Dave (and I) spent the weekend in the hospital getting IV antibiotics, playing Words with Friends, and watching movies. We didn't learn much other than that his white count hasn't really increased significantly. Also, his CT scan was clean, so there was no hidden infection.
His oncologist just visited to confirm that his bone marrow is normal - there is no indication of lymphoma or leukemia or any of the weirder forms of anemia. He firmly believes his body had an autoimmune reaction to a virus - and he's says we'll never know what caused it because all of the tests have been normal. He called it "isolated neutropenia" and says that it's just a random incident and we shouldn't expect this to be the new normal.
He also said if it is related to the lymphoma or the chemotherapy, "it's not known to be." I'm taking that to mean it's possible but he doesn't want to say that for certain. That's only my opinion, of course, since it's hard for me to separate what chemo does to the immune system from what happened in this situation. He also said he usually sees one or two cases like this a year, and he's an oncologist, so...
At any rate, now that they've ruled out The Big Scaries, he can start Neupogen shots. Neupogen is similar to the booster he got after each chemo treatment, and it will stimulate the bone marrow to make white cells. He'll have to get two a day until he reaches the normal level, and he'll still be getting IV antibiotics. Once his absolute neutrophil count (ANC) is 500, he can be released with oral antibiotics. Today, that count is 36.
He should be just fine once he recovers his immune system, so this is all good news. For now, our specific prayer request is for a rapid increase in his neutrophil count so he can go home.
As always, thank you for the prayers thus far. We feel them and we are so grateful.
Showing posts with label lymphoma. Show all posts
Showing posts with label lymphoma. Show all posts
Monday, November 12, 2012
Thursday, August 30, 2012
Dave's Chemo Journal: July 23, 2012
As it turns out, chemo isn't the hardest thing we had to do this year.
July 23, 2012
Chemo number six today. The last one. Hooray. It is a day of great celebration, but I know that I still have to watch the stuff drip into my body one more time as I feel my body slowly decline from a state of wellness to sick, tired and nauseated. Chemo day is not easy. The couple of days after aren’t either. I have associational nausea now. Strange things make me sick. Last week it was the smell of my leather computer case which I bring to the hospital with me on treatment day. The smell of the bathroom soap here at the hospital turns my stomach. The sight of the cup which I have been drinking out of during each chemo session makes me need to vomit. In fact, I just told Amanda to throw it away.
As bad as chemo is, I can now say it is not the worst thing that happened this year. Two weeks ago today, on July 9th, Nana had a heart attack and was rushed to the hospital for surgery. She had a stint put in that night and we talked to her and the doctor afterward. The doctor said everything went fine and Nana was a bit out of it, but that is to be expected coming out of surgery. She stayed in ICU Monday night, Tuesday and Tuesday night. We visited at 1:00 on Wednesday afternoon and everything seemed to be fine. We talked with Nana a bit and she seemed tired, but still “with it”. I went to play golf. The skies were dark and rain was on the way. I was the only one on the course, but I forged through, trying to finish before the bottom fell out. On the tenth hole, my sister in law called to check on Nana and I was telling her how Nana seemed tired, but appeared to be recovering well. I relayed how I thought she would stay another 24 or 48 hours in ICU and then be transferred to a regular room.
While talking to her, I noticed a missed call from my brother and Amanda sent me a text telling me to call her immediately. I didn’t have to. Apparently, the doctor had been looking for us at the hospital to talk to us about Nana. He called my brother just after we left and told him that her heart had suffered too much damage from the attack and probably could not function without the IV medicine which increased her blood pressure.
I left the golf course, raced home for a shower and headed back up the interstate toward the hospital. We visited at 5:00 and then began calling the family in to say goodbye. At the 8:00 p.m. visit, all of the grandkids, most of the great grandkids and some of the great, great grandkids visited Nana in her ICU bed and one by one, said goodbye. My brothers stayed the night in the hospital in the ICU waiting room and at around 1:00 in the morning, there was a code blue. It was Nana, but since she did not have a living will on file, the doctors and nurses resuscitated her.
I got word of the code blue at 6:00 the next morning and went to the hospital at 9:00, knowing this would absolutely be the last time I saw her on earth. My brother had talked to the surgeon and Nana’s primary care doctor, both of whom recommended we stop the IV medicine and let nature take its course. We visited Nana at 9:00 and she was in and out of lucidity. She knew who we were, but about half of what she said was just crazy. She did tell us about reading the Bible and about how there were many good verses. She could not pick a favorite. I asked her to tell me the story about her throwing popcorn at Granddaddy at the medicine show before they started courting sometime in 1938. She said, “OH! What you know about the medicine show?”
“Just tell me the story Nana.” And she did. All about how they used to come around to the country and set up a tent and do acts and tricks to try to sell medicine. She and her friend or cousin were sitting behind Granddaddy and Nana threw popcorn at him to get his attention. I think she had met him before, but this event was kind of the beginning of their relationship.
She told me about walking around the house with Granddaddy before they got married too. During their courtship, Nana and Granddaddy used to go to parties, presumably with other young couples, and they would play games. One of the games involved a boy and girl walking around the house together. I never have known what else was involved, but Nana told me that story about her and Granddaddy walking around the house one more time there on that ICU bed at Princeton Hospital on the west side of Birmingham, Alabama.
Those stories are essentially the beginning of my family history and I needed to hear them one more time from the person who lived them so I could say goodbye and consent to closure of the earthly struggle of this 90 year old child of the depression who has been the one constant during my constantly changing 33 years.
I kissed her on the cheek, brushed her hair back behind her ear, told her I loved hear and said goodbye. My brother and I told the nurse that we wanted to stop the medicines that raised her blood pressure to functional level and I left the hospital at about 9:30.
I got a message to call Amanda just after 11:30, but I didn’t have to. She was gone from us. Gone to Heaven to be with her Lord and Savior, her beloved husband and only child. How sweet it must have been for her. I know that she had been accepting, if not looking forward to death for many years. But it was still hard on those of us left behind. Much harder than chemo. Bring it on today, doctors and nurses. No matter what happens today, it will, at worst, be the second hardest thing I have done this year.
July 23, 2012
Chemo number six today. The last one. Hooray. It is a day of great celebration, but I know that I still have to watch the stuff drip into my body one more time as I feel my body slowly decline from a state of wellness to sick, tired and nauseated. Chemo day is not easy. The couple of days after aren’t either. I have associational nausea now. Strange things make me sick. Last week it was the smell of my leather computer case which I bring to the hospital with me on treatment day. The smell of the bathroom soap here at the hospital turns my stomach. The sight of the cup which I have been drinking out of during each chemo session makes me need to vomit. In fact, I just told Amanda to throw it away.
As bad as chemo is, I can now say it is not the worst thing that happened this year. Two weeks ago today, on July 9th, Nana had a heart attack and was rushed to the hospital for surgery. She had a stint put in that night and we talked to her and the doctor afterward. The doctor said everything went fine and Nana was a bit out of it, but that is to be expected coming out of surgery. She stayed in ICU Monday night, Tuesday and Tuesday night. We visited at 1:00 on Wednesday afternoon and everything seemed to be fine. We talked with Nana a bit and she seemed tired, but still “with it”. I went to play golf. The skies were dark and rain was on the way. I was the only one on the course, but I forged through, trying to finish before the bottom fell out. On the tenth hole, my sister in law called to check on Nana and I was telling her how Nana seemed tired, but appeared to be recovering well. I relayed how I thought she would stay another 24 or 48 hours in ICU and then be transferred to a regular room.
While talking to her, I noticed a missed call from my brother and Amanda sent me a text telling me to call her immediately. I didn’t have to. Apparently, the doctor had been looking for us at the hospital to talk to us about Nana. He called my brother just after we left and told him that her heart had suffered too much damage from the attack and probably could not function without the IV medicine which increased her blood pressure.
I left the golf course, raced home for a shower and headed back up the interstate toward the hospital. We visited at 5:00 and then began calling the family in to say goodbye. At the 8:00 p.m. visit, all of the grandkids, most of the great grandkids and some of the great, great grandkids visited Nana in her ICU bed and one by one, said goodbye. My brothers stayed the night in the hospital in the ICU waiting room and at around 1:00 in the morning, there was a code blue. It was Nana, but since she did not have a living will on file, the doctors and nurses resuscitated her.
I got word of the code blue at 6:00 the next morning and went to the hospital at 9:00, knowing this would absolutely be the last time I saw her on earth. My brother had talked to the surgeon and Nana’s primary care doctor, both of whom recommended we stop the IV medicine and let nature take its course. We visited Nana at 9:00 and she was in and out of lucidity. She knew who we were, but about half of what she said was just crazy. She did tell us about reading the Bible and about how there were many good verses. She could not pick a favorite. I asked her to tell me the story about her throwing popcorn at Granddaddy at the medicine show before they started courting sometime in 1938. She said, “OH! What you know about the medicine show?”
“Just tell me the story Nana.” And she did. All about how they used to come around to the country and set up a tent and do acts and tricks to try to sell medicine. She and her friend or cousin were sitting behind Granddaddy and Nana threw popcorn at him to get his attention. I think she had met him before, but this event was kind of the beginning of their relationship.
She told me about walking around the house with Granddaddy before they got married too. During their courtship, Nana and Granddaddy used to go to parties, presumably with other young couples, and they would play games. One of the games involved a boy and girl walking around the house together. I never have known what else was involved, but Nana told me that story about her and Granddaddy walking around the house one more time there on that ICU bed at Princeton Hospital on the west side of Birmingham, Alabama.
Those stories are essentially the beginning of my family history and I needed to hear them one more time from the person who lived them so I could say goodbye and consent to closure of the earthly struggle of this 90 year old child of the depression who has been the one constant during my constantly changing 33 years.
I kissed her on the cheek, brushed her hair back behind her ear, told her I loved hear and said goodbye. My brother and I told the nurse that we wanted to stop the medicines that raised her blood pressure to functional level and I left the hospital at about 9:30.
I got a message to call Amanda just after 11:30, but I didn’t have to. She was gone from us. Gone to Heaven to be with her Lord and Savior, her beloved husband and only child. How sweet it must have been for her. I know that she had been accepting, if not looking forward to death for many years. But it was still hard on those of us left behind. Much harder than chemo. Bring it on today, doctors and nurses. No matter what happens today, it will, at worst, be the second hardest thing I have done this year.
Wednesday, August 29, 2012
Dave's Chemo Journal: July 2, 2012
Here he introduces the concept of anticipatory nausea - something that is very common but that I read nothing about when researching chemo treatment. Also, some of the changes that cancer brought to his life.
July 2, 2012
Here we are for session five. It has been three months since I started taking chemotherapy, so today is kind of like an anniversary. I have had a great four weeks since my last treatment. We had father’s day, Ella’s birthday, a couple of other kid birthday parties and an early 4th of July batch of ribs on Saturday. I know I will probably be down on the 4th so I cooked early to make sure I got to enjoy some bar-b-que before treatment. There has been lots of golf since the last treatment. In fact, I played the day after I was last here. It was pretty rough, but I enjoyed it and it fit in with my philosophy that I will do whatever I am able during the process.
I did not come to the hospital with the dread that accompanied me on treatment 4, but I do have some “anticipatory nausea”. That is the term used by the nurses for the sickness in my stomach. It started last night and has continued on to today. I had a big breakfast of biscuits and gravy along with three bottles of water in hopes that my stomach will be sufficiently coated before they drip the poison in me and that I will have a head start on peeing the stuff out.
The doctor just came by for my consult. He tells me that my blood cell counts look good and we are ready to begin the treatment. I asked about the process after 6 chemo treatments and he said after I finish I will have a scan in several weeks. The expectation is that this scan will be normal. Then I will be scanned every six months or so for a period of 2 years. Again, the expectation is that all of these scans will be normal.
The doctor told me that he could probably scan me now and everything in my body would be normal, but indicated that 4 rounds of chemo is not known to be curative. Six rounds is apparently the magic number. I asked him if there was any possibility that I would have to go more than six rounds and he told me, “No, we don’t fudge on that number.” That means that by the end of the month I will done with chemo. Praise God.
The hair on my head and face already seems to be growing more quickly. I am shaving my head at least twice a week now and my facial hair is prickly even though I shaved just yesterday morning for church. The hair growth has surprised me enough to make me wonder if the last treatment was a bit watered down and not as potent as the first three. I am sure that is not the case, but I can definitely see the light at the end of the tunnel and I am excited to move on to the next phase of life. With the exception of the few days after chemo, I feel much better now than I have in several years. My stomach doesn’t feel full and bloated, I have more energy and can stay awake later. I spend more time with Amanda and the children and the relationships I have with them are richer and more satisfying than before. I don’t spend so much time at work, but the time I do work is more focused and productive. I no longer sit around for extended periods thinking about work being slow or business being down. I perform the work I have to do and leave. I am learning how to work to live rather than work to try to become rich. I have learned that there is much richness to be enjoyed that costs little or no money.
Like golf. At Montevallo. What started last Memorial Day weekend as something to alleviate my boredom while Amanda and the children slept has turned into a full-fledged passion. I played golf five days during the past calendar week. I am not good but I have improved. I have been trying to break a score of 100 for the past year, to no avail. When I started playing I didn’t keep a stroke score, but rather counted the number of balls I lost during a round – and it was consistently a double digit number. Yesterday I used the same ball from the 8th to the 18th hole before knocking it into the woods. [He has since broken 100 and played an entire 18 holes with a single ball. He brought it home and told me to keep it. It's sitting on my desk as I type. He was very proud.] Golf has truly become a passion. And while I could aspire to play golf at some of the bigger and nicer courses and country clubs, I am completely satisfied at Montevallo.
There is an old couple who drives around the golf course on their cart every day. Sometimes they have the dogs with them. Sometimes the lady gets out and walks while the man drives around. They drive around the course, staying out of the way of the “regular patrons” and play the open holes. I have seen them all times of day from early in the morning to just before dusk. They sure seem to be happy. And while I do not wish that I was retirement age, I certainly believe I could be content and happy driving around the Montevallo 18 after I retire instead of playing at some high class country club.
So much for that. They have started the meds and I am ready for the ride. Good riddance cancer. [Amen.]
July 2, 2012
Here we are for session five. It has been three months since I started taking chemotherapy, so today is kind of like an anniversary. I have had a great four weeks since my last treatment. We had father’s day, Ella’s birthday, a couple of other kid birthday parties and an early 4th of July batch of ribs on Saturday. I know I will probably be down on the 4th so I cooked early to make sure I got to enjoy some bar-b-que before treatment. There has been lots of golf since the last treatment. In fact, I played the day after I was last here. It was pretty rough, but I enjoyed it and it fit in with my philosophy that I will do whatever I am able during the process.
I did not come to the hospital with the dread that accompanied me on treatment 4, but I do have some “anticipatory nausea”. That is the term used by the nurses for the sickness in my stomach. It started last night and has continued on to today. I had a big breakfast of biscuits and gravy along with three bottles of water in hopes that my stomach will be sufficiently coated before they drip the poison in me and that I will have a head start on peeing the stuff out.
The doctor just came by for my consult. He tells me that my blood cell counts look good and we are ready to begin the treatment. I asked about the process after 6 chemo treatments and he said after I finish I will have a scan in several weeks. The expectation is that this scan will be normal. Then I will be scanned every six months or so for a period of 2 years. Again, the expectation is that all of these scans will be normal.
The doctor told me that he could probably scan me now and everything in my body would be normal, but indicated that 4 rounds of chemo is not known to be curative. Six rounds is apparently the magic number. I asked him if there was any possibility that I would have to go more than six rounds and he told me, “No, we don’t fudge on that number.” That means that by the end of the month I will done with chemo. Praise God.
The hair on my head and face already seems to be growing more quickly. I am shaving my head at least twice a week now and my facial hair is prickly even though I shaved just yesterday morning for church. The hair growth has surprised me enough to make me wonder if the last treatment was a bit watered down and not as potent as the first three. I am sure that is not the case, but I can definitely see the light at the end of the tunnel and I am excited to move on to the next phase of life. With the exception of the few days after chemo, I feel much better now than I have in several years. My stomach doesn’t feel full and bloated, I have more energy and can stay awake later. I spend more time with Amanda and the children and the relationships I have with them are richer and more satisfying than before. I don’t spend so much time at work, but the time I do work is more focused and productive. I no longer sit around for extended periods thinking about work being slow or business being down. I perform the work I have to do and leave. I am learning how to work to live rather than work to try to become rich. I have learned that there is much richness to be enjoyed that costs little or no money.
Like golf. At Montevallo. What started last Memorial Day weekend as something to alleviate my boredom while Amanda and the children slept has turned into a full-fledged passion. I played golf five days during the past calendar week. I am not good but I have improved. I have been trying to break a score of 100 for the past year, to no avail. When I started playing I didn’t keep a stroke score, but rather counted the number of balls I lost during a round – and it was consistently a double digit number. Yesterday I used the same ball from the 8th to the 18th hole before knocking it into the woods. [He has since broken 100 and played an entire 18 holes with a single ball. He brought it home and told me to keep it. It's sitting on my desk as I type. He was very proud.] Golf has truly become a passion. And while I could aspire to play golf at some of the bigger and nicer courses and country clubs, I am completely satisfied at Montevallo.
There is an old couple who drives around the golf course on their cart every day. Sometimes they have the dogs with them. Sometimes the lady gets out and walks while the man drives around. They drive around the course, staying out of the way of the “regular patrons” and play the open holes. I have seen them all times of day from early in the morning to just before dusk. They sure seem to be happy. And while I do not wish that I was retirement age, I certainly believe I could be content and happy driving around the Montevallo 18 after I retire instead of playing at some high class country club.
So much for that. They have started the meds and I am ready for the ride. Good riddance cancer. [Amen.]
Tuesday, August 28, 2012
Dave's Chemo Journal: June 5, 2012
From round four.
June 5, 2012 – 1:40 p.m. Number four. Hopefully I am past the halfway point of this process and headed for the home stretch. I only have two more scheduled treatments after today. Then scans from time to time for the next couple of years to make sure there is no cancer in my body.
The last treatment was horrible. I did not realize quite how horrible until I was leaving the hospital on May 15, but I knew then that mistakes were made during the treatment. First, my white blood cell count was probably too low for me to have undergone treatment. It was 2500 on May 15 and that is the cutoff for the doctor to administer treatment. Today the white count was at 3300 and I feel much better. It is amazing the difference 800 blood cells can make.
Secondly, I did not eat during the May 15 treatment, so I was nauseated not only from the medicine but also from the lack of food. I choked something down on the way home, but it was too late. That combined with the low white cell count made for a miserable experience. I went to bed as soon as I got home from the hospital at 4:00 and pretty much slept all night, then kept the same bedtime on the next day. But after two days of primarily sleeping, I was fine.
Today, I feel better than last time. I still have nausea, but it is not out of control. I am tired, but functional. I really dreaded coming for the treatment today because of the experience from last time, but I am doing okay and feeling a little inspired. Maybe the dread will not be so bad for treatments five and six.
June 5, 2012 – 1:40 p.m. Number four. Hopefully I am past the halfway point of this process and headed for the home stretch. I only have two more scheduled treatments after today. Then scans from time to time for the next couple of years to make sure there is no cancer in my body.
The last treatment was horrible. I did not realize quite how horrible until I was leaving the hospital on May 15, but I knew then that mistakes were made during the treatment. First, my white blood cell count was probably too low for me to have undergone treatment. It was 2500 on May 15 and that is the cutoff for the doctor to administer treatment. Today the white count was at 3300 and I feel much better. It is amazing the difference 800 blood cells can make.
Secondly, I did not eat during the May 15 treatment, so I was nauseated not only from the medicine but also from the lack of food. I choked something down on the way home, but it was too late. That combined with the low white cell count made for a miserable experience. I went to bed as soon as I got home from the hospital at 4:00 and pretty much slept all night, then kept the same bedtime on the next day. But after two days of primarily sleeping, I was fine.
Today, I feel better than last time. I still have nausea, but it is not out of control. I am tired, but functional. I really dreaded coming for the treatment today because of the experience from last time, but I am doing okay and feeling a little inspired. Maybe the dread will not be so bad for treatments five and six.
Monday, August 27, 2012
Dave's Chemo Journal: May 15, 2012
Dave's round three entry. It's a short one!
May 15, 2012 – 10:45 a.m. – Here I am back at the hospital for the third treatment. I have been here since 8 and they still haven’t started Rituxan. It will take at least two hours once it is started. I have gained weight since last time – too much weight. I am up to 247. I feel much better at 235. I know I need to make some serious diet changes. [Note: He had lost 20 - 25 lbs in the 10 days he was in the hospital, so his weight has gone up and down drastically in the last 6 months.]
I am not that upset about the treatments. I sincerely believe I am healed and this cancer will not come back. I have a peace about it. I don’t know when the next scan will be, but I know I will be devastated if cancer shows up.
I haven’t written in this journal since my last treatment. That is definitely a sign that I am better psychologically and emotionally. The hardest part is coming to the treatment. I felt so good this morning and for much of the past week and a half, but I have to come back in here today for more medicine. That is quite a mental challenge.
May 15, 2012 – 10:45 a.m. – Here I am back at the hospital for the third treatment. I have been here since 8 and they still haven’t started Rituxan. It will take at least two hours once it is started. I have gained weight since last time – too much weight. I am up to 247. I feel much better at 235. I know I need to make some serious diet changes. [Note: He had lost 20 - 25 lbs in the 10 days he was in the hospital, so his weight has gone up and down drastically in the last 6 months.]
I am not that upset about the treatments. I sincerely believe I am healed and this cancer will not come back. I have a peace about it. I don’t know when the next scan will be, but I know I will be devastated if cancer shows up.
I haven’t written in this journal since my last treatment. That is definitely a sign that I am better psychologically and emotionally. The hardest part is coming to the treatment. I felt so good this morning and for much of the past week and a half, but I have to come back in here today for more medicine. That is quite a mental challenge.
Friday, August 24, 2012
Dave's Chemo Journal: April 23, 2012
This is Dave's journal from round two.
April 23, 2012
Chemo number two is today. I am here in my recliner and absolutely dreading the moment when they come out and attach my port line to the bag of medicine. I just heard a nurse come up and say, “He’s vomiting.” I don’t know who or where he is, but I sure hope that isn’t me in a bit.
I have been feeling so good the last few days it is hard to actually believe I am sick. When I came for the first treatment, I was still recovering from two surgeries and had frequent pain and discomfort. Three weeks have healed my body to the point I feel really good and can function at an almost normal level. I really don’t want to take medicine that will make me feel worse than I do right now. The dread has been with me for the past couple of days and has even manifested itself in my sleep.
I dreamed last night that the doctor called Amanda and told her that I had responded so well to the first treatment that I did not have to take any more chemo. What a nightmare. I almost cried when I woke up and realized that no such call had been made.
I can hear the guy down the aisle from me here heaving his guts up now. They still haven’t attached me to the medicine. I think they are debating which chemo to give me first – the R or the CHOP. One nurse said I was getting CHOP first and she would wait to give me Tylenol and Benadryl until closer to time for the R. Then another nurse came and gave me the Tylenol and Benadryl and said, “Down the hatch.” So I took it and now they have been discussing what I am going to get first. I just heard the nurse who gave me the medicine say, “We may have to do the Rituxan first.” Surely they haven’t screwed me up already.
2:11 p.m. – Just about done with the second treatment. Not nearly as bad as the first. If I could not see the line connecting the medicine to me, I would not know it was going in. They gave the Rituxan first and it took a long time. I watched a movie all morning and have been looking around on the internet this afternoon. I was a little tired and sleepy, but I think the Benadryl has worn off so I am pretty much awake. Just sitting in a chair for this long is draining and I think that has made me as tired as anything else.
April 23, 2012
Chemo number two is today. I am here in my recliner and absolutely dreading the moment when they come out and attach my port line to the bag of medicine. I just heard a nurse come up and say, “He’s vomiting.” I don’t know who or where he is, but I sure hope that isn’t me in a bit.
I have been feeling so good the last few days it is hard to actually believe I am sick. When I came for the first treatment, I was still recovering from two surgeries and had frequent pain and discomfort. Three weeks have healed my body to the point I feel really good and can function at an almost normal level. I really don’t want to take medicine that will make me feel worse than I do right now. The dread has been with me for the past couple of days and has even manifested itself in my sleep.
I dreamed last night that the doctor called Amanda and told her that I had responded so well to the first treatment that I did not have to take any more chemo. What a nightmare. I almost cried when I woke up and realized that no such call had been made.
I can hear the guy down the aisle from me here heaving his guts up now. They still haven’t attached me to the medicine. I think they are debating which chemo to give me first – the R or the CHOP. One nurse said I was getting CHOP first and she would wait to give me Tylenol and Benadryl until closer to time for the R. Then another nurse came and gave me the Tylenol and Benadryl and said, “Down the hatch.” So I took it and now they have been discussing what I am going to get first. I just heard the nurse who gave me the medicine say, “We may have to do the Rituxan first.” Surely they haven’t screwed me up already.
2:11 p.m. – Just about done with the second treatment. Not nearly as bad as the first. If I could not see the line connecting the medicine to me, I would not know it was going in. They gave the Rituxan first and it took a long time. I watched a movie all morning and have been looking around on the internet this afternoon. I was a little tired and sleepy, but I think the Benadryl has worn off so I am pretty much awake. Just sitting in a chair for this long is draining and I think that has made me as tired as anything else.
Thursday, August 23, 2012
Dave's Chemo Journal: April 19, 2012
In this entry, Dave recounts 12 days worth of activity between rounds 1 and 2 of chemo.
April 19, 2012
I am excited to see that I have not written anything here in 12 days. Writing is typically something I do when I am sad, depressed or devastatingly bored. There has been some of that since the last journal entry, but none in the past several days. Let’s see what I have done . . . .
On April 8 (Easter), I had a pretty good day. Church, hiding eggs with the kids, etc. We went to a dinner get together at 6 and I had to come home early. My stomach was sketchy and I was very tired. In bed by 7:30.
On April 9 I went to the doctor for blood work and my white cell count was 700 (versus 3800 at my initial appointment). The doctor told me I could become infected easily and I should be careful not to be around any germs if possible. I went to the office for a while, but could not stand to just sit there and not go to the courthouse. Knowing that I did not need to go to the courthouse and desperately wanting to go find some new work tore me apart until I left around noon and went to the golf course. That might have been too much for me as I was in bed right after dinner. My temperature spiked and we called the doctor’s office. He called us back from his home phone, but my temperature had returned to normal and he told us just to keep watching it.
On Tuesday, I had hearings in the morning and an appointment in the late afternoon. I worked a full day and felt pretty good all day. Amanda’s mom offered to keep the kids for the night so we had dinner and watched a much needed funny movie.
On Wednesday, April 11, I did go to the courthouse in the morning and then spent the afternoon visiting children who I represent in court at their homes. It was very fulfilling and I thoroughly enjoyed it.
On Thursday I went to the office and then made a trip to see another client in an institution in north Alabama. The 280 mile round trip was good for my spirits and I got home by 2:30, just in time to make it to the golf course.
I followed up with my primary care doctor in the morning on Friday the 13th and went to the golf course with my brother-in-law at 10.
I felt good and pretty normal from Tuesday through Friday and my health and treatment side effects did not keep me from doing anything that I wanted to do.
On Saturday, we all got up early and went to a local state park to participate in a run/walk for the Leukemia and Lymphoma Society. My sister-in-law organized a team for us and we all wore t-shirts bearing the slogan “Lymphoma Sucks” in lime green. The back of the shirts said, “I wear lime green for Dave Roper, a Certified Lymphoma Butt Kicker.” My kids had shirts that said “I wear lime green for my Daddy.” Those have made me cry more than once since the kids got them.
We participated in the race and walked with my brother and his wife. We took turns pushing the kids in the stroller and finished the 5k in 51 minutes. Certainly not as fast a time as I would have wanted to clock if I were running the race at full strength, but not bad considering the circumstances. After the run, our team had breakfast at the park. Over 20 people wearing their shirts in my honor. It was pretty awesome.
We went to the store on the way home and played outside in the pool in the afternoon before cooking dinner on the grill. It felt like a pretty normal spring Saturday.
Sunday was normal too – with church, lunch after church, a nap after lunch and a visit with Amanda’s uncle and cousins in the late afternoon. Great days all around.
On Monday it started happening slowly. I had not really believed that it would happen, even though the doctors told me that it would. I was at work when I first noticed it just a little and by the time I got home, it became apparent that this would be a reality during the next few months.
On Tuesday my son had surgery to get tubes put in his ears and it became such an issue while we were at Children’s Hospital that I decided to buy the necessary equipment and handle the problem. It looked like someone had been grooming a dog in his hospital room for goodness sakes. So on the way home, we bought clippers and new razor blades and I became a bald man that afternoon.
Wednesday I worked half a day and played golf in the afternoon – still feeling fine and perhaps using my “sickness” as an excuse to blow off work in the middle of the week. And today I am here, back at work with a full day planned out, feeling fine. I wouldn’t know I have anything wrong if the medical professionals didn’t keep telling me that I do. Of course, that makes me entertain the possibility of terminating my chemotherapy, but I know that would piss off the wife. So I guess I better keep going with it. Next one is Monday. I will probably be writing more then.
April 19, 2012
I am excited to see that I have not written anything here in 12 days. Writing is typically something I do when I am sad, depressed or devastatingly bored. There has been some of that since the last journal entry, but none in the past several days. Let’s see what I have done . . . .
On April 8 (Easter), I had a pretty good day. Church, hiding eggs with the kids, etc. We went to a dinner get together at 6 and I had to come home early. My stomach was sketchy and I was very tired. In bed by 7:30.
On April 9 I went to the doctor for blood work and my white cell count was 700 (versus 3800 at my initial appointment). The doctor told me I could become infected easily and I should be careful not to be around any germs if possible. I went to the office for a while, but could not stand to just sit there and not go to the courthouse. Knowing that I did not need to go to the courthouse and desperately wanting to go find some new work tore me apart until I left around noon and went to the golf course. That might have been too much for me as I was in bed right after dinner. My temperature spiked and we called the doctor’s office. He called us back from his home phone, but my temperature had returned to normal and he told us just to keep watching it.
On Tuesday, I had hearings in the morning and an appointment in the late afternoon. I worked a full day and felt pretty good all day. Amanda’s mom offered to keep the kids for the night so we had dinner and watched a much needed funny movie.
On Wednesday, April 11, I did go to the courthouse in the morning and then spent the afternoon visiting children who I represent in court at their homes. It was very fulfilling and I thoroughly enjoyed it.
On Thursday I went to the office and then made a trip to see another client in an institution in north Alabama. The 280 mile round trip was good for my spirits and I got home by 2:30, just in time to make it to the golf course.
I followed up with my primary care doctor in the morning on Friday the 13th and went to the golf course with my brother-in-law at 10.
I felt good and pretty normal from Tuesday through Friday and my health and treatment side effects did not keep me from doing anything that I wanted to do.
On Saturday, we all got up early and went to a local state park to participate in a run/walk for the Leukemia and Lymphoma Society. My sister-in-law organized a team for us and we all wore t-shirts bearing the slogan “Lymphoma Sucks” in lime green. The back of the shirts said, “I wear lime green for Dave Roper, a Certified Lymphoma Butt Kicker.” My kids had shirts that said “I wear lime green for my Daddy.” Those have made me cry more than once since the kids got them.
We participated in the race and walked with my brother and his wife. We took turns pushing the kids in the stroller and finished the 5k in 51 minutes. Certainly not as fast a time as I would have wanted to clock if I were running the race at full strength, but not bad considering the circumstances. After the run, our team had breakfast at the park. Over 20 people wearing their shirts in my honor. It was pretty awesome.
We went to the store on the way home and played outside in the pool in the afternoon before cooking dinner on the grill. It felt like a pretty normal spring Saturday.
Sunday was normal too – with church, lunch after church, a nap after lunch and a visit with Amanda’s uncle and cousins in the late afternoon. Great days all around.
On Monday it started happening slowly. I had not really believed that it would happen, even though the doctors told me that it would. I was at work when I first noticed it just a little and by the time I got home, it became apparent that this would be a reality during the next few months.
On Tuesday my son had surgery to get tubes put in his ears and it became such an issue while we were at Children’s Hospital that I decided to buy the necessary equipment and handle the problem. It looked like someone had been grooming a dog in his hospital room for goodness sakes. So on the way home, we bought clippers and new razor blades and I became a bald man that afternoon.
Wednesday I worked half a day and played golf in the afternoon – still feeling fine and perhaps using my “sickness” as an excuse to blow off work in the middle of the week. And today I am here, back at work with a full day planned out, feeling fine. I wouldn’t know I have anything wrong if the medical professionals didn’t keep telling me that I do. Of course, that makes me entertain the possibility of terminating my chemotherapy, but I know that would piss off the wife. So I guess I better keep going with it. Next one is Monday. I will probably be writing more then.
Tuesday, August 21, 2012
Dave's Chemo Journal: April 4, 2012
Here's the next entry in Dave's journal.
April 4, 2012
So I finished up with the first chemo treatment Monday at 5:30 pm. I was at the doctor’s office for a full nine hours. I left feeling a bit tired and nauseated. The doctor prescribed nausea medicine which we filled before going home. I took one as soon as we hit the door. I was in bed by 7:30.
The next morning I woke up around 6:00 and thought I might be able to go to the golf course for a morning round before going back to the doctor at 1:45 to get my shot. I went to the bathroom and took a shower, then immediately went to my recliner and stayed there for the next two hours looking at the television and internet, completely exhausted from my morning activity. I watched a movie and had lunch at around 12:00, followed by another nausea pill and some pain reliever. [Amanda's note: Remember that he was still recovering from two surgeries. He never needed pain reliever for chemo side effects.]
When we got to the doctor, the nurse called me back to the room promptly and proceeded with my shot. My experience the day before taught me to ask questions about any item being shot into my body. I asked the nurse what this shot would do and she responded that it would cause my bone marrow to create more white blood cells. “And what will it do to me?” “Well, since the medicine affects your bones, you will probably have some bone pain and flu like symptoms.” Great. That will go nicely with my nausea and fatigue. Bone pain. How lovely.
After the shot we visited a friend in the hospital who had given birth the day before. Then we went to my office for about an hour before heading to my daughter’s soccer practice at 5:30. I faded fast at soccer and spent a good bit of the practice sitting in the car. We made it home at about 7:00 and had dinner – leftovers from lunch that Amanda had already pre-plated for all of us. I was in bed again by 7:30 and pretty much oblivious to anything going on around me.
Today I woke up at about 5:30 and was again full of energy. Today was circled on my calendar as a day that I must get to work. I had something very important that required my attendance and at least part of my attention. I took a shower, brushed my teeth and shaved and by 6:15, I was ready to go back to bed. But I pushed through and left for work with the wife in tow at 7:00.
I made it through my schedule of items at 9:00 and 10:00 this morning, but started feeling a bit dizzy and lightheaded at around 10:45. I went back to the office and stripped off my coat and tie and shuffled papers for about an hour until lunch.
My “must be here for this today” assignment was scheduled at 2:00 and I made it through, finished at 2:45. As soon as that was over, I headed back to the office and was on the road for home by 3:00. Seven hours of work on the second day after a nine hour chemo session – not too bad. We will see what tomorrow brings. It is not quite 5:00 yet and I could probably sleep until the morning.
The hardest part of this is not being able to seize the day. I am looking out the front window of my house into bright sunshine with a gentle breeze. The temperature is around 80 and the skies are bright blue with big white clouds. A picture of perfection that would support all manner of projects and activities, and my body is too weak to do anything but go outside and sit. Something that will only make me more frustrated by my inability to truly enjoy the weather.
April 4, 2012
So I finished up with the first chemo treatment Monday at 5:30 pm. I was at the doctor’s office for a full nine hours. I left feeling a bit tired and nauseated. The doctor prescribed nausea medicine which we filled before going home. I took one as soon as we hit the door. I was in bed by 7:30.
The next morning I woke up around 6:00 and thought I might be able to go to the golf course for a morning round before going back to the doctor at 1:45 to get my shot. I went to the bathroom and took a shower, then immediately went to my recliner and stayed there for the next two hours looking at the television and internet, completely exhausted from my morning activity. I watched a movie and had lunch at around 12:00, followed by another nausea pill and some pain reliever. [Amanda's note: Remember that he was still recovering from two surgeries. He never needed pain reliever for chemo side effects.]
When we got to the doctor, the nurse called me back to the room promptly and proceeded with my shot. My experience the day before taught me to ask questions about any item being shot into my body. I asked the nurse what this shot would do and she responded that it would cause my bone marrow to create more white blood cells. “And what will it do to me?” “Well, since the medicine affects your bones, you will probably have some bone pain and flu like symptoms.” Great. That will go nicely with my nausea and fatigue. Bone pain. How lovely.
After the shot we visited a friend in the hospital who had given birth the day before. Then we went to my office for about an hour before heading to my daughter’s soccer practice at 5:30. I faded fast at soccer and spent a good bit of the practice sitting in the car. We made it home at about 7:00 and had dinner – leftovers from lunch that Amanda had already pre-plated for all of us. I was in bed again by 7:30 and pretty much oblivious to anything going on around me.
Today I woke up at about 5:30 and was again full of energy. Today was circled on my calendar as a day that I must get to work. I had something very important that required my attendance and at least part of my attention. I took a shower, brushed my teeth and shaved and by 6:15, I was ready to go back to bed. But I pushed through and left for work with the wife in tow at 7:00.
I made it through my schedule of items at 9:00 and 10:00 this morning, but started feeling a bit dizzy and lightheaded at around 10:45. I went back to the office and stripped off my coat and tie and shuffled papers for about an hour until lunch.
My “must be here for this today” assignment was scheduled at 2:00 and I made it through, finished at 2:45. As soon as that was over, I headed back to the office and was on the road for home by 3:00. Seven hours of work on the second day after a nine hour chemo session – not too bad. We will see what tomorrow brings. It is not quite 5:00 yet and I could probably sleep until the morning.
The hardest part of this is not being able to seize the day. I am looking out the front window of my house into bright sunshine with a gentle breeze. The temperature is around 80 and the skies are bright blue with big white clouds. A picture of perfection that would support all manner of projects and activities, and my body is too weak to do anything but go outside and sit. Something that will only make me more frustrated by my inability to truly enjoy the weather.
Monday, August 20, 2012
Dave's Chemo Journal: The End and the Beginning
Dave sent me the journal he kept throughout the chemo process and told me to post as I see fit. I read the whole thing and there is good information in there for others who are just starting the process. There will be several posts, but I've decided to start with the last entry and then back up to the beginning.
August 14, 2012
I guess, just to put a bow on things, I will write in this journal today. Yesterday would have been the day I would normally expect to go for chemo at the doctor’s office, but we just had an appointment and my PET scan showed all clear for now.
I read the first couple of pages of this journal before coming here to type the final entry and, amazing as it is, even reading the words I typed while receiving the chemo treatment brings a twinge of nausea to my stomach. So to heck with me reading this. Hope you, whomever you may be, enjoy.
Now that we have his blessing and get a general feel for how over the whole situation he is, here is the first entry. It's a long one.
April 2, 2012
So, here I am at the first day of chemotherapy. I am sitting in a beige colored reclining chair with my feet up and a paper pillow behind my head. My neck hurts because I cannot find the proper fold to make the pillow comfortable but other than that I feel pretty good. In fact, the pain and fatigue in my neck is my primary source of discomfort, much more intolerable than the healing incisions from my recent two surgeries.
There are two bags of fluids hanging beside my chair and fluid is dripping into my IV and into the port in my chest. The nurse said these initial fluids are the pre-treatment medications given in attempt to prevent any sickness from the actual medications. I have not actually taken any medicine yet, but I will by the end of the day. They say I will be here between five and six hours today receiving this treatment. I am fully equipped with my laptop, iPod, book, sunflower seeds, mints and phone to attempt to combat the looming which I know awaits. It is 11:20 and I have been connected for less than an hour though I have been at the clinic since 8:30. It appears I will spend the entire work day with the nurses and staff here at the center.
I met with the doctor this morning and he was very comforting and reassuring. This was my first contact with him since my initial appointment and my first opportunity to discuss the results of my PET scan with him. The nurse called ten days ago and told me that I have a minimal amount of cancer remaining in my body, but she could not answer any specific questions about the meaning of “minimal amount”. I was excited to come to the doctor today to obtain a more precise definition of this term even though I was nervous about taking the chemotherapy.
We waited in the room for the doctor for about half an hour and I was opening the door to go to the bathroom just as he was coming in. He left my chart on the table and went to see another patient, giving me the opportunity to review my records while waiting on him to come back. When I started looking at my chart, Amanda jumped to her feet, excited to take a peek. We could overhear all of the activity in the hallway and Amanda quickly sat back down several times when she heard footsteps approaching our room, leaving me standing alone with my open medical chart.
When the doctor finally came back in, I went through my list of questions:
“What do I expect from chemotherapy?”
“What physical restrictions will I have after treatment?”
“What does a minimal amount of cancer mean?”
The doctor went through the anticipated side effects of chemo with me and then went over all of the precautionary medications they administer in attempt to prevent those side effects. He also indicated that I have “garden variety” (a term actually listed in my medical chart) diffuse large B cell cancer and that my treatment regimen will consist of six sessions of R-CHOP chemotherapy.
Regarding physical activity, he indicated that I could work and participate in light exercise. He recommended that I not work out but told me that I could play golf. He went on to recommend I read a particular book to improve my golf swing and gave me three research based tips about golf he had recently read in the Wall Street Journal. After five minutes or so discussing golf, he returned to the business of discussing cancer and told me (after reviewing the reading of the PET scan that I had already thoroughly reviewed without understanding a bit of it) that I have no significant traceable cancer in my body. I asked the doc what stage of cancer I have and he kind of beat around the bush a little but told me that I am probably a 1E or maybe a 2. He then reported that with my particular brand of “garden variety” cancer, treatment of Stages 1, 2 and 3 is virtually the same and Stage 4 is really what you want to avoid. Perhaps that is the perspective from the medical professional, but I was elated and relieved to hear the magic words “Stage 1” come from the doc’s mouth.
After we met with the doctor, I went to the “party room”, a room with nurses, supplies and a few chairs to wait on my recliner. There are at least twenty recliners in this place and they were all full. I had no idea there were so many people receiving cancer treatment. A nurse came into the party room in a few minutes and did my “teaching”, going over what side effects to expect from the medications, the remedy for each effect and the situations necessitating a call to the office.
In a few minutes, a recliner opened up and I was escorted to it and my port was hooked into the IV bags. After about an hour, a nurse came over to my chair with a large syringe filled with red colored liquid. She was wearing latex gloves and had a gown covering her clothes, so I knew that the real chemo was about to begin. All of the prior three hours had just been prep work for this moment.
The name of the red medicine is Adriamycin and the nurse said she wore the gloves and gown because it would cause a chemical burn if it leaked onto her skin. “And you’re putting this inside of me?” I asked. “Yep. It burns up the cancer.” How comforting a thought that something which burns the skin is being shot inside of me though the IV line connected to the plastic port implanted in the right side of my chest. But the red stuff didn’t really bother me. It went in easy and I didn’t feel a thing.
Next was a much smaller syringe containing a clear liquid called Vincristine, then a new bag of clear liquid to drip Cytoxan into my line for 45 minutes. After the Cytoxan was connected, the nurse brought Benadryl and Tylenol to take by mouth and get ready for the next stage. The nurse told me the Cytoxan might make my nose burn and it did just a little, a feeling like when you have been cleaning the bathroom with the door closed and inhale too much Tilex or Clorox. Nothing unbearable.
At 12:30, the Cytoxan was finished and the nurse connected me to a large bag of clear fluid called Rituxan. This medicine is the “R” of R-CHOP and the initial treatment takes four hours. I think the Benadryl and Tylenol was to prepare me for the Rituxan. The nurses have told me that this medicine may make me have chills and that if I do have chills, they will likely occur at about the one hour mark. I am only fifteen minutes in, but so far, I don’t have anything extremely unusual going on. My legs seem a little cold, but I think I may be feeling that just because I am expecting a chill. We shall see.
It is now 1:40 and I have finished lunch and have had time to get acclimated to the Rituxan. My hands and feet feel cold. I touched my hands to my face and my face felt ten degrees warmer. The nurse said my hands felt fine, not cold. Another nurse just came by and I was about to drift to sleep mid-sentence. She said she was going to bump my dosage up a little and asked how I felt. I told her that my hands are cold and I just got dizzy. She stopped the machine. Looks like I might be here until after 5.
I went to the bathroom a little while ago and had the harrowing yet somewhat predictable experience of producing urine with the color of orange Gatorade. This was not at all surprising considering the chemical red drug the nurse put in me this morning. The nurse told me this is normal during chemotherapy.
Now it is 3:30 and lots of folks have already left the hospital after receiving their treatments. I am stuck here getting this Rituxan and the bag looks to still be about half full. I never dreamed that my 8:30 appointment would last the entire day. Hopefully, the future treatments will not require me to spend the whole day at the doctor’s office.
R - Rituxan - 4 hour, clear drip
C – Cytoxan (Cyclophosphamide) – Clear drip
H – Doxorubicin Hydrochloride – (Adriamycin) - Red push
O – Oncovin (Vincristine) - Clear push
P – Prednisone – 4 tablets for four days following chemo administration
August 14, 2012
I guess, just to put a bow on things, I will write in this journal today. Yesterday would have been the day I would normally expect to go for chemo at the doctor’s office, but we just had an appointment and my PET scan showed all clear for now.
I read the first couple of pages of this journal before coming here to type the final entry and, amazing as it is, even reading the words I typed while receiving the chemo treatment brings a twinge of nausea to my stomach. So to heck with me reading this. Hope you, whomever you may be, enjoy.
Now that we have his blessing and get a general feel for how over the whole situation he is, here is the first entry. It's a long one.
April 2, 2012
So, here I am at the first day of chemotherapy. I am sitting in a beige colored reclining chair with my feet up and a paper pillow behind my head. My neck hurts because I cannot find the proper fold to make the pillow comfortable but other than that I feel pretty good. In fact, the pain and fatigue in my neck is my primary source of discomfort, much more intolerable than the healing incisions from my recent two surgeries.
There are two bags of fluids hanging beside my chair and fluid is dripping into my IV and into the port in my chest. The nurse said these initial fluids are the pre-treatment medications given in attempt to prevent any sickness from the actual medications. I have not actually taken any medicine yet, but I will by the end of the day. They say I will be here between five and six hours today receiving this treatment. I am fully equipped with my laptop, iPod, book, sunflower seeds, mints and phone to attempt to combat the looming which I know awaits. It is 11:20 and I have been connected for less than an hour though I have been at the clinic since 8:30. It appears I will spend the entire work day with the nurses and staff here at the center.
I met with the doctor this morning and he was very comforting and reassuring. This was my first contact with him since my initial appointment and my first opportunity to discuss the results of my PET scan with him. The nurse called ten days ago and told me that I have a minimal amount of cancer remaining in my body, but she could not answer any specific questions about the meaning of “minimal amount”. I was excited to come to the doctor today to obtain a more precise definition of this term even though I was nervous about taking the chemotherapy.
We waited in the room for the doctor for about half an hour and I was opening the door to go to the bathroom just as he was coming in. He left my chart on the table and went to see another patient, giving me the opportunity to review my records while waiting on him to come back. When I started looking at my chart, Amanda jumped to her feet, excited to take a peek. We could overhear all of the activity in the hallway and Amanda quickly sat back down several times when she heard footsteps approaching our room, leaving me standing alone with my open medical chart.
When the doctor finally came back in, I went through my list of questions:
“What do I expect from chemotherapy?”
“What physical restrictions will I have after treatment?”
“What does a minimal amount of cancer mean?”
The doctor went through the anticipated side effects of chemo with me and then went over all of the precautionary medications they administer in attempt to prevent those side effects. He also indicated that I have “garden variety” (a term actually listed in my medical chart) diffuse large B cell cancer and that my treatment regimen will consist of six sessions of R-CHOP chemotherapy.
Regarding physical activity, he indicated that I could work and participate in light exercise. He recommended that I not work out but told me that I could play golf. He went on to recommend I read a particular book to improve my golf swing and gave me three research based tips about golf he had recently read in the Wall Street Journal. After five minutes or so discussing golf, he returned to the business of discussing cancer and told me (after reviewing the reading of the PET scan that I had already thoroughly reviewed without understanding a bit of it) that I have no significant traceable cancer in my body. I asked the doc what stage of cancer I have and he kind of beat around the bush a little but told me that I am probably a 1E or maybe a 2. He then reported that with my particular brand of “garden variety” cancer, treatment of Stages 1, 2 and 3 is virtually the same and Stage 4 is really what you want to avoid. Perhaps that is the perspective from the medical professional, but I was elated and relieved to hear the magic words “Stage 1” come from the doc’s mouth.
After we met with the doctor, I went to the “party room”, a room with nurses, supplies and a few chairs to wait on my recliner. There are at least twenty recliners in this place and they were all full. I had no idea there were so many people receiving cancer treatment. A nurse came into the party room in a few minutes and did my “teaching”, going over what side effects to expect from the medications, the remedy for each effect and the situations necessitating a call to the office.
In a few minutes, a recliner opened up and I was escorted to it and my port was hooked into the IV bags. After about an hour, a nurse came over to my chair with a large syringe filled with red colored liquid. She was wearing latex gloves and had a gown covering her clothes, so I knew that the real chemo was about to begin. All of the prior three hours had just been prep work for this moment.
The name of the red medicine is Adriamycin and the nurse said she wore the gloves and gown because it would cause a chemical burn if it leaked onto her skin. “And you’re putting this inside of me?” I asked. “Yep. It burns up the cancer.” How comforting a thought that something which burns the skin is being shot inside of me though the IV line connected to the plastic port implanted in the right side of my chest. But the red stuff didn’t really bother me. It went in easy and I didn’t feel a thing.
Next was a much smaller syringe containing a clear liquid called Vincristine, then a new bag of clear liquid to drip Cytoxan into my line for 45 minutes. After the Cytoxan was connected, the nurse brought Benadryl and Tylenol to take by mouth and get ready for the next stage. The nurse told me the Cytoxan might make my nose burn and it did just a little, a feeling like when you have been cleaning the bathroom with the door closed and inhale too much Tilex or Clorox. Nothing unbearable.
At 12:30, the Cytoxan was finished and the nurse connected me to a large bag of clear fluid called Rituxan. This medicine is the “R” of R-CHOP and the initial treatment takes four hours. I think the Benadryl and Tylenol was to prepare me for the Rituxan. The nurses have told me that this medicine may make me have chills and that if I do have chills, they will likely occur at about the one hour mark. I am only fifteen minutes in, but so far, I don’t have anything extremely unusual going on. My legs seem a little cold, but I think I may be feeling that just because I am expecting a chill. We shall see.
It is now 1:40 and I have finished lunch and have had time to get acclimated to the Rituxan. My hands and feet feel cold. I touched my hands to my face and my face felt ten degrees warmer. The nurse said my hands felt fine, not cold. Another nurse just came by and I was about to drift to sleep mid-sentence. She said she was going to bump my dosage up a little and asked how I felt. I told her that my hands are cold and I just got dizzy. She stopped the machine. Looks like I might be here until after 5.
I went to the bathroom a little while ago and had the harrowing yet somewhat predictable experience of producing urine with the color of orange Gatorade. This was not at all surprising considering the chemical red drug the nurse put in me this morning. The nurse told me this is normal during chemotherapy.
Now it is 3:30 and lots of folks have already left the hospital after receiving their treatments. I am stuck here getting this Rituxan and the bag looks to still be about half full. I never dreamed that my 8:30 appointment would last the entire day. Hopefully, the future treatments will not require me to spend the whole day at the doctor’s office.
R - Rituxan - 4 hour, clear drip
C – Cytoxan (Cyclophosphamide) – Clear drip
H – Doxorubicin Hydrochloride – (Adriamycin) - Red push
O – Oncovin (Vincristine) - Clear push
P – Prednisone – 4 tablets for four days following chemo administration
Monday, August 13, 2012
The Turning of a Season
It seems fitting that we found out that Dave's cancer is in remission when the first hint of fall is in the air. Just yesterday he called me outside before church so I could feel the fall before the sun burned it away. It's a welcome reprieve, the remission with the changing season.
While I am overwhelmingly happy, I'm also a bit shocked that it really is over - that we really did survive it. Despite constant reassurance and an otherworldy sense of peace, I've forced myself not to count the blessing before I heard the words from the doctor's mouth. Like a baseball player who refuses to change his socks for fear of ending a winning streak, I have refused to commit myself to the idea that everything would be fine for fear that I would jinx it.
As the doctor opened Dave's chart this morning to tell us the results of the PET scan, he said, "Let's see what kind of pet you are." I think we both sighed with relief. Whatever tiny bits of disease appeared on his first PET scan in March were gone this time. The surgery worked. The chemo worked. The prayers worked.
Thank you, God.
He got clearance from the doctor to have his port removed whenever he is ready. As he got dressed this morning he told me he was ready for it to be gone. He'll have another PET scan in three months. If that one is clear, he'll have scans every 6 months until he reaches the 2 year mark. There is a 70% chance that he is completely cured, but the greatest risk of relapse is in the first 2-3 years after treatment, so they'll keep close tabs on him for the next few years. After that, they'll do bloodwork and scans as needed until the 5 year mark. After five years of clean scans, we get to use the C word. For now, we'll just stick with a capital R, for fear of jinxing it, you know.
And, we will praise the Lord.
While I am overwhelmingly happy, I'm also a bit shocked that it really is over - that we really did survive it. Despite constant reassurance and an otherworldy sense of peace, I've forced myself not to count the blessing before I heard the words from the doctor's mouth. Like a baseball player who refuses to change his socks for fear of ending a winning streak, I have refused to commit myself to the idea that everything would be fine for fear that I would jinx it.
As the doctor opened Dave's chart this morning to tell us the results of the PET scan, he said, "Let's see what kind of pet you are." I think we both sighed with relief. Whatever tiny bits of disease appeared on his first PET scan in March were gone this time. The surgery worked. The chemo worked. The prayers worked.
Thank you, God.
He got clearance from the doctor to have his port removed whenever he is ready. As he got dressed this morning he told me he was ready for it to be gone. He'll have another PET scan in three months. If that one is clear, he'll have scans every 6 months until he reaches the 2 year mark. There is a 70% chance that he is completely cured, but the greatest risk of relapse is in the first 2-3 years after treatment, so they'll keep close tabs on him for the next few years. After that, they'll do bloodwork and scans as needed until the 5 year mark. After five years of clean scans, we get to use the C word. For now, we'll just stick with a capital R, for fear of jinxing it, you know.
And, we will praise the Lord.
Again, thank you for lifting us up. We would have been lost without the prayers."Praise the Lord, my soul;all my inmost being, praise his holy name.Praise the Lord, my soul,and forget not all his benefits—who forgives all your sinsand heals all your diseases,who redeems your life from the pitand crowns you with love and compassion,who satisfies your desires with good thingsso that your youth is renewed like the eagle’s." - Psalm 103: 1-5
Tuesday, July 31, 2012
Round 6 is All Done
With lots of support along the way, we did it. Six rounds of chemo are complete. Today is day nine of round six and Dave is feeling better. The fatigue hung around a lot longer this time. He thinks it’s because he had to take an extra antibiotic that made him feel yucky. I think it’s because we didn’t have time to rest before this round. The last six weeks have been extremely busy. But now it’s over.
This round was a lot easier on me because I knew it was the last one. Just knowing that I don’t have to take him back for chemo in two weeks makes me ecstatic. There’s still a great big unanswered question in front of us, so we haven’t danced naked in the streets yet, but the relief of knowing that this phase of the process is over lifted a huge weight from my soul.
If you’ve seen him lately, you’ll know that is hair is already growing back. It started sprouting in earnest during the extra week after round four and he decided not to shave it again. He lost a few of the black ones after round five, but the gray ones? Well, I’m not sure you can kill them. They seem to be the cockroaches of hair. Even chemo doesn’t kill them. Now he has enough that it gets all crunched up on the side of the head when he’s sleeping like it used to. And now he actually has to dry it when he gets out of the shower, and he almost needs a brush. Ella walked by him in the living room the other night and said, “It looks like you’re growing some hair up there, buddy.” His eyebrows never did fall out completely but they did get thinner.
Next week he’ll have a PET scan and the week after that, we’ll know. Until then, we will rest in thankfulness that there isn’t a Round 7.
This round was a lot easier on me because I knew it was the last one. Just knowing that I don’t have to take him back for chemo in two weeks makes me ecstatic. There’s still a great big unanswered question in front of us, so we haven’t danced naked in the streets yet, but the relief of knowing that this phase of the process is over lifted a huge weight from my soul.
If you’ve seen him lately, you’ll know that is hair is already growing back. It started sprouting in earnest during the extra week after round four and he decided not to shave it again. He lost a few of the black ones after round five, but the gray ones? Well, I’m not sure you can kill them. They seem to be the cockroaches of hair. Even chemo doesn’t kill them. Now he has enough that it gets all crunched up on the side of the head when he’s sleeping like it used to. And now he actually has to dry it when he gets out of the shower, and he almost needs a brush. Ella walked by him in the living room the other night and said, “It looks like you’re growing some hair up there, buddy.” His eyebrows never did fall out completely but they did get thinner.
Next week he’ll have a PET scan and the week after that, we’ll know. Until then, we will rest in thankfulness that there isn’t a Round 7.
Wednesday, July 18, 2012
The Port: He Love-Hates It
One of the bits of information I went looking for but had trouble finding at the beginning of this cancer journey was documented personal experience with “the port.” It’s such a generic phrase and there are lots of different kinds of ports with different purposes. I understood the idea, but I didn’t satisfy my curiosity about it until Dave actually had his put in and the nurse put the owner’s manual in my hands. Finally, I had information to devour.
I suspect that not many people write about it or post pictures of it because... well, because of a lot of reasons. I obtained Dave’s permission to write this post about it so that information will be out there for the next person who needs it. He told me I could include pictures from the manufacturer’s website, but I am forbidden to post a picture of it in his body because it is too personal.
Dave has a Bard PowerPort that looks like this. This picture is enlarged to show detail; it’s actually about the size of a quarter.
It lives in the right side of his chest. If you put your left thumb in the dip between your collar bones and spread your fingers comfortably on the right side of your chest, the port would be between your pinky and ring fingers. Outpatient surgery with twilight drugs is required to put it in (mainly to keep everything sterile but also for the good drugs), and it requires a 2 inch incision where the actual port goes in and another centimeter length incision a couple of inches above that to help guide it into position. I think Dave’s procedure took about thirty minutes.
This is what it looks like inside the body.
The port goes right under the skin and the catheter is threaded into a blood vessel. He had soreness in his shoulder for a couple of days after the surgery, but it didn’t require narcotics. I don’t think he even took ibuprofen.
The little incision was closed with a dissolvable stitch and the 2 inch incision was closed with steri-tapes, because the oncology nurses would have to access it two days later for chemo. He had to keep it dry for 7 days, so we bought those giant square Band-Aids to put over it while he showered. For a couple of weeks, it was swollen so it just looked like a knot under his skin. Now, you can see the three little palpation bumps through his skin when he’s not wearing a shirt. Otherwise, you don’t even know it’s there when he’s wearing his usual t-shirt / dress shirt combo. This is the benefit of being a man. If it were in my body, you would be able to see it at the necklines of some of my shirts.
It eliminates the need to start an IV line for each chemo session and eliminates the need to draw blood from a vein in his arm. I believe they might also be able to access it to inject the radio-active glucose for the PET scan; we’ll find out about that in a few weeks. They spray the skin with Dermaplast, or something like it, to numb it before they stick him so he never has to feel the stick. That is how they draw blood to check his counts and how they hook up the IV for the chemo.
They use a special needle (a Huber needle) to access the port and it looks like this when it’s ready to be hooked up to the IV.
It has titanium in it so it will show up on an x-ray and possibly set off metal detectors.
For that reason, he carries an identification card in his wallet. He also wears a purple bracelet so that if he has an accident and finds himself unconscious, the medical staff will know that he has a port and what kind it is.
When it’s time to take it out, he’ll schedule an in-office appointment with the surgeon to remove it. He doesn’t have to be in the OR for that part. He’ll probably keep it for at least a year after he finishes chemo, just in case. And because it makes the blood draws so much easier.
He hates it because it is a foreign object in his body that you can see from the outside. He is very aware of it and it feels weird. He also hates the reason he has it. He loves it because it makes the whole experience a little more comfortable for him, needle hater that he is.
The pictures are from the Bard website.
I suspect that not many people write about it or post pictures of it because... well, because of a lot of reasons. I obtained Dave’s permission to write this post about it so that information will be out there for the next person who needs it. He told me I could include pictures from the manufacturer’s website, but I am forbidden to post a picture of it in his body because it is too personal.
Dave has a Bard PowerPort that looks like this. This picture is enlarged to show detail; it’s actually about the size of a quarter.
 |
| I don't know why they make them purple. |
This is what it looks like inside the body.
The port goes right under the skin and the catheter is threaded into a blood vessel. He had soreness in his shoulder for a couple of days after the surgery, but it didn’t require narcotics. I don’t think he even took ibuprofen.
The little incision was closed with a dissolvable stitch and the 2 inch incision was closed with steri-tapes, because the oncology nurses would have to access it two days later for chemo. He had to keep it dry for 7 days, so we bought those giant square Band-Aids to put over it while he showered. For a couple of weeks, it was swollen so it just looked like a knot under his skin. Now, you can see the three little palpation bumps through his skin when he’s not wearing a shirt. Otherwise, you don’t even know it’s there when he’s wearing his usual t-shirt / dress shirt combo. This is the benefit of being a man. If it were in my body, you would be able to see it at the necklines of some of my shirts.
It eliminates the need to start an IV line for each chemo session and eliminates the need to draw blood from a vein in his arm. I believe they might also be able to access it to inject the radio-active glucose for the PET scan; we’ll find out about that in a few weeks. They spray the skin with Dermaplast, or something like it, to numb it before they stick him so he never has to feel the stick. That is how they draw blood to check his counts and how they hook up the IV for the chemo.
They use a special needle (a Huber needle) to access the port and it looks like this when it’s ready to be hooked up to the IV.
 |
| Obviously the "tag" is the only part you see. |
Ella would have called this part a “tag” when she was younger. All the patients have tags sticking out of their shirts while they are waiting for a chair in the treatment room.
Once the treatment is over, they take it out and stick a cotton ball on top of the prick with a Band-Aid. He has to leave it on for a few hours in case leaks. We haven’t seen it leak, but that’s what the nurse told us after the first treatment.It has titanium in it so it will show up on an x-ray and possibly set off metal detectors.
 |
| Sample X-Ray |
When it’s time to take it out, he’ll schedule an in-office appointment with the surgeon to remove it. He doesn’t have to be in the OR for that part. He’ll probably keep it for at least a year after he finishes chemo, just in case. And because it makes the blood draws so much easier.
He hates it because it is a foreign object in his body that you can see from the outside. He is very aware of it and it feels weird. He also hates the reason he has it. He loves it because it makes the whole experience a little more comfortable for him, needle hater that he is.
The pictures are from the Bard website.
Thursday, July 05, 2012
My Dark Place
I have been struggling.
Or wallowing, if you like, in a pit of negativity, worry, and bitterness. It wasn’t the devil this time, at least he wasn’t in control the way he was the last time I got like this. I’m sure he has been poking at me, taking advantage of my weakness, but this time it was all me. I’ve been doing the things I am supposed to do – filling my heart and mind with praise and worship and Bible reading – but I’ve still acted like the unworthy sinner that I am and relished the wallowing instead of overcoming it.
It’s why I haven’t blogged in a while, or written anything at all. I’ve learned that when I get like that, it’s best to stay away from the blog lest the bitterness ooze out in my words and be preserved forever. That’s not what I want, though it’s probably when I should be writing the most.
I’ve also worried that some of you are tired of reading about cancer or just tired of reading what I write at all, so in my mind, I quit writing a thousand times. In my mind, I shut down the blog and my Facebook page. As punishment – though I don’t know who the punishment is directed at except me. When I’m despairing, I withhold information because I assume that no one cares what I have to say or what I’m struggling through. People have their own lives to live, their own struggles to attend to. They don’t need my drama on top of that. I know what it’s like to be filled to the brim, stretched to capacity with struggle, trying not to overflow on the nearest person who makes a well-intentioned but poorly worded comment that I take badly simply because I cannot process anything else. I don’t want to be the commenter and I try to limit my exposure to the comments.
But truthfully, though I came very close, I couldn’t do it. I couldn’t shut down the blog. It’s been my own personal space on the web since 2006 and I couldn’t end it now just because I’m struggling to claw my way out of a pit. And, though I came much closer to deactivating my Facebook page, I couldn’t do that either. It’s where most of you pick up the blog link, and it gives me a comfortable channel of communication with people I want to be in contact with that I would probably never call on the phone, because I’m very bad at calling people.
So I’ve been in this pit, worrying and trying to figure out if I should continue to blog about our journey through cancer and chemo or if enough is enough already, until last night when Dave’s Nana called to check on him. He had his fifth round of chemo on Monday (most of you didn’t know because I didn’t tell). We talked for a few minutes and she gave me the perspective I needed to resolve my wallowing two-fold. First, she told me, “I asked the kids [the ones who live near her] if you had posted anything on the Internet or whatever you do, but they said you hadn’t.” Nana is 90, if you’ll remember – it was her birthday party we missed the day after Dave had surgery. Even she is looking to the Internet for information, though she doesn’t have a computer of her own. Then, when I reluctantly told her that Dave wasn’t home because he was playing golf (yes, two days after chemo), she responded with laughter and, “That’s wonderful! That made my day that even though he feels bad he’s playing golf.”
Indeed. That’s exactly how I feel about it, too. My heart rejoices when he says he wants to try to play a few holes because it means he’s feeling a little better, even if just for an hour or two. I haven’t been forthcoming with this information because I assume that people will think, “If he’s well enough to play golf then why is she making such a big deal about all of this chemo business?” But golf or not, it is a big deal and thanks to Nana for snapping me out of it.
I will assume that if you are tired of reading about cancer, you will not be visiting this blog for a while, and that if you are here reading, you are interested in knowing what is going on with us. I can’t stop writing it, and while we know that life goes on around cancer, it doesn’t stop it from being.
Round 5, we’re in the middle of it. He’s not feeling well yet, but he did manage a round of golf. It’s cathartic for his mind and makes him feel like he’s doing something productive for his body. The goal in the 48 hours after chemo is to flush out the poison with fluids and sweating. He sweats plenty while simply sleeping, but when he feels well enough to get up and move around, he likes to sweat in the sunshine while doing something. He woke up truly hungry today and he went to his office, but only after, “Where’s my Zofran, woman?” Can you see how crazy this is? He feels okay one hour and bad the next, he doesn’t need the anti-nausea meds for half a day some days and but he might need it before he gets out of bed the next. Roller.Coaster. Anyway, we are both back at our respective offices today, reclaiming normal. He has another nine days of medicine to take before this cycle moves into the rest phase and we relax into the fun week.
Though the 4th of July wouldn’t have been our first choice for chemo week, it was nice to have a day off in the middle of it. The kids soaked him up. They usually go four or five days of barely seeing him during chemo week (because he goes to bed so early) and they miss him terribly. Our day off yesterday gave them time to play with him during the hours when he was feeling well, and play they did. Together and apart, they were all over him all morning – Barbies and trains and babies and games, until he cried Uncle and I herded them out to the pool for a while. This morning Luke woke up and immediately told him, “Daddy! Play!” When he had to leave him alone with his trains to get ready for work, Luke came running into the kitchen to tell me, “Mama, Daddy work!” It’s as if even the littlest one recognizes the good of him going back to the office after a few days of feeling bad.
Or wallowing, if you like, in a pit of negativity, worry, and bitterness. It wasn’t the devil this time, at least he wasn’t in control the way he was the last time I got like this. I’m sure he has been poking at me, taking advantage of my weakness, but this time it was all me. I’ve been doing the things I am supposed to do – filling my heart and mind with praise and worship and Bible reading – but I’ve still acted like the unworthy sinner that I am and relished the wallowing instead of overcoming it.
It’s why I haven’t blogged in a while, or written anything at all. I’ve learned that when I get like that, it’s best to stay away from the blog lest the bitterness ooze out in my words and be preserved forever. That’s not what I want, though it’s probably when I should be writing the most.
I’ve also worried that some of you are tired of reading about cancer or just tired of reading what I write at all, so in my mind, I quit writing a thousand times. In my mind, I shut down the blog and my Facebook page. As punishment – though I don’t know who the punishment is directed at except me. When I’m despairing, I withhold information because I assume that no one cares what I have to say or what I’m struggling through. People have their own lives to live, their own struggles to attend to. They don’t need my drama on top of that. I know what it’s like to be filled to the brim, stretched to capacity with struggle, trying not to overflow on the nearest person who makes a well-intentioned but poorly worded comment that I take badly simply because I cannot process anything else. I don’t want to be the commenter and I try to limit my exposure to the comments.
But truthfully, though I came very close, I couldn’t do it. I couldn’t shut down the blog. It’s been my own personal space on the web since 2006 and I couldn’t end it now just because I’m struggling to claw my way out of a pit. And, though I came much closer to deactivating my Facebook page, I couldn’t do that either. It’s where most of you pick up the blog link, and it gives me a comfortable channel of communication with people I want to be in contact with that I would probably never call on the phone, because I’m very bad at calling people.
So I’ve been in this pit, worrying and trying to figure out if I should continue to blog about our journey through cancer and chemo or if enough is enough already, until last night when Dave’s Nana called to check on him. He had his fifth round of chemo on Monday (most of you didn’t know because I didn’t tell). We talked for a few minutes and she gave me the perspective I needed to resolve my wallowing two-fold. First, she told me, “I asked the kids [the ones who live near her] if you had posted anything on the Internet or whatever you do, but they said you hadn’t.” Nana is 90, if you’ll remember – it was her birthday party we missed the day after Dave had surgery. Even she is looking to the Internet for information, though she doesn’t have a computer of her own. Then, when I reluctantly told her that Dave wasn’t home because he was playing golf (yes, two days after chemo), she responded with laughter and, “That’s wonderful! That made my day that even though he feels bad he’s playing golf.”
Indeed. That’s exactly how I feel about it, too. My heart rejoices when he says he wants to try to play a few holes because it means he’s feeling a little better, even if just for an hour or two. I haven’t been forthcoming with this information because I assume that people will think, “If he’s well enough to play golf then why is she making such a big deal about all of this chemo business?” But golf or not, it is a big deal and thanks to Nana for snapping me out of it.
I will assume that if you are tired of reading about cancer, you will not be visiting this blog for a while, and that if you are here reading, you are interested in knowing what is going on with us. I can’t stop writing it, and while we know that life goes on around cancer, it doesn’t stop it from being.
Round 5, we’re in the middle of it. He’s not feeling well yet, but he did manage a round of golf. It’s cathartic for his mind and makes him feel like he’s doing something productive for his body. The goal in the 48 hours after chemo is to flush out the poison with fluids and sweating. He sweats plenty while simply sleeping, but when he feels well enough to get up and move around, he likes to sweat in the sunshine while doing something. He woke up truly hungry today and he went to his office, but only after, “Where’s my Zofran, woman?” Can you see how crazy this is? He feels okay one hour and bad the next, he doesn’t need the anti-nausea meds for half a day some days and but he might need it before he gets out of bed the next. Roller.Coaster. Anyway, we are both back at our respective offices today, reclaiming normal. He has another nine days of medicine to take before this cycle moves into the rest phase and we relax into the fun week.
Though the 4th of July wouldn’t have been our first choice for chemo week, it was nice to have a day off in the middle of it. The kids soaked him up. They usually go four or five days of barely seeing him during chemo week (because he goes to bed so early) and they miss him terribly. Our day off yesterday gave them time to play with him during the hours when he was feeling well, and play they did. Together and apart, they were all over him all morning – Barbies and trains and babies and games, until he cried Uncle and I herded them out to the pool for a while. This morning Luke woke up and immediately told him, “Daddy! Play!” When he had to leave him alone with his trains to get ready for work, Luke came running into the kitchen to tell me, “Mama, Daddy work!” It’s as if even the littlest one recognizes the good of him going back to the office after a few days of feeling bad.
Thursday, June 14, 2012
Round 4, Check.
There's not much to report this time since I found myself able to write during this round of chemo, and thus, less traumatized. In the previous treatment rounds, I've been sort of paralyzed by the whole thing but I guess I've adjusted more than I realized to this episode of our lives.
Once again, he moved straight from week one side effects to week two side effects without an energy crisis in between. I read recently that some cancer patients' experience their bodies adjusting to the low blood counts so they don't feel as exhausted in later rounds of treatement when the blood counts reach their lowest points. We know Dave's bottom out around day 7 and 8, but for the last two rounds he hasn't crashed during those days so I guess his body is compensating.
Here's a little education in layman's terms, if you want it (remembering that I got my medical degree from the University of Google). Lymphoma is a blood cancer, specifically of the lymphocytes - the parts of the white blood cells that make up the immune system. Essentially, some of the normal cells in his lymph system morph into cancer cells (like gremlins changing from cuddly cute things to monsters when they get wet). The chemo drugs he gets every three weeks are designed to wipe out his white blood cells so that the cancer cells that are mixed in with the normal cells will be killed. He also gets a shot with each round (24 hours later) that stimulates his bone marrow to make more white blood cells. That medicine helps his body recover his immune system, but it doesn't take full effect until day 7 or 8 of the cycle - thus, days 7 and 8 are when his white blood count (WBC) is the lowest. Starting day 6 of the cycle, he takes antibiotics for five days to protect his body from bacterial infections. This is also when he's supposed to stay away from crowded places (like the county jail) and sick people. Today is day 10 and his last day of antibiotics, and that means we are well on our way to the rest portion of this round.
Next week, he'll be feeling almost normal again and he gets a bonus week of rest this time. He and his doctor negotiated the next treatment for the first week of July to give his body a little extra time to make white blood cells and to accomodate his work schedule. This means extra fun time for us!
So, for two and a half weeks, we play and then onto the business of round five.
Once again, he moved straight from week one side effects to week two side effects without an energy crisis in between. I read recently that some cancer patients' experience their bodies adjusting to the low blood counts so they don't feel as exhausted in later rounds of treatement when the blood counts reach their lowest points. We know Dave's bottom out around day 7 and 8, but for the last two rounds he hasn't crashed during those days so I guess his body is compensating.
Here's a little education in layman's terms, if you want it (remembering that I got my medical degree from the University of Google). Lymphoma is a blood cancer, specifically of the lymphocytes - the parts of the white blood cells that make up the immune system. Essentially, some of the normal cells in his lymph system morph into cancer cells (like gremlins changing from cuddly cute things to monsters when they get wet). The chemo drugs he gets every three weeks are designed to wipe out his white blood cells so that the cancer cells that are mixed in with the normal cells will be killed. He also gets a shot with each round (24 hours later) that stimulates his bone marrow to make more white blood cells. That medicine helps his body recover his immune system, but it doesn't take full effect until day 7 or 8 of the cycle - thus, days 7 and 8 are when his white blood count (WBC) is the lowest. Starting day 6 of the cycle, he takes antibiotics for five days to protect his body from bacterial infections. This is also when he's supposed to stay away from crowded places (like the county jail) and sick people. Today is day 10 and his last day of antibiotics, and that means we are well on our way to the rest portion of this round.
Next week, he'll be feeling almost normal again and he gets a bonus week of rest this time. He and his doctor negotiated the next treatment for the first week of July to give his body a little extra time to make white blood cells and to accomodate his work schedule. This means extra fun time for us!
So, for two and a half weeks, we play and then onto the business of round five.
Friday, May 25, 2012
Halfway There
Round three of chemo is over, I guess. He has energy and has already developed the week 2 side effects even though he didn't have the second crash first. That messes with my head. I was expecting the crash Monday or Tuesday of this week, even had meals lined up for those days, and it didn't come. So I'm calling round three finished.
This one hit him hard and fast but he recovered more quickly, too. I'm certain that's because he had no choice but to sleep in the two days following the treatment and that's what his body has been needing. I'm hoping he can arrange his schedule so that he has time to sleep like that for the next three rounds.
This round was hard on me. I haven't been about to lose my mind, but I'm feeling less like, "Let's do this thing" and more like "How am I going to make it through three more rounds?" He told me after the first round that he thought it might take all of his willpower to survive six rounds of chemo. I'm thinking it might take all of mine, too, and I'm not the one being poisoned every three weeks. We are living in a bizarre world right now.
I was laying in bed with Ella the last week and she kept asking me when we were going to eat at a certain restaurant. It was taking me forever to figure out which restaurant she was talking about and I asked her when we had been there before. She said, "You know, that day we walked around and passed out fingernail files." And I did know. She was talking about a restaurant we stopped in one day when we were handing out campaign literature for one of the local elections. It was Sunday, February 26, two days before I took Dave to the ER. It was all I could do not to lay in her bed and cry, thinking about how drastically our lives changed two days later. Not for the worse, but never to be the same again. Having a new normal thrust upon you without warning takes some getting used to. I occasionally find myself in situations like this one with Ella where old normal and new normal collide in my mind at the same time and I struggle to process everything that's happened since the end of February. Some days it's hard to believe it's been three months already and some days it's hard to believe it hasn't been three years.
I've come to realize that cancer has a time warp similar to the one that happens at the end of a pregnancy. All at once, time is flying and standing still. And, cancer is a line of demarkation in our lives together. Just like having kids. In the timeline of us, there are periods of time I think of as Before Kids and After Kids, and now I've added Before Cancer. There's no After yet because this isn't over. I'm not sure it will even be over at the end of chemo. I'm thinking there will be other time periods known as During Chemo and After Chemo, but I don't know when After Cancer will happen. Will there be another line of demarkation or will we just ease into it without realizing it until we're well on the other side? Now I'm rambling, but at least it's cathartic.
Anyway, three rounds down and three to go. With my whole body and soul I'm looking forward to this long weekend of playing in backyards with my family, to soaking up the sun and fun and laughter, to restocking my mental facilities in preparation for round four. And Lynyrd Skynyrd's Tuesday's Gone in my ears has mellowed me out just in time for the weekend.
This one hit him hard and fast but he recovered more quickly, too. I'm certain that's because he had no choice but to sleep in the two days following the treatment and that's what his body has been needing. I'm hoping he can arrange his schedule so that he has time to sleep like that for the next three rounds.
This round was hard on me. I haven't been about to lose my mind, but I'm feeling less like, "Let's do this thing" and more like "How am I going to make it through three more rounds?" He told me after the first round that he thought it might take all of his willpower to survive six rounds of chemo. I'm thinking it might take all of mine, too, and I'm not the one being poisoned every three weeks. We are living in a bizarre world right now.
I was laying in bed with Ella the last week and she kept asking me when we were going to eat at a certain restaurant. It was taking me forever to figure out which restaurant she was talking about and I asked her when we had been there before. She said, "You know, that day we walked around and passed out fingernail files." And I did know. She was talking about a restaurant we stopped in one day when we were handing out campaign literature for one of the local elections. It was Sunday, February 26, two days before I took Dave to the ER. It was all I could do not to lay in her bed and cry, thinking about how drastically our lives changed two days later. Not for the worse, but never to be the same again. Having a new normal thrust upon you without warning takes some getting used to. I occasionally find myself in situations like this one with Ella where old normal and new normal collide in my mind at the same time and I struggle to process everything that's happened since the end of February. Some days it's hard to believe it's been three months already and some days it's hard to believe it hasn't been three years.
I've come to realize that cancer has a time warp similar to the one that happens at the end of a pregnancy. All at once, time is flying and standing still. And, cancer is a line of demarkation in our lives together. Just like having kids. In the timeline of us, there are periods of time I think of as Before Kids and After Kids, and now I've added Before Cancer. There's no After yet because this isn't over. I'm not sure it will even be over at the end of chemo. I'm thinking there will be other time periods known as During Chemo and After Chemo, but I don't know when After Cancer will happen. Will there be another line of demarkation or will we just ease into it without realizing it until we're well on the other side? Now I'm rambling, but at least it's cathartic.
Anyway, three rounds down and three to go. With my whole body and soul I'm looking forward to this long weekend of playing in backyards with my family, to soaking up the sun and fun and laughter, to restocking my mental facilities in preparation for round four. And Lynyrd Skynyrd's Tuesday's Gone in my ears has mellowed me out just in time for the weekend.
Tuesday, May 08, 2012
Thinking Back, Living Forward
It’s been just over 2 months since Dave’s surgery. There are still unknowns, but we are in a much better place now. We know that the surgeon got all of the tumors, that the surrounding tissue did not show evidence of cancer. We know that his PET scan showed “no measurable amount” of cancer left in his body after the surgery. We know that his type of lymphoma generally responds well to chemotherapy and that the majority of the time chemo will cure it. We know what the chemo does to his body and how to manage the side effects. We know how long he will feel bad and when he will feel good again after a round of chemo.
We are very optimistic that this is just another episode in our lives to be survived rather than an ending.
I am glad to be in this place, where we know what is going on and we have some reassurance for the future. But occasionally I flash back to the lowest moments immediately following his surgery and I’m consumed with the emotion all over again. Sometimes I’m overcome with the feelings I had while I sat beside him in the dark each night in the hospital, wondering what this meant for us, where we would go from there, if he would be alive the same time next year. I was so scared. For him, because I had no idea what he would have to endure and for us because I didn’t know if we’d still have him.
Sometimes I think back over the sadness of a conversation we had one Friday afternoon, after his first oncology appointment, before we had any real information about his diagnosis and treatment plan. I told him that I truly didn’t believe he was going to die, but that I knew that I would be okay if he did. That I didn’t want to think about my life without him in it because he is my best friend in this world, but that if he came to a point where he was holding on to life for me when he needed to say goodbye, I would be able to let him go. Because I would rather he be in Heaven waiting for me than suffering on earth with me.
He has no intention of dying this year and we are planning for his full recovery, but it’s important for me to capture the low points in words to help me process those feelings that bubble up and to help me remember how far we’ve come in two months.
This was a life event that changed me. While the process is sometimes painful, I’m confident that the results will be worth it. If nothing else, my life was brought into razor sharp focus and my perspective was adjusted. The things that don’t matter are clear and so are the things that do.
God is in the forefront of my mind most of the time now in a way He wasn’t before. I find myself considering my words and actions with the questions, “Does what I’m about to write/say/do reflect God’s glory? Does it make it evident that I’ve been with Jesus?” My humanity still gets the best of me, often, but I am trying to take that breath and consider the testimony I’m living. I’m a work in progress.
My nucleus, the man that God made for me and the little souls He put into my care, they teach me new things every single day and they constantly remind me of the importance of time. They are infinite sources of joy and laughter. They keep me busy living.
My family, those outside of my household – both of my blood and of my heart, has bound itself around us and lifted us up, held us together when I could not. It’s a surprisingly extensive family. I’m awestruck and humbled by it. It’s one of the things that matters a lot.
I was asked recently if I wanted to go back to the fall of last year, before any of this happened, when everything was still normal. My answer was unequivocally, “No.”
I have grown and I have been richly blessed through this trial. I would not undo it. This is our normal now.
We are very optimistic that this is just another episode in our lives to be survived rather than an ending.
I am glad to be in this place, where we know what is going on and we have some reassurance for the future. But occasionally I flash back to the lowest moments immediately following his surgery and I’m consumed with the emotion all over again. Sometimes I’m overcome with the feelings I had while I sat beside him in the dark each night in the hospital, wondering what this meant for us, where we would go from there, if he would be alive the same time next year. I was so scared. For him, because I had no idea what he would have to endure and for us because I didn’t know if we’d still have him.
Sometimes I think back over the sadness of a conversation we had one Friday afternoon, after his first oncology appointment, before we had any real information about his diagnosis and treatment plan. I told him that I truly didn’t believe he was going to die, but that I knew that I would be okay if he did. That I didn’t want to think about my life without him in it because he is my best friend in this world, but that if he came to a point where he was holding on to life for me when he needed to say goodbye, I would be able to let him go. Because I would rather he be in Heaven waiting for me than suffering on earth with me.
He has no intention of dying this year and we are planning for his full recovery, but it’s important for me to capture the low points in words to help me process those feelings that bubble up and to help me remember how far we’ve come in two months.
This was a life event that changed me. While the process is sometimes painful, I’m confident that the results will be worth it. If nothing else, my life was brought into razor sharp focus and my perspective was adjusted. The things that don’t matter are clear and so are the things that do.
God is in the forefront of my mind most of the time now in a way He wasn’t before. I find myself considering my words and actions with the questions, “Does what I’m about to write/say/do reflect God’s glory? Does it make it evident that I’ve been with Jesus?” My humanity still gets the best of me, often, but I am trying to take that breath and consider the testimony I’m living. I’m a work in progress.
My nucleus, the man that God made for me and the little souls He put into my care, they teach me new things every single day and they constantly remind me of the importance of time. They are infinite sources of joy and laughter. They keep me busy living.
My family, those outside of my household – both of my blood and of my heart, has bound itself around us and lifted us up, held us together when I could not. It’s a surprisingly extensive family. I’m awestruck and humbled by it. It’s one of the things that matters a lot.
I was asked recently if I wanted to go back to the fall of last year, before any of this happened, when everything was still normal. My answer was unequivocally, “No.”
I have grown and I have been richly blessed through this trial. I would not undo it. This is our normal now.
Thursday, May 03, 2012
We Survived Round Two
Dave's second chemo treatment was last Monday, and last night, ten days later, he gave me the clue that it was over: "It feels good to feel good again." Also, he went to bed at normal time - that is to say that he fell asleep in the chair, watching TV in the 8:00 hour. That's normal.
I think this round went smoother for both of us, mentally speaking. I didn't lose my mind and I successfully fended off the devil the few times he tried to hijack me (thanks for the prayers and Bible verses to help me handle that bit of business). Luke was pitifully sick for a couple of those days, so between him hanging on me like a baby monkey and his inability to sleep through the fever, I was ripe for losing it. But I didn't. I take absolutely zero credit for that. That was God working as a result of you praying. And when I was able to leave Dave on Thursday and go back to my office, I rejoiced all the way there for the hour of alone time I have during my drive to work. By Thursday of last week, I desperately needed some alone time.
And that night, Grandmother kept both kids so I got to sleep. I was in my bed at 7:58 that night and asleep before 9. I didn't get up again until it was my turn to shower the next morning. It's amazing what a full night of sleep will do for your soul. Friday, Grandma and Pop the Pop cleaned the house for us. Monday, Rebecca brought supper. All those things made Chemo Week easier for us this time.
I've already consulted My Favorite Sister about organizing meals for us for the future rounds, because having food show up at the house already ready to eat is a lifesaver on the days that Dave is out of commission and the howler monkeys are screeching. I didn't realize how much I need that until this week, when it happened twice. Also, some of you who brought food after Dave came home from the hospital? That's still helping us because I was packing some of those meals away in the freezer like a mouse storing up grain for winter.
Dave probably worked too hard the first couple of days after chemo this time, but he had a busy schedule and he was insistent that he keep it. So we did. I just went to work with him so I could drive if he needed me to, and just be there with him. I think that helps. Physically, he says he thinks it affected him about the same as the first treatment, and he followed pretty much the same up and down pattern that I mentioned after the first treatment. That's encouraging because it means we should have about a week and a half of fun days before round three.
Finally, the update I know you've all been waiting for: His eyebrows are still hanging in there.
I think this round went smoother for both of us, mentally speaking. I didn't lose my mind and I successfully fended off the devil the few times he tried to hijack me (thanks for the prayers and Bible verses to help me handle that bit of business). Luke was pitifully sick for a couple of those days, so between him hanging on me like a baby monkey and his inability to sleep through the fever, I was ripe for losing it. But I didn't. I take absolutely zero credit for that. That was God working as a result of you praying. And when I was able to leave Dave on Thursday and go back to my office, I rejoiced all the way there for the hour of alone time I have during my drive to work. By Thursday of last week, I desperately needed some alone time.
And that night, Grandmother kept both kids so I got to sleep. I was in my bed at 7:58 that night and asleep before 9. I didn't get up again until it was my turn to shower the next morning. It's amazing what a full night of sleep will do for your soul. Friday, Grandma and Pop the Pop cleaned the house for us. Monday, Rebecca brought supper. All those things made Chemo Week easier for us this time.
I've already consulted My Favorite Sister about organizing meals for us for the future rounds, because having food show up at the house already ready to eat is a lifesaver on the days that Dave is out of commission and the howler monkeys are screeching. I didn't realize how much I need that until this week, when it happened twice. Also, some of you who brought food after Dave came home from the hospital? That's still helping us because I was packing some of those meals away in the freezer like a mouse storing up grain for winter.
Dave probably worked too hard the first couple of days after chemo this time, but he had a busy schedule and he was insistent that he keep it. So we did. I just went to work with him so I could drive if he needed me to, and just be there with him. I think that helps. Physically, he says he thinks it affected him about the same as the first treatment, and he followed pretty much the same up and down pattern that I mentioned after the first treatment. That's encouraging because it means we should have about a week and a half of fun days before round three.
Finally, the update I know you've all been waiting for: His eyebrows are still hanging in there.
Monday, April 16, 2012
Busy Living
We had a fantastic weekend. The kind that makes you miss the kids on Monday and puts you in a good mood to start the week.
It started at the ridiculously early hour of 5:30 a.m. on Saturday for Ready.Set.Cure. - which is a 5k fundraiser for the Leukemia and Lymphoma Society. My sister decided while Dave was in the hospital that she and our friend, Kendall, were going to run it in his honor. I jokingly told her she should have t-shirts made that say "I hate cancer." Well, a few weeks later, she sent me a t-shirt design and I told her I wanted one but that I wanted it to say "Lymphoma Sucks". She redesigned them. And she made a special one for him.
Lymphoma Sucks has become my life theme right now. I also found a website that offers resources and support for young adult cancer patients and survivors called Stupid Cancer. It's my kinda place, where they focus on getting busy living and giving cancer the bird, so I ordered some bracelets for us. They give Ella an approved reason to use the word "stupid" and she's taking full advantage - as in last night at the supper table when she asked me, "Mommy, when will Daddy's stupid cancer be gone?"
Dave decided he would try to walk the 5k, so we did, and he pushed about 90 lbs. of stroller and kids half the way. And we finished in less than an hour. It was an amazing time! Thank you, Rebecca, for organizing it for us!
After that, there was back porch swimming and back yard playing. Luke was naked, of course, and we had a little potty training milestone. He heard me tell Ella not to pee where we play, to go to the edge of the yard instead (because we don't have indoor plumbing, you know). A few minutes later, he left the little pool where he was playing and went to the edge of the patio to pee. Do you know what that means? Two very big things: 1. He knew he needed to go before it happened and 2. He had enough control to move to another place to do it. He's been waking up dry most mornings, so it might be time to get serious with this potty business. Yay! Diapers, your days are numbered.
At one point during Luke's celebration of nakedness, after Dave suggested that maybe he needs a pair of swim trunks if he's going to be playing all over the yard instead of swimming, the little dude army-crawled under the car. Naked. Chasing the cat. I had to tell him to crawl out the other side because I wasn't about to drag his little naked self out from under there by the ankle. Swim trunks indeed, but I think Dave will have to be in charge of putting them on and off, on and off, because I know that's what's going to happen.
Then we played cars and chased the cat (she can't get a break) and cooked on the grill. The kids didn't go to bed as early as we planned because we were having too much fun, but that's okay.
Sunday, we went to church and it was my turn to work in the nursery. I got a little caught up in the play and forgot where we were until the shrieking reached playground level when I suddenly remembered that they could probably hear us in church. Oops. After church we had lunch and a big fat nap, then Dave lopped down the camellias and put Luke to work dragging sticks to the street. He was very proud of his job.
In the middle of camellia cutting, Dave decided he needed a chainsaw, so we rode down the street to The Shed to borrow one. That turned into a few hours of visiting and cousin playing. Luckily we had leftovers so we didn't have to rush home to cook. Then baths and books and bed and it was over already!
Getting busy living, like inappropriate laughter, is much more fun than losing my flipping mind.
It started at the ridiculously early hour of 5:30 a.m. on Saturday for Ready.Set.Cure. - which is a 5k fundraiser for the Leukemia and Lymphoma Society. My sister decided while Dave was in the hospital that she and our friend, Kendall, were going to run it in his honor. I jokingly told her she should have t-shirts made that say "I hate cancer." Well, a few weeks later, she sent me a t-shirt design and I told her I wanted one but that I wanted it to say "Lymphoma Sucks". She redesigned them. And she made a special one for him.
Dave decided he would try to walk the 5k, so we did, and he pushed about 90 lbs. of stroller and kids half the way. And we finished in less than an hour. It was an amazing time! Thank you, Rebecca, for organizing it for us!
 |
| These people know lymphoma sucks but getting busy living doesn't. |
At one point during Luke's celebration of nakedness, after Dave suggested that maybe he needs a pair of swim trunks if he's going to be playing all over the yard instead of swimming, the little dude army-crawled under the car. Naked. Chasing the cat. I had to tell him to crawl out the other side because I wasn't about to drag his little naked self out from under there by the ankle. Swim trunks indeed, but I think Dave will have to be in charge of putting them on and off, on and off, because I know that's what's going to happen.
Then we played cars and chased the cat (she can't get a break) and cooked on the grill. The kids didn't go to bed as early as we planned because we were having too much fun, but that's okay.
Sunday, we went to church and it was my turn to work in the nursery. I got a little caught up in the play and forgot where we were until the shrieking reached playground level when I suddenly remembered that they could probably hear us in church. Oops. After church we had lunch and a big fat nap, then Dave lopped down the camellias and put Luke to work dragging sticks to the street. He was very proud of his job.
 |
| Even little ones have to earn their keep. |
Getting busy living, like inappropriate laughter, is much more fun than losing my flipping mind.
Wednesday, April 11, 2012
The Chemo Coaster
The first chemo cycle is nearly over. That means he got the chemo, felt like crap from the drugs, felt better, then felt like crap again from the low blood counts, and now feels better again. I've drawn a highly scientific graph to give you a visual.
From now until the next round, he should feel pretty good (they say and we hope). He'll be getting chemo every three weeks. The first two weeks of the cycle are when the drugs and his body work the hardest, the third is for rest and recovery to get him ready for the next round.
We've been up and down, up and down. It's like chemo is playing a head game, and that's the hardest part for me. I'm okay with down. I'm great with up. I suck at rapidly switching between the two - but then, we know I struggle with transitions. Just like a toddler, I need lots of warning before a change. Hopefully, now that I know generally what to expect, I'll be better prepared to ride the Chemo Coaster with him. I know that my mental state greatly affects his ability to cope, so it's important that I keep myself together.
And, thanks to last week's insanity, now I know that when I start to come apart at the seams, I need to grab the loppers and unleash my nervous energy on the overgrowth in our yard. Luckily, we don't love yard work, so there's plenty that needs lopping. Next up? The Camellias. I don't think they are supposed to be shade trees.
I'll leave you with my favorite thing I've heard today (and there have been some good ones since Luke learned how to turn on the extra phone and interrupt a conversation).
"I feel great!" - Dave, enthusiastically, during our lunch time check in.
It was good for my soul.
 |
| Highly Scientific Visual Representation of a Chemo Cycle |
We've been up and down, up and down. It's like chemo is playing a head game, and that's the hardest part for me. I'm okay with down. I'm great with up. I suck at rapidly switching between the two - but then, we know I struggle with transitions. Just like a toddler, I need lots of warning before a change. Hopefully, now that I know generally what to expect, I'll be better prepared to ride the Chemo Coaster with him. I know that my mental state greatly affects his ability to cope, so it's important that I keep myself together.
And, thanks to last week's insanity, now I know that when I start to come apart at the seams, I need to grab the loppers and unleash my nervous energy on the overgrowth in our yard. Luckily, we don't love yard work, so there's plenty that needs lopping. Next up? The Camellias. I don't think they are supposed to be shade trees.
I'll leave you with my favorite thing I've heard today (and there have been some good ones since Luke learned how to turn on the extra phone and interrupt a conversation).
"I feel great!" - Dave, enthusiastically, during our lunch time check in.
It was good for my soul.
Wednesday, March 28, 2012
The Sick One Speaks
Dave wrote this for us and he said it all so much better than I would have. Enjoy!
I have had many opportunities to count my blessings during the past few weeks. Strangely, I did not have to look very hard to find an overwhelming number of blessings, even while confined to a hospital, connected to various tubes and devices, recovering from surgery digesting the news that I had cancer and violently hiccupping.
I thanked God over and over and over again for the blessings as they came to mind. Among them were the many friends, relatives, church members and even a few people I did not know who visited me in the hospital. There was also my amazing wife and a new appreciation I gained for her love and devotion to me during the whole experience. I made a vow to stay with her through sickness and health eight years ago. She made the same vow to me. I learned what that meant during my hospital stay. She. Would. Not. Leave. Me. Thank God. I am extremely blessed to have such a dedicated partner and I am better for having learned of her dedication that I so very often take for granted.
Perhaps the thing I am most thankful for is that I have this cancer and not any other member of my household. I cannot imagine myself in Amanda’s role as caretaker and supporter. I had the easy part of all of this. I was told I have a disease, cut open, stitched back together and told to get lots of rest. Amanda was the one left to sit in hospital waiting rooms, call the family together, talk to the doctors, fill me in on things I missed while under the influence of heavy narcotics and sit by my side at the hospital for days on end all while worrying about our two children and wondering what the future would bring for our family. Once at home, Amanda shouldered the large majority of the household chores for several days, kept the kids fed, bathed and entertained and made sure I was properly encouraged, medicated and attended to while I laid around the house, watched television and slept. She has had the hard part of all of this and I am extremely blessed that I am the one who is “sick” because I don’t think I could have handled things if it was Amanda.
But I would have. Somehow and some way, I could have dealt with Amanda being sick. I would in no way have been the champion that she has been to me, but I would have muddled through, with much more help from family and friends than she required, and survived.
The thought I cannot imagine is that of Ella or Luke being diagnosed with cancer and forced to undergo medical treatment and hospitalization. This is the greatest blessing I have encountered through my experiences of the past four weeks. I thank God multiple times each day that I am the one with the illness and not my children. I can deal with pain, surgery, giving blood and bone marrow, taking treatments and whatever else may come my way. Let me hurt every day the rest of my life if I don’t have to see pain, hurt and fear on the faces of my two precious babies. Thank you God that they are well. I don’t know how I would make it if they were not.
But many parents do. There are many who have to experience their children being diagnosed with cancer and watch them endure the pains and fears associated with the treatments and the disease itself each and every day. And they are all much stronger than I ever want to become.
Last year we participated in a Trike-a-Thon through Ella’s school to raise money for St. Jude Children's Research Hospital. We enjoyed the experience and Ella had a great time on her tricycle. We were amazed at the generosity of our family and friends in donating to this cause. Amanda asked today if we should participate in raising money for the event again this year, considering all that we have going on in our lives right now and all of the assistance we have already received during the past month. We absolutely should and will. We have the tremendous blessing of not having to know what the families serviced by St. Jude live through on a daily basis. The least we can do is contribute to the cause. Thank you God that my kids are healthy and well. I don’t know how I would make it if they were not.
So, as we did last year, we have again set up a fundraising page for Ella’s Trike-A-Thon and would appreciate any contributions you would like to make: EGR's Trike-a-thon page. Thank you for the prayers and support you have given me during the past days. I am going to be fine. I am blessed beyond all imagination and I feel that we should do what we can to pass it along.
As always, please only give as your heart moves. If this doesn't interest you, please do not feel obligated to donate. The Trike-a-thon takes place on April 13th, so we have until then to see how much money we can raise. Thanks in advance!
I have had many opportunities to count my blessings during the past few weeks. Strangely, I did not have to look very hard to find an overwhelming number of blessings, even while confined to a hospital, connected to various tubes and devices, recovering from surgery digesting the news that I had cancer and violently hiccupping.
I thanked God over and over and over again for the blessings as they came to mind. Among them were the many friends, relatives, church members and even a few people I did not know who visited me in the hospital. There was also my amazing wife and a new appreciation I gained for her love and devotion to me during the whole experience. I made a vow to stay with her through sickness and health eight years ago. She made the same vow to me. I learned what that meant during my hospital stay. She. Would. Not. Leave. Me. Thank God. I am extremely blessed to have such a dedicated partner and I am better for having learned of her dedication that I so very often take for granted.
Perhaps the thing I am most thankful for is that I have this cancer and not any other member of my household. I cannot imagine myself in Amanda’s role as caretaker and supporter. I had the easy part of all of this. I was told I have a disease, cut open, stitched back together and told to get lots of rest. Amanda was the one left to sit in hospital waiting rooms, call the family together, talk to the doctors, fill me in on things I missed while under the influence of heavy narcotics and sit by my side at the hospital for days on end all while worrying about our two children and wondering what the future would bring for our family. Once at home, Amanda shouldered the large majority of the household chores for several days, kept the kids fed, bathed and entertained and made sure I was properly encouraged, medicated and attended to while I laid around the house, watched television and slept. She has had the hard part of all of this and I am extremely blessed that I am the one who is “sick” because I don’t think I could have handled things if it was Amanda.
But I would have. Somehow and some way, I could have dealt with Amanda being sick. I would in no way have been the champion that she has been to me, but I would have muddled through, with much more help from family and friends than she required, and survived.
The thought I cannot imagine is that of Ella or Luke being diagnosed with cancer and forced to undergo medical treatment and hospitalization. This is the greatest blessing I have encountered through my experiences of the past four weeks. I thank God multiple times each day that I am the one with the illness and not my children. I can deal with pain, surgery, giving blood and bone marrow, taking treatments and whatever else may come my way. Let me hurt every day the rest of my life if I don’t have to see pain, hurt and fear on the faces of my two precious babies. Thank you God that they are well. I don’t know how I would make it if they were not.
But many parents do. There are many who have to experience their children being diagnosed with cancer and watch them endure the pains and fears associated with the treatments and the disease itself each and every day. And they are all much stronger than I ever want to become.
Last year we participated in a Trike-a-Thon through Ella’s school to raise money for St. Jude Children's Research Hospital. We enjoyed the experience and Ella had a great time on her tricycle. We were amazed at the generosity of our family and friends in donating to this cause. Amanda asked today if we should participate in raising money for the event again this year, considering all that we have going on in our lives right now and all of the assistance we have already received during the past month. We absolutely should and will. We have the tremendous blessing of not having to know what the families serviced by St. Jude live through on a daily basis. The least we can do is contribute to the cause. Thank you God that my kids are healthy and well. I don’t know how I would make it if they were not.
So, as we did last year, we have again set up a fundraising page for Ella’s Trike-A-Thon and would appreciate any contributions you would like to make: EGR's Trike-a-thon page. Thank you for the prayers and support you have given me during the past days. I am going to be fine. I am blessed beyond all imagination and I feel that we should do what we can to pass it along.
As always, please only give as your heart moves. If this doesn't interest you, please do not feel obligated to donate. The Trike-a-thon takes place on April 13th, so we have until then to see how much money we can raise. Thanks in advance!
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