER. You never want to say the word CANCER. The holidays were upon us and hubby got scheduled for Mid January for that procedure. This happened during the snow storms in Tennessee this year and I ended up having to drive us home doing like 20-30 miles per hour on the Interstate while hubby was hooked up to a huge catheter that was draining blood and urine into a bag. It was a nerve wracking trip. I am not sure how we made it home. 2 days later the doctor called with the results. It was worse than they thought and it was in the muscle. That meant that things were going to be harder than we thought. He wanted us to see his partner who did the most advanced cases. Nothing like getting a message like that left on your machine. That was the day I drove to the pharmacy to pick up pain killers for my husband and sobbed in the arms of a Rite Aid employee as I recalled the message I had just listened to that morning. We prayed together and I went home with pain killers in hand and a smile on my face. I did not tell my husband that news. I just couldn't when he was in such pain already.
That catheter stayed in a week and we were instructed how to remove it at home. That was a terrible moment. I was not sure if we were doing it right but we did. It was out and after a few more weeks of healing, he was scheduled to see the partner. I was forced to tell him at this point that the CANCER was in the muscle because he was going to hear it from the doctor.
I am going to have to do this in a 2 part post because I am not sure how much you can actually write here before it stops you. See you in the next post.
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