Yes, I did make it to Alaska without any issues. It was an emotional journey to return, mostly healthy and financially broke. Seattle is a beautiful city. I'll miss walking without fear of falling on the ice but that's all. I feel for my fellow cancer friends at the Seattle Cancer Care Alliance but I did my time, I'm still healing and now it's time to move on with life.
On the day I flew back, my jazz band performed for an event. They were hoping I would be there so I was. The next night (Friday) was a huge event. The Improv Club did a fantastic performance as a fundraiser to hep pay my cancer bills. It was humbling to see donations pouring in to help pay the medical bills. Although the need is real, I had a difficult time dealing with it. I've put on large fundraising events for other teachers in the past who had cancer. I didn't realize that being on the receiving end of the fundraisers was so difficult. The appreciation I felt when so many want to help is a bit overwhelming.
Some of my students also performed Saturday morning for the "Solo & Ensemble Festival" at the University. I listened to a few of my older students. As expected, they were fantastic. It was great to see other teachers but I had to stay clear of close contact. That was the busiest I've been in several months so I slept for fourteen hours last night.
Next, I'll meet with my Anchorage Oncologist on Monday and ask if I can start working half-time on Tuesday. The students seem ready to have me back, the great substitute I've had all year is glad to have some time off and I need to start my old life again.
Sunday, February 28, 2016
Wednesday, February 24, 2016
My last night in captivity
Today was a big day. I met with my primary doctor this morning to go over the upcoming risks. She told me to go easy, day by day and stay away from people. She said I shouldn't work for several months, constantly use sanitizer and no matter what, avoid getting sick. I admitted that I have a plan to slowly go back to work. I'm certain people will work with me and understand that a common cold bug could be a serious event for me right now. The doctor was VERY skeptical but I promised to take it easy, go slow and to keep a bubble of space around myself at all times.
She also told me the new diseases that I am more likely to obtain as a stem cell transplant recipient. It took her about twenty minutes just to list those diseases. The list included every possible problem that I could think of, heart problems, eye problems, joint problems, all sorts of organ problems and to top it off, I'm more likely to get another cancer!! Oh well, one step at a time.
Next, I took my son, Benny to the airport. He was a lifesaver for the past two weeks. All of my caregivers have been the best of the best.
My next appointment was the "line pull." The double hose catheter that has been sticking out of my chest for past many months is now gone. After the pull, they told me not to lift anything over ten pounds for three days or I could have bleeding issues. Then this new doctor asked me, "When are you leaving? "Tomorrow morning by plane," I said. "Do you have large luggage," she asked?
I tried to avoid the subject by complimenting her green hospital gown. It didn't work. Before I new it, she found out that I'm carrying a forty pound plus suitcase to the airport with two carry-ons and I'm also planning to gate check a tuba! She was about to cancel my flight for me but I came up with a plan. I'll get some help. A former high band friend is the Fire Marshall at Sea-Tac. Mark has been a great help to me in Seattle.
My last two appointments will be tomorrow morning, then I race to my cousins house in Renton and she (Nan) will take me to the airport. I'm looking forward to getting on with my life. I'll try to continue the blog at least until I get back to Alaska.
She also told me the new diseases that I am more likely to obtain as a stem cell transplant recipient. It took her about twenty minutes just to list those diseases. The list included every possible problem that I could think of, heart problems, eye problems, joint problems, all sorts of organ problems and to top it off, I'm more likely to get another cancer!! Oh well, one step at a time.
Next, I took my son, Benny to the airport. He was a lifesaver for the past two weeks. All of my caregivers have been the best of the best.
My next appointment was the "line pull." The double hose catheter that has been sticking out of my chest for past many months is now gone. After the pull, they told me not to lift anything over ten pounds for three days or I could have bleeding issues. Then this new doctor asked me, "When are you leaving? "Tomorrow morning by plane," I said. "Do you have large luggage," she asked?
I tried to avoid the subject by complimenting her green hospital gown. It didn't work. Before I new it, she found out that I'm carrying a forty pound plus suitcase to the airport with two carry-ons and I'm also planning to gate check a tuba! She was about to cancel my flight for me but I came up with a plan. I'll get some help. A former high band friend is the Fire Marshall at Sea-Tac. Mark has been a great help to me in Seattle.
My last two appointments will be tomorrow morning, then I race to my cousins house in Renton and she (Nan) will take me to the airport. I'm looking forward to getting on with my life. I'll try to continue the blog at least until I get back to Alaska.
Time to go to sleep
I'm not sure if my steroid is keeping me awake or the excitement of going home. It's probably both. Unless I get sick by tomorrow, I'm definitely leaving Seattle this Thursday.
The Seattle Cancer Care Alliance is an amazing place. They have saved the lives of so many people who I've met recently, many of them from Alaska. But there is still a long road to travel in cancer research. Several patients are not nearly as fortunate as I have been. I just learned of a fellow Alaskan who received the exact same treatment as I did, went home in December and passed away in January. She was much worse off than I had imagined but she kept her strength and will to live. I said goodbye to her in December, assuming she would be fine.
Her illness doesn't compare with mine. My prognosis is extremely positive. There is a slight trace amount of cancer cells left but they are diminishing every day. It's almost unmeasurable at this point. My new immune system is apparently doing its job by killing cancer cells while I sleep. I expect that my next test in two or three months will show my bad numbers to be zero!
My good numbers are measured by the friends, family and supporters who have given me such hope and confidence to get through this. It was by far the most difficult time of my life. I didn't always share the bad times in part because I refused to accept sickness to become a part of myself and in part because I don't like to share pain with others. I'll admit that it has been difficult.
Since this is close to my last blog, I'd like to clear up a misconception. For months, I've received dozens of compliments about bravery, and positive attitude and that sort of thing. While I deeply appreciate the kind words, it always made me scratch my head a little with confusion. I'm no doubt stoically stubborn about not admitting when I'm sick but virtually all of my strength to get through this was fueled through others.
A day didn't go by without hearing from supporters who were praying for my health, wishing me health or simply sending a note to say hello. I've had such overwhelming support, I had no choice but to remain positive. It seemed like (and still does) the whole world was on my side. That always gave me a tremendous feeling of strength and resolve to beat this thing. It came from you, not me. Thank you for that!!
It's almost 1:00 am. This is probably poorly written and definitely a rambling blog. Sorry for the mess. I may delete it in the morning.
My wall of strength. There are several hundred names on these cards and posters. It was a sad to take them down but I plan to read them again and again.
This is the view from the 6th floor of the SCCA. The 6th floor is the stem cell transplant unit. This was my view while waiting for over three hundred medical appointments.
The Seattle Cancer Care Alliance is an amazing place. They have saved the lives of so many people who I've met recently, many of them from Alaska. But there is still a long road to travel in cancer research. Several patients are not nearly as fortunate as I have been. I just learned of a fellow Alaskan who received the exact same treatment as I did, went home in December and passed away in January. She was much worse off than I had imagined but she kept her strength and will to live. I said goodbye to her in December, assuming she would be fine.
Her illness doesn't compare with mine. My prognosis is extremely positive. There is a slight trace amount of cancer cells left but they are diminishing every day. It's almost unmeasurable at this point. My new immune system is apparently doing its job by killing cancer cells while I sleep. I expect that my next test in two or three months will show my bad numbers to be zero!
My good numbers are measured by the friends, family and supporters who have given me such hope and confidence to get through this. It was by far the most difficult time of my life. I didn't always share the bad times in part because I refused to accept sickness to become a part of myself and in part because I don't like to share pain with others. I'll admit that it has been difficult.
Since this is close to my last blog, I'd like to clear up a misconception. For months, I've received dozens of compliments about bravery, and positive attitude and that sort of thing. While I deeply appreciate the kind words, it always made me scratch my head a little with confusion. I'm no doubt stoically stubborn about not admitting when I'm sick but virtually all of my strength to get through this was fueled through others.
A day didn't go by without hearing from supporters who were praying for my health, wishing me health or simply sending a note to say hello. I've had such overwhelming support, I had no choice but to remain positive. It seemed like (and still does) the whole world was on my side. That always gave me a tremendous feeling of strength and resolve to beat this thing. It came from you, not me. Thank you for that!!
It's almost 1:00 am. This is probably poorly written and definitely a rambling blog. Sorry for the mess. I may delete it in the morning.
My wall of strength. There are several hundred names on these cards and posters. It was a sad to take them down but I plan to read them again and again.
This is the view from the 6th floor of the SCCA. The 6th floor is the stem cell transplant unit. This was my view while waiting for over three hundred medical appointments.
Saturday, February 20, 2016
Going Home
So yesterday, I was told my release date would be in two weeks. After, some negotiation, it looks like I get to return to Alaska later this week!!! Now, I'm in a panic of finishing up appointments and packing everything for a flight as soon as Thursday.
As usual, I get exhausted after just a three or four hours of activity but I'm excited about getting home so I'll get through it. Thanks again for so much support from so many of you. There is no disease or or set back in my life that can match the overwhelming support I have received.
As usual, I get exhausted after just a three or four hours of activity but I'm excited about getting home so I'll get through it. Thanks again for so much support from so many of you. There is no disease or or set back in my life that can match the overwhelming support I have received.
Wednesday, February 17, 2016
Steroids to the Rescue
I've been living on pain killers for the past two weeks. The doctors have been seaching for the cause of my abdomen pain but can't find anything. Just yesterday, they are finally moving on with the best guess that it's an unusual symptom of graft versus host disease.
They gave me steroids to combat the disease and after one day the pain is 50% decreased. I suspect by tomorrow it will be gone. I'll have a clinic on Friday where I'm hoping they will give me my marching orders to head back to Alaska. I'll keep my fingers crossed.
Until then I'm just enjoying feeling so good simply because the pain has lessened.
Tuesday, February 16, 2016
Visitors!
David is a perfect example of the type of student I have in band this year. They're polite, friendly, great musicians and ridiculously smart. I'm baffled how they can say they miss me unless it's for my crazy ability to make group pancakes.
David's family, like so many at Chugiak has shown me nothing but kindness and support throughout my ordeal with cancer. Thanks Chugiak Band Family. I'll be back soon.
Thursday, February 11, 2016
Does Cancer Have a Soul?
Cancer doesn’t have a soul, it doesn’t have a goal or a master plan. It is nothing more than a group of duplicating cells that have somehow become exempt from destruction from their host immune system. I know that cancer doesn’t have a desire to hurt, in fact it has no desires whatsoever, but if you talk to someone who has had cancer, the chances are they look at cancer as an entity. In my case, it’s easier to understand and fight if I give my cancer autonomy as a living being within myself. It has a plan, it fights with strategy and it even has a very dark and ruthless soul.
My battle with cancer has lasted for over a year now. Agony has been handed out on both sides. Cancer and the side effects of the medications have inflicted countless hours of sickness and pain directed at me. In return, I have killed millions of the cancer cells. The last hold out for my adversary is the tumor in my right shoulder. Now, that the tumor is receiving an aggressive dose of radiation, the only remaining cancer cells will soon be a small handful of random cells, trying to restart something while my new immune system is working to eliminate them. At this stage, it would be incorrect to say that I am still “fighting cancer.” It’s more like a clean-up phase, searching for remaining cancer cells and taking them out before they can duplicate and cause other problems.
Thinking of this disease as a single autonomous entity with an agenda for destruction just makes sense. It allows me to focus on a foe that I can understand and despise. It also helps to explain actions by my deadly adversary, actions that would otherwise be explained with scientific terminology that doesn’t have the same motivational effect of fighting an enemy with such an evil and darkened soul.
So now that my cancer is perceived as an enemy with a plan, the agenda for my cancer becomes very clear. The past eight months of treatment in Seattle have included major attacks against the cancer. The first transplant killed the majority of cancer cells, the second transplant helped to continue the fight for as long as is needed. The cancer has been forced to retreat to a virtual defeat. However, the cancer and medications have also inflicted pain with countless bouts of sickness, fever and weird side effects. Both sides of this prolonged battle have tasted victory and defeat.
After a few months of enduring pain caused by my evil adversary, I realized the plan for my cancer was no longer to just cause temporary sickness through various side effects and complications. My cancer may have even abandoned the original goal of causing death or permanent debilitation. The over-all agenda was much more elaborate and drawn out. My cancer was trying to wear me down and eventually break my spirit. It was trying to destroy my soul, my inner strength, my self-identity.
Now, I’m at the end of my treatment plan. I survived two transplants, several evenings of shaking chills, episodes of vomiting, fevers, etc. The list of successful attacks from my cancer goes on and on and on. The accumulation of these episodes of illness gave me the worst sickness of all, temporary depression and moments of overwhelming loneliness. But that would all end on February 15th at the latest. That’s when I can go home and resume a normal, cancer free life. At least, that’s what I was expecting. My end date was my light at the end of the tunnel. It gave me strength to know the end was in sight. All I had to do was get through the sickness until then.
When I found out my end date was in jeopardy, I thought another end date would soon surface. My departure would just be delayed by a certain number of days. However, the genius of my disease was to inflict me with an “unknown” pain in my abdomen. The fact that it is unknown means I can’t leave Seattle until the cause is “known”. The end result is an indefinite delay in my departure. I no longer have an end date. My light at the end of the tunnel, the same light that has carried me for the past month has been sadly extinguished.
As depressing as this sounds, I am still the overwhelming winner here. Fortunately, I’m a patient person and I care much more about the overall outcome than an artificial schedule. I no longer need that light. As I prepare to leave, whenever that happens, I’m as cheerful as always. I came here to get rid of this disease and I’ll be leaving Seattle without it.
My battle with cancer has lasted for over a year now. Agony has been handed out on both sides. Cancer and the side effects of the medications have inflicted countless hours of sickness and pain directed at me. In return, I have killed millions of the cancer cells. The last hold out for my adversary is the tumor in my right shoulder. Now, that the tumor is receiving an aggressive dose of radiation, the only remaining cancer cells will soon be a small handful of random cells, trying to restart something while my new immune system is working to eliminate them. At this stage, it would be incorrect to say that I am still “fighting cancer.” It’s more like a clean-up phase, searching for remaining cancer cells and taking them out before they can duplicate and cause other problems.
Thinking of this disease as a single autonomous entity with an agenda for destruction just makes sense. It allows me to focus on a foe that I can understand and despise. It also helps to explain actions by my deadly adversary, actions that would otherwise be explained with scientific terminology that doesn’t have the same motivational effect of fighting an enemy with such an evil and darkened soul.
So now that my cancer is perceived as an enemy with a plan, the agenda for my cancer becomes very clear. The past eight months of treatment in Seattle have included major attacks against the cancer. The first transplant killed the majority of cancer cells, the second transplant helped to continue the fight for as long as is needed. The cancer has been forced to retreat to a virtual defeat. However, the cancer and medications have also inflicted pain with countless bouts of sickness, fever and weird side effects. Both sides of this prolonged battle have tasted victory and defeat.
After a few months of enduring pain caused by my evil adversary, I realized the plan for my cancer was no longer to just cause temporary sickness through various side effects and complications. My cancer may have even abandoned the original goal of causing death or permanent debilitation. The over-all agenda was much more elaborate and drawn out. My cancer was trying to wear me down and eventually break my spirit. It was trying to destroy my soul, my inner strength, my self-identity.
Now, I’m at the end of my treatment plan. I survived two transplants, several evenings of shaking chills, episodes of vomiting, fevers, etc. The list of successful attacks from my cancer goes on and on and on. The accumulation of these episodes of illness gave me the worst sickness of all, temporary depression and moments of overwhelming loneliness. But that would all end on February 15th at the latest. That’s when I can go home and resume a normal, cancer free life. At least, that’s what I was expecting. My end date was my light at the end of the tunnel. It gave me strength to know the end was in sight. All I had to do was get through the sickness until then.
When I found out my end date was in jeopardy, I thought another end date would soon surface. My departure would just be delayed by a certain number of days. However, the genius of my disease was to inflict me with an “unknown” pain in my abdomen. The fact that it is unknown means I can’t leave Seattle until the cause is “known”. The end result is an indefinite delay in my departure. I no longer have an end date. My light at the end of the tunnel, the same light that has carried me for the past month has been sadly extinguished.
As depressing as this sounds, I am still the overwhelming winner here. Fortunately, I’m a patient person and I care much more about the overall outcome than an artificial schedule. I no longer need that light. As I prepare to leave, whenever that happens, I’m as cheerful as always. I came here to get rid of this disease and I’ll be leaving Seattle without it.
Tuesday, February 9, 2016
Why I can't go home, yet...
Three mild setbacks came up recently. They came at a time that I should be packing my bags to go home. The first setback was the tumor that grew back in my right shoulder. The solution has been to attack it with radiation. I’ve had seven treatments with three to go. The radiation doctor told me yesterday that the treatment would destroy the tumor and that it will be gone for good. The last appointment is this Friday. So why can’t I leave this weekend?
I still have to take a drug called Revlimid and my doctor wants me to stay for one week after the first dose so he can monitor and treat the possible side effects. If they give me the drug on Friday, I’ll be able to leave the following Friday assuming all is well. There is still no word on when that drug will be administered.
The third health issue, keeping me in Seattle is something the doctors claim is a mystery. A couple weeks ago, my torso became very sensitive to light touch. It felt like my nerve endings were exposed. A shirt or bed sheet touching my stomach felt like a mild electric shock. Then, just three days ago the entire torso (inside the skin) began to ache. It’s been getting worse each day. Now, I’m taking lots of pain meds just to function. The the bottom line is, they won’t let me go home until they resolve this issue as well. I’m getting a CT Scan on Thursday.
As much as I’d like to go home, these setbacks may be a blessing in disguise. If these issues have to be resolved at some point, I’m glad they are being analyzed here with an entire team of oncology doctors. If I picked up the torso issue after flying to Alaska, there is a good chance I would have to repack my bags and go back to Seattle. I only know one thing for sure, I’ll be home soon and at some point in the near future, the cancer will be completely eradicated from my body.
I still have to take a drug called Revlimid and my doctor wants me to stay for one week after the first dose so he can monitor and treat the possible side effects. If they give me the drug on Friday, I’ll be able to leave the following Friday assuming all is well. There is still no word on when that drug will be administered.
The third health issue, keeping me in Seattle is something the doctors claim is a mystery. A couple weeks ago, my torso became very sensitive to light touch. It felt like my nerve endings were exposed. A shirt or bed sheet touching my stomach felt like a mild electric shock. Then, just three days ago the entire torso (inside the skin) began to ache. It’s been getting worse each day. Now, I’m taking lots of pain meds just to function. The the bottom line is, they won’t let me go home until they resolve this issue as well. I’m getting a CT Scan on Thursday.
As much as I’d like to go home, these setbacks may be a blessing in disguise. If these issues have to be resolved at some point, I’m glad they are being analyzed here with an entire team of oncology doctors. If I picked up the torso issue after flying to Alaska, there is a good chance I would have to repack my bags and go back to Seattle. I only know one thing for sure, I’ll be home soon and at some point in the near future, the cancer will be completely eradicated from my body.
Saturday, February 6, 2016
Radiation Works
The radiation is working! They said it would take a couple weeks before I notice a difference but the pain has already decreased enormously. These pictures are the radiation machine with me all hooked up. I think they strap my feet together so I don't run away!
The discussion at the weekly clinic on Friday was about wrapping things up so I can go home but the doctor gave me some disappointing news. He said I would need to stay about one week longer than expected. They are planning to give me a drug called Revlimid but it's a very difficult drug to obtain since it can cause birth defects for pregnant women. After they eventually get the drug, the doctor wants me to remain in Seattle for one week in case I have a negative reaction. That puts my end date somewhere around the 20th. Can't wait!!
Monday, February 1, 2016
Homeward Bound?
Is it time to come home? That’s the sixty-four dollar question. I think it’s close .
I had my first radiation appointment today. After a lot of set up, they did two 30 second radiation shots through my shoulder, one from the top and one from the bottom. The radiation schedule is for two weeks, ending on February 12. After that, I don’t know why they would keep me here. The regular clinic is alway on Tuesday but this week, it’s been moved to Friday so I won’t know about checking out of this place until then.
Friday will also be the date that I’ll hear the results of the bone marrow aspiration from last week. They should be able to tell me if there are any cancer cells left in the bone marrow. This time they did it twice, once in each hip. I finally took a sedative to make it a little easier but something went wrong. It didn’t feel one bit easier and I was completely alert until about an hour after the procedure. At that point, I was stumbling around the apartment for two hours. I tried to use the microwave as a refrigerator. It didn’t work. I’m still finding things in weird places.
I had my first radiation appointment today. After a lot of set up, they did two 30 second radiation shots through my shoulder, one from the top and one from the bottom. The radiation schedule is for two weeks, ending on February 12. After that, I don’t know why they would keep me here. The regular clinic is alway on Tuesday but this week, it’s been moved to Friday so I won’t know about checking out of this place until then.
Friday will also be the date that I’ll hear the results of the bone marrow aspiration from last week. They should be able to tell me if there are any cancer cells left in the bone marrow. This time they did it twice, once in each hip. I finally took a sedative to make it a little easier but something went wrong. It didn’t feel one bit easier and I was completely alert until about an hour after the procedure. At that point, I was stumbling around the apartment for two hours. I tried to use the microwave as a refrigerator. It didn’t work. I’m still finding things in weird places.
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