On Wednesday, I went with my mom and dad to St. Louis for his day of doctors appointments. It is the first time since he switched to IV chemotherapy back at the end of December that I have been able to go with them. Let me tell you, sitting there, in the Siteman Cancer Center waiting room, going from one appt to the next made everything very "real" for me!
My family, but most of all my dad, has been on this journey to fight his cancer for a year now. Chemotherapy has always been a part of that. In the beginning, my dad was lucky enough to have a pill form of chemo that he could take at home. I never realized just how "lucky" he was until this past week. Every other week, my mom and dad's Wednesday consists of at least three appts in a row, and from what I observed, this is pretty much the "routine" of most of the patients that were there. First, he checks in to have his labs drawn. Once those are done, he goes over to his oncologists office and checks in there. After he sees the doctor, he heads back over to the other side of the waiting room and checks in for his chemo. Once chemo is finished, they are done and can head home. On some weeks he also has to see his neurologist and/or radiation oncologist. Talk about long days!
Throughout the day of appointments this past week, I was observing many different things that put things into perspective once again. I've always known that cancer doesn't discriminate, but talk about staring that statement straight in the face! While waiting for my dad's name to be called to get his labs drawn, I saw my neighbor walking through the waiting room. His wife was diagnosed with cancer this past year as well and she was back getting her chemotherapy treatment. He was telling me how upset she was going to be since she didn't get to see Henry (I had him with me and he was afraid that we would be in the doctors office by the time she got done with her treatment). I told him he should take a picture of Henry for her on his phone to show her. So, he did. Luckily, we were still in the waiting room when she came out and she was able to see him in person. She made it a point to tell me how much of a difference just seeing his picture made to her to break up the monotony of just sitting there getting her treatment.
Also in the waiting room, a young man came up and started talking to me about Henry; just wanting to know how old he was, what his name was, etc... While we were talking, I saw the scar on the side of his bald head and knew that he was a patient. He was telling me how fast babies grow up and how his daughter is already 7 months old. Then he introduced me to his wife and daughter and you could see just how proud he was of his family. Each week, they all pack up and come to his treatments. My dad got called in for his doctors appointment before we could finish talking so I'm not sure how long he has been fighting his cancer. It was just very inspirational to see how good of a mood the whole family was in, as if he wasn't sick at all.
At my dad's doctors appt, it was decided that he would have an additional chemo treatment added to his regiment; scheduled to start that day. During the sit in the waiting room after seeing the doctor and waiting to be called back for chemo, my mom was telling me about one of the other people they run in to often when they are there. She was mom to a 5 week old baby. When Henry was 5 weeks old, I was relishing my time at home with him and dreading the thought of having to go back to work; and this woman was dealing with chemo. Wow did I feel selfish! Then, I looked up and saw a lady in a wheelchair being checked in for lab work with a rag covering her bald head and holding an emesis bag (barf bag) in her lap while getting sick. She looked absolutely miserable; I felt so sorry for her that she was clearly only beginning her day of appointments.
I went back with my dad once he was called for his chemo treatment. There was a long hallway with big rooms that branched off of it. In each of these big rooms (called pods), there are 6 "stations". Each station is either a bed or a chair that reclines, an IV pole, and a little TV. We walked past 3 or 4 pods before getting to where my dad would be receiving his treatment that day. My dad hasn't had to get a port placed yet, so he gets stuck for an IV each time he goes. Once the IV was in, he received a steroid pre-treatment. It helps so that he doesn't have a reaction to the new chemo they added. That would take about 20 minutes to run in. Then, the first chemo (Avastin) would be started and run over 30 minutes. Once that one was finished, the new one (Carboplatin) would run in over another 30 minutes. So, all together, not including the time in between waiting for the nurses to switch the medications, his treatment would take about an hour and a half.
At the same time my dad was getting hooked up to his "pre-treatment", a man was at the station next to him getting hooked up to start his treatment. He had a large back that he brought with him full of books and magazines, and he was all alone. Many of the people there had others that sat with them during their treatment, but not this man. I had noticed him earlier in the day as well and he stood out to me because he was the only person I noticed all day that never had someone there with him; not at his labwork, his doctors appt, and now at his chemo. I can't imagine how lonely that would be. I can only hope this is not how it goes each time he comes in for treatment!
My mom and I went to get something to eat while my dad got his treatment. The main side effect he has is fatigue, so he sleeps during the majority of his treatment time. When we got back to the floor after eating, I heard the "chemo bell" ring. I automatically started clapping, as did everyone else in the large waiting room. This man had just finished his last chemo treatment! I knew there was a radiation bell, but I didn't realize there was a chemo bell as well. It made me realize that for some cancers, ringing the chemo bell is a possible positive outcome! For my dad, however, that will never be something he gets to do. His chemo is simply prolonging his life, not curing his cancer.
My dad had just started his second chemo when we got back there to sit with him. He was still sleeping, but woke up once he realized we were there to talk to. He is such a "chatty Kathy" to anyone who will listen thanks to these steroids he is on. He couldn't stop thanking me for being there and he kept talking to Henry who was wide awake and very engaged on my dad. My dad was pretty down after finding out he needed another chemo added, but he smiled a lot when he was talking with Henry. I'm so glad we could be there for him on such a rough day.
As we were leaving once dad was finished and his IV was out, I asked the man sitting alone next to us if he had much longer to go on his treatment. It had been about a total of 2 hours by this time since the start of their treatments. His response was, "not that much longer... just 90 minutes or so". His statement and the positive attitude he had while sitting by himself all day just amazed me. It definitely helped to sum up my thoughts of what I had experienced that day. It made me think of the Everlast song years back, "What its Like".... you know the chorus:
God forbid you ever had to walk a mile in their shoes
'Cause then you really might know what it's like to sing the blues
Then you really might know what it's like
I now have an idea of "what its like" to be a cancer patient and receiving treatment.... sort of. I say "sort of" because I was only there one day out of many that my dad will be. I was there as a support for him, not undergoing the treatment. I can only hope that I will never completely know exactly "what its like". It also gave me a whole new respect for my mom who is there with him at each visit and at home every day. She has to face these emotions head on each and every time... It takes a very strong person to do that. This is why I say it is so important to reach out to those who have been diagnosed with cancer as well as their loved ones. Let them know how much you care, send some well wishes their way, give them a hug... it can go a LONG way!
Saturday, April 28
Tuesday, April 17
Your Grey Matters!
Here's the deal with this post.... I've tried to sit and write it several times and I haven't been able to finish it. I've contemplated many times not sharing, but at the same time, I've discovered that writing is a way for me to deal with the cards that have been dealt. I found this poem on a website (www.choosehope.com) and it resonates loudly with me!
With Easter quickly approaching, I find myself thinking back to last year at this time and how my life, and my families, was so unbelievably different. I was just beginning my new career as a nurse, our family consisted of one less child, my parents still lived in a 2-story house that had way too many rooms for the two of them but had plenty of room for pretty much anyone to stay with them, and probably the biggest difference of all.... my dad had yet to be diagnosed with terminal brain cancer. Although Easter was on April 24th last year, the holiday itself brings back a flood of memories that are difficult to think about. I still have a hard time looking at any pictures from last years egg hunt in Nebraska. To think that we were all running around, care free, while my mom was living a nightmare with my dad seizing, and neither one of her children there to help take away some of the sting when the doctors told her that the CT scan showed a mass in his brain. I can still feel the way that my heart sank and then jumped up into my throat when i read the text that conveyed this information as I sit many miles away feeling completely helpless.
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As I sit to blog last night to give an update, my mom called and said one of my dad's doctors wanted him seen for possible small seizure activity and increased neurological symptoms... so off to the hospital we went. I'll post more about that in a bit, but first I need to get my blog up to speed.
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Once again, I was interrupted... Today is my Dad's 58th birthday. Last year at this time, we were still unaware of his cancer, but in just one week's time, his diagnosis would hit us square in the face. I can't remember where exactly I left off with my last update, so I'll do a brief "year in review" until the point where I know I haven"t written about...
April 24th, 2011: Dad has his first tonic clonic (grand mal) seizure
April 26th, 2011: Dad has his first surgery to remove the tumor
April 28th, 2011: We learn of Dad's exact diagnosis; Stage 4 glioblastoma
May 20th, 2011: Dad starts his radiation treatment and chemotherapy (the pill form)
(this is the point where I stopped keeping track of exact dates and just know general time frames...)
June 2011: Dad gets an infection at this surgical site and has to have a 2nd surgery. Radiation is put on hold until his infection is healed. Dad is put on IV antibiotics at home for a couple weeks.
July 2011: IV antibiotics are done and the remaining 3 weeks of chemo are started back up...
August 2011: radiation is done!
July - September: C Diff (nasty infection in the GI tract) develops and dad's weight loss magnifies (he would eventually get down to 137lbs)
November 2011: Dad has another tonic clonic seizure after being seizure free for 6 months; develops status epilepticus by having 2 tonic clonic seizures without regaining consciousness and ends up on a ventilator. He recovers and is sent to rehab to regain strength and physical ability. While in rehab, he has yet another tonic clonic seizure and heads back to the ICU. Tests prove that he now has epilepsy and his seizure meds are upped and adjusted. Dad gets out of the hospital just after Thanksgiving.
December 2011: Just before Christmas, dad had a routine MRI to see how the chemo is working. (he has been getting them since radiation ended). The MRI showed new tumor growth, when up until this point, all his scans showed no new cancer and an empty space where the first tumor was removed. So now what? Surgery is not an option this time... the head isn't something that you can keep going back into surgery for, nor was it ever going to make his cancer go completely away. A new form of IV chemotherapy started a few days after Christmas and the pill form was discontinued. It was set that he would continue the routine MRIs and receive chemotherapy every other week and we are told it will continue until it is no longer working. They also increased his steroid dose to help minimize swelling.
Jan-March 2012: Chemo continues and dad returns to work full time. Two MRIs following the start of the Avastin (new chemo) show that the tumor is shrinking and the medicine is doing its job. The steroids increase his appetite and his weight gain commences (we are talking somewhere in the ballpark of 60 lbs). He also shows signs of Cushing Syndrome, which people can get when they are on long-term steroid use.
April 2012: New neurological symptoms develop. Dad's balance is way off, his mind seems to be much slower to "connect the dots", more seizure activity is becoming apparent (but this time its blank stares - a type of focal/partial seizure). This brings us to the post I had started previously... This particular hospital stay was only one day long and all that was needed was to increase his antiseizure medicine. Dad came home on Good Friday night. Then, one week after Easter (just 3 days ago), he went back to the hospital with severe, sharp, shooting head pain and ankle pain. While he was in the ER, he lost the ability to walk. He said he couldn't make his legs move... This time they decided to do another MRI and the results weren't as good as the previous ones. It showed that there was slight tumor growth and quite a bit of swelling. He doesn't go back to see his oncologist until Wednesday next week, when he is scheduled for his next chemotherapy treatment. We aren't sure at this point what they will do. It is possible that there is another chemo they can add to what he is currently receiving. Initially they told us that once the Avastin stopped working, that was the end of the line. But now we sit at a stand still until his doctors tell us the next step at his next appointment. He was in the hospital about 2 days this last go round just to get his pain under control and regain his strength. By his discharge, he was walking again - with a walker, and he was pain free. They increased his steroid dose once again. He went from being on 4mg in the morning, to 4mg every 6 hours. If we thought he was hungry and irritable before, I can only imagine what he will be like now.
So that sums up the last year. And my conclusion is this.... Cancer Still SUCKS... Make the most of the time you have with your loved ones; nothing is promised. Today is my Dad's 58th birthday. We went to his house this evening and here was his comment about the day: "I got my present this morning about 7:00... when I woke up".
What Cancer Cannot Do
Cancer is so limited...
It
cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It
cannot eat away peace.
It cannot destroy confidence.
It cannot kill
friendship.
It cannot shut out memories.
It cannot quench the spirit.
It
cannot silence courage.
It cannot reduce eternal life.
With that said, this is a post I started before Easter...
With Easter quickly approaching, I find myself thinking back to last year at this time and how my life, and my families, was so unbelievably different. I was just beginning my new career as a nurse, our family consisted of one less child, my parents still lived in a 2-story house that had way too many rooms for the two of them but had plenty of room for pretty much anyone to stay with them, and probably the biggest difference of all.... my dad had yet to be diagnosed with terminal brain cancer. Although Easter was on April 24th last year, the holiday itself brings back a flood of memories that are difficult to think about. I still have a hard time looking at any pictures from last years egg hunt in Nebraska. To think that we were all running around, care free, while my mom was living a nightmare with my dad seizing, and neither one of her children there to help take away some of the sting when the doctors told her that the CT scan showed a mass in his brain. I can still feel the way that my heart sank and then jumped up into my throat when i read the text that conveyed this information as I sit many miles away feeling completely helpless.
--------------------------------------------------------------------------------------------------------------------------
As I sit to blog last night to give an update, my mom called and said one of my dad's doctors wanted him seen for possible small seizure activity and increased neurological symptoms... so off to the hospital we went. I'll post more about that in a bit, but first I need to get my blog up to speed.
---------------------------------------------------------------------------------------------------------------------------
Once again, I was interrupted... Today is my Dad's 58th birthday. Last year at this time, we were still unaware of his cancer, but in just one week's time, his diagnosis would hit us square in the face. I can't remember where exactly I left off with my last update, so I'll do a brief "year in review" until the point where I know I haven"t written about...
April 24th, 2011: Dad has his first tonic clonic (grand mal) seizure
April 26th, 2011: Dad has his first surgery to remove the tumor
April 28th, 2011: We learn of Dad's exact diagnosis; Stage 4 glioblastoma
May 20th, 2011: Dad starts his radiation treatment and chemotherapy (the pill form)
(this is the point where I stopped keeping track of exact dates and just know general time frames...)
June 2011: Dad gets an infection at this surgical site and has to have a 2nd surgery. Radiation is put on hold until his infection is healed. Dad is put on IV antibiotics at home for a couple weeks.
 |
| the incision after the first surgery, prior to the second |
 |
| After the 2nd surgery. This time they left the bone flap off for fear that it had part of the infection on it... leaving an indentation on the side of his head that wasn't previously there. |
July 2011: IV antibiotics are done and the remaining 3 weeks of chemo are started back up...
August 2011: radiation is done!
 |
| It's tradition for the patient to ring the bell after they have received their last radiation treatment |
July - September: C Diff (nasty infection in the GI tract) develops and dad's weight loss magnifies (he would eventually get down to 137lbs)
 |
| His first and only beer in the last year... at the Division Championship game for the Cardinals in 2011 |
November 2011: Dad has another tonic clonic seizure after being seizure free for 6 months; develops status epilepticus by having 2 tonic clonic seizures without regaining consciousness and ends up on a ventilator. He recovers and is sent to rehab to regain strength and physical ability. While in rehab, he has yet another tonic clonic seizure and heads back to the ICU. Tests prove that he now has epilepsy and his seizure meds are upped and adjusted. Dad gets out of the hospital just after Thanksgiving.
 |
| Zach is wearing my Dad's old boy scout shirt. My dad was explaining all his badges and how to wear the uniform correctly |
December 2011: Just before Christmas, dad had a routine MRI to see how the chemo is working. (he has been getting them since radiation ended). The MRI showed new tumor growth, when up until this point, all his scans showed no new cancer and an empty space where the first tumor was removed. So now what? Surgery is not an option this time... the head isn't something that you can keep going back into surgery for, nor was it ever going to make his cancer go completely away. A new form of IV chemotherapy started a few days after Christmas and the pill form was discontinued. It was set that he would continue the routine MRIs and receive chemotherapy every other week and we are told it will continue until it is no longer working. They also increased his steroid dose to help minimize swelling.
Jan-March 2012: Chemo continues and dad returns to work full time. Two MRIs following the start of the Avastin (new chemo) show that the tumor is shrinking and the medicine is doing its job. The steroids increase his appetite and his weight gain commences (we are talking somewhere in the ballpark of 60 lbs). He also shows signs of Cushing Syndrome, which people can get when they are on long-term steroid use.
 |
| The first picture I have of my dad holding Henry. He never wanted his picture taken around this time because of the hair missing and he thought it was going to grow back, as well as the scar. |
April 2012: New neurological symptoms develop. Dad's balance is way off, his mind seems to be much slower to "connect the dots", more seizure activity is becoming apparent (but this time its blank stares - a type of focal/partial seizure). This brings us to the post I had started previously... This particular hospital stay was only one day long and all that was needed was to increase his antiseizure medicine. Dad came home on Good Friday night. Then, one week after Easter (just 3 days ago), he went back to the hospital with severe, sharp, shooting head pain and ankle pain. While he was in the ER, he lost the ability to walk. He said he couldn't make his legs move... This time they decided to do another MRI and the results weren't as good as the previous ones. It showed that there was slight tumor growth and quite a bit of swelling. He doesn't go back to see his oncologist until Wednesday next week, when he is scheduled for his next chemotherapy treatment. We aren't sure at this point what they will do. It is possible that there is another chemo they can add to what he is currently receiving. Initially they told us that once the Avastin stopped working, that was the end of the line. But now we sit at a stand still until his doctors tell us the next step at his next appointment. He was in the hospital about 2 days this last go round just to get his pain under control and regain his strength. By his discharge, he was walking again - with a walker, and he was pain free. They increased his steroid dose once again. He went from being on 4mg in the morning, to 4mg every 6 hours. If we thought he was hungry and irritable before, I can only imagine what he will be like now.
So that sums up the last year. And my conclusion is this.... Cancer Still SUCKS... Make the most of the time you have with your loved ones; nothing is promised. Today is my Dad's 58th birthday. We went to his house this evening and here was his comment about the day: "I got my present this morning about 7:00... when I woke up".
 |
| My dad with all my kids on his 58th Birthday tonight |
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