Hello Family and Friends:
I am a day late in getting this week's update out as we were busy yesterday at a family reunion for Annette's family and I still wasn't feeling very well following the final chemo treatment on Thursday. However, I woke up this morning feeling much better and I even had some appetite for the first time in 3 days. Thank God for little things.
Yep, we're done with this phase of our treatments! Six weeks of radiation treatments (28 in total), and 6 chemo infusions of one drug, two of another, and 28 days of oral chemo pills (10/day) and we're done. Thank God. In reflection, I can say that I had 3 pretty good weeks (1, 2, & 6) and 3 that were a struggle (3-5). While it is physically challenging, I can say the mental challenge was more than I expected it to be. The mind can be a very powerful thing, (even mine,) more so than I can recall at other time in my life.
The simple act of saying "chemo" over the past several weeks often brought about involuntarily gagging. Also, for a couple of weeks there, I couldn't even hear the word chocolate without getting queasy. This was due to the first time I got so sick from the chemo I upchucked my lunch which included a chocolate dessert and got to see it again. Little things like that play with your mind which in turn controls physical feelings. Smell associations are also something I am now dealing with. I have no desire for coffee anymore as I associate the smell of coffee with the RT waiting room where they had coffee and cookies for the patients. Weird. Maybe I need a hypnotist to get me back to my old self. Oh well, there are worse things for sure.
Overall Week 6 was good until Thursday's chemo infusion. All I had was RT the first 3 days and that was no problem. Got the infusion and I was fine for about 8 hours until I got sick and I haven't felt well since then, until the middle of the night last night. Then it broke much like you might expect with a fever when it breaks. As I said, weird but true.
We are home now and in the rest and rehab role. We have nothing further until 4/22-23 when we return to Duke for two full days of follow up testing, bascially doing everything they did originally (pet scan, endoscopy, etc.) to see how effective all the treatments were. A decision will be made at that time as to when my surgery will be but they anticipate approximately 2-4 weeks following that, or around mid-late May. I need to put some weight back on as I have lost about 20 pounds recently. This is not the type of diet one wants to go on. My muscle tone is gone.
I probably won't update my blog much here for a while unless things change. The doctors told me I should start feeling somewhat normal again in about 10 days. To that I say hoorah as I'm sure Annette does too. She has been an amazing trooper throughout this entire process supporting me in every way and bugging me to take medication or food or whatever when I didn't want to. She has had to lather me up with skin creams lately, mainly on my back, as I have very dry skin now from the RT. I'm sure I couldn't have gotten through it without her. Even Guinney, our dog, was right by my side much of the time I was sleeping as she knew I wasn't well. Every time I would upchuck she would start barking at me like she was giving me encouragement.
Well I guess that it is for now. I can't thank all of you enough for all of your well wishes, your thoughtful cards, and, most of all, your continued prayers. They were all more welcomed than you can ever imagine. Also, please continue!! We need and appreciate every single one. I also love to hear comments back from you either via the blog or via e-mails. It reminds me just how blessed I am.
Love
Drew
Sunday, March 29, 2009
Saturday, March 21, 2009
Week 5 Update - Winding Down
Hello Family and Friends - Week 5 was better than the last two weeks and my/our spirits are also starting to pick up as I/we see the end of the tunnel just around one more bend in the tracks. While I didn't necessarily start off the week feeling that well (nausea and still no appetite), on Monday after my lab work and RT, we met with our medical oncologist, Dr. Hope Uronis (great name for a doctor huh - Hope). She decided it was time for me to experience a part of the 60's that I failed to take advantage of the first time around - she put me on pot!
Yep, I am now officially on medical marijuana. Unfortunately, it is in a small pill form and not a dobbie I could smoke. Oh well, better late than never I guess. Like my friend Jeff said - the steroids I was on will wipe out my sporting records, now I won't even be able to get a job with any place that does drug testing - guess I will have to stay retired. The pot is to help both my appetite (getting the munchies) and the nagging nausea. The first time I took it I took a nap in the afternoon and woke up with a craving for shrimp. We went to Red Lobster and I had both a shrimp cocktail and shrimp dinner.
On Tuesday, while enroute to the hospital, Dr. Uronis called me to say they had decided to delay my normal chemo infusion scheduled for that day until Thursday to let me get feeling a little better. I liked the decision and made the most of Tuesday and Wednesday to rest and also meet up in the evenings with Annette's sons families. We had dinner with Kelly's family one night in Burlington and then Wednesday night we met with David's family in Greensboro. We had a nice visit with them and the grandsons. They are all so special to us.
RT went OK all week but on Thursday when I did get chemo, later that evening I got nauseous again and lost my cookies once in the evening and once the next morning. We went in on Friday early for the RT so we can come home early but they checked the vitals and my BP was down again so they required me to have a bag of IV saline solution and one of an anti-nausea drug before turning us loose to go. It took about an extra 3.5 hours. Oh well, you do what you must and actually now I feel about as good as I have in a month, so obviously it helped me.
We will lay low again this weekend with just a short birthday party to attend for Annette's sister where we will see some of the family today. They have been so supportive throughout this whole ordeal. Tomorrow we may plant some flowers in the deck boxes but that is about it for plans. Rest and relax, watch some of the NCAA tournament and get ready for our FINAL week. Sounds good doesn't it? It does to us.
Take care and your thoughts and prayers are always welcomed.
Drew & Annette
Hello Family and Friends - Week 5 was better than the last two weeks and my/our spirits are also starting to pick up as I/we see the end of the tunnel just around one more bend in the tracks. While I didn't necessarily start off the week feeling that well (nausea and still no appetite), on Monday after my lab work and RT, we met with our medical oncologist, Dr. Hope Uronis (great name for a doctor huh - Hope). She decided it was time for me to experience a part of the 60's that I failed to take advantage of the first time around - she put me on pot!
Yep, I am now officially on medical marijuana. Unfortunately, it is in a small pill form and not a dobbie I could smoke. Oh well, better late than never I guess. Like my friend Jeff said - the steroids I was on will wipe out my sporting records, now I won't even be able to get a job with any place that does drug testing - guess I will have to stay retired. The pot is to help both my appetite (getting the munchies) and the nagging nausea. The first time I took it I took a nap in the afternoon and woke up with a craving for shrimp. We went to Red Lobster and I had both a shrimp cocktail and shrimp dinner.
On Tuesday, while enroute to the hospital, Dr. Uronis called me to say they had decided to delay my normal chemo infusion scheduled for that day until Thursday to let me get feeling a little better. I liked the decision and made the most of Tuesday and Wednesday to rest and also meet up in the evenings with Annette's sons families. We had dinner with Kelly's family one night in Burlington and then Wednesday night we met with David's family in Greensboro. We had a nice visit with them and the grandsons. They are all so special to us.
RT went OK all week but on Thursday when I did get chemo, later that evening I got nauseous again and lost my cookies once in the evening and once the next morning. We went in on Friday early for the RT so we can come home early but they checked the vitals and my BP was down again so they required me to have a bag of IV saline solution and one of an anti-nausea drug before turning us loose to go. It took about an extra 3.5 hours. Oh well, you do what you must and actually now I feel about as good as I have in a month, so obviously it helped me.
We will lay low again this weekend with just a short birthday party to attend for Annette's sister where we will see some of the family today. They have been so supportive throughout this whole ordeal. Tomorrow we may plant some flowers in the deck boxes but that is about it for plans. Rest and relax, watch some of the NCAA tournament and get ready for our FINAL week. Sounds good doesn't it? It does to us.
Take care and your thoughts and prayers are always welcomed.
Drew & Annette
Saturday, March 14, 2009
Week 4 update - Sometimes the windshield, sometimes the bug
Well, Week 4 was better than Week 3, but unfortunately, not a lot better. While I didn't have any hospital stays or strong allergic reactions to the chemo like last week, I still had a somewhat shaky week.
I was telling Annette that I felt at my worst starting point (health wise/feeling) for any week so far. Monday started off fine with just RT and we had a great evening wherein we got a chance to visit with Annette's youngest son, Kelly, have dinner with him and then we were invited to listen to him sing at a rehersal with a big band that he sings with. They are great and he has an amazing voice.
On Tuesday I had RT and regular infusion of chemo (without the research drug.) At the very end of the session I got a little nauseated and upchucked . We went back to the hotel and I went straight to bed where I upchucked all night and couldn't keep down water.
I went in early in the am as I knew I was dehydrated and sure enough my BP was way down (68/48) and they had to give me two bottles of IV saline solution. Had RT and returned to the hotel. Thursday they thought I would need to do the same so I went in early, but my BP had recovered and fortunately I didn't need any IV. Had RT on Thursday and Friday and we returned home early to Fayetteville.
They have given me several more drugs, anti-nausea pills (3x), steroids (2x) to help the appetite (which I have none, nadda, zilch), the worlds most expensive mouthwash for a very sensitive mouth ($595), and one more liquid to help with the swallowing. This has me up to about 30 pills a day now along with the washes, skin creams, and various other stuff. You have to be really diligent to remember to take everything you are supposed to when you are supposed to.
And while I don't want to sound totally in the dumps, I do think that the cumulative affect after 4 weeks of treatment is taking a toll on me both physically and mentally. I am doing my best to maintain a positive attitude and keep my eye on the golden ring, but the mind can work on you and get you down if you let it. I am doing my best not to let that happen but the uphill battle is getting a little steeper each week.
My biggest challenge right now, on an hourly/daily basis, is the lack of appetite. I don't want anything. I haven't had a cup of coffee in a week. I have to force down anything I take in. Nothing tastes good, nothing appeals to me and in fact all food just about makes me nauseous to think about. But I'm trying , and Annette is pushing me as she should.
I sometimes think how fortunate I am to be young, strong, and in otherwise good health (and, oh yeah, good looking) to fight this battle. I can hardly imagine how difficult it is for the elderly or very young children. It makes me want to cry just to think about how difficult it must be for them. Also, I am so fortunate to have the love and support of a good woman who has been right there every step of the way to wipe my brow when I puke, get me anything I need, push me to eat when I don't want to, and generally be my Nurse Nightingale. I'm lousy company now, too, but she puts up with me without bopping me on top of my head like she probably should.
I am laying low this weekend just trying to rest. Our weather is crummy so that makes it easier. I'm watching basketball tournaments and golf so I'm not bored. I am glad there are only two more weeks of treatments. Between the cold sensitivity issues, mouth sores, nausea, fatigue, and generally crummy feeling this thing is starting to not be much fun. I'll get through it with your continued support and prayers and we will look back at it and say "that wasn't so bad and thank God it all turned out well."
Till next week I'll hang in there and you do the same. Dont' forget those prayers, I know I can use all I can get.
I was telling Annette that I felt at my worst starting point (health wise/feeling) for any week so far. Monday started off fine with just RT and we had a great evening wherein we got a chance to visit with Annette's youngest son, Kelly, have dinner with him and then we were invited to listen to him sing at a rehersal with a big band that he sings with. They are great and he has an amazing voice.
On Tuesday I had RT and regular infusion of chemo (without the research drug.) At the very end of the session I got a little nauseated and upchucked . We went back to the hotel and I went straight to bed where I upchucked all night and couldn't keep down water.
I went in early in the am as I knew I was dehydrated and sure enough my BP was way down (68/48) and they had to give me two bottles of IV saline solution. Had RT and returned to the hotel. Thursday they thought I would need to do the same so I went in early, but my BP had recovered and fortunately I didn't need any IV. Had RT on Thursday and Friday and we returned home early to Fayetteville.
They have given me several more drugs, anti-nausea pills (3x), steroids (2x) to help the appetite (which I have none, nadda, zilch), the worlds most expensive mouthwash for a very sensitive mouth ($595), and one more liquid to help with the swallowing. This has me up to about 30 pills a day now along with the washes, skin creams, and various other stuff. You have to be really diligent to remember to take everything you are supposed to when you are supposed to.
And while I don't want to sound totally in the dumps, I do think that the cumulative affect after 4 weeks of treatment is taking a toll on me both physically and mentally. I am doing my best to maintain a positive attitude and keep my eye on the golden ring, but the mind can work on you and get you down if you let it. I am doing my best not to let that happen but the uphill battle is getting a little steeper each week.
My biggest challenge right now, on an hourly/daily basis, is the lack of appetite. I don't want anything. I haven't had a cup of coffee in a week. I have to force down anything I take in. Nothing tastes good, nothing appeals to me and in fact all food just about makes me nauseous to think about. But I'm trying , and Annette is pushing me as she should.
I sometimes think how fortunate I am to be young, strong, and in otherwise good health (and, oh yeah, good looking) to fight this battle. I can hardly imagine how difficult it is for the elderly or very young children. It makes me want to cry just to think about how difficult it must be for them. Also, I am so fortunate to have the love and support of a good woman who has been right there every step of the way to wipe my brow when I puke, get me anything I need, push me to eat when I don't want to, and generally be my Nurse Nightingale. I'm lousy company now, too, but she puts up with me without bopping me on top of my head like she probably should.
I am laying low this weekend just trying to rest. Our weather is crummy so that makes it easier. I'm watching basketball tournaments and golf so I'm not bored. I am glad there are only two more weeks of treatments. Between the cold sensitivity issues, mouth sores, nausea, fatigue, and generally crummy feeling this thing is starting to not be much fun. I'll get through it with your continued support and prayers and we will look back at it and say "that wasn't so bad and thank God it all turned out well."
Till next week I'll hang in there and you do the same. Dont' forget those prayers, I know I can use all I can get.
Saturday, March 7, 2009
Week 3 Update - Easy Street No Mo
Me and my big mouth. On Tuesday, which is my long day, between my RT and chemo infusions I met with one of my doctors about noon and he asked me how I was doing. I said "great - if this is bad as it gets I feel very fortunate." He responded by saying "beware, it can change quickly." Wow, it turns out he was a prophet! Because six hours later I hit a brick wall on our stoll down Treatment Alley and Easy Street.
At 6 pm, or about 1.5 hours after I finished my infusion of two chemo drugs in the afternoon, while we were at the motel, I started to get cold. First I put on a sweater, than turned up the heat, and then jumped under all the covers in bed with my clothes on. Nothing helped. I developed a serious case of rigors, (violent chills) and couldn't stop shaking. It went on for over an hour and then I started to vomit violently too. Then Annette noticed I had a fire engine red rash over my back and chest. Oh fun. Annette promptly, and fortunately, called my chemo oncologist and she had me admitted to the hospital promptly. I was running a fever of 102, my blood pressure was up, I vomitted twice more, the rash spread over my entire body head to toe, and I was generally feeling like hell.
Well, it turns out I had an allergic reaction to one of the drugs, my research one, the panitumumab. They hooked me up to IVs of a variety of stuff over the next two days, mostly IV benadryl that night, and then potassium and magnesium due to an electrolite embalance, drew tons of blood for lab and culture testing, and poked and prodded me until it wasn't fun any more. Doctors were coming out of the woodwork to see my amazing rash as it was so impressive (red & white blotches that looked like sun poisioning all over). My blood pressure got dangerously low (70/30) at one point but after two days I was finally discharged. I am better but pretty well worn out. I learned two valuable lessons, be thankful to God for the good days because there may be some bad ones coming, and, oh yeah, keep my big mouth shut!
I resumed RT on Thursday and Friday and we came home early Friday for the weekend. The doctors will have to put their heads together to decide if I continue in the research study or not. I only have one more application but they would need to do something to prevent a reoccurrance. I'm not going through that again. We are in a wait and see period right now as I'm not scheduled for that drug again for about 10 more days.
The weather is beautiful, 75-80 this weekend and my brother and his wife are coming up from Myrtle Beach to visit. We plan to get some sun and if I feel up to it maybe play 9 holes - we shall see. Feeling better but still kind of weak. My appetite is also off. Well, guess that is it for now. Please continue to send your prayers my way. After a week like this one they become ever more welcomed and needed.
God Bless you all and Thank God for Annette's support throughout.
Drew
At 6 pm, or about 1.5 hours after I finished my infusion of two chemo drugs in the afternoon, while we were at the motel, I started to get cold. First I put on a sweater, than turned up the heat, and then jumped under all the covers in bed with my clothes on. Nothing helped. I developed a serious case of rigors, (violent chills) and couldn't stop shaking. It went on for over an hour and then I started to vomit violently too. Then Annette noticed I had a fire engine red rash over my back and chest. Oh fun. Annette promptly, and fortunately, called my chemo oncologist and she had me admitted to the hospital promptly. I was running a fever of 102, my blood pressure was up, I vomitted twice more, the rash spread over my entire body head to toe, and I was generally feeling like hell.
Well, it turns out I had an allergic reaction to one of the drugs, my research one, the panitumumab. They hooked me up to IVs of a variety of stuff over the next two days, mostly IV benadryl that night, and then potassium and magnesium due to an electrolite embalance, drew tons of blood for lab and culture testing, and poked and prodded me until it wasn't fun any more. Doctors were coming out of the woodwork to see my amazing rash as it was so impressive (red & white blotches that looked like sun poisioning all over). My blood pressure got dangerously low (70/30) at one point but after two days I was finally discharged. I am better but pretty well worn out. I learned two valuable lessons, be thankful to God for the good days because there may be some bad ones coming, and, oh yeah, keep my big mouth shut!
I resumed RT on Thursday and Friday and we came home early Friday for the weekend. The doctors will have to put their heads together to decide if I continue in the research study or not. I only have one more application but they would need to do something to prevent a reoccurrance. I'm not going through that again. We are in a wait and see period right now as I'm not scheduled for that drug again for about 10 more days.
The weather is beautiful, 75-80 this weekend and my brother and his wife are coming up from Myrtle Beach to visit. We plan to get some sun and if I feel up to it maybe play 9 holes - we shall see. Feeling better but still kind of weak. My appetite is also off. Well, guess that is it for now. Please continue to send your prayers my way. After a week like this one they become ever more welcomed and needed.
God Bless you all and Thank God for Annette's support throughout.
Drew
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