The day started off with our usual visit to the clinic and blood draws, various drugs given, etc. When the blood counts came back, Doug's platelets had fallen to 9,000 -- below the cutoff for platelet transfusion. Not really surprising as we had been told that most transplant patients receive transfusions. We had to go across the street to P/SL hospital where they handle transfusions. It had been a long clinic visit because they opened late due to the storm the day before. So by the time we got to the hospital infusion center, it was past 5:00 pm. Doug's temp had been okay at the clinic -- but (perhaps predictably) by the time his temp was taken, it was 101.4. So the nurse had to page the transplant Dr. on call. I'll cut out some of the details. The doc came to see Doug and decided that he should be admitted. His reasoning was to admit because of several things: continuing fevers in spite of IV antibiotics, vomiting whenever Doug tried to eat, and the severe mouth and throat sores. I have to agree with that decision. Doug needs a couple of days in the hospital now to get him more comfortable.
By the time we got him admitted, the most recent blood results came back -- Doug also needed red blood cells, which were running when I left at 11:00pm. A new antibiotic, Vancomycin, has been added to the drug arsenal. Doug is on the transplant floor, in the care of a very capable RN who is very experienced with transplant patients. She is responsible for two other patients besides Doug, which is a pretty good hospital nurse/patient ratio. All the nurses gown and glove every time they enter a patient room. Of course they are all private rooms. So I can relax a little and know that he is getting good care while I get some sleep.
I do have some good news -- the chest X-ray results came back -- no pneumonia!
Friday, March 27, 2009
Thursday, March 26, 2009
Day + 7 -- more fever and new drugs
This is the third evening in a row that Doug has spiked a fever. Always in the evening, never while he's in the clinic. He's still taking Tylenol for the fever, but liquid now.
Starting today he can't swallow pills, because of the pain in his mouth and throat. So his meds that he was taking by pill have been changed to IV. I will do some of them here at the hotel, because of the time schedule, some they will do at the clinic. At one time today the nurses were running three IV pumps to deliver all the meds.
He has just started wearing a fentanyl patch for pain, so hopefully that will help soon. Fentanyl is a narcotic pain med that can be delivered transdermally - through the skin. We also filled a prescription for Percoset which is another drug that the doc prescribed for "breakthrough" pain and is a pill, which I hope he can take tomorrow.
Doug is now considered medically "malnourished". He is well hydrated because of all the fluids but he needs to take in more calories. He has been sipping on Boost over ice chips and I hope that once the pain meds kick in that he can eat more.
Extra blood was drawn today for culture, because of the persistent fever. On exam, the doc heard a "slight rattle" in Doug's chest, so on the way home we had to stop at P/SL hospital for a chest X-ray. Won't get the results until tomorrow. I am torn between hoping they don't find anything, and wanting them to find whatever is causing the fever. Please pray there will be no pneumonia!
Doug had to wear a mask while we were waiting at the hospital. I just cringed every time someone walked in coughing into their hands and then touching everything. The world can be a scary place.
Denver had snow today - the TV weather people had made it sound like a huge blizzard was coming, and indeed for a short while it looked like it. So evidently many Denver businesses closed early -- by the time we were finished at the hospital the streets were clogged bumper to bumper with stop and go traffic. Streets were a bit icy but only a few inches of snow and no accidents that we could see. It took us almost two hours to get back to the hotel, a drive that normally takes 15 to 20 minutes. The highest speed we achieved was 15 mph; seems everyone wanted to change lanes. Ridiculous and so frustrating when Doug was not feeling well.
We are trying to keep spirits up and take things one day at a time. I found the following which is somehow comforting:
"Prayer is not escape; prayer is the way to conquest. Prayer is not flight; prayer is power. Prayer does not deliver a man from some terrible situation; prayer enables a man to face and to master the situation. When Jesus prayed that the bitter cup of the Cross might pass from him, that cup was not taken away from him. He had to drain it to its last agonizing dregs. But he was enabled to come through the Cross and to emerge on the other side of it in triumph. So often people pray to be delivered from a problem, to be rescued from situation, to be saved from a disaster, to be spared a sorrow, to be healed from a sickness, to be freed from a mental or a physical agony. Sometimes, it is true, that deliverance comes; but far more often the answer is that we are given the strength which is not our strength to go through it, and to come out at the other side of it, not simply as a survivor, but with a faith that is strengthened and deepened and a mind and a life and a character which are purified and ennobled. Prayer does not provide a means of running away from the human situation; prayer provides a way of meeting the human situation."
Starting today he can't swallow pills, because of the pain in his mouth and throat. So his meds that he was taking by pill have been changed to IV. I will do some of them here at the hotel, because of the time schedule, some they will do at the clinic. At one time today the nurses were running three IV pumps to deliver all the meds.
He has just started wearing a fentanyl patch for pain, so hopefully that will help soon. Fentanyl is a narcotic pain med that can be delivered transdermally - through the skin. We also filled a prescription for Percoset which is another drug that the doc prescribed for "breakthrough" pain and is a pill, which I hope he can take tomorrow.
Doug is now considered medically "malnourished". He is well hydrated because of all the fluids but he needs to take in more calories. He has been sipping on Boost over ice chips and I hope that once the pain meds kick in that he can eat more.
Extra blood was drawn today for culture, because of the persistent fever. On exam, the doc heard a "slight rattle" in Doug's chest, so on the way home we had to stop at P/SL hospital for a chest X-ray. Won't get the results until tomorrow. I am torn between hoping they don't find anything, and wanting them to find whatever is causing the fever. Please pray there will be no pneumonia!
Doug had to wear a mask while we were waiting at the hospital. I just cringed every time someone walked in coughing into their hands and then touching everything. The world can be a scary place.
Denver had snow today - the TV weather people had made it sound like a huge blizzard was coming, and indeed for a short while it looked like it. So evidently many Denver businesses closed early -- by the time we were finished at the hospital the streets were clogged bumper to bumper with stop and go traffic. Streets were a bit icy but only a few inches of snow and no accidents that we could see. It took us almost two hours to get back to the hotel, a drive that normally takes 15 to 20 minutes. The highest speed we achieved was 15 mph; seems everyone wanted to change lanes. Ridiculous and so frustrating when Doug was not feeling well.
We are trying to keep spirits up and take things one day at a time. I found the following which is somehow comforting:
"Prayer is not escape; prayer is the way to conquest. Prayer is not flight; prayer is power. Prayer does not deliver a man from some terrible situation; prayer enables a man to face and to master the situation. When Jesus prayed that the bitter cup of the Cross might pass from him, that cup was not taken away from him. He had to drain it to its last agonizing dregs. But he was enabled to come through the Cross and to emerge on the other side of it in triumph. So often people pray to be delivered from a problem, to be rescued from situation, to be saved from a disaster, to be spared a sorrow, to be healed from a sickness, to be freed from a mental or a physical agony. Sometimes, it is true, that deliverance comes; but far more often the answer is that we are given the strength which is not our strength to go through it, and to come out at the other side of it, not simply as a survivor, but with a faith that is strengthened and deepened and a mind and a life and a character which are purified and ennobled. Prayer does not provide a means of running away from the human situation; prayer provides a way of meeting the human situation."
Wednesday, March 25, 2009
Day +6 -- more misery
Doug's blood counts are still falling: WBC is 0.1, HCT 29.0 platelets 65. This is not alarming to the medical team, and they keep reassuring us that this is to be expected. We are still hoping that Doug can get by without transfusions, but time will tell. They keep hydrating him every day at the clinic, and adding electrolytes as needed.
I am now running Cefepime antibiotic via the central line 3 times a day, because of the fever. I feel like I just graduated from the "see one, do one" school of nursing. Because of my medical background (Radiation Therapist, retired) I am familiar with much of the medical world, but hands-on nursing was never my specialty.
About half of the auto transplant patients end up running a fever, so for the first time Doug is in the lower percentile.
Doug now has a slight sore throat, increasing mouth sores, and today the bad diarrhea started. They are doing stool and blood cultures, but Doug's doctor told him to go ahead and take Immodium now for the diarrhea. Some docs make the patient wait until the cultures are back -- we are so glad that Dr. Matous is a practical guy!
This evening at 7:30, Doug's temp rose to 100.8 -- so another call to RMCC answering service. It took almost an hour for the doc on call to return our call. Meanwhile I called the answering service again, and then found a voicemail on my phone from the doc stating that his call had been blocked. We do not have call blocking so not sure what happened. So I called the answering service yet again and gave them our land line number at the hotel. During this time Doug's temp had risen to 101.0. Finally we connected with the doc and he said to go ahead and give Doug 1000 mg of Tylenol every 6 hours. If that does not control the fever then Doug will need a different type of antibiotic; they will check him in the morning at the clinic.
The home health service delivered another big box of supplies for our 'home IV'. We opened it up to make sure it was the right stuff - I'm not quite as trusting as I used to be. Good thing we checked, as we found that this time the antibiotic solution was pre-mixed and needed to be refrigerated (there was an ice pack in the box). Nothing was said to us, nothing on the outside of the box about needing refrigeration. Consumer beware -- even with the best of medical care, the patient needs an advocate to check on everything! I have no hesitation about asking questions of nurses and doctors -- what, why, how, etc.
The docs want Doug to get some calories in, and he is trying but it is hard. He is now on 11 different drugs, so that plus just feeling lousy makes it hard to eat. Today he has had ice chips, 1/3 cup applesauce, 1/2 can of Boost, and an ice pop. Oddly enough, his weight is holding at 171 so far. Must be all the fluids they pump into him.
Doug's attitude is still mostly positive. He is concerned about me; he made sure I would lay down for a nap this afternoon. Gotta love this guy.
We love you all -- and thanks for the prayers!
I am now running Cefepime antibiotic via the central line 3 times a day, because of the fever. I feel like I just graduated from the "see one, do one" school of nursing. Because of my medical background (Radiation Therapist, retired) I am familiar with much of the medical world, but hands-on nursing was never my specialty.
About half of the auto transplant patients end up running a fever, so for the first time Doug is in the lower percentile.
Doug now has a slight sore throat, increasing mouth sores, and today the bad diarrhea started. They are doing stool and blood cultures, but Doug's doctor told him to go ahead and take Immodium now for the diarrhea. Some docs make the patient wait until the cultures are back -- we are so glad that Dr. Matous is a practical guy!
This evening at 7:30, Doug's temp rose to 100.8 -- so another call to RMCC answering service. It took almost an hour for the doc on call to return our call. Meanwhile I called the answering service again, and then found a voicemail on my phone from the doc stating that his call had been blocked. We do not have call blocking so not sure what happened. So I called the answering service yet again and gave them our land line number at the hotel. During this time Doug's temp had risen to 101.0. Finally we connected with the doc and he said to go ahead and give Doug 1000 mg of Tylenol every 6 hours. If that does not control the fever then Doug will need a different type of antibiotic; they will check him in the morning at the clinic.
The home health service delivered another big box of supplies for our 'home IV'. We opened it up to make sure it was the right stuff - I'm not quite as trusting as I used to be. Good thing we checked, as we found that this time the antibiotic solution was pre-mixed and needed to be refrigerated (there was an ice pack in the box). Nothing was said to us, nothing on the outside of the box about needing refrigeration. Consumer beware -- even with the best of medical care, the patient needs an advocate to check on everything! I have no hesitation about asking questions of nurses and doctors -- what, why, how, etc.
The docs want Doug to get some calories in, and he is trying but it is hard. He is now on 11 different drugs, so that plus just feeling lousy makes it hard to eat. Today he has had ice chips, 1/3 cup applesauce, 1/2 can of Boost, and an ice pop. Oddly enough, his weight is holding at 171 so far. Must be all the fluids they pump into him.
Doug's attitude is still mostly positive. He is concerned about me; he made sure I would lay down for a nap this afternoon. Gotta love this guy.
We love you all -- and thanks for the prayers!
Day + 5 -- fever
Our clinic visit on Day + 5 was uneventful. Doug was getting a slight sore throat along with the mouth sores but nothing that alarmed anyone. His blood counts had fallen more, WBC 0.2, platelets 95, but again nothing that was not expected. He now is getting daily Neupogen shots to help kick-start new cell production.
However at 8:30 in the evening he spiked a fever of 100.6. We had strict instructions to call the clinic if he had a temp over 100.5, so I called right away. Got the answering service, blah, blah, finally the doctor on call called back. He said to go ahead and call Coram, the home health service and they would send a nurse out to start the IV antibiotics. OK -- except we did not have that phhone number. We had been given a "list of important numbers" but it did not include Coram. They had sent out to the hotel, back in the beginning, a "fever kit" which consisted of two large cardboard boxes, one containing a IV pole, and one a box of meds. We had not opened the boxes, thinking that there was nothing we needed until when and if the nurse came out. Finally it dawned on me that inside the box must be a number for Coram. So there I am, holding the phone and talking to the doctor with one hand and fumbling with a sharp knife trying to open the sealed box. Yes, there was a number inside!
So I got Coram's answering service and finally a nurse called me back. I knew that the fever meds needed to be started within two hours of the fever spike, so was getting a bit anxious. The nurse did make it to the hotel with 15 minutes to spare. He drew blood, which we are to take to the clinic this morning. Then he showed me how to mix the meds and hook up the line to Doug's central venous catheter. I had already learned how to care for and flush the lines so that part was really not too difficult. It was after 10:00 pm by this time, and the meds need to be given every 8 hours. So we were up early this morning to get the IV meds going by 6:00 am.
Guess I am venting to you all - not being able to find a phone number in an already stressful situation just adds to that stress. I will be giving feedback to the clinic today. Personally I think the doctor should call the home health service, not the caregiver. We have great respect for all the medical personnel but nothing is perfect.
Doug is feeling awful, as you would expect. Hope this is a better day.
Monday, March 23, 2009
Day +4 Neutropenic
Doug is now officially neutropenic. WBC is 0.3 -- sounds kind of scary but that is expected and it will probably be zero by tomorrow. This means that if he gets an infection it would be dangerous as his body cannot fight it. In that case he would go on really strong IV meds and need lots of prayers! He is already on pills to hopefully prevent viral, bacterial, and fungal infections. This week will be the worst part and should get better after that.
We were in the clinic for 5 1/2 hours today. Doug needed an extra hour and a half for some magnesium. I always feel better after the docs and nurses assure us that Doug is "right on schedule, doing well".
He now has the mouth sores - looks bad but Doug says the pain is tolerable so far. He is only eating ice chips, jello and a little ice cream. I have to keep a log of what he eats now as well as all his meds.
It could be worse -- Doug gets a drug called Kytril that is preventing the chemo-induced nausea. So we are very thankful he doesn't have to experience that.
Neither of us is getting a lot of sleep but we are managing to rest during the day.
The report from Doug on how he is feeling: "Crappier than yesterday". We can do this.
Love to all.
We were in the clinic for 5 1/2 hours today. Doug needed an extra hour and a half for some magnesium. I always feel better after the docs and nurses assure us that Doug is "right on schedule, doing well".
He now has the mouth sores - looks bad but Doug says the pain is tolerable so far. He is only eating ice chips, jello and a little ice cream. I have to keep a log of what he eats now as well as all his meds.
It could be worse -- Doug gets a drug called Kytril that is preventing the chemo-induced nausea. So we are very thankful he doesn't have to experience that.
Neither of us is getting a lot of sleep but we are managing to rest during the day.
The report from Doug on how he is feeling: "Crappier than yesterday". We can do this.
Love to all.
Sunday, March 22, 2009
Day +3 Hanging in there
We had our usual three hour clinic visit this morning. Doug has lost three pounds since yesterday. The doc basically said not to worry too much - they expect him to lose weight since he isn't eating much. They keep giving him lots of fluid every day - he got an extra bag today, and some calcium added to the IV line, since that value was low.
His blood counts are dropping, as expected. WBC is now 2.5, platelets 185. (He won't be officially neutropenic until the absolute neutrophil count is below 500.) The chemo has destroyed Doug's bone marrow, so there are no new blood cells being made; the counts drop as the mature cells that are still circulating die off. The immature stem cells that were infused on Day 0 have not yet started to work; it will be another ten days or so until they "engraft" in the marrow and learn to become the different kinds of blood cells.
We are told that when we arrive at the clinic from now on, to go right away to our assigned room, not to wait in the waiting room. Doug does not have to wear a mask; the nurse said that a mask doesn't really help much -- better to just stay away from people. We are both washing our hands a lot.
The doc said that he thinks Doug is "two or three days" away from really low counts. He also said that on the physical exam he could see "chemo changes" in Doug's mouth, although Doug isn't feeling it yet.
Doug says that he feels "weak and crappy". But his attitude is strong.
This journey won't be easy, we both know that. But what keeps us strong is two things.
One is the excellent care Doug is getting from the doctors and nurses. They monitor him so closely and know how to support the body during all this. They are all so calm, competent, caring and cheerful that we take a lot of comfort. All their explanations are helpful so that at least we know what to expect.
The other thing is the prayers, love and support we feel from all of you. We pray for strength and we know that God is walking this path with us. I pray that God keeps me healthy and gives me endurance so that I can take care of Doug. I also pray that his attitude can remain positive in the upcoming days.
I was reading Psalm 37 this morning and verses 23 and 24 spoke to me:
"The steps of the godly are directed by the Lord. He delights in every detail of their lives. Though they stumble, they will not fall, for the Lord holds them by the hand."
His blood counts are dropping, as expected. WBC is now 2.5, platelets 185. (He won't be officially neutropenic until the absolute neutrophil count is below 500.) The chemo has destroyed Doug's bone marrow, so there are no new blood cells being made; the counts drop as the mature cells that are still circulating die off. The immature stem cells that were infused on Day 0 have not yet started to work; it will be another ten days or so until they "engraft" in the marrow and learn to become the different kinds of blood cells.
We are told that when we arrive at the clinic from now on, to go right away to our assigned room, not to wait in the waiting room. Doug does not have to wear a mask; the nurse said that a mask doesn't really help much -- better to just stay away from people. We are both washing our hands a lot.
The doc said that he thinks Doug is "two or three days" away from really low counts. He also said that on the physical exam he could see "chemo changes" in Doug's mouth, although Doug isn't feeling it yet.
Doug says that he feels "weak and crappy". But his attitude is strong.
This journey won't be easy, we both know that. But what keeps us strong is two things.
One is the excellent care Doug is getting from the doctors and nurses. They monitor him so closely and know how to support the body during all this. They are all so calm, competent, caring and cheerful that we take a lot of comfort. All their explanations are helpful so that at least we know what to expect.
The other thing is the prayers, love and support we feel from all of you. We pray for strength and we know that God is walking this path with us. I pray that God keeps me healthy and gives me endurance so that I can take care of Doug. I also pray that his attitude can remain positive in the upcoming days.
I was reading Psalm 37 this morning and verses 23 and 24 spoke to me:
"The steps of the godly are directed by the Lord. He delights in every detail of their lives. Though they stumble, they will not fall, for the Lord holds them by the hand."
Saturday, March 21, 2009
Day +2 -- Fatigue
We were at the clinic for three hours today -- the daily blood draw, hydration and Dr visit. The saline drip takes two hours. Doug is feeling fatigued and doesn't have much appetite. His blood counts are not in the danger zone yet, and no fevers. He is not sleeping well so we got a prescription for a new sleeping pill.
We are holed up in our hotel room. We did watch half of the movie "Australia" and Doug stayed awake for that.
So not much to report. All is well.
I want to share two sayings that we got in a card from our good friends Gary and Jan Stephan:
"Just when the caterpillar thought the world was over, it became a butterfly."
"Worrying does not empty tomorrow of its troubles. It empties today of its strength."
Love to all.
We are holed up in our hotel room. We did watch half of the movie "Australia" and Doug stayed awake for that.
So not much to report. All is well.
I want to share two sayings that we got in a card from our good friends Gary and Jan Stephan:
"Just when the caterpillar thought the world was over, it became a butterfly."
"Worrying does not empty tomorrow of its troubles. It empties today of its strength."
Love to all.
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