"Just the Facts"-- Still very weak, doctors visit, infusion visit for IV meds. New medicine.
We had a fairly decent day today. We only spent 5 hours at the doctors and infusion, didn't throw up and walked 4 laps in our court yard. We look pretty pathetic, but not too many people get to see, (thank goodness)! That rash was nasty as it has left a wake of peeling skin. Not just on the back like a sunburn, but everywhere, and all at once too. It is driving B crazy as he takes his hygiene very seriously. So this is one big obstacle for him. I finally was able to get him to gently exfoliate with a super soft mesh sponge with a super hydrating body wash. It has been helping a bit, but he won't let me put lotion on, gives him the creeps to think about it. We were able to get rid of 2 pills on his schedule which total 7 per day, but we added 1 old one back and 1 new one. So we are still ahead. This new one may turn a few heads, as this is the very well know drug from the 70's or 80's or anytime after for that matter. Seems it is used to entice appetite or otherwise known for causing "the munchies" figure it out yet? Yes, B and little 80 year old ladies are taking medical marijuana now. All I can say is this should be interesting.
Do you believe in angels? Well I do. I believe that they come in all shapes and sizes and in various forms. I have had a few angles appear here and there over the past few weeks and it has blessed us so much. One brought by a bag or some 20 different kinds of drinks for B to try. The first one we selected was a hit! I have barely cooked this week for myself or the girls due to some lovely angels who have culinary gifts. And that mailman is getting busier by the day, with such blessing of encouragement and kindness. Then there is this one angel that never lets my cupboards or refrigerator run dry. I continually get little e-mail blurbs from very thoughtful and timely angels sending a blessing along the way. I can't tell you how the heart surges with a warm feeling of delight and pure happiness that an arm of love has been extended out to us. I can only hope that I at some point in the future will act in a similar fashion when a friend in needs presents itself. These angels will remain unnamed here, but the One who records all acts of kindness is keenly aware of each wonderful blessing and stays on top of every thought or deed performed as a gift. Bless all you angels out there, each and every one.
Until next time,
Hopeful Believer.
Thursday, March 17, 2011
Wednesday, March 16, 2011
Mar 16, Day +46 Weak for a week
"Just the Facts"-- Moving very slow, very weak, able to eat a little, rash finally receding, infusion center every day.
Since the halting of the "bad medicine" the replacement medicine is currently being provided by an IV. This IV need, causes B to have to go to the infusion center every day to get infused. All that would be fine if we had the appointment information correct, but twice now they have had him coming at different times than was scheduled. Normally not a problem for most people, but this just wares B out. He sat for 2 hours waiting today until they called him in. Then his IV only takes an hour. He just doesn't have the stamina to be sitting around a waiting room to be called in. Tomorrow we have a big doctor visit and I plan to be there to get the 411 on this past weeks events and a good plan for this next week, meds and all. My hope is that we can drop a few pills, as that seems to be causing B to have problems with eating and motivation. Just 2 pills alone total 24 pills daily! He takes about 10 different kinds of pills, some singular, some multiple, a couple times a day. ugh. I have problems just taking 1 pill. The good news is he gained 3 pounds, so we hope he can hold them. Blood is still holding and platelets are hanging just over 30, which is his new low threshold.
So now, since the rash is moving out of our neighborhood, we need to rebuild our skin, which has taken a pretty good beating in the process. B is a peeling mess and feels very grungy, but hey, it was a gnarly rash and we are super happy it is moving on. The bladder has been doing quite well and we are hoping to come off those meds very soon. There certainly seems to be hills and valleys in this recovery process. No sooner do we get to the summit of one hill, we slide down deep into a valley. All I can say is it has been quite a ride. B will be happy to regain some of his energy as that seems to be dragging him down. My recipe is food, sleep and less meds to help get the energy back. Also it would be nice to find a drink he likes, we have tried so many. Just today our daughter tried 4 different drinks before he was sorta OK with one. This is due to his taste buds being so tortured from chemo. It will come back but until it does, we continue to find the magical elixir for him. Perseverance is one of my gifts and I have faith we will win this challenge!
Until next time,
Hopeful Believer.
Since the halting of the "bad medicine" the replacement medicine is currently being provided by an IV. This IV need, causes B to have to go to the infusion center every day to get infused. All that would be fine if we had the appointment information correct, but twice now they have had him coming at different times than was scheduled. Normally not a problem for most people, but this just wares B out. He sat for 2 hours waiting today until they called him in. Then his IV only takes an hour. He just doesn't have the stamina to be sitting around a waiting room to be called in. Tomorrow we have a big doctor visit and I plan to be there to get the 411 on this past weeks events and a good plan for this next week, meds and all. My hope is that we can drop a few pills, as that seems to be causing B to have problems with eating and motivation. Just 2 pills alone total 24 pills daily! He takes about 10 different kinds of pills, some singular, some multiple, a couple times a day. ugh. I have problems just taking 1 pill. The good news is he gained 3 pounds, so we hope he can hold them. Blood is still holding and platelets are hanging just over 30, which is his new low threshold.
So now, since the rash is moving out of our neighborhood, we need to rebuild our skin, which has taken a pretty good beating in the process. B is a peeling mess and feels very grungy, but hey, it was a gnarly rash and we are super happy it is moving on. The bladder has been doing quite well and we are hoping to come off those meds very soon. There certainly seems to be hills and valleys in this recovery process. No sooner do we get to the summit of one hill, we slide down deep into a valley. All I can say is it has been quite a ride. B will be happy to regain some of his energy as that seems to be dragging him down. My recipe is food, sleep and less meds to help get the energy back. Also it would be nice to find a drink he likes, we have tried so many. Just today our daughter tried 4 different drinks before he was sorta OK with one. This is due to his taste buds being so tortured from chemo. It will come back but until it does, we continue to find the magical elixir for him. Perseverance is one of my gifts and I have faith we will win this challenge!
Until next time,
Hopeful Believer.
Monday, March 14, 2011
Mar 14, Day +44, Bad Medicine
"Just the Facts"-- Not feeling so great, not looking so great, yellow eyes, stomach ache, back to the infusion center.
The last blog was Saturday, that day we spent 6 hours at the infusion center, having labs done and waiting for the results. Well they do both chemistry and blood to check all levels. The only item that needed attention we were told was platelets, so B got 1 bag of platelets infused and then home we went. Well earlier in the week on Thursday B was at the big doctor, and I did not go to this visit, a mistake! He came home with a new medicine plan, double the pills and had entered a clinical trial. You see he is really not himself and is not able to discern these things right now. So we got in gear and started up the new medicine regime. I usually take the time to read all this, but it had been a busy week and that just didn't happen until Sunday evening. I noticed a slight tinge of yellow in B eyes on Saturday, but didn't mention it as I had seen this before in the hospital and asked about it. They were just adjusting meds. So on Sunday when I noticed his eyes more yellow, I pulled out the documents and read all the new meds, and sure enough one of the severe side effects was yellow eyes. This is a tell tell sign of something more serious happening internally.
So we stopped that medicine and I reported it to the coordinator for Monday morning, as it turns out his chemistry level was going awry on Saturday, but the nurse didn't pay close enough attention to it. Now to fix things he has to go in every day to the infusion center and get infused with something to right these levels and replace the medicine he is not longer taking. Beats being admitted to the hospital. On the upside the rash is beginning to subside. It still looks awful, but the pain and burning is not so intolerable.
B is down to 135 lbs, which I have to say is a bit scary. He looks way too skinny. Due to this, his energy level is way down. I had to cokes him into a walk in our front courtyard. That is rare, usually he is on the go and I have to go check on him. He continues to be perseverant and upbeat in the midst of these uncomfortable obstacles. But then no one said it would be easy. The Lord loves those who are faithful. Faithfulness is a virtue to be prized and held dear. It is so valuable in God's economy. I believe that B is very faithful and truly loves The Lord. And I thank each of you, who continue to lift him up in prayer in your faithful way.
Until next time,
Hopeful Believer.
The last blog was Saturday, that day we spent 6 hours at the infusion center, having labs done and waiting for the results. Well they do both chemistry and blood to check all levels. The only item that needed attention we were told was platelets, so B got 1 bag of platelets infused and then home we went. Well earlier in the week on Thursday B was at the big doctor, and I did not go to this visit, a mistake! He came home with a new medicine plan, double the pills and had entered a clinical trial. You see he is really not himself and is not able to discern these things right now. So we got in gear and started up the new medicine regime. I usually take the time to read all this, but it had been a busy week and that just didn't happen until Sunday evening. I noticed a slight tinge of yellow in B eyes on Saturday, but didn't mention it as I had seen this before in the hospital and asked about it. They were just adjusting meds. So on Sunday when I noticed his eyes more yellow, I pulled out the documents and read all the new meds, and sure enough one of the severe side effects was yellow eyes. This is a tell tell sign of something more serious happening internally.
So we stopped that medicine and I reported it to the coordinator for Monday morning, as it turns out his chemistry level was going awry on Saturday, but the nurse didn't pay close enough attention to it. Now to fix things he has to go in every day to the infusion center and get infused with something to right these levels and replace the medicine he is not longer taking. Beats being admitted to the hospital. On the upside the rash is beginning to subside. It still looks awful, but the pain and burning is not so intolerable.
B is down to 135 lbs, which I have to say is a bit scary. He looks way too skinny. Due to this, his energy level is way down. I had to cokes him into a walk in our front courtyard. That is rare, usually he is on the go and I have to go check on him. He continues to be perseverant and upbeat in the midst of these uncomfortable obstacles. But then no one said it would be easy. The Lord loves those who are faithful. Faithfulness is a virtue to be prized and held dear. It is so valuable in God's economy. I believe that B is very faithful and truly loves The Lord. And I thank each of you, who continue to lift him up in prayer in your faithful way.
Until next time,
Hopeful Believer.
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