Last Friday I had another biopsy done down at MD Anderson. As I mentioned in a previous blog this was done to get some more tissue for them to test to see if I qualify for a clinical trial. The biopsy came off with out a hitch. In fact I was more awake during this one than I had been for my previous two. I got a call today saying they have my tissue slides ready and they are going to send them off for the test. I should know by late next week if I qualified or not. What a wonderful Christmas present that would be.
Not much else going on right now other than that. My days are pretty normal and boring. I am fatigued a lot. By 3 in the afternoon I just want to lie down and take a nap. Don't know if this is still related to the anemia or not. Doesn't help matters that I am writing this at 10:51pm. Still trying to work out in some fashion every day. The work outs are not long and they are not complex. Just trying to get the heart rate up a bit and put a little stress on the old body. The neuropathy is still pretty bad in the feet and so that limits me on how long and how hard I push myself.
I have really come to enjoy my lunch dates with friends. I have always been an introvert and done quite well at spending time by myself. Working by myself was never a problem either. Matter of fact, I kind of enjoyed it. However, there seems to be a slight shift going on. I find myself not enjoying sitting around the house by myself. It has become harder and harder to drag myself up to work knowing that I will be alone there as well. I don't feel like I am sitting around moping or feeling badly about my situation or anything like that. I just find myself looking forward to the outings and how they break up my otherwise solitary day.
Wednesday, December 15, 2010
Monday, December 6, 2010
Switching seats
Yesterday I got to participate in an experience that as of lately seems to be very rare. I got to go to a doctor, but not as the patient.
My wife is experiencing some extreme pain in her upper left shoulder. All signs point to a pinched nerve, but it is hard to know for sure. After enduring 5 days of high level pain she finally decided yesterday to bite the bullet and go see a doc even though we highly suspected that they would just tell us what we already knew. So about 4:30pm, I drive her to Care Now (we have come to love the convenience of these clinics over our family practictioner) and enter a process that I have become all too familiar with lately: fill out forms, nurse checks vitals, wait for the doc in a small examination room, and get examined.
But this time I got to sit in the "support" chair. I was there, not as the patient, but as the one who gives moral support and encouragement. I didn't have to hop up on the exam table. I didn't get interviewed. I didn't get poked and prodded. It was nice. Don't get me wrong. I am very sorry that my wife is in pain and that we had to go to the doctor in the first place. But being in the "support" chair was a refreshing change of view. I relished the chance to be the caretaker instead of the sick one and I enjoyed the role swap even if it was for a brief moment.
There was another emotion swimming around in me also, though. Again, while I am sorry for my wife's pain, I experienced a certain joy that I wasn't the only sick one around. My wife and I shared something in common. We were both not feeling well. I had somebody to commiserate with, somebody on my team. The doctor even prescribed the same medicine that I am taking for pain. Granted, our illnesses are completely different, but for a moment, I didn't feel special - called out from the crowd because of some extraordinary characteristics. I realize that may sound sick, that I would take joy in somebody else's pain. But it gets hard on a guy being the only sick one in a family. You get tired of being "special" under circumstances like this.
And it will be a brief moment indeed. This Thursday I head back down to MD Anderson for some tests and then ultimately for another biopsy on Friday. Looks like I will be hopping back onto that exam table real soon and back to my familiar view of loved ones in the "support" chairs.
My wife is experiencing some extreme pain in her upper left shoulder. All signs point to a pinched nerve, but it is hard to know for sure. After enduring 5 days of high level pain she finally decided yesterday to bite the bullet and go see a doc even though we highly suspected that they would just tell us what we already knew. So about 4:30pm, I drive her to Care Now (we have come to love the convenience of these clinics over our family practictioner) and enter a process that I have become all too familiar with lately: fill out forms, nurse checks vitals, wait for the doc in a small examination room, and get examined.
But this time I got to sit in the "support" chair. I was there, not as the patient, but as the one who gives moral support and encouragement. I didn't have to hop up on the exam table. I didn't get interviewed. I didn't get poked and prodded. It was nice. Don't get me wrong. I am very sorry that my wife is in pain and that we had to go to the doctor in the first place. But being in the "support" chair was a refreshing change of view. I relished the chance to be the caretaker instead of the sick one and I enjoyed the role swap even if it was for a brief moment.
There was another emotion swimming around in me also, though. Again, while I am sorry for my wife's pain, I experienced a certain joy that I wasn't the only sick one around. My wife and I shared something in common. We were both not feeling well. I had somebody to commiserate with, somebody on my team. The doctor even prescribed the same medicine that I am taking for pain. Granted, our illnesses are completely different, but for a moment, I didn't feel special - called out from the crowd because of some extraordinary characteristics. I realize that may sound sick, that I would take joy in somebody else's pain. But it gets hard on a guy being the only sick one in a family. You get tired of being "special" under circumstances like this.
And it will be a brief moment indeed. This Thursday I head back down to MD Anderson for some tests and then ultimately for another biopsy on Friday. Looks like I will be hopping back onto that exam table real soon and back to my familiar view of loved ones in the "support" chairs.
Thursday, December 2, 2010
Feeling a little better
The Wednesday before Thanksgiving I was down at MD Anderson and received an injection of radioactive isotopes. No superhuman powers, but I do believe the isotopes are doing their job. I am still on the pain medication, but I feel that my overall pain has decreased. There have been some side effects: mostly nausea, dizziness, and fatigue. Some of my fatigue can also probably be attributed to being close to anemic.
According to the stats, the average expectancy of pain relief from the isotopes is about 4 months, although there have been cases reported of it lasting over a year. I am hoping for the year route. It is a treatment that I can repeat down the road if the pain returns.
I also met with a researcher at MD Anderson regarding my potential participation in an upcoming clinical trial. They needed my permission to run some tests on my biopsy sample to see if I would qualify. The tests came back "uninformative," which means they need to do another biopsy they can run tests against. Apparently a very small percentage of people qualify for the clinical trial (3 to 4% of those tested), but those that do qualify, 80 to 90% have shown very encouraging results. So I have agreed to have another biopsy in hopes that I will be able to participate in the study. I have yet to hear back about when the biopsy will take place. Prayers about the upcoming biopsy and that I would qualify for the study would be greatly appreciated.
According to the stats, the average expectancy of pain relief from the isotopes is about 4 months, although there have been cases reported of it lasting over a year. I am hoping for the year route. It is a treatment that I can repeat down the road if the pain returns.
I also met with a researcher at MD Anderson regarding my potential participation in an upcoming clinical trial. They needed my permission to run some tests on my biopsy sample to see if I would qualify. The tests came back "uninformative," which means they need to do another biopsy they can run tests against. Apparently a very small percentage of people qualify for the clinical trial (3 to 4% of those tested), but those that do qualify, 80 to 90% have shown very encouraging results. So I have agreed to have another biopsy in hopes that I will be able to participate in the study. I have yet to hear back about when the biopsy will take place. Prayers about the upcoming biopsy and that I would qualify for the study would be greatly appreciated.
Tuesday, November 23, 2010
Spiderman: Round 2
Well, it looks like I get another chance to become a superhero. Tomorrow I will be down at MD Anderson again to receive an injection of radioactive isotopes if all goes according to plan. Since the beam radiation turned out to be a "no-go" for my pelvic region, the doc and his buddies decided that this was the next course of action.
My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.
My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.
Wednesday, November 17, 2010
Acceptance
In one of my earlier blog posts, I made reference to the stages in the Kubler-Ross model grief cycle in which the last stage is acceptance. At what point can a person look their own mortality in the face and accept it? At what point can they reach an inner peace with the fact that their days on this earth are near an end?
In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.
Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.
I am trying like hell not to give up, but at what point do you start working on the acceptance thing?
In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.
Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.
I am trying like hell not to give up, but at what point do you start working on the acceptance thing?
Friday, November 12, 2010
More learnings
Here's an update on what we learned at our appointments today.
Shoulder. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.
Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:
Shoulder. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.
Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:
- Foot massages (self given since he's extremely ticklish)
- Move foot around in a bowl of rice to stimulate the senses
- Wear fuzzy socks occasionally to change up the sensory routine
- Wear looser, more cushioning shoes
No more jumping rope...at least right now
Josh has, despite the additional pain he's been feeling over the last 5-6 weeks, been continuing to try to work out 3 times a week, including jumping rope, bench press, step-ups and the like. Yesterday, the doctor told Josh that he's not to jump rope or do anything more physically demanding than walking for the near future because of the risk of fractures.
We learned yesterday that:
Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.
Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.
Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.
We learned yesterday that:
- The primary tumors in his chest are still stable (after their considerable reduction with chemo).
- He has a very small mass growing next to the two primary tumors, but the doctor isn't worried about that yet.
- The cancer in his bones (particularly his hip area) has surged since last time...hence his increased pain.
- The radiation he had to his L5 vertebrae in his back did great things to beat the cancer back in that location. The doctor is very excited about this result.
Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.
Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.
Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.
Monday, November 8, 2010
Test Week
This is the week my wife and I head back down to MD Anderson for the next set of two-month scans. My last day of chemo was July 15th, so this will be the second round of scans post chemo to check to see if the tumors are stable or progressing. I have CT scans and MRIs and X-rays set up for Wednesday and then meet with the doc on Thursday to go over the results. My gut instinct tells me they are stable. Don't ask me why I think that...I just have a feeling. The rest of my body: that's another story.
I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.
I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.
Monday, November 1, 2010
Atypical diet
At 39 years of age I have to admit there were times I wished I had the physique of my high school days. I have never really been overweight, but looking in the mirror I sure would have liked to make that stomach bulge I see go away. Mission accomplished.
Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!
Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:
My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.
I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.
Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!
Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:
- I don't feel good.
- I rest to take it easy.
- I become inactive.
- I don't eat.
- I lose weight.
- I get weaker.
- And back to #1: I don't feel good...
My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.
I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.
Thursday, October 21, 2010
Family
Not too far back my mom gave me a picture frame with the caption "The love of a family is life's greatest blessing." In it she put a picture of my wife and I with our kids when they were about five or six years old. There is something about looking at the faces of my kids when they were younger that just pulls on the ole heart. Not that I don't love them to death now and think they are beautiful kids, there is just something about the images of when they were younger that gets to me. Perhaps it is because it automatically triggers a flood of great memories that we have shared. Anyway, I have placed that picture where I can see when I wake up to remind me that in that family category I am truly blessed.
I feel I could speak volumes about just my wife and kids and how wonderful they are if I possessed the soul of a writer. Then maybe I would be able to articulate my love for this woman who agreed to be my wife and share her life with me. I wish I could write poetically about her strength and beauty and how she has been a rock for me in these difficult times. To thank her for giving me these two wonderful works of art, so beautiful and smart. Just looking at my kids brings me so much joy.
But my blessings extend past my immediate family. It extends to my father who, being far more advanced in years then me and having mowed 20 billion lawns that day, still feels the need to help me carry my luggage down the stairs because he is concerned about my physical state. It extends to my mother, who happens to be 1500 miles away right now but still remembers to call for a status update because I happened to see the doctor today. To my little brother who has given up countless hours of personal time in order to research my disease and accompany me down to MD Anderson and literally sit for hours waiting on doctors. To my grandma who apparently has all of Newaygo County, Michigan praying for me. To my older brother, whom upon hearing my diagnosis, travels thousands of miles to be with me even though he is going through a rough spell himself. To my sister-in-law who hand knits me a scarf to keep me warm when we traveled to Michigan. To my other sister-in-law who buys me a year's subscription to Netflix to give me something to do while being down and out from the chemo. To my father-in-law who calls on a whim just to discuss one of my favorite topics: college football. To my mother-in-law who gives us a large sum of money to help with the medical costs. To my nephew, who upon hearing my diagnosis, shaves his head as a sign of support. To all my relatives on my dad's side of the family that welcomed us with open arms and love and support this past summer at a family reunion. And so many others.
Whatever the outcome of my journey with this noma ends up being, I travel this road knowing that I am truly blessed.
I feel I could speak volumes about just my wife and kids and how wonderful they are if I possessed the soul of a writer. Then maybe I would be able to articulate my love for this woman who agreed to be my wife and share her life with me. I wish I could write poetically about her strength and beauty and how she has been a rock for me in these difficult times. To thank her for giving me these two wonderful works of art, so beautiful and smart. Just looking at my kids brings me so much joy.
But my blessings extend past my immediate family. It extends to my father who, being far more advanced in years then me and having mowed 20 billion lawns that day, still feels the need to help me carry my luggage down the stairs because he is concerned about my physical state. It extends to my mother, who happens to be 1500 miles away right now but still remembers to call for a status update because I happened to see the doctor today. To my little brother who has given up countless hours of personal time in order to research my disease and accompany me down to MD Anderson and literally sit for hours waiting on doctors. To my grandma who apparently has all of Newaygo County, Michigan praying for me. To my older brother, whom upon hearing my diagnosis, travels thousands of miles to be with me even though he is going through a rough spell himself. To my sister-in-law who hand knits me a scarf to keep me warm when we traveled to Michigan. To my other sister-in-law who buys me a year's subscription to Netflix to give me something to do while being down and out from the chemo. To my father-in-law who calls on a whim just to discuss one of my favorite topics: college football. To my mother-in-law who gives us a large sum of money to help with the medical costs. To my nephew, who upon hearing my diagnosis, shaves his head as a sign of support. To all my relatives on my dad's side of the family that welcomed us with open arms and love and support this past summer at a family reunion. And so many others.
Whatever the outcome of my journey with this noma ends up being, I travel this road knowing that I am truly blessed.
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