Post by squirtka on Apr 5, 2009 12:58:29 GMT -6
I was diagnosed with a Myxopapillary Ependymoma L2-L4- Stage II - Nov 5'09, after having a Laminectomy performed by Dr. Allen Waziri at the University Hospital in Denver.
This will be a super long post so I can get it all out… This is very recent for me, so I have a lot to share, if I wait any longer I probably wouldn’t have all the details…
Talk about being caught off guard. I have always been considered a very healthy individual for my entire life. No real health issues or concerns. My birthday is the end of December, so last fall I was really gearing up for a ‘new’ approach on life since I would be turning 40 just before the kick off of 2009. I had definitely let my career get the best of me, and I was definitely in a rut. I have a husband and two daughters… 4 and 16… and I was definitely letting life pass me by… and it was going by fast.
I had been experiencing back pain over the past few years after the birth of my 4 year old. It would only happen every few months. My symptoms were lower back pain and sciatica. I also had some very bad nerve pain in my foot- but I don’t know if that was caused by the tumor or not. It seemed to happen due to stress on my foot from shoes being too tight or something like that. Anyway… the back pain and sciatica would come about and last for a couple days. It didn’t come up due to anything physical – it would just happen. The only things I can really think of that may have triggered the pain would be stress or constipation. I visited my PCP a few times for this issue… They finally diagnosed me with Osteitis Condensans Ilii. This is a form of arthritis in my pelvic bones.
So, with that, when my back flared up I just took some advil and figured it would go away in a day or two. Nothing to worry about.
October 25, 2008 I woke up with my back pain. I attributed it to being extremely stressed at work and for being a little constipated. This was a Saturday, however I was scheduled to fly to Reno the next day for a business trip. Sunday I woke up and the pain was still there. My husband insisted that I stay home and let my back get better… but I insisted on going since the pain usually goes away in a day or two. I may have been ok with the traveling; however we were delayed in Salt Lake City for 8 hours! My back/legs were already hurting more than they usually do, and now I am stuck having to stand or try to get comfortable sitting in airport chairs for all this time… there was nowhere for me to lay down and stretch out. The pain became more severe, and I was still constipated. By the time I got to the hotel and was able to lay down, my back had seized up so bad that it took well over an hour to have it relax enough to be able to get back up. This was the most extreme pain ever that I have experienced to date.
The next day my boss took me to an emergency clinic in Reno… the doctor there ordered Xrays… they said I probably just stressed my back out with the travel… and that I was slightly constipated and to follow up with my doctor when I got home. During this time I also noticed that I could literally go forever without needing to pee. I would go to the bathroom and make myself pee, but I didn’t ever feel the need. I was scheduled to fly back on the Thursday, but the pain continued Tuesday, and Wednesday, so I flew back early on Wednesday. I went to see my OB/GYN on Friday since I thought maybe the pain was caused by fibroids that she diagnosed me just about a month earlier. She just said that ‘Yes, you are constipated’, that may be keeping me from having to pee as well … drink some Milk of Magnesia… that should help. She did not seem to care about the extreme pain I was still in. Note: After the birth of my 4 year old (c-section) I encountered extreme constipation, I was so backed up that it cut off my urinary tract. So, I didn’t really question what was going on… I thought that I was VERY constipated… and that it was causing me not to be able to pee. Also, I figured the constipation was pushing on the pelvic bones that had the arthritis to cause the back pain and sciatica. I just remember how bad I felt about not being able to go with my kids for trick or treating… it was Halloween.
So, Saturday (Nov 1, 08), I woke up and decided that I had to go to the ER. The constipation wouldn’t go away… and the pain was still there. I was very fortunate to be seen by a doctor who was on top of his game. I was tired of hearing the same ‘diagnosis’ so I listed my symptoms and everything that I had been through that week on a piece of paper. The doctor read through it and got a good understanding that I really needed an answer to what was going on. They ordered some CT scans… they came back and the Dr. said that my bladder still looked very full (and yes, I was constipated (go figure)). I told him I emptied my bladder the best that I could before the scan. He then lifted one of my legs and asked if it hurt… and YES it did hurt… it caused sciatica. Same with the other leg. He then ordered an MRI.
Next thing we knew, a spine specialist came in to see me. His name was Dr. Bee. He seemed very concerned. He announced that they did see a mass in the lumbar region of my spinal cord. He had no clue what it was. But he was bound and determined to find someone who did know what it was. He contacted the other ‘spine’ guys in Colorado Springs, and they didn’t know what it was either. Mind you, this was a Saturday night and this guy was calling all around to people in their homes during off time, he was determined to help me. Finally he came in and said that he found a Neuro Surgeon at the University of Colorado Hospital in Denver who thinks he can help me. So, at 2am I was loaded into an ambulance and transported to Denver (about 1.5 hours). I was admitted into the UC Hospital Neurology unit. (Sun. 11/2)
They ran all sorts of tests that Sunday and Monday. I did find out that I am a very healthy individual… the rest of my body is clean and healthy (I do need to do a little follow up on my liver). Lungs, heart, kidneys, etc. etc. you name it. I am good! However, I do have a bit of an issue since I do have this mass in my lower spine. They decided I needed surgery to see if they could take it out. Wed. 11/5 I was in surgery for 6+ hours. I can’t remember what it is called, but they did monitor me during the surgery using something like an acupuncture technique. I still have scars on the inside of my heel from the needles.
Anyway, I came out of surgery just fine, I had feeling in my legs and was able to get up and walking in no time. But, Dr. Waziri was not able to remove the tumor, it was too intertwined with my nerves. He put a patch on my spinal cord to give more room, and took out some bits and pieces, but he said it was too dangerous to do any more. That evening I was told that pathology reports showed that I indeed had cancer. It’s a Myxopapillary Ependymoma L2-L4- Stage II. Wow… talk about getting some news. I never thought that I, who has had a very healthy life, would be diagnosed with cancer. My doctor said I just need to concentrate on recovering from surgery before worrying about anything else and to follow up with him in a few weeks. I was in the hospital for a total of 11 days. I was still having issues with constipation, and I had to learn how to self cathe.
Recovering from surgery was pretty uneventful. I took good care of myself and rested. The pain killers were definitely keeping me in a pretty good fog. I was still very constipated… had to do everything I could to try and keep that under control- it was a real battle though. I managed to get to where I could pee on my own. (I started by going to the bathroom every 2-3 hours and force myself to pee) I only cathed every few days to make sure I got all the fluid out. Eventually I got the sensation back to have to pee. I still sense a little bit of the feeling that if I wanted to, I could probably go about 12 hours or so without ‘having’ to pee… but I just make sure that I give it a try every few hours. It seems to work for me. The only deficits otherwise is surface numbness in my left thumb and pointer finger… and surface numbness on my right ribcage under my breast.
The next thing my doctor ordered was MRI’s of my brain and the rest of my spine to make sure the tumor hadn’t spread anywhere else before determining my treatment. I had those done… and my ‘case’ was presented once again to the neurology ‘think tank’ at University Hospital. I guess I was quite the patient… a true ‘puzzle’ for them. They found seeding (spreading) of the tumor up throughout the rest of my spinal cord. They also found what they called a little ‘red hot’ sized tumor at the base of my brain stem that also showed up on the top of my C spine. Later my radiation oncologist mentioned that they also thought that the cancer could be spread into the lining of my brain… not a specific tumor, but a sugar coating or spreading in my brain as well. Anyhow, the ‘team’ ordered full craniospinal radiation treatment… I started on Dec. 22nd and ended on Jan. 29th. I turned 40 on Dec. 27th… (my original plan was to be in Vegas for my 40th) happy birthday to me.
We did my radiation treatment here in Colorado Springs. Penrose Hospital. Dr. Anuj Peddada. He is supposedly one of the ‘best’. Anyhow… I was scheduled for 30 treatments at first… 20 to be full spine and brain. I was laid face down on the table, and the mask was put over my head to keep me in place. They also made a body cast like thing that kept me from moving during the treatment. The radiation isn’t painful, but I could definitely feel it. The first time, as soon as the beam hit my spine I felt a huge rush of nausea come over me, it was pretty amazing (not in a good way, but just amazing how that effect happened). They prescribed me anti nausea medicine for me to take each day from then on. They also prescribed steroids to keep me from having swelling in my brain from the radiation treatment. My hair started to fall out about two weeks into treatment, it was a guarantee that I would lose it all, so I opted to be proactive and shave my head. Though I wasn’t too emotional about my situation at that time, I did know that if I started to see my hair start falling out in clumps, I would definitely become emotional. Finally I was pleasantly surprised to learn that I only had to do 28 treatments- cutting off 2 treatments was like winning the lottery. The last week of treatments was brutal emotionally… it took everything in me to be able to go in and lay on that table ‘again’.
I would not wish this type of treatment upon anyone… at first I figured what the heck, my lower back is going to get zapped…I may have issues with my bowels and whatever else… but no, my entire spine and brain were undergoing this treatment. Radiation affects the good cells in the treatment area, so I have been battling nasty side effects from basically every angle. I was hoping for diarrhea since I had been constipated since surgery, but no such luck. I continued to be constipated; now it was worse than ever. I had lost the ‘trigger’ mechanism to tell my bowels that they needed to go- it didn’t matter how many stool softeners, laxatives, or bottles of mag citrate I would drink, I just could not go. I lost my hair. I fell into a total brain fog (I still have a little of it), my ears are totally dried out and they ring constantly (this was never an issue for me before), my throat developed a nasty drip in the back of it- it is still there, my esophagus has a mind of its own and decides to seize up in mid swallow (very painful)… I did get a very nasty burn on the back of my neck which turned black, I have a bit of a ‘sunburn scar’ now that the skin has fallen off. I am sure I have missed a few other side effects, but that is a good sampling of what radiation can do to you…
I do know that I went into almost a ‘zombie’ state for the month of February. I was so fatigued, it was a chore to even talk, I did not want to see anyone… I did my best to avoid being around people. It was all I could do to get up, get into my recliner in front of the tv, and just veg… “Me” as I know myself was totally gone. I am still struggling to get ‘Me’ back.
Now, over 9 weeks since my last treatment I am still a little foggy. I did gain 20 lbs from the steroids and constipation, but have since lost that due to now having a constant state of nausea (about 4 weeks now). I am still very fatigued. I still have that annoying drip in the back of my throat… my radiation doctor thought it was thrush but it turned out not to be… I am pretty sure this drip is causing my chronic nausea. My esophagus still seizes up from time to time. I have no appetite, my sense of smell and taste is heightened to the point that it really bothers me. Some smells that used to smell good make me feel sick… and chocolate has to be REALLY good quality or else it tastes like cheap chocolate flavored plastic. (another reason why I have dropped 20lbs!)
I have been experiencing more back and leg pain… this just started a couple weeks ago. I am also experiencing involuntary muscle twitches and spasms, not only in my legs but in my arms and torso. My neck is in a lot of pain and it feels like it can seize up at a moments notice. I have been going to physical therapy so I don’t know if that is triggering the new sensations I am having… or if I am having some issues in my spine. It is hard to try and differentiate what could be a radiation side effect and what may be from the tumor (or new tumors). I get weird headaches, but they are not severe and they only last a few seconds at a time. If I feel nervousness, anxiety, extreme ‘stress’, my hands will start to tremor… and if it is really intense, my whole body will tremor uncontrollably. My neck can be feeling like it does since parts of it did get double doses of radiation… My radiation doctor admits to not knowing what and for how long I should expect the radiation side effects to last… so here I am waiting to feel ‘better’ and it is just not happening.
I did go in for a follow up MRI of my brain and my lumbar spine in the end of February. This was only 4 weeks after my final radiation treatment. My neuro-oncologist (Dr. Denise Damek- University Hospital Colorado – Cancer Center) said that my brain looked good. The MRI of the lumbar region was too blown out from the residual radiation to be able to see anything well enough. I did not have an MRI of my cervical or thoracic spine. Dr. Damek figured that I need to wait until I ‘feel better’ to consider additional treatment. I couldn’t have agreed more. It had been a very long 4 months… Surgery, recovery, radiation, recovery… and I am still recovering from the radiation. I have about 2 ‘good’ hours in me a day energy wise. I have to use them wisely. Even then, I still feel sick.
However, now it has been about 5 weeks since I last met with her, and I have new ‘symptoms’ (pain, tremors, muscle spasms, etc). She’s ordered an MRI of my full spine… I am just waiting to find out when my appointment will be. She did mention doing the new chemo pill as an additional measure, but I am not sure I want to agree to that so easily (after the gruesome experience with radiation). She’s also prescribed me lyrica (for pain) and wants to give me antidepressants… but I am holding off on taking anything. I am finally off of all meds, and I can finally ‘poo’ on a daily basis (thanks to Senekot- the only med I am comfortable with taking right now) I think the medication during this whole ordeal made my condition throughout ‘recovery’ be worse than it needed to be.
I think I will be able to deal with pain, and I think I will be able to deal with quirky deficits… I guess my biggest fear is the unknown- if I get a new symptom, what does it mean? Is it something to worry about? Is there a new tumor developing? Is it in my brain? I just want to be able to get to the point where I can figure out what my new normal is going to be. I already figured out that I will never get back to ‘normal’.
I do break down easily for ‘no’ reason. I went out for dinner with my family the other night. I am trying to make and effort to ‘have fun’, but I could barely eat… and I just didn’t feel good. So, I started to shake and cry… life as I once knew it is gone. This feeling overwhelms me a lot lately… so I am making a conscious effort to create a ‘new’ life for myself, one that I can handle, and one that I can be happy with.
I have gotten tired of being asked “how do you feel”. I have gotten really tired with people wanting to know “how am I doing?” – After responding with ‘crappy’ over and over and over again… I have come up with saying “as good as I possibly can be right now”.
I will give an update once I find out when my full spine MRI will happen (I hope sooner than later) and what my doctors say. After reading all the messages on this board, I do plan on consulting Dr. Jallo for a second opinion. Especially before agreeing to chemo or additional surgeries…
This will be a super long post so I can get it all out… This is very recent for me, so I have a lot to share, if I wait any longer I probably wouldn’t have all the details…
Talk about being caught off guard. I have always been considered a very healthy individual for my entire life. No real health issues or concerns. My birthday is the end of December, so last fall I was really gearing up for a ‘new’ approach on life since I would be turning 40 just before the kick off of 2009. I had definitely let my career get the best of me, and I was definitely in a rut. I have a husband and two daughters… 4 and 16… and I was definitely letting life pass me by… and it was going by fast.
I had been experiencing back pain over the past few years after the birth of my 4 year old. It would only happen every few months. My symptoms were lower back pain and sciatica. I also had some very bad nerve pain in my foot- but I don’t know if that was caused by the tumor or not. It seemed to happen due to stress on my foot from shoes being too tight or something like that. Anyway… the back pain and sciatica would come about and last for a couple days. It didn’t come up due to anything physical – it would just happen. The only things I can really think of that may have triggered the pain would be stress or constipation. I visited my PCP a few times for this issue… They finally diagnosed me with Osteitis Condensans Ilii. This is a form of arthritis in my pelvic bones.
So, with that, when my back flared up I just took some advil and figured it would go away in a day or two. Nothing to worry about.
October 25, 2008 I woke up with my back pain. I attributed it to being extremely stressed at work and for being a little constipated. This was a Saturday, however I was scheduled to fly to Reno the next day for a business trip. Sunday I woke up and the pain was still there. My husband insisted that I stay home and let my back get better… but I insisted on going since the pain usually goes away in a day or two. I may have been ok with the traveling; however we were delayed in Salt Lake City for 8 hours! My back/legs were already hurting more than they usually do, and now I am stuck having to stand or try to get comfortable sitting in airport chairs for all this time… there was nowhere for me to lay down and stretch out. The pain became more severe, and I was still constipated. By the time I got to the hotel and was able to lay down, my back had seized up so bad that it took well over an hour to have it relax enough to be able to get back up. This was the most extreme pain ever that I have experienced to date.
The next day my boss took me to an emergency clinic in Reno… the doctor there ordered Xrays… they said I probably just stressed my back out with the travel… and that I was slightly constipated and to follow up with my doctor when I got home. During this time I also noticed that I could literally go forever without needing to pee. I would go to the bathroom and make myself pee, but I didn’t ever feel the need. I was scheduled to fly back on the Thursday, but the pain continued Tuesday, and Wednesday, so I flew back early on Wednesday. I went to see my OB/GYN on Friday since I thought maybe the pain was caused by fibroids that she diagnosed me just about a month earlier. She just said that ‘Yes, you are constipated’, that may be keeping me from having to pee as well … drink some Milk of Magnesia… that should help. She did not seem to care about the extreme pain I was still in. Note: After the birth of my 4 year old (c-section) I encountered extreme constipation, I was so backed up that it cut off my urinary tract. So, I didn’t really question what was going on… I thought that I was VERY constipated… and that it was causing me not to be able to pee. Also, I figured the constipation was pushing on the pelvic bones that had the arthritis to cause the back pain and sciatica. I just remember how bad I felt about not being able to go with my kids for trick or treating… it was Halloween.
So, Saturday (Nov 1, 08), I woke up and decided that I had to go to the ER. The constipation wouldn’t go away… and the pain was still there. I was very fortunate to be seen by a doctor who was on top of his game. I was tired of hearing the same ‘diagnosis’ so I listed my symptoms and everything that I had been through that week on a piece of paper. The doctor read through it and got a good understanding that I really needed an answer to what was going on. They ordered some CT scans… they came back and the Dr. said that my bladder still looked very full (and yes, I was constipated (go figure)). I told him I emptied my bladder the best that I could before the scan. He then lifted one of my legs and asked if it hurt… and YES it did hurt… it caused sciatica. Same with the other leg. He then ordered an MRI.
Next thing we knew, a spine specialist came in to see me. His name was Dr. Bee. He seemed very concerned. He announced that they did see a mass in the lumbar region of my spinal cord. He had no clue what it was. But he was bound and determined to find someone who did know what it was. He contacted the other ‘spine’ guys in Colorado Springs, and they didn’t know what it was either. Mind you, this was a Saturday night and this guy was calling all around to people in their homes during off time, he was determined to help me. Finally he came in and said that he found a Neuro Surgeon at the University of Colorado Hospital in Denver who thinks he can help me. So, at 2am I was loaded into an ambulance and transported to Denver (about 1.5 hours). I was admitted into the UC Hospital Neurology unit. (Sun. 11/2)
They ran all sorts of tests that Sunday and Monday. I did find out that I am a very healthy individual… the rest of my body is clean and healthy (I do need to do a little follow up on my liver). Lungs, heart, kidneys, etc. etc. you name it. I am good! However, I do have a bit of an issue since I do have this mass in my lower spine. They decided I needed surgery to see if they could take it out. Wed. 11/5 I was in surgery for 6+ hours. I can’t remember what it is called, but they did monitor me during the surgery using something like an acupuncture technique. I still have scars on the inside of my heel from the needles.
Anyway, I came out of surgery just fine, I had feeling in my legs and was able to get up and walking in no time. But, Dr. Waziri was not able to remove the tumor, it was too intertwined with my nerves. He put a patch on my spinal cord to give more room, and took out some bits and pieces, but he said it was too dangerous to do any more. That evening I was told that pathology reports showed that I indeed had cancer. It’s a Myxopapillary Ependymoma L2-L4- Stage II. Wow… talk about getting some news. I never thought that I, who has had a very healthy life, would be diagnosed with cancer. My doctor said I just need to concentrate on recovering from surgery before worrying about anything else and to follow up with him in a few weeks. I was in the hospital for a total of 11 days. I was still having issues with constipation, and I had to learn how to self cathe.
Recovering from surgery was pretty uneventful. I took good care of myself and rested. The pain killers were definitely keeping me in a pretty good fog. I was still very constipated… had to do everything I could to try and keep that under control- it was a real battle though. I managed to get to where I could pee on my own. (I started by going to the bathroom every 2-3 hours and force myself to pee) I only cathed every few days to make sure I got all the fluid out. Eventually I got the sensation back to have to pee. I still sense a little bit of the feeling that if I wanted to, I could probably go about 12 hours or so without ‘having’ to pee… but I just make sure that I give it a try every few hours. It seems to work for me. The only deficits otherwise is surface numbness in my left thumb and pointer finger… and surface numbness on my right ribcage under my breast.
The next thing my doctor ordered was MRI’s of my brain and the rest of my spine to make sure the tumor hadn’t spread anywhere else before determining my treatment. I had those done… and my ‘case’ was presented once again to the neurology ‘think tank’ at University Hospital. I guess I was quite the patient… a true ‘puzzle’ for them. They found seeding (spreading) of the tumor up throughout the rest of my spinal cord. They also found what they called a little ‘red hot’ sized tumor at the base of my brain stem that also showed up on the top of my C spine. Later my radiation oncologist mentioned that they also thought that the cancer could be spread into the lining of my brain… not a specific tumor, but a sugar coating or spreading in my brain as well. Anyhow, the ‘team’ ordered full craniospinal radiation treatment… I started on Dec. 22nd and ended on Jan. 29th. I turned 40 on Dec. 27th… (my original plan was to be in Vegas for my 40th) happy birthday to me.
We did my radiation treatment here in Colorado Springs. Penrose Hospital. Dr. Anuj Peddada. He is supposedly one of the ‘best’. Anyhow… I was scheduled for 30 treatments at first… 20 to be full spine and brain. I was laid face down on the table, and the mask was put over my head to keep me in place. They also made a body cast like thing that kept me from moving during the treatment. The radiation isn’t painful, but I could definitely feel it. The first time, as soon as the beam hit my spine I felt a huge rush of nausea come over me, it was pretty amazing (not in a good way, but just amazing how that effect happened). They prescribed me anti nausea medicine for me to take each day from then on. They also prescribed steroids to keep me from having swelling in my brain from the radiation treatment. My hair started to fall out about two weeks into treatment, it was a guarantee that I would lose it all, so I opted to be proactive and shave my head. Though I wasn’t too emotional about my situation at that time, I did know that if I started to see my hair start falling out in clumps, I would definitely become emotional. Finally I was pleasantly surprised to learn that I only had to do 28 treatments- cutting off 2 treatments was like winning the lottery. The last week of treatments was brutal emotionally… it took everything in me to be able to go in and lay on that table ‘again’.
I would not wish this type of treatment upon anyone… at first I figured what the heck, my lower back is going to get zapped…I may have issues with my bowels and whatever else… but no, my entire spine and brain were undergoing this treatment. Radiation affects the good cells in the treatment area, so I have been battling nasty side effects from basically every angle. I was hoping for diarrhea since I had been constipated since surgery, but no such luck. I continued to be constipated; now it was worse than ever. I had lost the ‘trigger’ mechanism to tell my bowels that they needed to go- it didn’t matter how many stool softeners, laxatives, or bottles of mag citrate I would drink, I just could not go. I lost my hair. I fell into a total brain fog (I still have a little of it), my ears are totally dried out and they ring constantly (this was never an issue for me before), my throat developed a nasty drip in the back of it- it is still there, my esophagus has a mind of its own and decides to seize up in mid swallow (very painful)… I did get a very nasty burn on the back of my neck which turned black, I have a bit of a ‘sunburn scar’ now that the skin has fallen off. I am sure I have missed a few other side effects, but that is a good sampling of what radiation can do to you…
I do know that I went into almost a ‘zombie’ state for the month of February. I was so fatigued, it was a chore to even talk, I did not want to see anyone… I did my best to avoid being around people. It was all I could do to get up, get into my recliner in front of the tv, and just veg… “Me” as I know myself was totally gone. I am still struggling to get ‘Me’ back.
Now, over 9 weeks since my last treatment I am still a little foggy. I did gain 20 lbs from the steroids and constipation, but have since lost that due to now having a constant state of nausea (about 4 weeks now). I am still very fatigued. I still have that annoying drip in the back of my throat… my radiation doctor thought it was thrush but it turned out not to be… I am pretty sure this drip is causing my chronic nausea. My esophagus still seizes up from time to time. I have no appetite, my sense of smell and taste is heightened to the point that it really bothers me. Some smells that used to smell good make me feel sick… and chocolate has to be REALLY good quality or else it tastes like cheap chocolate flavored plastic. (another reason why I have dropped 20lbs!)
I have been experiencing more back and leg pain… this just started a couple weeks ago. I am also experiencing involuntary muscle twitches and spasms, not only in my legs but in my arms and torso. My neck is in a lot of pain and it feels like it can seize up at a moments notice. I have been going to physical therapy so I don’t know if that is triggering the new sensations I am having… or if I am having some issues in my spine. It is hard to try and differentiate what could be a radiation side effect and what may be from the tumor (or new tumors). I get weird headaches, but they are not severe and they only last a few seconds at a time. If I feel nervousness, anxiety, extreme ‘stress’, my hands will start to tremor… and if it is really intense, my whole body will tremor uncontrollably. My neck can be feeling like it does since parts of it did get double doses of radiation… My radiation doctor admits to not knowing what and for how long I should expect the radiation side effects to last… so here I am waiting to feel ‘better’ and it is just not happening.
I did go in for a follow up MRI of my brain and my lumbar spine in the end of February. This was only 4 weeks after my final radiation treatment. My neuro-oncologist (Dr. Denise Damek- University Hospital Colorado – Cancer Center) said that my brain looked good. The MRI of the lumbar region was too blown out from the residual radiation to be able to see anything well enough. I did not have an MRI of my cervical or thoracic spine. Dr. Damek figured that I need to wait until I ‘feel better’ to consider additional treatment. I couldn’t have agreed more. It had been a very long 4 months… Surgery, recovery, radiation, recovery… and I am still recovering from the radiation. I have about 2 ‘good’ hours in me a day energy wise. I have to use them wisely. Even then, I still feel sick.
However, now it has been about 5 weeks since I last met with her, and I have new ‘symptoms’ (pain, tremors, muscle spasms, etc). She’s ordered an MRI of my full spine… I am just waiting to find out when my appointment will be. She did mention doing the new chemo pill as an additional measure, but I am not sure I want to agree to that so easily (after the gruesome experience with radiation). She’s also prescribed me lyrica (for pain) and wants to give me antidepressants… but I am holding off on taking anything. I am finally off of all meds, and I can finally ‘poo’ on a daily basis (thanks to Senekot- the only med I am comfortable with taking right now) I think the medication during this whole ordeal made my condition throughout ‘recovery’ be worse than it needed to be.
I think I will be able to deal with pain, and I think I will be able to deal with quirky deficits… I guess my biggest fear is the unknown- if I get a new symptom, what does it mean? Is it something to worry about? Is there a new tumor developing? Is it in my brain? I just want to be able to get to the point where I can figure out what my new normal is going to be. I already figured out that I will never get back to ‘normal’.
I do break down easily for ‘no’ reason. I went out for dinner with my family the other night. I am trying to make and effort to ‘have fun’, but I could barely eat… and I just didn’t feel good. So, I started to shake and cry… life as I once knew it is gone. This feeling overwhelms me a lot lately… so I am making a conscious effort to create a ‘new’ life for myself, one that I can handle, and one that I can be happy with.
I have gotten tired of being asked “how do you feel”. I have gotten really tired with people wanting to know “how am I doing?” – After responding with ‘crappy’ over and over and over again… I have come up with saying “as good as I possibly can be right now”.
I will give an update once I find out when my full spine MRI will happen (I hope sooner than later) and what my doctors say. After reading all the messages on this board, I do plan on consulting Dr. Jallo for a second opinion. Especially before agreeing to chemo or additional surgeries…