I have a list, and I’m pretty sure that everyone else probably has the same list. I call it my “worst experience of my life” list. The problem is that I keep adding to it. And of course, I now have a new experience to add to this list that for some reason, just keeps growing. Let me tell you about it.
Tuesday morning, I got up looking forward to a good day. Monday night, I had taken my last dose of oral chemo medication for this round of therapy. Typically, after this, I can start looking forward to a week or so of feeling better before I start the next round of chemotherapy. The day began well enough. I went to the hospital to have my blood drawn as I am supposed to do twice a week after chemo. I returned home, relaxed for a few minutes as Patti got ready to go over to our daughter’s house to watch our two grandkids. We try to help out when we can since Mariah (our daughter) works two days a week as an MA in the family practice office where I have worked for the past 6 years.
Anyway, Patti left a little after 8:00 a.m. and I was here alone (Patti always worries about leaving me alone here asking me if I am sure I will be alright). I checked a few e-mail messages and answered a few then went into the kitchen to have a bowl of cereal. I ate well, watched a little TV news, a couple of minutes of “The Price is Right” and then called over to the hospital to check on the blood work results. At about 10 minutes after nine, I began to feel a little chilled. I checked the thermostat - the temperature was 72 degrees. Within minutes, I was shaking all over and didn’t feel very well. I decided to crawl back into bed to get warm for a while.
Shortly, I began to experience the most violent and severe shaking I had ever experienced in my entire life. I don’t think in all my years of medical practice that I have ever seen anyone shake as much as I was except maybe in a grand-mal seizure. This shaking went on forever. I finally called Patti and told her I needed help. I ached all over as if someone had beaten me with a ball bat and I was still shaking so uncontrollably that I just couldn’t stand it. Patti arrived just before 10:00 a.m. and at just about that same time, everything started to settle down.
Patti swears that she will never leave me alone again. She says that I looked horrible. She called the oncology nurse at the Huntsman Hospital in Salt Lake to report what was going on. They advised us to go to the ER here in our area to get checked.
It took every ounce of strength to drag myself out of bed and get to the car. I had been shaking for nearly an hour. We went to the ER at Timpanogos Regional Hospital in Orem, Utah, the ER where I had moonlighted as a PA for nearly 4 years. I know most of the docs there and many of the nurses and this is where I go for my blood draws because of my central line. They can draw blood right out of my line without having to be poked in the arm twice a week.
So, ultimately what happened is that I had a fever of 102.5 degrees. Blood cultures were taken (one sample from my central line and another from my arm) and I was admitted to this hospital because when the ER doc called the cancer hospital, they had no beds. I was able to request a very good internal medicine doc that I have worked with and known for a number of years as my admitting physician since I haven’t had a primary care provider forever. There are advantages to working in the medical field. The hospitalist that was on call for that day isn’t one of my favorite people – I won’t go into details about that, but I was thrilled that the doc I asked for was willing to admit me.
I was placed on IV antibiotics (Imipenem) and placed in an isolation room on the 4th floor of the hospital. I ran a fever for another 24 hours but felt much better on Tylenol. My initial blood pressure in the ER was 87/59 so they gave me fluids as well.
Ultimately, the blood culture drawn from my central line grew out bacteria known as streptococcus viridans. This was interesting because the blood culture drawn from my arm showed no sign of bacterial growth so the infection was within my central line. It has been in place since February. The next task was to get rid of the central line.
The concerns for my doc were the fact that I had rheumatic fever when I was 19 and ended up in a hospital in El Salvador for two weeks for treatment and the fact that my mother had bacterial endocarditis (an infection within the heart) that ultimately destroyed her aortic valve and resulted in her having two valve replacement surgeries in the early 1960s when that kind of stuff was experimental. This particular strain of bacteria has the potential to cause bacterial endocarditis. Great. Just what I need at this point in my life.
A wonderful (patient, kind, conversant, jovial, etc.) general surgeon was called in to remove my central line. She worked on it for about an hour and could not get it to release and come out. Try as she might, it was just stuck somewhere. I could feel tugging clear up in my neck as she worked on it. You see, the central line is a plastic tube that enters my chest at about heart level just to the right of my breast bone, tunnels up through the skin, over the top of my collar bone and then enters my jugular vein and into the top chamber of my heart. This is the way I receive fluids and drugs for my chemotherapy.
Finally, the surgeon decided to call one of the vascular surgeons in town. She explained the situation to him and he showed up in about twenty minutes. After about 30 minutes of him gathering supplies and getting his gloves on, putting on sterile drapes and so forth, he took one look at the central line, said, “Oh, I see the problem.” I heard a snip and felt nothing. He pronounced that he was done and I thought he was pulling my leg. He reassured me that he was indeed done and that was that. He put on a bandage, recommended that I not cough, sneeze or lay flat for 24 hours and let him know if I needed an new line put in because he’d be happy to do it in about a week if requested.
As a result of having my central line out, I had an IV started in my right hand to allow for infusion of the IV antibiotics and fluids. I had an echocardiogram of my heart Friday morning – results still pending.
I am feeling much better. In fact, I feel better now than I have for about a month which makes me wonder if this infection wasn’t smoldering for some time.
I am already scheduled for placement of a new central line on the 4th of November at the Huntsman Hospital. I will also be getting a new chest CT that day to see if the new chemo drugs are having any effect on the cancer. I’ll also have an MRI of the primary tumor site to see if there is any discernable regrowth at the excision site.
The worst part of this - that I am adding to my “list” - is the violent and uncontrollable shaking that started on Tuesday morning. I have never before experienced anything like that and I hope to never do so again. I hope my list is completed. I would be just fine with that.
Many, many thanks to everyone that helped! The ER staff, the hospital staff, my internal medicine doc, the general surgeon and the vascular surgeon, family and friends who called. I am so thankful for their kindness and genuine care. I am so blessed.
Jim
Saturday, October 25, 2008
Friday, October 17, 2008
The Latest Round
Once again, good morning to everyone. I so appreciate the kindness of everyone that checks this blog. Your comments and well wishes are so welcome. We so appreciate the visits, calls, food baskets, cards, singing on the porch and every act of kindness. We are truly blessed by good neighbors, friends and family. Thank you.
I just completed another round of chemo IV therapy on Wednesday and continue to take the oral drugs through next Tuesday. It seems to be going a little better this time. I prepared in advance for the digestive issues and so far, I seem to be doing better without all the upset stomach and bowel issues. I can't say for sure how it will go until I finish taking all the oral drugs. That remains to be seen.
I certainly appreciate being able to come home from the hospital after the IV infusions. The previous chemo was so much more bothersome and staying in the hospital for 5 days each time was not my choice for spending time. It is much better to be in my own bed with my sweetheart every night.
The routine now goes like this. We leave here early on Monday morning and arrive at the Huntsman Cance
r Hospital Infusion Center a little after 8:00 a.m. After checking in, the nursing staff draws blood to run some labs to be sure that I can tolerate the planned chemotherapy. The easy part about that is that I still have a central line in my chest that was placed there in February. They take the blood out from there and put the chemo drugs in there too. No needles in the arm.
Fortunately, I have never had to have treatments put off yet, but the other day, a young lady next to me was sent home for a few days so that her platelets could recover. How disappointing that must have been. I can only imagine.
Once my blood has been cleared, the nurses (all of whom have been absolutely wonderful) have to pre-hydrate me with fluids and pre-medicate me with steroids and anti-nausea drugs. Following that, I get the first bag of chemo (Doxil) which takes an hour. That is followed by the second chemo drug (Cisplatin) that takes another hour to run in. Finally, both of those are followed by more hydration fluids which have to run in over another two hours. That is the plan on Mondays. Tuesday and Wednesday aren't so bad because I only get the se
cond IV drug on those days so the treatment is an hour shorter on those days.
My poor sweetheart really gets tired of the sitting (so do I), but she is right there by my side for it all. What a trooper! At least I can lie back and snooze some. Do you like my "hair hat?" My good friend from Texas brought that to me. I get a lot of great comments on it.
On Monday, after the chemo was completed, we took a little walk over to my Urology Clinic at the University Hospital to visit the staff I work with there and to give them an update on the treatments, etc. The two hospitals (Huntsman and the Univ. of Utah Medical Center) are connected by tunnels and elevators, so it is a pleasant stroll to get there. It is always so good to see my colleagues there.
It was fun to discover that the powers that be finally got my na
me on the clinic sign. I had wondered when they were going to do that. I worked there for 7 months with out it. Now that I've been on sick leave for 8 months, there is my name! Imagine.
I was able to access the images of my last chest x-ray and chest CT scan. I'll post a couple of those images here for you to see.
Essentially, what you will see is one CT image with a big circle around a lesion in the front of my chest. This is a lesion that went from about 5 millimeters in size to about 19 mm in a matter of a few weeks while I was on the previous chemotherapy. The second CT image shows a new lesion in the left lung field that wasn't visible previously. Those two items alone were enough for the oncologist to switch treatment to this new program. The chest x-ray is much harder to see, but I believe that if you click on it, it will enlarge and you can see some faint circles or blotches throughout the lung fields. Well, these are the cancer lesions I am now fighting to get rid of. In the CT images, basically most everything that is white and round is a cancer lesion as well.
This is all so fascinating to me medically but challenging to us personally. I have to find some balance in all of this.
Jim
I just completed another round of chemo IV therapy on Wednesday and continue to take the oral drugs through next Tuesday. It seems to be going a little better this time. I prepared in advance for the digestive issues and so far, I seem to be doing better without all the upset stomach and bowel issues. I can't say for sure how it will go until I finish taking all the oral drugs. That remains to be seen.
I certainly appreciate being able to come home from the hospital after the IV infusions. The previous chemo was so much more bothersome and staying in the hospital for 5 days each time was not my choice for spending time. It is much better to be in my own bed with my sweetheart every night.
The routine now goes like this. We leave here early on Monday morning and arrive at the Huntsman Cance
r Hospital Infusion Center a little after 8:00 a.m. After checking in, the nursing staff draws blood to run some labs to be sure that I can tolerate the planned chemotherapy. The easy part about that is that I still have a central line in my chest that was placed there in February. They take the blood out from there and put the chemo drugs in there too. No needles in the arm.Fortunately, I have never had to have treatments put off yet, but the other day, a young lady next to me was sent home for a few days so that her platelets could recover. How disappointing that must have been. I can only imagine.
Once my blood has been cleared, the nurses (all of whom have been absolutely wonderful) have to pre-hydrate me with fluids and pre-medicate me with steroids and anti-nausea drugs. Following that, I get the first bag of chemo (Doxil) which takes an hour. That is followed by the second chemo drug (Cisplatin) that takes another hour to run in. Finally, both of those are followed by more hydration fluids which have to run in over another two hours. That is the plan on Mondays. Tuesday and Wednesday aren't so bad because I only get the se
cond IV drug on those days so the treatment is an hour shorter on those days.My poor sweetheart really gets tired of the sitting (so do I), but she is right there by my side for it all. What a trooper! At least I can lie back and snooze some. Do you like my "hair hat?" My good friend from Texas brought that to me. I get a lot of great comments on it.
On Monday, after the chemo was completed, we took a little walk over to my Urology Clinic at the University Hospital to visit the staff I work with there and to give them an update on the treatments, etc. The two hospitals (Huntsman and the Univ. of Utah Medical Center) are connected by tunnels and elevators, so it is a pleasant stroll to get there. It is always so good to see my colleagues there.
It was fun to discover that the powers that be finally got my na
me on the clinic sign. I had wondered when they were going to do that. I worked there for 7 months with out it. Now that I've been on sick leave for 8 months, there is my name! Imagine.I was able to access the images of my last chest x-ray and chest CT scan. I'll post a couple of those images here for you to see.
Essentially, what you will see is one CT image with a big circle around a lesion in the front of my chest. This is a lesion that went from about 5 millimeters in size to about 19 mm in a matter of a few weeks while I was on the previous chemotherapy. The second CT image shows a new lesion in the left lung field that wasn't visible previously. Those two items alone were enough for the oncologist to switch treatment to this new program. The chest x-ray is much harder to see, but I believe that if you click on it, it will enlarge and you can see some faint circles or blotches throughout the lung fields. Well, these are the cancer lesions I am now fighting to get rid of. In the CT images, basically most everything that is white and round is a cancer lesion as well.
This is all so fascinating to me medically but challenging to us personally. I have to find some balance in all of this.
Jim
Monday, October 6, 2008
Faith, Hope, Patience
Two weeks ago today, I started the new treatment program. Although it hasn 't been anything like the inpatient treatments, it continues to pose it's own challenges.
The inpatient treatments as I have explained previously were quite distressing in the psychological aspects. This fortunately is not the case with this new program. I am most grateful. Especially since I go back a week from today and start it all over again.
Primarily, I have been dealing with a poor appetite and fatigue again. I had some difficulty sleeping a few nights, but that was fleeting and for the most part, I am sleeping well again.
I do have to deal with constant chemical taste in my mouth. This is different from the "rusty nail" taste I had with the previous treatments. Instead, I always taste some kind of unpleasant chemical that I am unable to describe. When I try to eat, food for the most part tastes pretty good. Afterward however, I am left with this taste and a sour stomach.
My bowels haven't reacted very well either this time. I feel a little bloated all the time and feel a constant need to move my bowels. For a while - the first few days - I was quite constipated, but that has resolved and now leaves me with frequent trips to the bathroom to only pass small amounts of stool and lots of gas every time. It's better than being constipated but the repeated efforts to try to go are getting old.
Generally, I feel fairly well, just profoundly tired. I walked out to the mailbox the other day and by the time I turned around to come back to the house, Patti had to help me because I became all shaky and tired. I have improved though and felt well enough to go to Home Depot with my little brother this past Saturday to get some stuff. While I was standing there, not doing anything, just looking at stuff on the shelf, I got hot, sweaty and all shaky. That lasted about 2 - 3 minutes and then resolved. It was my first trip out of the house in a long time other than to go to the hospital for blood work which I do twice a week. It was good to get out and do something, but it took a toll on me. I had to rest when I got home.
This is still all so foreign to me. I used to get up at 5:00 a.m. everyday and be busy all day and all evening. I'd get to bed about 11:00 p.m. and then start the same thing all over again. Now I feel lucky to do the few things I do without collapsing or having to use a walker.
Hopefully, the end is in sight. Our hope is that this new treatment program combined with all the wonderful prayers and faith of our friends and family will soon bring the response we are looking for. We put our faith and trust in God and in our Savior. After all, His love is paramount and all encompassing.
I do not stress over this. I do not spend any time wondering "why me?" Actually, I have never asked that questions. I figure after all the suffering and pain I have seen in my days as a paramedic/firefighter and as a PA, it's just my turn. I take it one day at a time and feel so blessed by so many people. I just want it to be over so I can go back to taking care of my family and my patients.
The wonderful phone calls and e-mails, and cards, and prayers and faith and everything are overwhelming to me. A wonderful friend and neighbor brought by a gift just this morning - a framed quotation that says, "God didn't promise days without pain, laughter without sorrow, nor sun without rain . . . but he did promise strength for the day, comfort for the tears, and light for the way." How wonderful. I am honored to be remembered and so blessed by so many.
Jim
The inpatient treatments as I have explained previously were quite distressing in the psychological aspects. This fortunately is not the case with this new program. I am most grateful. Especially since I go back a week from today and start it all over again.
Primarily, I have been dealing with a poor appetite and fatigue again. I had some difficulty sleeping a few nights, but that was fleeting and for the most part, I am sleeping well again.
I do have to deal with constant chemical taste in my mouth. This is different from the "rusty nail" taste I had with the previous treatments. Instead, I always taste some kind of unpleasant chemical that I am unable to describe. When I try to eat, food for the most part tastes pretty good. Afterward however, I am left with this taste and a sour stomach.
My bowels haven't reacted very well either this time. I feel a little bloated all the time and feel a constant need to move my bowels. For a while - the first few days - I was quite constipated, but that has resolved and now leaves me with frequent trips to the bathroom to only pass small amounts of stool and lots of gas every time. It's better than being constipated but the repeated efforts to try to go are getting old.
Generally, I feel fairly well, just profoundly tired. I walked out to the mailbox the other day and by the time I turned around to come back to the house, Patti had to help me because I became all shaky and tired. I have improved though and felt well enough to go to Home Depot with my little brother this past Saturday to get some stuff. While I was standing there, not doing anything, just looking at stuff on the shelf, I got hot, sweaty and all shaky. That lasted about 2 - 3 minutes and then resolved. It was my first trip out of the house in a long time other than to go to the hospital for blood work which I do twice a week. It was good to get out and do something, but it took a toll on me. I had to rest when I got home.
This is still all so foreign to me. I used to get up at 5:00 a.m. everyday and be busy all day and all evening. I'd get to bed about 11:00 p.m. and then start the same thing all over again. Now I feel lucky to do the few things I do without collapsing or having to use a walker.
Hopefully, the end is in sight. Our hope is that this new treatment program combined with all the wonderful prayers and faith of our friends and family will soon bring the response we are looking for. We put our faith and trust in God and in our Savior. After all, His love is paramount and all encompassing.
I do not stress over this. I do not spend any time wondering "why me?" Actually, I have never asked that questions. I figure after all the suffering and pain I have seen in my days as a paramedic/firefighter and as a PA, it's just my turn. I take it one day at a time and feel so blessed by so many people. I just want it to be over so I can go back to taking care of my family and my patients.
The wonderful phone calls and e-mails, and cards, and prayers and faith and everything are overwhelming to me. A wonderful friend and neighbor brought by a gift just this morning - a framed quotation that says, "God didn't promise days without pain, laughter without sorrow, nor sun without rain . . . but he did promise strength for the day, comfort for the tears, and light for the way." How wonderful. I am honored to be remembered and so blessed by so many.
Jim
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