Wednesday, December 26, 2012 - Treatment #4
Even though treatment took the same amount of time that it normally does, it felt like it went by fast. Maybe it was because we were all tired from our Christmas activities. Or maybe it was because there weren't a lot of people there when we first got there. Or maybe it was because our poor nurse, Lily, was the only one on our floor and was taking care of about 15 patients running around like a chicken with her head cut off. Who knows! But everything went smoothly and strangely, I ended up having a great day.
We got to Northwestern a little before 9am, so we parked the car and went in together rather than having Mrs. G. drop us off at the front door. Donny and his mom then went up to the 21st floor and I headed over to Children's Hospital to visit my friend whose newborn son was having open heart surgery to fix two holes in his heart. Usually the first hour we are at Northwestern, we are waiting for Donny to get his blood drawn and for the results to come back, so I knew that if I went over to Children's right away, I wouldn't miss the doctor when he came to see Donny.
Children's Hospital is truly a magical place with all the colors, fish tanks and interactive elevators that make noises when you press the buttons on the walls. I almost lost it in the lobby because there was a Dad walking with his son, who was probably around 9 years old. The boy was wearing a robe and winter cap, so I knew he was the little patient. It just broke my heart. And once again, I thought to myself, I don't know what I'd do if this was my son. And up I went to go see my friend who was trying so hard (and doing a great job of it) to keep herself together while her son had surgery.
About an hour passed and I left to go back to Donny. It was actually perfect timing because Donny had just finished getting his blood drawn when I arrived. We waited for about 10 minutes and then got called back to the treatment room. Since it was the day after Christmas, the staff was short and we were put in a double room again. I actually think it was the same double room we were put in last treatment, only this time, we were on the smaller side of the room. There was already another gentleman being treated on the bigger side. If you refer to my last post where I said I was annoyed by the girl who was sitting so far back in the curtain she kept looked back at me when I laughed, I now know why she was sitting so far back. The small side can barely accommodate three people and in order for the curtain to not hang over everyone, you had to move the chair back to hold the curtain away. The man on the other side finished his treatment and left so we were able to move the curtain. But then, Mrs. G. had the brilliant idea to ask the nurse if we could move to the bigger side, so we got to move and be a little more comfortable.
After the move, it was smooth sailing. The nurse came and went as she needed, to administer the "push" drugs and later to hook Donny up to the IV. Apparently we weren't scheduled to see Dr. P. (unbeknown to me because my schedule said we were supposed to see him). But Donny's throat and tongue has been sore and has white stuff on it, so we asked him to come see us anyway. Especially because he didn't see Donny during the last treatment.
Dr. P. took a look in his mouth and confirmed what we thought. Poor Donny has Thrush: a yeast infection of the mucus membrane lining the mouth and tongue. Basically, thrush is a yeast infection in your mouth, which for healthy people isn't really much of a big deal and can go away naturally. However, for people with a compromised immune system, it can become very painful. So, Dr. P. told Donny to start taking the medication that he just took Donny off of in addition to the swish and swallow medicine. He said that Donny's liver enzymes are still a little high, but only by about 2 points, so it isn't anything to worry over. He said two weeks of this medication shouldn't negatively affect Donny's liver too much. We'll just have to keep an eye on those numbers over the next couple of weeks. By Friday, Dec. 28, Donny said he was feeling much better and that his tongue isn't white anymore. So the added medication must be working.
Donny gets progressively better each day and his strength and positive attitude are truly inspiring. He has his CT Scan and PET Scan scheduled for Friday, January 4 to check if the chemo has been working. We find out the results on January 8 when we meet with Dr. P. again. Please say a prayer that the treatment has been working. I am fairly confident that it has been working, but just in case, a prayer always helps! If treatment isn't successful, Donny's chemo will be elevated from 4 drugs to 6 or 7 drugs and will be much more difficult to function with. So say a prayer, keep your fingers crossed, or whatever you do to bring good health, because we need it right now.
Have a safe and Happy New Year!!!
Monday, December 31, 2012
Monday, December 24, 2012
Chemo Treatment #3
Tuesday, December 11
So you'd think since this was the 3rd treatment, it would have become routine by now. Nope. But that's ok, it's funny how things work out. Donny's brother, Michael, ended up coming with us this time. And I was grateful because he unknowingly prepared me for the phone call I received from Dr. P. later in the week. Mrs. G picked Donny and I up at our apartment and drove us down as usual, but Michael came back with us into the treatment room while Mrs. G waited in the waiting room and filled all Donny's prescriptions for him.
We went back into the treatment room, which was on the other side of the floor. Normally we are on the far south side of the building, but this time we went into a room on the far north side. We noticed this was different but just shrugged it off because our appointment this week was at 3 pm instead of 2:30 pm like the other two appointments. The nurse and murse (male nurse...our first one!), were different than we have normally had. So all around, we had different people coming to treatment, different nurses, a different appointment time and a different room. It wasn't until they had to move us to a different room about 2 hours later that we found out why everything was different this time. Our regular head nurse, Cheryl, was out sick, so we were transferred to a different group for the day. That explained it...
Because Donny is in a clinical trial we have to wait for his lab results to come back before we can begin treatment. Side note - Donny has to get blood drawn before EVERY treatment to make sure all his blood counts look ok and that he isn't sick. Normally the results come in back within a half hour. This time however, took over an hour for some reason. So we started an hour and a half later than we normally have the past two treatments.
Finally, the nurse comes in with the medicine and they begin hooking Donny up for treatment. I noticed that they hooked up a different bag this time. It was smaller and a little murky and was hooked up right away. Normally a smaller bag with fluids is hooked up with the last dose of chemo. My Aunt who went through a lot of medical issues with my Uncle has told me over and over to ask questions. Question the nurses, doctors and anyone else doing something you're not sure of. She told me it's always better to ask questions now and make them double check or explain to you rather than have them administer something incorrect and have Donny get sick. SO, I had a mini freak out in my head but outwardly kept it together and asked the nurse what he was hooking Donny up to. Totally nonchalantly he said, "Oh, this is just some additional anti-nausea medicine. We increase the dosage over time because the effects of the treatment are cumulative." Well gee, thanks buddy. I'm so thankful that you're changing up meds on us and acting like it's no big deal. Up until this point, our nurses have explained each and every medicine that goes into Donny's body. What if Donny has a reaction or something else and I didn't know they changed anti-nausea medications? So there I went asking the nurse all these questions: did Dr. P. prescribed this, is this done with all patients, are there side effects, etc. When I was fully reassured, the nurse continued setting Donny up and his treatment began.
After the first two drugs were administered or 'pushed' as they say, the nurse came back in and hooked the last medications to Donny's IV. They also mentioned that because it was late (it was already around 5:30pm) that we might have to change rooms. Lo and behold, about 15 minutes later, another nurse came in and helped us get our things together to make the move. As we were walking out she mentioned, "Since it's late and a lot of the nurses have gone home, we're putting you in a double room."
Now, I feel like a spoiled brat because we've had our own room thus far, so when I say this, please don't roll your eyes. But we were watching a movie in the other room, we could control the heat/air ourselves, and we could talk privately. So knowing that we now couldn't finish the movie or talk really, it was a bit of a shock. I didn't even know that they had double rooms. And when we got to the room, the other people were already in there. The man getting treatment weighed about 100 lbs soaking wet and looked aweful which really didn't help my positive mental attitude through this whole thing. And he had two other people with him, so the room with us added to it was jam packed. The one girl was completely on our side under the curtain, it was a little annoying because her head was pretty much right next to my chair and she kept looking back at me if I laughed loudly. But again, PMA (postive mental attitude) if that's the worst we encounter, then I'm ok with it. Some places have communal rooms that I would not want to deal with. So we are pretty spoiled with the single or double room.
But this is why I said earlier that fate has its ways of working out. We had never been moved before, let alone been put in a double room before. So again, it threw off our routien a bit. Actually, it threw it off a lot. And if my routien had been thrown off, I can imagine what Mr. G. would have thought if this was his first time coming to treatment. Granted, this was Michael's first time coming to treatment, but Michael is in medical school and has been in many hospitals before. If Mr. G. had come, I think he would have been a little freaked out and would have been worried and upset with the double room because we were a little jammed in there. Even Mrs. G. said to me when we finally got done with treatment that she was she wasn't there for the move because it would have thrown her off too. And I have to admit, I was not happy with the situation, especially beacuse the new room we were in was freezing cold! But I couldn't do anything because I didn't want to get Donny worked up so I tried to stay calm.
As the move was going on, the nurse brought us the results of Donny's blood work. Again, another weird way fate played its course. Michael, having just graduated Med School, took the sheet and was explaining all the blood work results to us. He told us that Donny's white blood cell count was pretty much non-existent, which we already knew. But then, he slightly furrowed his eyebrows and cocked his head to the right and said, "Hmm...your liver enzimes are a little off. But it's nothing to be alarmed about. Just keep an eye on that." He then looked up at us, nodded his head and said everything else looks good. I didn't detect any concern in his expression, so I mentally noted his comments and put the results away in my folder.
So the fate part, right...skipping ahead now to Thursday, December 13 at about 1pm, Dr. P. called me while I was at work. Every time my phone rings now during work I jump to answer it because usually it's a doctor or nurse calling about Donny. So I grabbed my phone and ran into the nearest conference room to answer (I don't like everyone to hear my conversations.) Dr. P. apologized for not being able to see us during treatment on Tuesday and asked how Donald was feeling (he calls Donny Donald, it makes me laugh a little because no one calls Donny by his full name). I talked to him shortly about Donny and then he said, "Ok, well I was calling to tell you that we are going to need to change one of Donald's medications. All of his numbers look really good. Obviously his white blood count is still low, but it hasn't changed too much since last time so that's ok. But there is one thing that we often see with the anti-fungal medication Donald is on. And that would be a slight change in the liver enzimes." My mom has been hospitalized in the past due to a spike in her liver enzimes and it was scary. So thank God Michael was with us for treament and forwarned us about the change in enzimes or else I think I would have had a panic attack at work.
After treatment was done, Donny was feeling really sick. Our appointment started late and he had not eaten dinner so I know that's why. He's so stubborn because the second he eats, he feels better, and I kept offering to go to the cafeteria to get him food but he kept refusing. I just have to start bringing food for him from now on. When we got home he sat right in his recliner and laid there. But I was starving because I hadn't eaten dinner either and it was past 8pm. So after asking Donny what I could get him to eat (I pretty much offered to make him everything in our pantry) and he kept refusing everything, I made a bowl of ceral and sat next to him in the living room. About 5 spoonfuls into my meal, Donny looked at me and asked, "Maybe could you make me some pasta?" And of course, after he ate, he felt much better. I get a stomach ache when I have Tylenol in my stomach without food, so I can't image how he feels after Tylenol, 4 different chemo drugs and 2 anti-nausea medicines in his system. Poor guy. But after all is said and done he remains so postive through it all that it makes everything better.
Since I've delayed posting this so much, we have treatment again in two days, on December 26. Hopefully all goes well. And then on January 4, Donny gets all his scans done again to check his progress!! I can't believe it's been two months already. These really have been the longest two months of my life that somehow seem to have flown by. I can't beleive it.
Merry Christmas everyone!! I'll try to be more prompt with my next post!
So you'd think since this was the 3rd treatment, it would have become routine by now. Nope. But that's ok, it's funny how things work out. Donny's brother, Michael, ended up coming with us this time. And I was grateful because he unknowingly prepared me for the phone call I received from Dr. P. later in the week. Mrs. G picked Donny and I up at our apartment and drove us down as usual, but Michael came back with us into the treatment room while Mrs. G waited in the waiting room and filled all Donny's prescriptions for him.
We went back into the treatment room, which was on the other side of the floor. Normally we are on the far south side of the building, but this time we went into a room on the far north side. We noticed this was different but just shrugged it off because our appointment this week was at 3 pm instead of 2:30 pm like the other two appointments. The nurse and murse (male nurse...our first one!), were different than we have normally had. So all around, we had different people coming to treatment, different nurses, a different appointment time and a different room. It wasn't until they had to move us to a different room about 2 hours later that we found out why everything was different this time. Our regular head nurse, Cheryl, was out sick, so we were transferred to a different group for the day. That explained it...
Because Donny is in a clinical trial we have to wait for his lab results to come back before we can begin treatment. Side note - Donny has to get blood drawn before EVERY treatment to make sure all his blood counts look ok and that he isn't sick. Normally the results come in back within a half hour. This time however, took over an hour for some reason. So we started an hour and a half later than we normally have the past two treatments.
Finally, the nurse comes in with the medicine and they begin hooking Donny up for treatment. I noticed that they hooked up a different bag this time. It was smaller and a little murky and was hooked up right away. Normally a smaller bag with fluids is hooked up with the last dose of chemo. My Aunt who went through a lot of medical issues with my Uncle has told me over and over to ask questions. Question the nurses, doctors and anyone else doing something you're not sure of. She told me it's always better to ask questions now and make them double check or explain to you rather than have them administer something incorrect and have Donny get sick. SO, I had a mini freak out in my head but outwardly kept it together and asked the nurse what he was hooking Donny up to. Totally nonchalantly he said, "Oh, this is just some additional anti-nausea medicine. We increase the dosage over time because the effects of the treatment are cumulative." Well gee, thanks buddy. I'm so thankful that you're changing up meds on us and acting like it's no big deal. Up until this point, our nurses have explained each and every medicine that goes into Donny's body. What if Donny has a reaction or something else and I didn't know they changed anti-nausea medications? So there I went asking the nurse all these questions: did Dr. P. prescribed this, is this done with all patients, are there side effects, etc. When I was fully reassured, the nurse continued setting Donny up and his treatment began.
After the first two drugs were administered or 'pushed' as they say, the nurse came back in and hooked the last medications to Donny's IV. They also mentioned that because it was late (it was already around 5:30pm) that we might have to change rooms. Lo and behold, about 15 minutes later, another nurse came in and helped us get our things together to make the move. As we were walking out she mentioned, "Since it's late and a lot of the nurses have gone home, we're putting you in a double room."
Now, I feel like a spoiled brat because we've had our own room thus far, so when I say this, please don't roll your eyes. But we were watching a movie in the other room, we could control the heat/air ourselves, and we could talk privately. So knowing that we now couldn't finish the movie or talk really, it was a bit of a shock. I didn't even know that they had double rooms. And when we got to the room, the other people were already in there. The man getting treatment weighed about 100 lbs soaking wet and looked aweful which really didn't help my positive mental attitude through this whole thing. And he had two other people with him, so the room with us added to it was jam packed. The one girl was completely on our side under the curtain, it was a little annoying because her head was pretty much right next to my chair and she kept looking back at me if I laughed loudly. But again, PMA (postive mental attitude) if that's the worst we encounter, then I'm ok with it. Some places have communal rooms that I would not want to deal with. So we are pretty spoiled with the single or double room.
But this is why I said earlier that fate has its ways of working out. We had never been moved before, let alone been put in a double room before. So again, it threw off our routien a bit. Actually, it threw it off a lot. And if my routien had been thrown off, I can imagine what Mr. G. would have thought if this was his first time coming to treatment. Granted, this was Michael's first time coming to treatment, but Michael is in medical school and has been in many hospitals before. If Mr. G. had come, I think he would have been a little freaked out and would have been worried and upset with the double room because we were a little jammed in there. Even Mrs. G. said to me when we finally got done with treatment that she was she wasn't there for the move because it would have thrown her off too. And I have to admit, I was not happy with the situation, especially beacuse the new room we were in was freezing cold! But I couldn't do anything because I didn't want to get Donny worked up so I tried to stay calm.
As the move was going on, the nurse brought us the results of Donny's blood work. Again, another weird way fate played its course. Michael, having just graduated Med School, took the sheet and was explaining all the blood work results to us. He told us that Donny's white blood cell count was pretty much non-existent, which we already knew. But then, he slightly furrowed his eyebrows and cocked his head to the right and said, "Hmm...your liver enzimes are a little off. But it's nothing to be alarmed about. Just keep an eye on that." He then looked up at us, nodded his head and said everything else looks good. I didn't detect any concern in his expression, so I mentally noted his comments and put the results away in my folder.
So the fate part, right...skipping ahead now to Thursday, December 13 at about 1pm, Dr. P. called me while I was at work. Every time my phone rings now during work I jump to answer it because usually it's a doctor or nurse calling about Donny. So I grabbed my phone and ran into the nearest conference room to answer (I don't like everyone to hear my conversations.) Dr. P. apologized for not being able to see us during treatment on Tuesday and asked how Donald was feeling (he calls Donny Donald, it makes me laugh a little because no one calls Donny by his full name). I talked to him shortly about Donny and then he said, "Ok, well I was calling to tell you that we are going to need to change one of Donald's medications. All of his numbers look really good. Obviously his white blood count is still low, but it hasn't changed too much since last time so that's ok. But there is one thing that we often see with the anti-fungal medication Donald is on. And that would be a slight change in the liver enzimes." My mom has been hospitalized in the past due to a spike in her liver enzimes and it was scary. So thank God Michael was with us for treament and forwarned us about the change in enzimes or else I think I would have had a panic attack at work.
After treatment was done, Donny was feeling really sick. Our appointment started late and he had not eaten dinner so I know that's why. He's so stubborn because the second he eats, he feels better, and I kept offering to go to the cafeteria to get him food but he kept refusing. I just have to start bringing food for him from now on. When we got home he sat right in his recliner and laid there. But I was starving because I hadn't eaten dinner either and it was past 8pm. So after asking Donny what I could get him to eat (I pretty much offered to make him everything in our pantry) and he kept refusing everything, I made a bowl of ceral and sat next to him in the living room. About 5 spoonfuls into my meal, Donny looked at me and asked, "Maybe could you make me some pasta?" And of course, after he ate, he felt much better. I get a stomach ache when I have Tylenol in my stomach without food, so I can't image how he feels after Tylenol, 4 different chemo drugs and 2 anti-nausea medicines in his system. Poor guy. But after all is said and done he remains so postive through it all that it makes everything better.
Since I've delayed posting this so much, we have treatment again in two days, on December 26. Hopefully all goes well. And then on January 4, Donny gets all his scans done again to check his progress!! I can't believe it's been two months already. These really have been the longest two months of my life that somehow seem to have flown by. I can't beleive it.
Merry Christmas everyone!! I'll try to be more prompt with my next post!
Subscribe to:
Posts (Atom)