The Good
I got my first smile from Jasper yesterday . . . followed by many, many more. He has grown so much in the last month and it has been a blessing that he and his parents (who have now become nameless as all parents of newborns do) could come this weekend. It certainly put a smile on Jimmie's face to be the first to hold Jasper when they arrived Friday night. And I was thrilled to get so many big grins from our youngest grandson. It doesn't get much better than that. I also laughed that Jasper enjoyed surveying the room and bestowed fleeting smiles on a box of envelopes and a large copper picture of 2 elephants from Zambia. But while the wall of masks Jimmie has collected from around the world drew his attention repeatedly he remained deadly serious while staring at them. I agree, Jasper. Some of those faces look very strange.
The Bad
Jimmie's white blood cell count had gone up enough in Friday's lab work that the doctor approved the chemo shot for Friday night. That should have been in the Good list, but taking the shot shortly after Jasper arrived made Jimmie very sick again, which was certainly not how he wanted to spend the weekend.
The Scary
Jimmie suddenly coughed up some bright red blood about midnight Saturday night. A few seconds later he coughed up some more, and then more again. Over the course of the next 15 minutes the coughing spread out to about every 2 minutes, but the amount of blood coughed was increasing. So I put in an emergency call to the doctor's office. Fortunately, Jimmie's oncologist was the one on-call this weekend. Unfortunately, he did not hear his pager with the first buzz. I called again an hour later and he called me immediately, very apologetic that the first page did not wake him. By then it had been about 15 minutes since Jimmie had coughed any blood so we were both hoping this ordeal was over. But the doctor gave me some instructions that I expected (like, Stop the blood thinner!) and some I didn't (like, if Jimmie gets worse and needs to go to the ER call an ambulance rather than driving him yourself.) He called back a couple of times during the night just to check on Jimmie. Thankfully, I could report that Jimmie was resting quietly with no further blood loss.
- Linda
Sunday, July 29, 2012
Friday, July 27, 2012
Extremes
The heat has been extreme this week, but Cole managed to stay cool while playing outside at the Mall of Georgia on Tuesday.
The fountain was a popular spot and Cole was in no hurry to leave. I think it safe to say that he had an absolute blast playing in the water.
Jimmie's fatigue has also been extreme this week but without an easy remedy. His white cell blood count was so low on Monday that the doctor immediately cancelled the shots for Monday & Wednesday nights. It is strange but each chemo has done something to Jimmie's blood, but a different something. The first was known to hit the red blood cells. The second did that as well at times but was more prone to drop the platelet counts. Now this one zinged the white blood cells. Yet the doctor was startled that it happened so quickly, after only 2 doses. He thought perhaps he started the medicine too soon after stopping the last chemo. Tomorrow we go for labs again to see if he can start back on the shots.
Today Jimmie had a 9:30 MRI appointment that was supposed to take about 40 minutes to do, which worked great because he had a second appointment in the same building for another test at 11:00. One hour and 15 minutes after they took Jimmie back to the MRI machine I finally asked at the desk if there was a problem. That's when I learned that they had taken Jimmie to the hospital for an X-ray first. I must have looked as startled as I felt because the receptionist assured me that the MRI was almost done, just another 5 minutes or so. So, we could just make the other appointment. At 11:00 the receptionist checked again, then notified the doctor upstairs we would be about 10 - 15 minutes late. 45 minutes after that Jimmie finally emerged looking even more exhausted than when he went in. But we still had to head for the elevator and test #2.
By then Cole's fountain was sounding pretty good to me. They need to have one of those for adults.
- Linda
Sunday, July 22, 2012
Weekend Tidbits
Friday night was shot night again. Filling the syringe was only slightly less daunting although mixing the medicine was easier and the sickness that followed was definitely reduced. No fever at all so he actually managed to sleep some. I suppose Jimmie could have just had an easier reaction, but I think it was because I saturated him with Vitamin C.
Saturday was . . . interesting. I headed to the Atlanta airport early arriving even before the suggested 75 minutes pre-flight, then got stuck in the biggest mess imaginable. I had heard folks complaining about the security measures there but did not understand just how bad it was. First, I walked down to the South Security checkpoint since I was in the South Terminal - but it closed with the man directly in front of me because it was too full. I was told to walk back to the main security checkpoint where I got in the world's longest line. I have to say that it was organized and everyone trudging along was pleasant . . . except for the young couple who tried to cut from the back of the line all the way to the front. When they got sent back down again a few minutes later their scowls put the rest of us standing our turn into a much better mood.
But I may have been scowling myself a few minutes later. Since my knee replacement surgery I have carried a card with me for just such occasions to show that I have metal in my body. Last year when we flew more than 25,000 miles and went through security checks in numerous airports I always showed them my card before walking through the machines so they would know. Sometimes that was all it took, others they did a quick scan with their magic wand to confirm the only metal was where I said it was and I was cleared to go. 2 - 3 minutes tops.
Not so Saturday.
I showed my card before walking through the metal detector and was directed to the little clear plastic cage as I expected. And there I waited . . . and waited. I waited for about 10 minutes. By the time the female agent came over to tell me that I would have to have the "pat down" I was getting very worried - and then annoyed. Because this same female agent had been standing about 5 feet away the whole time doing nothing in particular that I could see other than ignoring me. And the "pat down" took another forever. The only time I had ever been frisked as those cop shows call it had been at an airport in Ghana in 1983 - a very unpleasant experience. This frisking was way more thorough and embarrassing. The agent had asked me if I wanted to move to a private room, but I replied that I didn't have the time, just get it done. Then she tells me that the "pat down" was because I went through the wrong machine. If I had chosen the body scanner I would not have had a problem. Lovely. That would have been useful information to know BEFORE instead of just going to the line where I was directed. By the time I reached my gate the flight had already boarded so at least I didn't have to stand in a line there.
Still, the weekend was worth the hassle. Getting to hold Jasper, my newest grandson, for just a little while was wonderful. Flying back to Atlanta that afternoon bringing Cole with me to spend the week with us was fantastic. But hearing Jimmie read a bedtime story to him tonight was priceless.
- Linda
Saturday was . . . interesting. I headed to the Atlanta airport early arriving even before the suggested 75 minutes pre-flight, then got stuck in the biggest mess imaginable. I had heard folks complaining about the security measures there but did not understand just how bad it was. First, I walked down to the South Security checkpoint since I was in the South Terminal - but it closed with the man directly in front of me because it was too full. I was told to walk back to the main security checkpoint where I got in the world's longest line. I have to say that it was organized and everyone trudging along was pleasant . . . except for the young couple who tried to cut from the back of the line all the way to the front. When they got sent back down again a few minutes later their scowls put the rest of us standing our turn into a much better mood.
But I may have been scowling myself a few minutes later. Since my knee replacement surgery I have carried a card with me for just such occasions to show that I have metal in my body. Last year when we flew more than 25,000 miles and went through security checks in numerous airports I always showed them my card before walking through the machines so they would know. Sometimes that was all it took, others they did a quick scan with their magic wand to confirm the only metal was where I said it was and I was cleared to go. 2 - 3 minutes tops.
Not so Saturday.
I showed my card before walking through the metal detector and was directed to the little clear plastic cage as I expected. And there I waited . . . and waited. I waited for about 10 minutes. By the time the female agent came over to tell me that I would have to have the "pat down" I was getting very worried - and then annoyed. Because this same female agent had been standing about 5 feet away the whole time doing nothing in particular that I could see other than ignoring me. And the "pat down" took another forever. The only time I had ever been frisked as those cop shows call it had been at an airport in Ghana in 1983 - a very unpleasant experience. This frisking was way more thorough and embarrassing. The agent had asked me if I wanted to move to a private room, but I replied that I didn't have the time, just get it done. Then she tells me that the "pat down" was because I went through the wrong machine. If I had chosen the body scanner I would not have had a problem. Lovely. That would have been useful information to know BEFORE instead of just going to the line where I was directed. By the time I reached my gate the flight had already boarded so at least I didn't have to stand in a line there.
Still, the weekend was worth the hassle. Getting to hold Jasper, my newest grandson, for just a little while was wonderful. Flying back to Atlanta that afternoon bringing Cole with me to spend the week with us was fantastic. But hearing Jimmie read a bedtime story to him tonight was priceless.
- Linda
Friday, July 20, 2012
Nursing 101
I remember a time when you had to have a degree to give a shot, or at least special training. So when I learned that this new medication Jimmie has to inject into himself 3 times per week comes with a vial and a syringe that we have to fill I remarked to my sister that this chemo thing was getting too "medical". We both laughed . . . but that was before I actually opened a box and discovered that we also had to make the medicine. Dear me - way too medical. The nurse gave me a quick course in how to attach a needle to a syringe before I left the doctor's office yesterday with this huge Styrofoam cooler filled with ice and small prescription packs. But last night I was suddenly wishing for a nursing degree.
The packet that went with each dosage contained a syringe, 2 needles (?), 2 alcohol swabs, and a band-aid. (I was told to find my own cotton ball.) The prescription box held 2 tiny vials and some instructions - a very good thing since preparing the syringe fell to me. But the list of instructions was quite literally longer than my arm. The list of steps was very detailed, from first sterilizing my work area to disposing of the paraphernalia. I suppose my main concern was getting air in the injection - something the nurse had said not to worry about but I've seen all those murder mysteries where the victim is killed by a single air bubble. Naturally I got a stubborn one but it finally came out. Yes, the whole thing had me seriously stressed.
I really shouldn't be complaining, though. I had the easy part. Jimmie was the one who gave himself the injection. And Jimmie was the one who suffered the side effects.
The doctor had said the med might make Jimmie feel bad for a while. The prescription brochure said the most common side effect was flu-like symptoms. Neither really gave a clear picture of what to expect. Fortunately, the nurse told me that it was common to run a fever of 101 degrees or higher for 8 - 10 hours after injection and suggested starting Tylenol BEFORE the shot.. I'm very glad of that or I would have been totally freaked out at how sick Jimmie got through the night. The idea of sleeping through the worst of it really does not work.
- Linda
The packet that went with each dosage contained a syringe, 2 needles (?), 2 alcohol swabs, and a band-aid. (I was told to find my own cotton ball.) The prescription box held 2 tiny vials and some instructions - a very good thing since preparing the syringe fell to me. But the list of instructions was quite literally longer than my arm. The list of steps was very detailed, from first sterilizing my work area to disposing of the paraphernalia. I suppose my main concern was getting air in the injection - something the nurse had said not to worry about but I've seen all those murder mysteries where the victim is killed by a single air bubble. Naturally I got a stubborn one but it finally came out. Yes, the whole thing had me seriously stressed.
I really shouldn't be complaining, though. I had the easy part. Jimmie was the one who gave himself the injection. And Jimmie was the one who suffered the side effects.
The doctor had said the med might make Jimmie feel bad for a while. The prescription brochure said the most common side effect was flu-like symptoms. Neither really gave a clear picture of what to expect. Fortunately, the nurse told me that it was common to run a fever of 101 degrees or higher for 8 - 10 hours after injection and suggested starting Tylenol BEFORE the shot.. I'm very glad of that or I would have been totally freaked out at how sick Jimmie got through the night. The idea of sleeping through the worst of it really does not work.
- Linda
Wednesday, July 18, 2012
Chemo #3
Yesterday was a notable day, a milestone of sorts, but not one I cared to celebrate so it whizzed by without a thought. July 17 marked exactly 9 months since we were told that Jimmie has renal cancer, precisely 8 months since his right kidney was removed but all of the tumor wasn't, and just over 7 months since he has been dealing with the side effects of chemo.
I call it chemo because the doctor said all the drugs are really chemos, but what they are giving Jimmie is not technically classed as a chemo in the cancer treatment world. They call it "targeted therapy" because these drugs are only supposed to target cancer cells to prohibit new growth, as opposed to the traditional chemos and radiation treatments which kill cells of all kinds. Jimmie started his third variety of targeted therapy chemo on Monday. The nurse called this one a "biologic" but how that is different I am not sure. It is given by infusion so between labs, doctor consult and then the infusion we were at the doctor's office half a day on Monday.
Yet that was only half of the treatment, the compliment to the real cancer fighter Jimmie will be taking in a shot at home 3 times a week. Or he will be if we can ever get the medicine. He was supposed to start the first shot on Monday night so the doctor had called the drug store last Friday to order and have it ready for us. But through some kind of glitch he called the wrong drug store (one we had used before but now no longer works with our insurance). They did nothing until the tech in the infusion center started tracking it down on Monday afternoon. THEN instead of this drug store simply turning the prescription over to our usual pharmacy as I requested, they insisted they would fill the order through their mail order service. So on Monday they told the doctor's office the medicine will be delivered to our local pharmacy on Tuesday. On Tuesday Jimmie was told by this drug store that the medicine will be delivered directly to our home on Wednesday. Half an hour later I am told by the mail order company that this medicine will be delivered to his doctor's office on FRIDAY and I can pick it up there.
I was not happy. Very not happy. They put me on hold for about 10 minutes, which did not help, but came back to say that they would TRY to have the medicine to my doctor's office by WEDNESDAY.
This morning we got a call early from FedEx telling us that we would be getting a delivery this morning that must be signed for . . . so I'm assuming that is the medicine. I just have no clue WHERE they are delivering it.
- Linda
I call it chemo because the doctor said all the drugs are really chemos, but what they are giving Jimmie is not technically classed as a chemo in the cancer treatment world. They call it "targeted therapy" because these drugs are only supposed to target cancer cells to prohibit new growth, as opposed to the traditional chemos and radiation treatments which kill cells of all kinds. Jimmie started his third variety of targeted therapy chemo on Monday. The nurse called this one a "biologic" but how that is different I am not sure. It is given by infusion so between labs, doctor consult and then the infusion we were at the doctor's office half a day on Monday.
Yet that was only half of the treatment, the compliment to the real cancer fighter Jimmie will be taking in a shot at home 3 times a week. Or he will be if we can ever get the medicine. He was supposed to start the first shot on Monday night so the doctor had called the drug store last Friday to order and have it ready for us. But through some kind of glitch he called the wrong drug store (one we had used before but now no longer works with our insurance). They did nothing until the tech in the infusion center started tracking it down on Monday afternoon. THEN instead of this drug store simply turning the prescription over to our usual pharmacy as I requested, they insisted they would fill the order through their mail order service. So on Monday they told the doctor's office the medicine will be delivered to our local pharmacy on Tuesday. On Tuesday Jimmie was told by this drug store that the medicine will be delivered directly to our home on Wednesday. Half an hour later I am told by the mail order company that this medicine will be delivered to his doctor's office on FRIDAY and I can pick it up there.
I was not happy. Very not happy. They put me on hold for about 10 minutes, which did not help, but came back to say that they would TRY to have the medicine to my doctor's office by WEDNESDAY.
This morning we got a call early from FedEx telling us that we would be getting a delivery this morning that must be signed for . . . so I'm assuming that is the medicine. I just have no clue WHERE they are delivering it.
- Linda
Saturday, July 14, 2012
Mississippi Scan
Today's To Do List was fairly simple:
- Clear my email.
- Assign the Internet BCC students to teachers.
- Finish editing a book for a friend.
- Call the oncologist's office to report if Jimmie had lost any further blood (he had not).
- Pick up a few things at the grocery store.
I had just checked down to #4 when the phone rang and it was the oncologist. My first reaction was pleasant surprise that he would call personally to check on Jimmie, and he did. But then he had news and I could tell from the change in Jimmie's expression that it was not something we wanted to hear.
The doctor had gotten a copy of the tests done in the Mississippi ER two weeks ago and the cancer is growing again. Jimmie's last regularly scheduled CT Scan had been on June 11th and we were still rejoicing because the cancer had shrunk. But just 18 days later the Mississippi scan showed that the largest cancer nodule in his lungs had grown by 25%. The doctor did not go into any details about the others - we'll see him Monday for a complete report - but just this info was enough of a shock. He also explained to Jimmie that he is changing the treatment protocol again immediately so next week Jimmie will begin 2 new cancer drugs plus have a change in the blood thinner.
It is amazing what can swirl around in your head when you get news like this. Wondering what the other cancer spots have done, wondering how much more everything has grown in the 2 weeks since the Mississippi scan, wondering what new awful side effects Jimmie will have to deal with next, wondering . . . . But two thoughts surfaced as prominent. First, coughing that blood in Mississippi was a blessing in disguise. Without it Jimmie probably would not have had another CT Scan scheduled until September. And second, this probably closes any chance of the Africa campaign.
Please pray for Jimmie, especially this weekend. It is going to be a tough one.
- Linda
Thursday, July 12, 2012
2 Weeks
I can't believe that Jasper is 2 weeks old today. Jimmie has another 2 weeks on this round of chemo. And in 2 weeks Jimmie starts packing for Africa, if he is cleared to go.
Considering how much pain and sickness Jimmie was experiencing last fall it is amazing that he could even be considering a campaign this summer. Especially one as rigorous as the one to Zambia. There are campaigns that are fairly easy, even fun. There are campaigns that are filled to exhaustion with work but you have a good bed to drop into every night with plenty of good food and fellowship to keep you going. And then there are campaigns like the one to Zambia and spots like Siamafumba.
Siamafumba isn't even a village, just a crossroads, but thousands walk there as a central meeting place to hear the gospel preached, share a community meal, and sleep on the ground. Sleeping on the ground is what has kept me from joining Jimmie on these annual Africa trips. Preaching to thousands in a grass-covered brush arbor is what inspires Jimmie to keep going back.
Please pray that Jimmie will be able to continue mission campaigns of all kinds for many years to come.
- Linda
Considering how much pain and sickness Jimmie was experiencing last fall it is amazing that he could even be considering a campaign this summer. Especially one as rigorous as the one to Zambia. There are campaigns that are fairly easy, even fun. There are campaigns that are filled to exhaustion with work but you have a good bed to drop into every night with plenty of good food and fellowship to keep you going. And then there are campaigns like the one to Zambia and spots like Siamafumba.
Siamafumba isn't even a village, just a crossroads, but thousands walk there as a central meeting place to hear the gospel preached, share a community meal, and sleep on the ground. Sleeping on the ground is what has kept me from joining Jimmie on these annual Africa trips. Preaching to thousands in a grass-covered brush arbor is what inspires Jimmie to keep going back.
Please pray that Jimmie will be able to continue mission campaigns of all kinds for many years to come.
- Linda
Wednesday, July 11, 2012
Blood
Well, the blood came back. Jimmie starting spitting up blood again last Friday. Sometimes it was old clots. Sometimes it was bright red fresh blood. Neither made us happy. Jimmie decided against calling the doctor when it started because he did not want to spend another day at the ER being poked, prodded and photographed with various machines. He also did not want to go to the doctor's office because his oncologist was on vacation last week and that is who he trusts. And Jimmie decided against going off the chemo. That had been the immediate recommendation from the nurse both of the other two times this had started so that's what we expected to hear again. After Jimmie made his decisions that didn't leave me any options except worry.
The blood loss was very small but continued through the weekend, so when we arrived at the doctor's office on Monday for the weekly labs I'm afraid I was a tattletale. The doctor's secretary got very concerned very quickly. Jimmie was not scheduled to see anyone that day, but within minutes he was in an exam room with the nurse practitioner, and minutes after that the doctor, too. But rather than taking Jimmie off of the chemo the doctor thought the blood thinner was probably the problem. Jimmie has been taking daily injections of the highest dosage available as a precaution against the cancer throwing new clots since it had already thrown a few into his lungs. They did testing when he first started this regiment to be sure the dosage was okay, but the doctor thinks it has now become too high. Result? Jimmie is enjoying a short break from the torture shots he hates so has decided he is not annoyed with me after all. And there has not been any blood loss since Sunday night.
- Linda
The blood loss was very small but continued through the weekend, so when we arrived at the doctor's office on Monday for the weekly labs I'm afraid I was a tattletale. The doctor's secretary got very concerned very quickly. Jimmie was not scheduled to see anyone that day, but within minutes he was in an exam room with the nurse practitioner, and minutes after that the doctor, too. But rather than taking Jimmie off of the chemo the doctor thought the blood thinner was probably the problem. Jimmie has been taking daily injections of the highest dosage available as a precaution against the cancer throwing new clots since it had already thrown a few into his lungs. They did testing when he first started this regiment to be sure the dosage was okay, but the doctor thinks it has now become too high. Result? Jimmie is enjoying a short break from the torture shots he hates so has decided he is not annoyed with me after all. And there has not been any blood loss since Sunday night.
- Linda
Monday, July 2, 2012
Family Pictures
Jasper
Our newest grandson has arrived healthy, happy and adorable! I'm so pleased that our daughter was able to have the home birth she planned and everything went well. Big brother Cole was the first to see his new sibling and then announce to the rest of us waiting, "It's Jasper!"
I do believe that Cole really likes his new brother.
Jasper's other grandmother and I were given the awesome privilege of being the first ones to dress him after birth, and then everyone wanted to hold him.
Jasper's grandfathers passed him like old pros, even if it was past 3 in the morning by now.
It was my first time to be a part of a home birth and I have to say it was thrilling. Having the whole family there and enjoying some bonding time with Jasper so soon after his birth was a wonderful experience.
Having the newly revised Hill clan together to worship our Lord just 3 days later was also a joy.
- Linda
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