Sunday, February 16, 2014
Radiation and Chemo on the Fast Track
Dr. T sends us from our appointment with him straight downstairs to radiation. We meet with the radiation oncologist who explains that this is very unusual - to schedule radiation for only three days. Normally, chemotherapy is done over a three-to-four-week period and then chemotherapy is begun. Since Scott's cancer is growing so fast, he doesn't have three weeks to work with, so the radiation oncologist says they will give him as much radiation as they safely can for three days until he starts chemotherapy. They can't do chemotherapy and radiation at the same time. Good thing, really. It's all poison to the body; better that it's one poison at a time.
They show us the scan and zero in on the humongous tumor that they are going to zap. It's one thing to hear about it and another to see it.
The radiation oncologist makes a great analogy. He says to think of the tumors as weeds in a field of grass. Radiation is a hoe to take out the big weed. Chemotherapy is the weed killer to wipe out all the other smaller weeds all at once. The hoe is direct and swift for one weed at a time, but not efficient for lots of weeds.
They explain the basic process and get everything measured and prepped. Another person comes in and takes Scott to the "tattoo" room. What it's really called, I have no idea. They put little tattoo marks on him so they will know exactly where to aim the radiation beam to hit the tumor and nothing else. They then schedule him to come back the next three afternoons for radiation - to annihilate that big nasty football-sized weed that doesn't belong inside a person's body.
A Room with a View
We know they are going to admit Scott on Saturday but they don't give us a time, so we just have to wait for a phone call. It's so hard when you have no idea when the call will come. Finally at 1:30 pm the right phone call comes. Be at the hospital at 3:00 PM.
We make the not-so-comfortable trip to the hospital. We get put in a room with another patient. He's not so happy to have a roommate. But it seems he's probably really not aware of what's going on. Just as Scott has put his hospital gown and is getting settled in, he becomes very agitated and starts screaming for the police to come, that he needs help because there is a naked man in his room. Scott realizes he's talking about HIM. He's in his hospital robe. He's not naked. Then the man threatens to kill Scott if he doesn't get out of his room. Scott sees that the man is restrained in his bed and a nurse is with him. The nurse is speaking to him calmly. I've just left the room to get meds from the pharmacy. I hear someone yelling something about the police just as I hit the elevator button and I wonder, is that Scott's roommate? I begin thinking, how is Scott going to sleep tonight with THAT going on in the room? Just then Scott texts me and says, 'Don't come upstairs yet. I don't want you to be worried or upset'. Then he texts, 'I'm in another room'. So I come upstairs and find him in a nice quiet room with no roommate. And we get the bed with the window. Wow. We've just been upgraded!
Thursday, February 6, 2014
Footballs, Chemo and Radiation
Friday, January 31st we once again, travel down to UC Davis where they perform a needle biopsy of the hard lump in Scott's abdomen. The preliminary slides come back....positive for myeloma. They then take him in for a full body PET scan with contrast. This will show any unusual areas in his body, basically masses or tumors by coloring them with dye. We will have the results on Tuesday February 4th.
Four days have never gone by sooooo sloooowwwwww.
Finally, Tuesday, February 4th arrives. I pick Scott up. We position his two pillows just right in the car seat. We get him as comfortable as possible. He times his pain medication. He brings his backup medication so he has it to take at the stroke of the third hour. His body knows exactly when three hours is up. He braces himself for the miserable, painful car ride from Lincoln to Sacramento. I watch his face. He's pale. He has perspiration on his upper lip. I tell him I'll pull over anytime he needs so he can get out and walk around if he needs to and then we'll get back on the road. He says, no just keep driving. But through all of this, he never gets cross or irritated. He never, ever once complains. He never says, why? Why me? He never gets angry. He smiles, he makes jokes.
One morning he got out of bed and he didn't quite get his feet under him and his left leg gave way and he fell. He got a rug burn on one knee. He laughed at how funny it was that he was on the ground and couldn't get up. He had to crawl to the bed to hoist himself back up. We laughed at how we always make fun of a certain commercial for a product called "Life Alert" where someone does fall down and can't get up and the slogan at the end of the advertisement says, in a very halting voice, 'Every Senior Citizen Should Have Life Alert'. He is 15 years from being a senior citizen. But we laugh anyway. It feels good to laugh. Really good. We love to laugh and try to laugh a lot.
We say a prayer together in the car that we will be prepared for whatever lies ahead. We hold hands and feel the spirit rest upon us as I offer the prayer and pray that the doctors will be inspired to know what treatment will be best and that we will feel calm and peaceful, that we will feel confident in the treatment plan and that we will know that our lives are in the Lord's hands and that we are willing to submit to His will in all things. We feel good. We are just happy to finally have answers and know we will leave the doctor's office today with a plan. Something tangible to focus on.
Our oldest son, Chad, comes with us. It is soo comforting for me to have family there. Both of our younger children are on missions. My parents are on a mission. Our other son is married and lives in Utah. All of our immediate family live in other parts of the United States except Chad. It brings me comfort to have him there with me.
The doctor comes in and says the PET scan shows what he suspected. There are multiple tumors throughout Scott's body. Even though Scott's bloodwork shows he's in remission, he is in the rare 5% of myeloma patients who have active cancer that doesn't show up in his lab work. He says his cancer is now more aggressive than it was even in July (when he had another major episode and was in the hospital for two weeks with severe complications). He says it has now mutated and that is why the tumors are outside the bone marrow just underneath the skin. It is growing out of control.
The tumor in his hip that was the size of an orange two weeks ago is now the size of a football.
Treatment must be begun immediately. Normally to do radiation and chemotherapy, they will do radiation for 3-4 weeks then start chemotherapy. Chemo has to be started within days, but radiation HAS to be done to start shrinking the football/tumor. So they only have a three-day window for radiation. So the doctor sends us down to radiation immediately after we leave the appointment. They confer with us, place tattoo dots in Scott's body to mark the exact spot where the radiation will be targeted. They schedule him the next 3 days for radiation treatment directly to the tumor at a higher dose radiation than normal. This is to ease his pain and shrink the tumor as fast as possible to alleviate all the problems it is causing. The tumor has already caused a fracture in his hip. More damage will ensue if it keeps growing.
As for chemotherapy, he will be admitted to the hospital Saturday for four days of a regimen of 4 different chemotherapy drugs. This will be part of a two-week regimen. He will then be re-evaluated to see how successful the treatment is. If it is working, he will receive another cycle. After a few cycles, he will immediately receive a donor (allogenic) transplant. He is no longer a candidate for the transplant with his own cells. His cancer is too aggressive for that. So, the 4.7 million cells that were collected will not be used. They are no longer needed.
Four days have never gone by sooooo sloooowwwwww.
Finally, Tuesday, February 4th arrives. I pick Scott up. We position his two pillows just right in the car seat. We get him as comfortable as possible. He times his pain medication. He brings his backup medication so he has it to take at the stroke of the third hour. His body knows exactly when three hours is up. He braces himself for the miserable, painful car ride from Lincoln to Sacramento. I watch his face. He's pale. He has perspiration on his upper lip. I tell him I'll pull over anytime he needs so he can get out and walk around if he needs to and then we'll get back on the road. He says, no just keep driving. But through all of this, he never gets cross or irritated. He never, ever once complains. He never says, why? Why me? He never gets angry. He smiles, he makes jokes.
One morning he got out of bed and he didn't quite get his feet under him and his left leg gave way and he fell. He got a rug burn on one knee. He laughed at how funny it was that he was on the ground and couldn't get up. He had to crawl to the bed to hoist himself back up. We laughed at how we always make fun of a certain commercial for a product called "Life Alert" where someone does fall down and can't get up and the slogan at the end of the advertisement says, in a very halting voice, 'Every Senior Citizen Should Have Life Alert'. He is 15 years from being a senior citizen. But we laugh anyway. It feels good to laugh. Really good. We love to laugh and try to laugh a lot.
We say a prayer together in the car that we will be prepared for whatever lies ahead. We hold hands and feel the spirit rest upon us as I offer the prayer and pray that the doctors will be inspired to know what treatment will be best and that we will feel calm and peaceful, that we will feel confident in the treatment plan and that we will know that our lives are in the Lord's hands and that we are willing to submit to His will in all things. We feel good. We are just happy to finally have answers and know we will leave the doctor's office today with a plan. Something tangible to focus on.
Our oldest son, Chad, comes with us. It is soo comforting for me to have family there. Both of our younger children are on missions. My parents are on a mission. Our other son is married and lives in Utah. All of our immediate family live in other parts of the United States except Chad. It brings me comfort to have him there with me.
The doctor comes in and says the PET scan shows what he suspected. There are multiple tumors throughout Scott's body. Even though Scott's bloodwork shows he's in remission, he is in the rare 5% of myeloma patients who have active cancer that doesn't show up in his lab work. He says his cancer is now more aggressive than it was even in July (when he had another major episode and was in the hospital for two weeks with severe complications). He says it has now mutated and that is why the tumors are outside the bone marrow just underneath the skin. It is growing out of control.
The tumor in his hip that was the size of an orange two weeks ago is now the size of a football.
Treatment must be begun immediately. Normally to do radiation and chemotherapy, they will do radiation for 3-4 weeks then start chemotherapy. Chemo has to be started within days, but radiation HAS to be done to start shrinking the football/tumor. So they only have a three-day window for radiation. So the doctor sends us down to radiation immediately after we leave the appointment. They confer with us, place tattoo dots in Scott's body to mark the exact spot where the radiation will be targeted. They schedule him the next 3 days for radiation treatment directly to the tumor at a higher dose radiation than normal. This is to ease his pain and shrink the tumor as fast as possible to alleviate all the problems it is causing. The tumor has already caused a fracture in his hip. More damage will ensue if it keeps growing.
As for chemotherapy, he will be admitted to the hospital Saturday for four days of a regimen of 4 different chemotherapy drugs. This will be part of a two-week regimen. He will then be re-evaluated to see how successful the treatment is. If it is working, he will receive another cycle. After a few cycles, he will immediately receive a donor (allogenic) transplant. He is no longer a candidate for the transplant with his own cells. His cancer is too aggressive for that. So, the 4.7 million cells that were collected will not be used. They are no longer needed.
MRI's, CT's and PET's
Scott's back pain is becoming increasingly painful, so he makes an appointment with our primary care physician who orders an x-ray and prescribes some minor pain medication. Two days later the x-ray results come back and look mostly normal, but just to cover all his bases, and with Scott's history, Dr. Cao orders an MRI. In order to expedite the MRI we drive down to Sacramento at 8:00 Monday night, exactly one week after the first day of the stem cell collection. The drive in the car to Sacramento is kind of uncomfortable for Scott and we really think more is going on with his back. This is a bit worrisome. Could something out of the blue just coincidentally be going on right as we are about to start the transplant. What are the odds of that?? We are on pins and needles waiting for the results.
Wednesday the results are in. They are not good. They show bulging discs, compressed nerve, and a large mass in the left posterior hip to name a few issues. All appear to be myeloma related. Based on these findings, Dr. Cao orders an urgent CT scan. The next day the CT scan is performed. This shows more details and more damage to the hips and spine from myeloma including "predominantly lytic lesions" (bone that's eaten away leaving a clear area) throughout the pelvis and a soft tissue mass measuring 4.8 x 13.0 x 13.0 cm (about the size of an orange).
Well, well.....this is of course not good and is causing Scott quite a bit of pain, some tingling in his left leg, but the biggest problem of all, he is unable to sleep due to pain and unable to sit for more than a few minutes. Pain medication is being tried and it is a balancing act to get the right amount. Everything is reported to the oncologist, Dr. Tuscano. The transplant is still on schedule for January 29th. They can treat the pain in the hospital. Scott's counts are still great, his labs are still excellent; he is still showing that he is in remission and in the perfect position for the transplant with his own cells first. So we move forward and continue to make plans with that in mind. They set up an appointment with a pain management specialist to get the pain under control and get the right amount of medications so he is comfortable and sleeping and rested and ready for the transplant on the 29th.
We see the pain management specialist on Jan 21st. They do a full and complete workup. Scott is able to almost touch his toes, has feeling in both legs, although the left leg is a bit tingly. He feels okay, still in a lot of pain when he isn’t on pain medication, and is still only sleeping about 45 minutes at a time all night long. They prescribe a couple of different pain medications, longer acting, a pain patch that stays on 48 hours, medication with morphine every three hours, medication for nerve pain, a muscle relaxer, and a sleep aide in hopes this will work. We feel SURE this will do the trick and leave very hopeful.
This pain medication works for about three days.
It seemed like everyday it was getting harder and harder for Scott to walk. He could no longer sit at all. He ate meals standing up. He worked at home on a laptop standing up. He could no longer bend over and pick anything up off the ground. His pain was becoming unbearable. The area where the "orange" sized tumor was warm and large and protruding. His left leg wasn't just tingly now, it was numb. He couldn't feel his leg. If it was touched he could barely feel someone's fingers on it. Then at other times it would burn so bad just the lightest touch would be excruciatingly painful. He had another spot near his belly button that had a protruding hard lump. Could he have a hernia out of the blue? We were just trying to figure out what could be going on. The pain was becoming relentless. Unbearable. We called the doctor to have him up medications.
On Tuesday, January 28th we had a final follow-up with Dr. Tuscano before being admitted the next morning for the transplant. We had made it!! Transplant day was the NEXT morning. Finally!!!! Now sitting in the car to drive to the hospital was a very big ordeal. It took pillows, it took someone to help Scott walk to keep him stead on his feet to get to and from the car to the doors of the hospital. He shuffled his feet when he walked. He grimaced when he got in and out of the car. He was in a great deal of pain when he got out of the car when we arrived at the appointment. A car ride was excruciating even with all the pain medication and pain patch and everything.
The doctor comes into the examining room. He asks Scott a bunch of questions. When he finds out that in just two weeks his leg has gone from tingly to almost completely numb and he has a hard lump in his abdomen and the area on his hip has noticeably gotten bigger he says there is no way he can move forward with the transplant until he finds out what is going on. He orders an urgent PET scan. He says that will detect any tumors that might be active in his body. He says it is very rare, but in about 5% of patients with myeloma, they can have active cancer without it showing up on their lab work. He double checked Scott's labs. Still within normal range. Still not moving much at all. Still within acceptable range for transplant. This was very, very strange and the doctor had no explanation for it, except to say that Scott could just one of the lucky 5% of myeloma patients who don't have results show up in their blood work. The PET scan was set for three days from that day, Friday 1/31.
Wednesday the results are in. They are not good. They show bulging discs, compressed nerve, and a large mass in the left posterior hip to name a few issues. All appear to be myeloma related. Based on these findings, Dr. Cao orders an urgent CT scan. The next day the CT scan is performed. This shows more details and more damage to the hips and spine from myeloma including "predominantly lytic lesions" (bone that's eaten away leaving a clear area) throughout the pelvis and a soft tissue mass measuring 4.8 x 13.0 x 13.0 cm (about the size of an orange).
Well, well.....this is of course not good and is causing Scott quite a bit of pain, some tingling in his left leg, but the biggest problem of all, he is unable to sleep due to pain and unable to sit for more than a few minutes. Pain medication is being tried and it is a balancing act to get the right amount. Everything is reported to the oncologist, Dr. Tuscano. The transplant is still on schedule for January 29th. They can treat the pain in the hospital. Scott's counts are still great, his labs are still excellent; he is still showing that he is in remission and in the perfect position for the transplant with his own cells first. So we move forward and continue to make plans with that in mind. They set up an appointment with a pain management specialist to get the pain under control and get the right amount of medications so he is comfortable and sleeping and rested and ready for the transplant on the 29th.
We see the pain management specialist on Jan 21st. They do a full and complete workup. Scott is able to almost touch his toes, has feeling in both legs, although the left leg is a bit tingly. He feels okay, still in a lot of pain when he isn’t on pain medication, and is still only sleeping about 45 minutes at a time all night long. They prescribe a couple of different pain medications, longer acting, a pain patch that stays on 48 hours, medication with morphine every three hours, medication for nerve pain, a muscle relaxer, and a sleep aide in hopes this will work. We feel SURE this will do the trick and leave very hopeful.
This pain medication works for about three days.
It seemed like everyday it was getting harder and harder for Scott to walk. He could no longer sit at all. He ate meals standing up. He worked at home on a laptop standing up. He could no longer bend over and pick anything up off the ground. His pain was becoming unbearable. The area where the "orange" sized tumor was warm and large and protruding. His left leg wasn't just tingly now, it was numb. He couldn't feel his leg. If it was touched he could barely feel someone's fingers on it. Then at other times it would burn so bad just the lightest touch would be excruciatingly painful. He had another spot near his belly button that had a protruding hard lump. Could he have a hernia out of the blue? We were just trying to figure out what could be going on. The pain was becoming relentless. Unbearable. We called the doctor to have him up medications.
On Tuesday, January 28th we had a final follow-up with Dr. Tuscano before being admitted the next morning for the transplant. We had made it!! Transplant day was the NEXT morning. Finally!!!! Now sitting in the car to drive to the hospital was a very big ordeal. It took pillows, it took someone to help Scott walk to keep him stead on his feet to get to and from the car to the doors of the hospital. He shuffled his feet when he walked. He grimaced when he got in and out of the car. He was in a great deal of pain when he got out of the car when we arrived at the appointment. A car ride was excruciating even with all the pain medication and pain patch and everything.
The doctor comes into the examining room. He asks Scott a bunch of questions. When he finds out that in just two weeks his leg has gone from tingly to almost completely numb and he has a hard lump in his abdomen and the area on his hip has noticeably gotten bigger he says there is no way he can move forward with the transplant until he finds out what is going on. He orders an urgent PET scan. He says that will detect any tumors that might be active in his body. He says it is very rare, but in about 5% of patients with myeloma, they can have active cancer without it showing up on their lab work. He double checked Scott's labs. Still within normal range. Still not moving much at all. Still within acceptable range for transplant. This was very, very strange and the doctor had no explanation for it, except to say that Scott could just one of the lucky 5% of myeloma patients who don't have results show up in their blood work. The PET scan was set for three days from that day, Friday 1/31.
Stem Cell Collection Complete
The next morning Scott gets his three Neupogen shots like clockwork at 7:00 am. Nurse Kim is getting pretty good at giving shots. He gets ready and heads out the door for another six hour-day of being hooked up to a machine that cycles all his blood and collects his cells. Only about 8 million cells needed today. Hopefully today will be the day. His back is pretty sore. Probably just "age". And laying in a bed most of the day. He shrugs it off. He comes home and decides to get in the tub and soak in the tub to relax his aching back. We wait for the phone call. At 7:30 pm the phone rings. Cells collected for the day: 1.6 million. Big sigh. Still not enough. Back again tomorrow. Mozobil injection given before bed. Well, they say the third times the charm. Hopefully tomorrow will be the charm. If not, they will only collect for four days, so worse case scenario, only another two days left. If they don't get enough, they have cells saved from the first harvest back in 2007 in Arizona. They can always use the backup cells.
Collection Day 3: Same as the last two days, Neupogen shots in the morning, off to the hospital. In the hospital bed, lay in bed all day. His back is really, really sore. It's so hard to lay down all day. By the time he drives home he can hardly move. He calls me to start the bath for him so he can get straight in the tub. He aches. He is stiff and sore. Something doesn't feel right in his lower back. What could it possibly be? The phone rings like clockwork. Cells collect: 1.4 million. Three day total: 4.7 million. Short the 10 million originally planned on. But the doctor says, that will do. And they call it good. Hurray, we are done collecting!!!! Stem Cell Collection Phase is over. Step one, check that off the list. One tiny little hurdle overcome. Many more big ones left. Now.....what is going on with his back?
Collection Day 3: Same as the last two days, Neupogen shots in the morning, off to the hospital. In the hospital bed, lay in bed all day. His back is really, really sore. It's so hard to lay down all day. By the time he drives home he can hardly move. He calls me to start the bath for him so he can get straight in the tub. He aches. He is stiff and sore. Something doesn't feel right in his lower back. What could it possibly be? The phone rings like clockwork. Cells collect: 1.4 million. Three day total: 4.7 million. Short the 10 million originally planned on. But the doctor says, that will do. And they call it good. Hurray, we are done collecting!!!! Stem Cell Collection Phase is over. Step one, check that off the list. One tiny little hurdle overcome. Many more big ones left. Now.....what is going on with his back?
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