Treatment #8 - February 19, 2013
After seven treatments, treatment number eight was the same old routine. Mrs. G. picked Donny and I up around 1:15pm and took us downtown to the Galter Pavillion. After the blood draw, we got called back to the treatment room where the head nurse, Cheryl, asked us about Donny's latest symptoms and addressed any questions we had.
Donny's coughing before he was diagnosed was unlivable. He literally coughed no matter what he did. He walked to the kitchen, coughed, sat in his chair, coughed, rolled over in bed, coughed. The only time he didn't cough was when his adrenalin was pumping a little, like when he drove or flew in a helicopter (on our honeymoon). But after each treatment, the coughing has gotten less and less, to a point where it was almost unnoticeable - until the last two weeks. While occasional coughing in healthy human beings isn't something to worry over, coughing in someone who is on Bleomycin is something to worry about. Bleomycin, 1 of the 4 drugs Donny is on, is the drug that many athletes, most famously Lance Armstrong, refuse to take as a treatment option because it can cause different forms of lung damage, most commonly known as Pulmonary Toxicity. And coughing is the first symptom of pulmonary toxicity.
When Cheryl came in to ask us Donny's latest symptoms, we told her about the increase in coughing. She was immediately concerned, not in a freak out kind of way, but in an inquisitive way, where she asked a lot of follow up questions and made sure to tell Dr. P. about it. Naturally, Dr. P. wanted to see us after hearing this news. We usually see him every other treatment, but with something like this, he came over to see Donny. Dr. P. was not worried because Donny's cough isn't a dry cough. But still, Dr. P. said that Donny would not receive the Bleomycin today and that he wanted to do some precautionary tests. So Donny had to get a chest X-ray immediately after treatment and we have to schedule a pulmonary exam next week some time.
After we got home, Donny felt like crap and fell asleep for a couple of hours. But of course, the Hawks were on, so he woke up for that and managed to scrounge up enough energy to cheer for them til the end.
Tuesday, February 19, 2013
Tuesday, February 12, 2013
The Beginning of the End
Treatment #7 - February 5, 2013
Last treatment marked the half way point (knock on wood). So this week marked the official beginning of the end. I have to say, I was dreading treatment this time. (Poor Donny, I told him that and he looked at me like I had two heads and asked, "How do you think I feel?") At first I didn't know why I was so anxious on Tuesday, but then I realized it was dread - a different feeling than anxiety. With anxiety, I'm restless and lack concentration, and want to get treatment over with.
Dread is a whole new feeling for me. If I were an ostrich, I would have stuck my head in the ground and happily stayed there until Donny came home. I just didn't want this treatment to get here. And I know it's because the last treatment was bad. Donny was the sickest he's been since beginning this process. Last treatment was the first time he was actually nauseous for more than one day. And it was the first time that taking the extra anti-nausea pills didn't help. So that was miserable for Donny and I hated watching it.
If you've ever taken care of someone who is ill, and no medicine or treatment helps them, then you know how I feel. It's a helpless feeling watching someone suffer and wanting so badly to make them better, even though you know you can't. And what's worse in Donny's case, is that I can't even do anything to make him more comfortable; like fluff his pillow or get him water. He feels like shit no matter what and I can't do a darn thing about it. But then a week goes by and Donny is, although tired, back to feeling OK. So that's why I was dreading this treatment. He did so great last week after the awful week, that I just didn't want to go back to the bad. It's a total mind game for me. One week is horrible and one week is normal.
Treatment went by fast again. We talked to our head nurse, Cheryl, most of the time. She was cracking me up telling us how she hates chocolate. "I'm already chocolate, I don't need to eat any of it." she told us. And Donny actually felt ok when we got home. I think it's because he was eating candy the whole time. The nurse cleans out his port with a saliene solution in between pushes and after treatment. And when they do that, he gets a really bad, iron/salt taste in his mouth. Last week, when Donny came in to get his blood work done, he told the nurse this and she said, "Try eating Lemonheads. The sour taste over powers the nasty salt taste. We always have Lemonheads at the clinic. Just ask the front desk next time." So this time, although Donny did come prepared with some Sour Patch Kids, I went to the front desk and asked for some Lemonheads. And thanks to the Imerman Angels, Northwestern has an entire cabinet full of them! Take a look:
So, back to the point, Donny ate his Sour Patch Kids before, during and after the treatment was done, so I think the sugar helped. If you think about it, Donny eats lunch around 11:30am, comes home from work, goes to treatment, has blood drawn, gets pumped full of drugs, including Tylenol, 4 chemo drugs, 2 anti-nausea drugs, and doesn't get home until around 6:30 or 7:00pm. Nevermind the drugs Donny receives, any person would be famished by 7pm if they hadn't eaten since 11:30am. So I think having a little bit of sugar to carry him through treatment helped his strength...or at least that's what I'm telling myself.
When we got home he was tired, but didn't feel too bad. The next day was a different story though. The side affects of chemo is cumulative, meaning they get worse the more treatments Donny has. And just as they did last treatment, they got even worse after this treatment. Although we did tell the nurse that Donny was nauseous after last treatment, so they added another anti-nausea medication this time.
I feel like I say this every time, but bless his heart, Donny worked all week and even worked a basketball game on Friday night. That's why I think Saturday he was down for the count. I was supposed to go to his cousin's 1st birthday party, but Donny was feeling so sick that I stayed home with him. It's strange. I asked him to describe his symptoms and this was the best he could give me:
Last treatment marked the half way point (knock on wood). So this week marked the official beginning of the end. I have to say, I was dreading treatment this time. (Poor Donny, I told him that and he looked at me like I had two heads and asked, "How do you think I feel?") At first I didn't know why I was so anxious on Tuesday, but then I realized it was dread - a different feeling than anxiety. With anxiety, I'm restless and lack concentration, and want to get treatment over with.
Dread is a whole new feeling for me. If I were an ostrich, I would have stuck my head in the ground and happily stayed there until Donny came home. I just didn't want this treatment to get here. And I know it's because the last treatment was bad. Donny was the sickest he's been since beginning this process. Last treatment was the first time he was actually nauseous for more than one day. And it was the first time that taking the extra anti-nausea pills didn't help. So that was miserable for Donny and I hated watching it.
If you've ever taken care of someone who is ill, and no medicine or treatment helps them, then you know how I feel. It's a helpless feeling watching someone suffer and wanting so badly to make them better, even though you know you can't. And what's worse in Donny's case, is that I can't even do anything to make him more comfortable; like fluff his pillow or get him water. He feels like shit no matter what and I can't do a darn thing about it. But then a week goes by and Donny is, although tired, back to feeling OK. So that's why I was dreading this treatment. He did so great last week after the awful week, that I just didn't want to go back to the bad. It's a total mind game for me. One week is horrible and one week is normal.
Treatment went by fast again. We talked to our head nurse, Cheryl, most of the time. She was cracking me up telling us how she hates chocolate. "I'm already chocolate, I don't need to eat any of it." she told us. And Donny actually felt ok when we got home. I think it's because he was eating candy the whole time. The nurse cleans out his port with a saliene solution in between pushes and after treatment. And when they do that, he gets a really bad, iron/salt taste in his mouth. Last week, when Donny came in to get his blood work done, he told the nurse this and she said, "Try eating Lemonheads. The sour taste over powers the nasty salt taste. We always have Lemonheads at the clinic. Just ask the front desk next time." So this time, although Donny did come prepared with some Sour Patch Kids, I went to the front desk and asked for some Lemonheads. And thanks to the Imerman Angels, Northwestern has an entire cabinet full of them! Take a look:
When we got home he was tired, but didn't feel too bad. The next day was a different story though. The side affects of chemo is cumulative, meaning they get worse the more treatments Donny has. And just as they did last treatment, they got even worse after this treatment. Although we did tell the nurse that Donny was nauseous after last treatment, so they added another anti-nausea medication this time.
I feel like I say this every time, but bless his heart, Donny worked all week and even worked a basketball game on Friday night. That's why I think Saturday he was down for the count. I was supposed to go to his cousin's 1st birthday party, but Donny was feeling so sick that I stayed home with him. It's strange. I asked him to describe his symptoms and this was the best he could give me:
- Upset stomach
- Headache
- Body ache
- Bad taste in mouth
- Extreme fatigue
Wednesday, January 23, 2013
Halfway to Home Plate
January 22, 2013
Six treatments down and six more to go until the end of this grueling process. (Knock on wood). (Knock on wood many, many times). People ask me all the time, how are things going? And I always respond, "Today it's....". Sometimes they laugh a bit, sometimes they are confused.
"Today?" They ask me. Because they're asking about the overall process. But I have to remind them that every day is a new day. This past off week (I call the week Donny doesn't have treatment his 'off week'), Donny has been the strongest I think I've seen him. He didn't have itching, he wasn't too tired, he didn't need his anti-nausea medication, he worked Friday and Saturday night, went to breakfast with me Sunday and out to dinner for my birthday Sunday night. Needless to say, we've been busy, and he's been strong through it all. A little tired at times, but overall feeling well. When we got his numbers back yesterday, we found out why he was feeling so great.
Last week, Donny's White Blood Cell count was the highest it has been since he started treatment. Thus, why he felt so great. Yesterday, his White Blood Cell count was one of the lowest it's been since he started treatment. I asked the nurse how this could be possible. He had treatment two weeks ago, so why are his numbers dropping now? She explained that with ABVD treatment, this is actually very common because there is a delay in the chemical process that sometimes doesn't affect the cell count until the second week. Which is why his blood count was good in his off week (one week after treatment) and why it was so low before his treatment (two weeks after).
Dr. P. surprised us and stopped by for a minute to say hi and to ask Donny how he was feeling. He asked a few questions and that was about it. He still wants to monitor Donny's liver enzymes to make sure they are normalizing after being off the Fluconozole (anti-fungal medication).
We told Dr. P. that Donny ended up going to the GI doctor last week to get that spot on the PET scan checked out. He was really happy about that and wanted to know what the GI doctor thought. Basically, Dr. K. (the GI doc) didn't think it was at all related to Donny's cancer and was not overly concerned about what he saw on the PET scan. He actually said it didn't look like anything was really there, but that he doesn't read PET scans for a living, so he'd have to trust the technicians that read the scan. He said the chances of a 27 year old male having polyps or anything of that nature is rare, but that it's better safe than sorry. Donny has another appointment with the GI on Feb. 11.
After Dr. P. left, it treatment went by quickly. Donny brought his iPad, so we got to watch Shark Tank on YouTube. It made the time pass very quickly! I'm slowly falling in love with that iPad. What a great piece of technology.
Anyway, we got home and Donny felt like crap. He can't explain to me how he feels except "bad". He's tired, worn down and hot then cold, hot then cold. But, as always, once Donny has something to eat, he starts feeling better. That's really the key, and he no longer fights me about it. Once Donny eats, he gains a little more strength. Although he still feels "bad", he feels well enough get up to go to the bathroom or to the kitchen. After dinner, we started watching our beloved Blackhawks (SO excited they're back!!!) and Donny fell asleep for the night.
We'll see what the next to weeks bring us. As I said, every day is a new day. Hopefully, my birthday wish will come true and Donny will have smooth sailing from here on out. Keep saying your prayers...it's been a long stretch, but we're half way there.
Six treatments down and six more to go until the end of this grueling process. (Knock on wood). (Knock on wood many, many times). People ask me all the time, how are things going? And I always respond, "Today it's....". Sometimes they laugh a bit, sometimes they are confused.
"Today?" They ask me. Because they're asking about the overall process. But I have to remind them that every day is a new day. This past off week (I call the week Donny doesn't have treatment his 'off week'), Donny has been the strongest I think I've seen him. He didn't have itching, he wasn't too tired, he didn't need his anti-nausea medication, he worked Friday and Saturday night, went to breakfast with me Sunday and out to dinner for my birthday Sunday night. Needless to say, we've been busy, and he's been strong through it all. A little tired at times, but overall feeling well. When we got his numbers back yesterday, we found out why he was feeling so great.
Last week, Donny's White Blood Cell count was the highest it has been since he started treatment. Thus, why he felt so great. Yesterday, his White Blood Cell count was one of the lowest it's been since he started treatment. I asked the nurse how this could be possible. He had treatment two weeks ago, so why are his numbers dropping now? She explained that with ABVD treatment, this is actually very common because there is a delay in the chemical process that sometimes doesn't affect the cell count until the second week. Which is why his blood count was good in his off week (one week after treatment) and why it was so low before his treatment (two weeks after).
Dr. P. surprised us and stopped by for a minute to say hi and to ask Donny how he was feeling. He asked a few questions and that was about it. He still wants to monitor Donny's liver enzymes to make sure they are normalizing after being off the Fluconozole (anti-fungal medication).
We told Dr. P. that Donny ended up going to the GI doctor last week to get that spot on the PET scan checked out. He was really happy about that and wanted to know what the GI doctor thought. Basically, Dr. K. (the GI doc) didn't think it was at all related to Donny's cancer and was not overly concerned about what he saw on the PET scan. He actually said it didn't look like anything was really there, but that he doesn't read PET scans for a living, so he'd have to trust the technicians that read the scan. He said the chances of a 27 year old male having polyps or anything of that nature is rare, but that it's better safe than sorry. Donny has another appointment with the GI on Feb. 11.
After Dr. P. left, it treatment went by quickly. Donny brought his iPad, so we got to watch Shark Tank on YouTube. It made the time pass very quickly! I'm slowly falling in love with that iPad. What a great piece of technology.
Anyway, we got home and Donny felt like crap. He can't explain to me how he feels except "bad". He's tired, worn down and hot then cold, hot then cold. But, as always, once Donny has something to eat, he starts feeling better. That's really the key, and he no longer fights me about it. Once Donny eats, he gains a little more strength. Although he still feels "bad", he feels well enough get up to go to the bathroom or to the kitchen. After dinner, we started watching our beloved Blackhawks (SO excited they're back!!!) and Donny fell asleep for the night.
We'll see what the next to weeks bring us. As I said, every day is a new day. Hopefully, my birthday wish will come true and Donny will have smooth sailing from here on out. Keep saying your prayers...it's been a long stretch, but we're half way there.
Wednesday, January 9, 2013
Chemo #5 - Donny's Dramatic Improvement
Tuesday, January 8, 2013
Great news! Donny's test results were extremely good and he can remain on his current treatment for the next 4 months! Thank GOD!
Tuesday was a looooong day. We were at Northwestern from 8am until after 6pm. Partially due to my doctors appointment in the morning with the Allergy Specialist. And partially due to the fact that they took forever to call Donny back to treatment. The lady who scheduled Donny's appointments told us the only time Dr. P. could see us was at 12:45, but then she didn't schedule the treatment until 2:45pm. I was not a happy camper, but how could I be upset after the great news we received during our appointment with Dr. P.?
We met with Dr. P. to go over the test results at 12:45pm. I was extremely anxious because my understanding of what needed to happen was that the PET scan needed to be clean - meaning there is no longer cancerous activity. But when Dr. P.'s research assistant, Emily, called me on Monday, she read me some preliminary results that stated there was "mild residual activity". So I thought there was still cancerous activity and that Donny might need to be moved up to the BEACOPP chemo. However, the results also said DRAMATIC IMPROVEMENT, so how could he get moved up if there had been great improvement? I was confused.
Dr. P. wasted no time in telling us that all the scans looked great, the scans show dramatic improvement and that Donny will remain on the ADBV. Needless to say, Donny, his parents and I were extremely relieved. This is the news we have been waiting for since October 19 when Donny had his biopsy done. We all took a deep breath and I held back my tears. As I've said in previous posts, I had a good feeling about these test results, but the anxiety of waiting for them was intense. There's nothing like hearing the words from the doctor himself, "you're test results look great." Phew!
But then came the blow. Donny has a spot on his colon. The original scan in October showed the spot as well, but Dr. P. said not to worry about it then because it could be due to the cancer. However, since the spot has not gone away, Donny now has to go to a Gastroenterologist for a consultation. Although Dr. P. said it's probably nothing, Donny's grandfather had colon cancer, so he insisted we go see a doctor this month.
After we met with Dr. P. we waited for another couple of hours to be called back for treatment. Every time Donny walked away Mr. G. told me how concerned he was about the colon issue. I felt bad, but I told him to stop because I was anxious enough about it and I couldn't take hearing the 'what ifs'. I can't function if I think of the 'what ifs'. Thankfully he did after I reassured him that I would set up the Gastroenterologist appointment right away. Today I called Dr. P.'s office to get the referral and will set up the appointment this afternoon when I hear back from them.
Overall treatment went well. Our regular nurse, Cheryl, was back and she so eagerly went into full, awful, gory details about what BEACOPP is like: blood transfusions every week, people falling over for no reason, looking and feeling like hell the entire time, the list went on. I was very glad she never shared those details previous to us finding out the test results. I don't think I would have been able to keep my composure quite like I did. I would have been a mess.
God has answered our prayers and Donny has shown incredible progress from the treatment. And, believe it or not, although it's very thin, he still has a full head of hair! Thank you all for your continued love and support. It has truly gotten us through these tough times. It's so comforting to be able to celebrate this with all of you, so thank you again and again.
5 treatments down, 7 to go. Only 4 more months until this process is over :)
Great news! Donny's test results were extremely good and he can remain on his current treatment for the next 4 months! Thank GOD!
Tuesday was a looooong day. We were at Northwestern from 8am until after 6pm. Partially due to my doctors appointment in the morning with the Allergy Specialist. And partially due to the fact that they took forever to call Donny back to treatment. The lady who scheduled Donny's appointments told us the only time Dr. P. could see us was at 12:45, but then she didn't schedule the treatment until 2:45pm. I was not a happy camper, but how could I be upset after the great news we received during our appointment with Dr. P.?
We met with Dr. P. to go over the test results at 12:45pm. I was extremely anxious because my understanding of what needed to happen was that the PET scan needed to be clean - meaning there is no longer cancerous activity. But when Dr. P.'s research assistant, Emily, called me on Monday, she read me some preliminary results that stated there was "mild residual activity". So I thought there was still cancerous activity and that Donny might need to be moved up to the BEACOPP chemo. However, the results also said DRAMATIC IMPROVEMENT, so how could he get moved up if there had been great improvement? I was confused.
Dr. P. wasted no time in telling us that all the scans looked great, the scans show dramatic improvement and that Donny will remain on the ADBV. Needless to say, Donny, his parents and I were extremely relieved. This is the news we have been waiting for since October 19 when Donny had his biopsy done. We all took a deep breath and I held back my tears. As I've said in previous posts, I had a good feeling about these test results, but the anxiety of waiting for them was intense. There's nothing like hearing the words from the doctor himself, "you're test results look great." Phew!
But then came the blow. Donny has a spot on his colon. The original scan in October showed the spot as well, but Dr. P. said not to worry about it then because it could be due to the cancer. However, since the spot has not gone away, Donny now has to go to a Gastroenterologist for a consultation. Although Dr. P. said it's probably nothing, Donny's grandfather had colon cancer, so he insisted we go see a doctor this month.
After we met with Dr. P. we waited for another couple of hours to be called back for treatment. Every time Donny walked away Mr. G. told me how concerned he was about the colon issue. I felt bad, but I told him to stop because I was anxious enough about it and I couldn't take hearing the 'what ifs'. I can't function if I think of the 'what ifs'. Thankfully he did after I reassured him that I would set up the Gastroenterologist appointment right away. Today I called Dr. P.'s office to get the referral and will set up the appointment this afternoon when I hear back from them.
Overall treatment went well. Our regular nurse, Cheryl, was back and she so eagerly went into full, awful, gory details about what BEACOPP is like: blood transfusions every week, people falling over for no reason, looking and feeling like hell the entire time, the list went on. I was very glad she never shared those details previous to us finding out the test results. I don't think I would have been able to keep my composure quite like I did. I would have been a mess.
God has answered our prayers and Donny has shown incredible progress from the treatment. And, believe it or not, although it's very thin, he still has a full head of hair! Thank you all for your continued love and support. It has truly gotten us through these tough times. It's so comforting to be able to celebrate this with all of you, so thank you again and again.
5 treatments down, 7 to go. Only 4 more months until this process is over :)
Sunday, January 6, 2013
Bare Necessities of Life
Donny's friends call him all sorts of things, like the Hulk (thus the Donny Smash Cancer bracelets), a pop machine, and the beast. But I always joke about Donny being my big bear. He's always been so loyal and protective of his family and friends and let's face it, he's so tall and has a HUGE back. But best of all he gives the best bear hugs. Recently, Donny's eczema started reappearing and unfortunately, it reappeared on the middle of his back where the poor guy cannot reach. Every time I come home from work I give him a back scratch and there have been several times that I've walked into the living room to find Donny using the edge of our heater to scratch his back. I can't help it, but the first time I saw Donny using the corner of the heater to scratch his back, I immediately thought of Baloo. Who is Baloo you ask? He's a character in The Jungle Book, Baloo the bear. So just for fun, to put a smile on your face, I thought I'd post this video of Baloo scratching his back, because this really is what Donny looks like when his back itches!
Happy Sunday!
Here's the full Bare Necessities song from the Jungle Book. This whole clip pretty much reminds me of Donny. Ok, well, maybe not the part where he's eating healthy food. But the philosophy of life, live simply and enjoy yourself, reminds me of Donny.
Friday, January 4, 2013
Everything will be FINE - Testing Round 2
Friday, January 4, 2013
Happy New Year!! Mrs. G. and I are sitting here at Northwestern right now waiting for Donny to come out of his second test. He had the CT Scan at 7:15am this morning and is now getting a MUGA Scan. The CT Scan shows the size of the "large mass" in his chest, neck and abdomen. The CT Scan needs to show that the masses have gone from "large masses" to not so large masses. In other words, the tumors need to have shown shrinkage.
The MUGA scan (multigated acquisition (MUGA) scan) creates video images of the ventricles (lower chambers of the heart that hold blood) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart. Some people with cancer who receive chemotherapy or other drugs may need this test before cancer treatment to identify preexisting heart conditions or during cancer treatment to identify chemotherapy-related heart damage, which is the case for Donny. He didn't have the MUGA before treatment started, he had a Heart ECHO which isn't as extensive, so he is getting the MUGA now to make sure the chemo hasn't effected his heart.
The final test is the PET Scan, which basically determines where the cancerous activity is. We need this scan to come back clear. That means that the cancer is still there, BUT, it is not growing - so the cancerous activity is gone, but the cancer is still there. I know that sounds a little confusing, but it just means that the cancer isn't growing any more.
So, if all of these tests come back the way we need them to (mainly the PET and the CT scan need to show positive change) then Donny can remain on the course of treatment his is on now. If not, he gets pushed up to the elevated chemo called BEACOPP which is 7 drugs instead of 4.
We meet with Dr. P. on Tuesday to find out the results, so needless to say, it's going to be a long weekend. I have such a positive, good feeling about the results. Donny's chronic cough has pretty much gone away and he said he feels like he can breath better, so I truly believe that the treatment has been successful. However, the anxiety I feel over waiting for that thumbs up from Dr. P. is already very overwhelming. Both Mr. and Mrs. G. are coming to the appointment with us on Tuesday so it's going to be a whole bundle of anxiety and emotions until we get that final word from the Doctor. Although, when you think about it, this really is nothing compared to what we were like at the beginning. I wanted to crawl out of my skin I was so anxious and emotional at the beginning between dealing with my fear, the unknown and the emotions of Donny, his parents and my family and friends. It's amazing how quickly you forget about how overwhelmed with emotions you can become. But I guess that's the beauty of life. Your forgetfulness allows you to move on and deal with what's ahead of you. Not that I've forgotten about Donny having cancer, but you tend to get over the emotions, until they come flying back and smack you in the face. And when they do, you grin and bear it with the support team you have around you. Or maybe you shed some tears and bear it. However you do it, you deal with it. And then it's over and you feel like you can fly because the weight of the world is now gone from your shoulders. And I know that's how we'll all be on Tuesday - relieved that we've gotten the good news. So I just have to keep that in mind. Everything will be fine. Everything will be fine. And if it's not...we'll deal with it then and still everything will be f-i-n-e.
So right now we are just hanging out on this bright sunny day. I love Northwestern because it is full of windows, so the sun brightens the whole waiting room and it makes it so much more peaceful to wait in. Again, say your prayers for Donny. I will update the blog immediately so you all know what we find out from Dr. P. on Tuesday. Everything will be fine :)
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