It has been an extremely challenging week. More and more, this whole journey feels like an extreme video game. Every time Joe overcomes the evils of one level, he discovers that there is another level with bigger and tougher evils. We just keep waiting for that day when we learn that Joe has beat every single level and won the whole game!
Initially we were happy, because Joe finished chemo this week, and the cultures for VRE were all coming up negative. (Still a praise.)
Unfortunately, Joe developed some curious red spots. He started with just two, and we didn't think much of it. Then a few more spots appeared, and Joe's legs and arms were feeling a bit sore. We thought that maybe it was from the chemotherapy. We kept the doctors informed. The spots continued to increase, and the soreness in Joe's legs and arms turned into pain. Joe felt as though he was feeling the after effects of an EXTREME workout...multiplied by a hundred. It got to the point that Joe was unable to stand on his own.
A skin biopsy was done. The doctors suspected a fungal infection and braced themselves for the results. Yesterday morning, the infectious disease doctor told us that Joe did in fact have a fungal infection. He also mentioned that it might possibly be Mucormycosis. Fortunately, at the time we were blissfully ignorant about what this diagnosis would mean. We later learned that that diagnosis would be just about the worst news possible. So bad in fact that the person who relayed the message to Joe's primary hem-onc doctor was in tears. Joe had already been on the drug (posaconazole) that is used to treat mucormycosis. It is a very new drug which gives a lot of hope to patients now. But since Joe was already on it, there wouldn't be much left to do since an infection would mean resistance was developed to the drug. Like I mentioned already, it is a good thing we were blissfully unaware.
Less than an hour later, Joe's primary hem-onc doctor informed us that Joe did not have a mocormycosis infection, he had aspergillus. This was not good news, or even better news. But it was less bad news. This is treatable. It won't be easy...but what part of leukemia is easy? The wonderful news is that Joe is a fighter. He has been through all kinds of challenges, including the evil lung challenge, and overcome every single one. So a plan was formed. Joe's treatment will have five parts.
1. Voriconazole - Joe was taken off the posaconzole, which isn't so effective against aspergillus and switched to voriconazole which is effective. We have since learned that this drug can cause some hallucinations, which explains why Joe was conversing with people in his sleep all night.
2. Abelcet (amphotericin) - This drug has been nicknamed amphoterrible. It causes chills, which Joe experienced yesterday. Today, Joe was premedicated before the getting the Abelcet and avoided the chills. Yay!
3. Granulocyte Infusion Therapy - This is basically an infusion of white cells. It is not a very common procedure and seems to be reserved for cases like Joe's current situation in which he has a serious fungal infection and virtually no white blood cells of his own to fight off the infection. Apparently there is a data base of donors, and Joe was matched with someone and received his first bag of cells today.
4. GM-CSF (Leukine) - This is kind of like Neupogen which Joe used to get to increase his neutrophil count. Instead of an injection, this runs as an IV over 4 hours.
5. Prayer - Yup, this prescription came straight from the doctor. Fortunately, all of our readers and even our non-readers have proved to be really good at praying.
Joe will be receiving all of the above every day. (We are convinced that it is all starting to work already.) Next week, Joe will be getting bone marrow biopsy #12. This biopsy is super duper important and will determine much of what follows. So please pray for this aspergillus to be taken care of and for perfect bone marrow results!!!!!
Joe is still in a lot of pain. He is receiving pain meds around the clock after a consult with a really sweet and amazing doctor. Joe is able to move a little bit more than before which is good. The drugs really making him woozy though. When you talk to Joe you immediately realize that his head is super clear, but he sounds like he's drunk! Joe also says that he feels that he knows what it is like to have narcolepsy. He keep falling asleep at random moments. Breakfast this morning was a bit messy as Joe would fall asleep while stirring his hot chocolate or eating his toast. It all gives us something to laugh about!
We had a bit of a good cry yesterday morning, and now we are once again full of hope, faith, and strength. Joe is absolutely amazing. All the doctors and nurses keep remarking about how well he has been handling everything. Stubbornly optimistic. That's us. God is good...all the time.
Friday, August 31, 2007
Saturday, August 25, 2007
chemo
Well, Joe's cultures from Tuesday ended up becoming positive after 48 hours. However, Joe remained afebrile. Because Joe was feeling quite well and had no worrying symptoms, the doctors decided to just jump right in and start chemo on Thursday. On the one hand, it's not ideal to start chemo when there is some type of infection. On the other hand, Joe was already lacking any WBC that might help to fight off the infection. The doctors decided that it would be best to start chemo before Joe's disease decides to rear it's ugly head again rather than wait for the cultures to become negative - which could take weeks.
Joe is doing well so far. His appetite is still pretty good. We just keep praying for negative cultures and for the chemo to do its job! Chemo started on Thursday evening, so Joe will be done on Tuesday evening. There was a bit of a mix-up with the "+2" part of the chemo. Not a big deal. Because of the mix-up Joe didn't get his daunorubicin on the first two days of his regimen. He'll be getting it on the last two days now, and that's okay. Apparently that's how they do things in Europe, anyway. So Joe's treatments have a bit of European flair this time. Classy, eh?
~~~~~
A very Happy Birthday to Louis!!! Hope you're able to celebrate in style.
A big congratulations to April & Paul who got married last weekend. :)
Joe is doing well so far. His appetite is still pretty good. We just keep praying for negative cultures and for the chemo to do its job! Chemo started on Thursday evening, so Joe will be done on Tuesday evening. There was a bit of a mix-up with the "+2" part of the chemo. Not a big deal. Because of the mix-up Joe didn't get his daunorubicin on the first two days of his regimen. He'll be getting it on the last two days now, and that's okay. Apparently that's how they do things in Europe, anyway. So Joe's treatments have a bit of European flair this time. Classy, eh?
~~~~~
A very Happy Birthday to Louis!!! Hope you're able to celebrate in style.
A big congratulations to April & Paul who got married last weekend. :)
Wednesday, August 22, 2007
hey there fever. stay away!
Joe had an eventful weekend. The fun part was the visitors. Albert was able to come back for a brief visit. A visit from Albert is always guaranteed to put a HUGE smile on Joe's face. The smile on Joe's face was even bigger and brighter this past weekend though because Joe's 1st uncle & aunt and 2nd uncle also came for a visit. It was Joe's 1st uncle & aunt's first trip to America. It was a lot of fun bonding and chatting. By the end of the weekend it was determined that when that wonderful day comes when Joe and I are able to plan a trip to Taiwan together - we'll have to set aside several months! Between my relatives and his relatives...oh boy, oh boy. It'll be fun, and we are having fun dreaming.
The drama side of the weekend is that the "negative" culture result we received on Saturday was a bit premature. Those cultures did end up being positive after all. As a precaution, and because fellows like to cover their butt and order everything under the sun, on Sunday Joe had a CT of the chest, abdomen and pelvis. Nothing remarkable was found, except some improvement in Joe's lungs compared to the previous chest CT. An ultrasound of the neck was also ordered and performed on Monday. We're still not quite sure why it was ordered, but it gave Joe another excuse to visit the radiology department. Within five minutes of being in the waiting area, Joe had about ten people go and greet him. I'm sure the other patients were wondering what kind of celebrity was sitting before them! Again, nothing remarkable was found.
On Monday, Joe was also taken off of Daptomycin and started on Linezolid. Because Joe's WBC is so low, Linezolid seemed a better choice. Each day since the discovery of the bacteria, Joe has woken up with a fever. The fever generally lasts a few hours and then Joe is afebrile until the next morning. This morning was the first time that Joe woke up without a fever. Woohooo! Also, 21 hours after yesterdays culture, it was still negative. This is a good sign, and the huge smile that Joe's dad was sportin' all day is proof of that. So now, chemo could start as soon as tomorrow. For real this time.
Just like Joe's first round of induction chemotherapy, Joe will be getting cytarabine (Ara-C) and daunorubicin. The last round was a "7+3" regimen. Joe received cytarabine continuously for seven days (7). For the first three days Joe also received daunorubicin, the fifteen minute infusion that looks like cherry kool-aid (+3). This round will be shorter, a "5+2" regimen. So five continuous days of Ara-C, and daunarubicin the first two days.
Other interesting news. Joe's fingers have been peeling for a couple weeks now. It was very similar to when Joe started getting GVHD. Interestingly enough, some final results from Joe's last bone marrow biopsy showed that Joe still now has 5% donor in his marrow. So the peeling is definitely from GVHD. Now since the donor has survived all the post-transplant chemo Joe has had so far...how neat would be if it survived this next round as well, and blossomed! Nothing's impossible right? Something to think about. What is even more interesting and strange is that Joe's marrow went on to show 25% male. So what was the other 70%? It was x0. That is, a single x chromosome. We have no idea what this means...except that it does NOT mean that Joe has Turner Syndrome. Very strange.
Joe has remained CMV negative for several weeks now. Yay! He has had 115 platelet transfusions and 32 units of blood since May 21. His appetite isn't too bad. And yes, he is thinking about new paint colors for his room, ordering new furniture, building an addition, and requesting that the room be named in his honor!
Jim and Jesse completed the Marrow Trek! Read their last Blog entry if you haven't already. They are truly amazing guys. THANK YOU Jim and Jesse for being such amazing friends!!!!!
~~~~~
Thank you 1st Uncle & Auntie, 2nd Uncle, and Albert for visiting!!!!! Joe was so happy to see each one of you.
Thank you to Uncle and Auntie Tzeng and LeeAnn for your visit. It was really nice to catch up with you.
Thank you Phyllis, Auntie & Uncle R.C. Lin, & Auntie Tzeng for the cards. They always brighten Joe's day.
Yoohoo, HANNAH (banana) HAPPY HAPPY 4th birthday!!!!!!
And congratulations to Sheena (Mareena) on being an Aunt!
The drama side of the weekend is that the "negative" culture result we received on Saturday was a bit premature. Those cultures did end up being positive after all. As a precaution, and because fellows like to cover their butt and order everything under the sun, on Sunday Joe had a CT of the chest, abdomen and pelvis. Nothing remarkable was found, except some improvement in Joe's lungs compared to the previous chest CT. An ultrasound of the neck was also ordered and performed on Monday. We're still not quite sure why it was ordered, but it gave Joe another excuse to visit the radiology department. Within five minutes of being in the waiting area, Joe had about ten people go and greet him. I'm sure the other patients were wondering what kind of celebrity was sitting before them! Again, nothing remarkable was found.
On Monday, Joe was also taken off of Daptomycin and started on Linezolid. Because Joe's WBC is so low, Linezolid seemed a better choice. Each day since the discovery of the bacteria, Joe has woken up with a fever. The fever generally lasts a few hours and then Joe is afebrile until the next morning. This morning was the first time that Joe woke up without a fever. Woohooo! Also, 21 hours after yesterdays culture, it was still negative. This is a good sign, and the huge smile that Joe's dad was sportin' all day is proof of that. So now, chemo could start as soon as tomorrow. For real this time.
Just like Joe's first round of induction chemotherapy, Joe will be getting cytarabine (Ara-C) and daunorubicin. The last round was a "7+3" regimen. Joe received cytarabine continuously for seven days (7). For the first three days Joe also received daunorubicin, the fifteen minute infusion that looks like cherry kool-aid (+3). This round will be shorter, a "5+2" regimen. So five continuous days of Ara-C, and daunarubicin the first two days.
Other interesting news. Joe's fingers have been peeling for a couple weeks now. It was very similar to when Joe started getting GVHD. Interestingly enough, some final results from Joe's last bone marrow biopsy showed that Joe still now has 5% donor in his marrow. So the peeling is definitely from GVHD. Now since the donor has survived all the post-transplant chemo Joe has had so far...how neat would be if it survived this next round as well, and blossomed! Nothing's impossible right? Something to think about. What is even more interesting and strange is that Joe's marrow went on to show 25% male. So what was the other 70%? It was x0. That is, a single x chromosome. We have no idea what this means...except that it does NOT mean that Joe has Turner Syndrome. Very strange.
Joe has remained CMV negative for several weeks now. Yay! He has had 115 platelet transfusions and 32 units of blood since May 21. His appetite isn't too bad. And yes, he is thinking about new paint colors for his room, ordering new furniture, building an addition, and requesting that the room be named in his honor!
Jim and Jesse completed the Marrow Trek! Read their last Blog entry if you haven't already. They are truly amazing guys. THANK YOU Jim and Jesse for being such amazing friends!!!!!
~~~~~
Thank you 1st Uncle & Auntie, 2nd Uncle, and Albert for visiting!!!!! Joe was so happy to see each one of you.
Thank you to Uncle and Auntie Tzeng and LeeAnn for your visit. It was really nice to catch up with you.
Thank you Phyllis, Auntie & Uncle R.C. Lin, & Auntie Tzeng for the cards. They always brighten Joe's day.
Yoohoo, HANNAH (banana) HAPPY HAPPY 4th birthday!!!!!!
And congratulations to Sheena (Mareena) on being an Aunt!
Saturday, August 18, 2007
And so the journey continues...
Yesterday, the bacteria found in Joe's blood stream was determined to be VRE (vancomycin-resistant enterococcus) and Staphylococcus epidermidis. Traditionally, VRE has been difficult to treat and can be really dangerous in patients who are immuno-compromised. Fortunately, times have changed and lots of advancements have been made. There are now a few drugs that can be used to effectively treat VRE. Joe was put on daptomycin a couple days ago with the thought that he probably had VRE. Dapto is also effective for treating the staph. So far Joe's fevers have been trending down, so it seems that he is responding well to the drug.
Also yesterday, Joe's Pittsburgh docs spoke with his assigned Minnesota doc. Looking at the 5% of "stuff" from the bone marrow biopsy, blasts were still present. Since Minnesota will be responsible for Joe's next transplant, Joe's doctors here wanted to consult with them about what to do next so that there would be no chance of compromising Joe's opportunity to go up there. The doctor in Minnesota was really encouraged by Joe's response to the first round of induction chemo. He also said he would be more comfortable if everything was wiped out. So Joe will be getting another round of chemo. The same drugs will be used, since Joe did so well the first time, but this time it will be a "5+2" regimen rather than a "7+3."
So, Joe will not be getting kicked out any time soon. Poor guy. The plan is to get rid of the bacterica in the blood stream first. Cultures from yesterday came back negative. So if another set of cultures returns negative, Joe could begin chemo as soon as tomorrow.
Yesterday was a really overwhelming day as we were getting bit and pieces of information here and there. Joe needed blood and platelet transfusions. He was a bit short of breath in the morning and needed to use some oxygen for a few hours. Joe had chills for about 20 minutes after his first bag of platelets. We got information about the bacteria in the bloodstream. All kinds of tests were ordered. It was just a crazy day. Fortunately, by afternoon we received a lot of answers and a plan for the next week. After some frustration, we're feeling more renewed and ready to continue fighting. But you know, I REALLY wish that Joe could just get out of the hospital and be free! He has been through so very much. Being a patient is so tough. Besides all of the obvious sacrifices, you sacrifice your privacy and your dignity. It is really a crazy life. I admire Joe and all the other people going through similar things so very much.
Here's some happy news. Joe's brother is visiting for the weekend. It is a short visit, but so good for both of them! Also, two of Joe's uncles and an aunt are visiting. That has been a real treat.
~~~~~~
Thank you Evonne, Thomas, & Leah for the card!
Thank you Dr. & Mrs. Borst for the postcard! It was so fun to hear about your travels.
Also yesterday, Joe's Pittsburgh docs spoke with his assigned Minnesota doc. Looking at the 5% of "stuff" from the bone marrow biopsy, blasts were still present. Since Minnesota will be responsible for Joe's next transplant, Joe's doctors here wanted to consult with them about what to do next so that there would be no chance of compromising Joe's opportunity to go up there. The doctor in Minnesota was really encouraged by Joe's response to the first round of induction chemo. He also said he would be more comfortable if everything was wiped out. So Joe will be getting another round of chemo. The same drugs will be used, since Joe did so well the first time, but this time it will be a "5+2" regimen rather than a "7+3."
So, Joe will not be getting kicked out any time soon. Poor guy. The plan is to get rid of the bacterica in the blood stream first. Cultures from yesterday came back negative. So if another set of cultures returns negative, Joe could begin chemo as soon as tomorrow.
Yesterday was a really overwhelming day as we were getting bit and pieces of information here and there. Joe needed blood and platelet transfusions. He was a bit short of breath in the morning and needed to use some oxygen for a few hours. Joe had chills for about 20 minutes after his first bag of platelets. We got information about the bacteria in the bloodstream. All kinds of tests were ordered. It was just a crazy day. Fortunately, by afternoon we received a lot of answers and a plan for the next week. After some frustration, we're feeling more renewed and ready to continue fighting. But you know, I REALLY wish that Joe could just get out of the hospital and be free! He has been through so very much. Being a patient is so tough. Besides all of the obvious sacrifices, you sacrifice your privacy and your dignity. It is really a crazy life. I admire Joe and all the other people going through similar things so very much.
Here's some happy news. Joe's brother is visiting for the weekend. It is a short visit, but so good for both of them! Also, two of Joe's uncles and an aunt are visiting. That has been a real treat.
~~~~~~
Thank you Evonne, Thomas, & Leah for the card!
Thank you Dr. & Mrs. Borst for the postcard! It was so fun to hear about your travels.
Wednesday, August 15, 2007
6 weeks
Joe has now been in the hospital for 6 weeks. His previous stay, separated from this one by one blissful week, was 5 and a half weeks. We are so ready for Joe to be booted. Being on T-7 for so long is really rough. You see too much sadness when you are on a floor like this for an extended period.
Joe is hanging tough, but causing all kinds of trouble as usual. We were REALLY hoping this would be the week Joe got kicked out. Unfortunately, yesterday morning, Joe got a fever. It wasn't too high, but concerning since Joe had been afebrile for two weeks. By afternoon the fever was gone and Joe was feeling much better. Then evening came. Joe was so tired, he slept like a baby. A midnight check showed the he had another fever, 102.7. By this morning it was 103.3. So frustrating! Well, we discovered the cause is some type of infection. Cultures drawn yesterday were positive for two kinds of growth. In the next day or two the doctors will be able to determine what that growth is exactly and target it. Obviously the broad spectrum of drugs Joe is on now isn't working for what appeared. The other thing is that if Joe's line is shown to be infected, it'll be pulled.
Joe's bone marrow biospy results are still rolling in. So far we know that the chemo did what it was supposed to do by knocking everything down. Joe's marrow went from being 100% cellular to 5% cellular. The question yet to be answered is what all is in that 5%, and what will appear as Joe's marrow begins to recover.
Apologies if this entry doesn't make a lot of sense. My brain currently feels like it is on Mars. I've been joking with Joe that when he gets medications, I can feel it!
Thank you for continued support and prayers.
For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
~Romans 8:24-25
Joe is hanging tough, but causing all kinds of trouble as usual. We were REALLY hoping this would be the week Joe got kicked out. Unfortunately, yesterday morning, Joe got a fever. It wasn't too high, but concerning since Joe had been afebrile for two weeks. By afternoon the fever was gone and Joe was feeling much better. Then evening came. Joe was so tired, he slept like a baby. A midnight check showed the he had another fever, 102.7. By this morning it was 103.3. So frustrating! Well, we discovered the cause is some type of infection. Cultures drawn yesterday were positive for two kinds of growth. In the next day or two the doctors will be able to determine what that growth is exactly and target it. Obviously the broad spectrum of drugs Joe is on now isn't working for what appeared. The other thing is that if Joe's line is shown to be infected, it'll be pulled.
Joe's bone marrow biospy results are still rolling in. So far we know that the chemo did what it was supposed to do by knocking everything down. Joe's marrow went from being 100% cellular to 5% cellular. The question yet to be answered is what all is in that 5%, and what will appear as Joe's marrow begins to recover.
Apologies if this entry doesn't make a lot of sense. My brain currently feels like it is on Mars. I've been joking with Joe that when he gets medications, I can feel it!
Thank you for continued support and prayers.
For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
~Romans 8:24-25
Friday, August 10, 2007
bmbx #11
Joe survived his 11th bone marrow biopsy. It was done by a senior fellow, and it seems he did quite a good job. At some point next week, we'll get the results. Obviously we're praying for REMISSION.
Joe continues to be doing well. He has been breathing on room air for almost three days now. Still no fevers. And the pain has been under control. Joe is antsy to go home. The doctors haven't been very open about when this might be a possibility. We're hoping for the beginning of next week. We shall see.
I went home a couple days ago. I have a story of course. I'm starting to believe that Joe causes trouble on purpose, just so that I have something interesting to blog. Joe was walking around with his IV pole (Khemo Von Oelhoffen. Remember?) Khemo gained a LOT of weight a couple months ago. He'd gotten rather top heavy. On Wednesday, while I was home, Joe was walking around the room with Khemo. Wouldn't you know, Khemo lost his balance and tumbled over. Fortunately, he tumbled onto a big chair in the corner, Joe did not go tumbling after, and Joe's line stayed intact. Joe just got a tiny blood spot on one of his fingers. Khemo...his heads is a bit crooked now. Khemo has also lost some weight since his incident. He looks pretty good. There's always a story, eh?
That's it for today. Thanks for the continued prayers!
~~~~~
Thank you Shelley for the card. :)
Thank you Louison & Ping for the fun video. Joe hasn't been able to see it yet, but he will!
Joe continues to be doing well. He has been breathing on room air for almost three days now. Still no fevers. And the pain has been under control. Joe is antsy to go home. The doctors haven't been very open about when this might be a possibility. We're hoping for the beginning of next week. We shall see.
I went home a couple days ago. I have a story of course. I'm starting to believe that Joe causes trouble on purpose, just so that I have something interesting to blog. Joe was walking around with his IV pole (Khemo Von Oelhoffen. Remember?) Khemo gained a LOT of weight a couple months ago. He'd gotten rather top heavy. On Wednesday, while I was home, Joe was walking around the room with Khemo. Wouldn't you know, Khemo lost his balance and tumbled over. Fortunately, he tumbled onto a big chair in the corner, Joe did not go tumbling after, and Joe's line stayed intact. Joe just got a tiny blood spot on one of his fingers. Khemo...his heads is a bit crooked now. Khemo has also lost some weight since his incident. He looks pretty good. There's always a story, eh?
That's it for today. Thanks for the continued prayers!
~~~~~
Thank you Shelley for the card. :)
Thank you Louison & Ping for the fun video. Joe hasn't been able to see it yet, but he will!
Wednesday, August 08, 2007
1000 Cranes!
In a true act of love, patience, and dedication, my dear cousin Peichen folded 1000 paper cranes as a "good luck," "dreams come true," "get well soon" gift for Joe. How cool is that? The photo doesn't do the cranes justice. It is absolutely amazing! Thank you Peichen! It is beautiful, and the heart behind it is so very touching.
Today, Joe is doing really well. Everything felt better today, so that is a huge praise. We just keep praying for more days like this and a biopsy result that shows that Joe is in remission.
Happy Taiwanese Father's Day (Ba Ba) to all the daddies out there!
~~~~~
Congratulations to Kitty & Anthony on their new baby boy.
Thank you to:
Lauren & Eric,
Gretchen,
Jocelyn & Peter,
Min-Hsiung & Chu-Yuen Hu
Auntie & Uncle Teh
for the cards. You put smiles on our faces!
Thank you:
Joanna
Uncle & Auntie
Pei-chen
for your sweet and encouraging messages. You really touched us.
Thank you IR Linda for the very appropriate gift. You are so cool!
~~~~~
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
~Romans 8:18
Tuesday, August 07, 2007
Done with chemo.
Joe's finished up his induction chemo on Saturday afternoon. He hasn't experienced any fevers since chemo started, which has been wonderful.
On Friday evening, Joe got yelled at. I went to take a shower. As usual, I gave Joe my string of lovingly nagging instructions (i have my cell phone, call the nurse if you need anything, behave yourself, etc., etc., etc.) Despite all of this, Joe thought that it would be a good idea to go brush his teeth while I was gone. This would have been all fine and dandy...if Joe hadn't just received morphine for pain. He ended up getting a little woozy and fell. Fortunately, Joe only has a few bruises on his arm to show for it, but because he "kinda grazed his head" and had low platelet counts, the dumbhead (i say that with all the love in the world) was sent down for a head CT (just in case.) It made for quite an eventful evening. The CT came back negative, and Joe earned a blue bracelet (granted to patients who are a fall risk.) I think that everyone knew it was a one time deal though, because Joe didn't get the bright yellow magnet outside of his door, or a special colored dot by his name on the patient board. Joe has apologized profusely since the incident.
On Saturday morning, Joe had a chest CT done. None of us really thought about it much. All of the other scans were so unexpectedly ugly. Well, not this time. For the first time, Joe's chest scan showed significant improvement. WOOHOOOOOO!!!!! We were thrilled with this news. Joe's breathing has been significantly better as well. He still needs oxygen, but not around the clock.
Since the chemo ended, Joe has been experiencing bouts of nausea. It generally happens around mealtimes. Joe will feel hungry, but as soon as he starts eating he gets nauseated and loses his appetite. Could this have to do with the hospital food? Maybe. Joe is eating - just not a whole lot.
Joe is still experiencing pain. It is the one thing that isn't getting too much better. Joe has all kinds of pain meds that he can request. The doctors have told him not to worry about becoming an addict. They won't let that happen. And getting some relief from pain is far better than writhing in pain. Some parts of the day are ok...other parts of the day are super miserable. So pray for no pain!
On Friday, Joe will be getting bone marrow biopsy #11. We are so hopeful that the results will show that Joe is in remission. Clinically, Joe has shown such improvement we have all the more reason to be hopeful. Joe tentatively has an appointment in Minnesota at the end of August. The results of this next bone marrow will give us more answers as to what the next few months will look like.
Lots of stuff is happening! As always, we appreciate the continued love and prayers so very much.
I have some thank yous...but I forgot my list, so I'll post those another time.
On Friday evening, Joe got yelled at. I went to take a shower. As usual, I gave Joe my string of lovingly nagging instructions (i have my cell phone, call the nurse if you need anything, behave yourself, etc., etc., etc.) Despite all of this, Joe thought that it would be a good idea to go brush his teeth while I was gone. This would have been all fine and dandy...if Joe hadn't just received morphine for pain. He ended up getting a little woozy and fell. Fortunately, Joe only has a few bruises on his arm to show for it, but because he "kinda grazed his head" and had low platelet counts, the dumbhead (i say that with all the love in the world) was sent down for a head CT (just in case.) It made for quite an eventful evening. The CT came back negative, and Joe earned a blue bracelet (granted to patients who are a fall risk.) I think that everyone knew it was a one time deal though, because Joe didn't get the bright yellow magnet outside of his door, or a special colored dot by his name on the patient board. Joe has apologized profusely since the incident.
On Saturday morning, Joe had a chest CT done. None of us really thought about it much. All of the other scans were so unexpectedly ugly. Well, not this time. For the first time, Joe's chest scan showed significant improvement. WOOHOOOOOO!!!!! We were thrilled with this news. Joe's breathing has been significantly better as well. He still needs oxygen, but not around the clock.
Since the chemo ended, Joe has been experiencing bouts of nausea. It generally happens around mealtimes. Joe will feel hungry, but as soon as he starts eating he gets nauseated and loses his appetite. Could this have to do with the hospital food? Maybe. Joe is eating - just not a whole lot.
Joe is still experiencing pain. It is the one thing that isn't getting too much better. Joe has all kinds of pain meds that he can request. The doctors have told him not to worry about becoming an addict. They won't let that happen. And getting some relief from pain is far better than writhing in pain. Some parts of the day are ok...other parts of the day are super miserable. So pray for no pain!
On Friday, Joe will be getting bone marrow biopsy #11. We are so hopeful that the results will show that Joe is in remission. Clinically, Joe has shown such improvement we have all the more reason to be hopeful. Joe tentatively has an appointment in Minnesota at the end of August. The results of this next bone marrow will give us more answers as to what the next few months will look like.
Lots of stuff is happening! As always, we appreciate the continued love and prayers so very much.
I have some thank yous...but I forgot my list, so I'll post those another time.
Thursday, August 02, 2007
Day 5 & 6
Joe seems to be doing a bit better each day. Since the chemo started, Joe has had no fevers. Starting yesterday, Joe felt that his breathing was much better. Before, Joe would get winded just standing up. Today, Joe felt comfortable enough to take off his oxygen when going to the restroom. Considering all that he is going through, Joe is doing quite well. We are hoping and praying that this continues and Joe is able to leave the hospital for a bit in the near future.
In other news, Joe and I have jumped on the Harry Potter bandwagon. We're reading through book seven together. Joe reads a few chapters, and then I read a few chapters when Joe is in Benadryl heaven. It's been fun.
~~~~~
A.M. & A.D, thank you so much for the card. You have been so faithful in your support. :)
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