Wednesday, October 25, 2006
Brief Update
Treatments ended two weeks ago but Mark is still bedridden most of the time. The radiation treatments he received were much stronger, concentrated, and more frequent than others you may have heard about and therefore, he has third degree burns and open wounds on the front and back and under his arm. It is EXTREMELY painful. He almost ended up back in the hospital today but eventually saw a wound specialist that helped a lot. Between these skin issues and recovering from the rigorous schedule of chemo and radiation treatments, he has no energy and is in no better shape than he was a month ago. But, who would have any motivation with the amount of pain medications he takes?! We apply a strong presciption of cream, he takes many powerful pain medications and many other meds to counteract the side effects of the pain medications. They say it may be another 4-6 weeks before the skin heals.
The tumor is definitely smaller and less painful. We will have more information on where the
cancer may have spread after we get the PET scan on his birthday, November 8 and the results by the week of the 13th. I will update the blog at that time. The doctors fully expect there will be cancer elsewhere and there will be more chemo but perhaps not until after the holidays so Mark can have a period to heal and gain some strength.
As always, thanks for your prayers, positive vibes and caring e-mails. Thanks especially to the staff at RHCI for the gorgeous flowers and also to Sandy and Chuck Robinson for the edible arrangement. We have never seen anything so clever and enjoyed it immensely!!
The tumor is definitely smaller and less painful. We will have more information on where the
cancer may have spread after we get the PET scan on his birthday, November 8 and the results by the week of the 13th. I will update the blog at that time. The doctors fully expect there will be cancer elsewhere and there will be more chemo but perhaps not until after the holidays so Mark can have a period to heal and gain some strength.
As always, thanks for your prayers, positive vibes and caring e-mails. Thanks especially to the staff at RHCI for the gorgeous flowers and also to Sandy and Chuck Robinson for the edible arrangement. We have never seen anything so clever and enjoyed it immensely!!
Friday, October 13, 2006
Hallelujah!!
Treatments are completed for now and they ended just in time as Mark was totally fed up with the whole regimen. It is extremely difficult to have chemo and radiation at the same time but that is what he has been doing since September 11 when he got out of the hospital in Boston. He had his final chemo treatment Tuesday, October 10. He had such a bad reaction to the treatment of October 3 that he ended up in the emergency room that Friday night for three hours. But, it was time well spent as he was so dehydrated and in so much pain and was in much better shape by the time we left. They arranged an extra office visit this week to run an IV and give him anti nausea mediations and morphine so we could avoid another trip to the ER after the final treatment Tuesday. So, he went this morning and is back in bed snoring now! It sure takes courage to go back for chemo week after week when the reactions each week get increasingly bad. He cut back dramatically on pain killers last week because they were causing so much difficulty with constipation and nausea and has done a little better without them. He is still bed ridden most of the time but we do occasionally get out for a walk and even saw the movie DEPARTED which was violent and bloody but so enthralling with fantastic actors that we actually forgot about the cancer for a few hours!!
Yesterday was Mark's final day of radiation. If you saw the area they radiated on his chest/underarm every day for a month, you would just cringe! It is absolutely burnt to a crisp and now beginning to weep and ooze. It will be a long while before his skin rebounds but we are hoping that it helped shrink the tumor. The doctors claim it definitely is smaller and his arm is more mobile but he does still often have severe pain in the area so we don't really know what to think.
Mark will have a PET & CT scan on his 58th birthday, November 8 and we will get the results on Friday, November 10. These test results should be very revealing and give us a better idea of what the future may bring. The radiation doctor says that Mark will not ever be able to have more radiation on this particular tumor again although he could have it on a tumor that may crop up elsewhere. The oncologist seems to think that after he sees the test results, he may like to go after any other cancer that still exists with chemo but there is a possibility that he will be able to put this off until after the holidays. Mark will consider further treatment if he gets a month or two to recuperate from this past regimen and if they can assure him that it will significantly increase his life span. Although it is stage four cancer, we have no prognosis whatsoever at this point so we look forward, with trepidation, to November 10. If Mark is not in too much pain in the next few months, we could even consider a brief visit to the condo we just purchased in Puerto Rico last April. However, for now, he is too weak, on too many medications and in too much pain to consider going very far from home at all. He still isn't feeling sociable and hasn't called or seen anyone for a few weeks. Perhaps after a week of recuperating from treatments, he will gain some strength and be more welcoming.
Meanwhile, I have a new respect for nurses. I have been so busy with my charts, medication schedules, driving to appointments, applying salves, getting scripts refilled and trying to make eating enticing that I haven't missed the uniform business I sold a month ago at all. I hear the nurses' unions complaining about having more than 8 patients at a time. I don't know how they handle more than one!!! Although there have been countless offers of help that we sincerely appreciate, we really don't need help at this point. Mark is content to have just me and the kids around and I'm so used to being busy that I'd probably fall into a slump if someone stole my job!
One of the most shocking aspects of this illness is the high price of drugs. I'm so grateful to be able to afford them and my heart goes out to those who are less fortunate at such a difficult time. For example, there is one anti-nausea medication on the market called "Zofran" and there is no generic for it. Mark takes 2-3 a day so a refill lasts a week or ten days. The co-pay for it is $100 and if our insurance didn't cover it, and they tell me most insurances don't cover it,
it would cost $1,035 to buy it. Furthermore, I don't know how anyone would survive the effects of chemo without it. This is just one of the many pain killers, appetitie stimulants and lotions
he uses regularly.
Well, as always, your e-mails are very much appreciated. They seemed to get ahead of me the past few weeks and I didn't respond as often as I would have liked but I do always print them out and show them to Mark. All of your kind and generous offers are sincerely appreciated and we are sorry to keep turning them down but the day may yet come when we need your help. Meanwhile, all your positive vibes, nice cards, and prayers make a difference in our outlook.
Yesterday was Mark's final day of radiation. If you saw the area they radiated on his chest/underarm every day for a month, you would just cringe! It is absolutely burnt to a crisp and now beginning to weep and ooze. It will be a long while before his skin rebounds but we are hoping that it helped shrink the tumor. The doctors claim it definitely is smaller and his arm is more mobile but he does still often have severe pain in the area so we don't really know what to think.
Mark will have a PET & CT scan on his 58th birthday, November 8 and we will get the results on Friday, November 10. These test results should be very revealing and give us a better idea of what the future may bring. The radiation doctor says that Mark will not ever be able to have more radiation on this particular tumor again although he could have it on a tumor that may crop up elsewhere. The oncologist seems to think that after he sees the test results, he may like to go after any other cancer that still exists with chemo but there is a possibility that he will be able to put this off until after the holidays. Mark will consider further treatment if he gets a month or two to recuperate from this past regimen and if they can assure him that it will significantly increase his life span. Although it is stage four cancer, we have no prognosis whatsoever at this point so we look forward, with trepidation, to November 10. If Mark is not in too much pain in the next few months, we could even consider a brief visit to the condo we just purchased in Puerto Rico last April. However, for now, he is too weak, on too many medications and in too much pain to consider going very far from home at all. He still isn't feeling sociable and hasn't called or seen anyone for a few weeks. Perhaps after a week of recuperating from treatments, he will gain some strength and be more welcoming.
Meanwhile, I have a new respect for nurses. I have been so busy with my charts, medication schedules, driving to appointments, applying salves, getting scripts refilled and trying to make eating enticing that I haven't missed the uniform business I sold a month ago at all. I hear the nurses' unions complaining about having more than 8 patients at a time. I don't know how they handle more than one!!! Although there have been countless offers of help that we sincerely appreciate, we really don't need help at this point. Mark is content to have just me and the kids around and I'm so used to being busy that I'd probably fall into a slump if someone stole my job!
One of the most shocking aspects of this illness is the high price of drugs. I'm so grateful to be able to afford them and my heart goes out to those who are less fortunate at such a difficult time. For example, there is one anti-nausea medication on the market called "Zofran" and there is no generic for it. Mark takes 2-3 a day so a refill lasts a week or ten days. The co-pay for it is $100 and if our insurance didn't cover it, and they tell me most insurances don't cover it,
it would cost $1,035 to buy it. Furthermore, I don't know how anyone would survive the effects of chemo without it. This is just one of the many pain killers, appetitie stimulants and lotions
he uses regularly.
Well, as always, your e-mails are very much appreciated. They seemed to get ahead of me the past few weeks and I didn't respond as often as I would have liked but I do always print them out and show them to Mark. All of your kind and generous offers are sincerely appreciated and we are sorry to keep turning them down but the day may yet come when we need your help. Meanwhile, all your positive vibes, nice cards, and prayers make a difference in our outlook.
Wednesday, October 04, 2006
Inquiring Minds Want To Know...
Not much has changed in the month since Mark got out of the hospital but inquiring minds want to know what is going on so I'll try to give you some idea of what's up. Our lives seem to have changed the day Mark went into the hospital on September 8 and have evolved into a series of doctors appointments, pills and treatments with a little fun thrown in now and then. Mark is on 8 medications, half are for pain and the other half are for the side effects of nausea and constipation caused by the pain medication!! I now have to keep a log of medications and food to keep it all straight. I get Mark up around 9:30 and give him pills to make him hungry and prevent nausea so that he can eat breakfast about an hour after that followed by pain medication on a full stomach. The dispensing of pills goes on a cycle like that until late at night. If Mark is having a good day, we try to go out for a walk at the canal or Craigville Beach so he can get a little exercise. Many days he is just not able to get out of bed at all other than for treatments. We go to radiation at 4 pm Monday thru Friday. On Tuesdays, Mark has chemo mid day for a few hours. For the past few weeks, he has felt fantastic on Tuesday and Wednesday and very sick in reaction to the chemo on Thursday and Friday but this week, he has not felt as good as in previous weeks after chemo. Sometimes he has cravings for something like a MacDonalds hamburger, grape juice or ice cream and other times, the very mention of food makes him sick. He is like a skinny pregnant woman constantly
swinging from cravings to nausea. Initially, he started losing weight and eating can be a battle but we really kept on top of it in the past week and his weight was actually up this week!
His spirits are pretty good but he rarely feels like talking on the phone or seeing anyone other than his sons. The staff at work hasn't even seen him in two weeks and they miss him!
He misses being able to just live an ordinary life, going to work, golfing, gardening or driving his car which he hasn't been able to do for more than a month. However, the treatments will be over in mid-October and he is optimistic that he may be able to resume some activities then.
He is still in constant pain with the tumor under his arm, therefore, he is heavily medicated particularly in the past week. The doctors say that the tumor has shrunk some. His skin is bright red on the front and back of his body where the tumor is and it's very itchy much of the time. This week's round of blood tests showed he was anemic so they added a new medication to his chemo. We have been able to go out to eat a few times but definitely not daily like we used to. I think the money we're saving on restaurants is going to co-pays for medications and doctor visits!
We have no idea what the future will bring. The doctors say that his tumor can continue to shrink for a few weeks after he finishes radiation so they will wait a while before they administer more scans and tests. Therefore, I doubt we will have any answers at all until sometime in November. The oncologist has indicated that he thinks he will start another round of chemo depending on the results of scans. I think we will also have to contend with a surgical removal of the tumor. But, for now, we are taking one day at a time and do as much as we can when Mark is able to. I've done over my dining room into a bright cheerful office/den and I spend a lot of time at the computer and I've returned to Curves. We still enjoy watching episodes of CURB YOUR ENTHUSIASM and we rented THANK YOU FOR SMOKING on the first day it came out in DVD because we had enjoyed it so much in the theatre. It is so irreverant and hilarious, rent it!
Gary had a "hole in one" on the fourth hole at New Seabury a few weeks ago! He has been the General Manager of CAPE MEDICAL SUPPLY for the past few years and we're announcing this week that we have appointed him as President & CEO of the business. He has many exciting plans and future goals for the business. Mike returned to L.A. at the end of last week. He is currently unemployed, living on his savings and is contemplating what he wants to do with the rest of his life. It's not an easy time for any of us to make plans. Kevin was struggling with his math class but has dropped it and is focusing on the history and business classes he enjoys along with staying in shape and training for the ski season. He is off to Sacramento this weekend to MEET THE PARENTS! He has met Katie's mother but not her father until now. This blog entry wasn't too exciting but I hope it has satisfied your curiousity. Maybe we can have a blog celebration when Mark finishes this round of treatments in mid-October! Meanwhile, thanks for all the e-mails, cards, prayers and humor you've sent our way. It brightens our days. We even got a beautiful basket of mums from the VNA this week. Mark had been on their advisory board for years and just "retired"! We appreciate all your positive thoughts and uplifting words.
swinging from cravings to nausea. Initially, he started losing weight and eating can be a battle but we really kept on top of it in the past week and his weight was actually up this week!
His spirits are pretty good but he rarely feels like talking on the phone or seeing anyone other than his sons. The staff at work hasn't even seen him in two weeks and they miss him!
He misses being able to just live an ordinary life, going to work, golfing, gardening or driving his car which he hasn't been able to do for more than a month. However, the treatments will be over in mid-October and he is optimistic that he may be able to resume some activities then.
He is still in constant pain with the tumor under his arm, therefore, he is heavily medicated particularly in the past week. The doctors say that the tumor has shrunk some. His skin is bright red on the front and back of his body where the tumor is and it's very itchy much of the time. This week's round of blood tests showed he was anemic so they added a new medication to his chemo. We have been able to go out to eat a few times but definitely not daily like we used to. I think the money we're saving on restaurants is going to co-pays for medications and doctor visits!
We have no idea what the future will bring. The doctors say that his tumor can continue to shrink for a few weeks after he finishes radiation so they will wait a while before they administer more scans and tests. Therefore, I doubt we will have any answers at all until sometime in November. The oncologist has indicated that he thinks he will start another round of chemo depending on the results of scans. I think we will also have to contend with a surgical removal of the tumor. But, for now, we are taking one day at a time and do as much as we can when Mark is able to. I've done over my dining room into a bright cheerful office/den and I spend a lot of time at the computer and I've returned to Curves. We still enjoy watching episodes of CURB YOUR ENTHUSIASM and we rented THANK YOU FOR SMOKING on the first day it came out in DVD because we had enjoyed it so much in the theatre. It is so irreverant and hilarious, rent it!
Gary had a "hole in one" on the fourth hole at New Seabury a few weeks ago! He has been the General Manager of CAPE MEDICAL SUPPLY for the past few years and we're announcing this week that we have appointed him as President & CEO of the business. He has many exciting plans and future goals for the business. Mike returned to L.A. at the end of last week. He is currently unemployed, living on his savings and is contemplating what he wants to do with the rest of his life. It's not an easy time for any of us to make plans. Kevin was struggling with his math class but has dropped it and is focusing on the history and business classes he enjoys along with staying in shape and training for the ski season. He is off to Sacramento this weekend to MEET THE PARENTS! He has met Katie's mother but not her father until now. This blog entry wasn't too exciting but I hope it has satisfied your curiousity. Maybe we can have a blog celebration when Mark finishes this round of treatments in mid-October! Meanwhile, thanks for all the e-mails, cards, prayers and humor you've sent our way. It brightens our days. We even got a beautiful basket of mums from the VNA this week. Mark had been on their advisory board for years and just "retired"! We appreciate all your positive thoughts and uplifting words.
