On Monday I called OSU Dermatology and made an appointment for Mike for October 29. I told the receptionist that we were very pleased with Dr. Fabbro (grad 2015), but because there is some question as to what his rash really is, I'd like a seasoned doctor, so she made the appointment with Dr. Chen (grad 2007).
Mike told me yesterday that he was up three times the night before worrying about his rash. I told him there isn't any reason to worry because they said it was just psoriasis and didn't see a need to see him until the end of November. He's not satisfied with that and is sure the rash is something more serious. He's very worried and I feel bad for him.
I looked at the rash again today and it looks like it might be drying up! YAY
Saturday, October 12, 2013
Wednesday, September 18, 2013
Going back in The James Cancer Clinic
Mike's appointment was at 1:30 with the PA at OSU JCC. I could tell all morning that he was a little apprehensive about going, but I actually felt like everything would go well and wasn't worried. That would soon change, but not really for any reason.
I just felt a sort of a depression come over me as we walked back in the doors of the cancer clinic. We didn't talk much and I think we were both thinking the same thing...here we go again. When we walked in I saw a lady sitting alone and just sobbing. I wanted to go over to comfort her, but when I mentioned it to Mike he wanted to just go up to the 11th floor for his appointment. I think it might have upset him too much
It was wonderful to see all the nurses again and as always, they made us feel welcome. Sue hugged us and took us back to our room and went over his meds, symptoms and health issues. Mike mentioned the rash is spreading rather rapidly, new abdominal lumps, and a sore left breast nipple. Tina poked her head in and said she wanted to see Mike's rash and lumps. She was quite surprised which is out of character for her. I don't think she knew what to say...which is also out of character! She left and said she'd be back later.
We knew we weren't going to see Dr. Andritsos since they moved Mike's appointment up a week, and she is on vacation. Janice, the PA who replaced Ro, and an intern who was working with her, came in next. We liked Janice right off, and her intern. She thoroughly examined Mike's body for his bad rash and lumps. She took pictures of the rash to send to a dermatologist who she said can diagnose well from photos usually. She said she'd talk to her team of Pathologists about coming up and taking biopsies of the lumps.
Soon Janice was back in and said the dermatologist confirmed it was psoriasis and would write a prescription for a cream to use. It wasn't long until Dr. Romanowski came in and took biopsies of two of the lumps and then on the breast. Mike said nothing hurt but the last biopsies of his breast. I'll try and post a picture of the '5-foot needle' he used!! Dr. R said he would have a preliminary diagnosis in about 30 minutes.
As we waited we were on our IPads, Mike playing games...and me looking up psoriasis and CLL and not liking what I see. The pit of my stomach starts to ache and I want to cry. I know I have to suck it up and be strong for him, so I do.
Finally Janice comes in and says "GOOD NEWS!" Dr. Romanowski said he is 90% sure that the lumps are all just fatty tissues!! YAYAYAY, right?? Well, I tried as hard as I could to be excited, and Mike didn't even try.
We make an appointment to come back on November 20, say our goodbyes and leave. Mike isn't talking. He seems sad or depressed. He says that he's bummed and depressed. I try to tell him that he good great news and I tried to sound thrilled.
We went to eat at Der Dutchman in Plain City. Both of us trying to act like everything is good...or at least I tried to act like it. Mike was just quite but kept saying he was bummed. As we left the restaurant, I really began to lecture him on how much worse he could be, it's JUST psoriasis, and his lumps are likely non cancerous!!! As I tried to lift HIS spirits, I began to lift mine, too. I was taking advice from my own lecture! I'm not sure if it worked much on him, but if I can keep MY spirits up, I can help him better.
I just felt a sort of a depression come over me as we walked back in the doors of the cancer clinic. We didn't talk much and I think we were both thinking the same thing...here we go again. When we walked in I saw a lady sitting alone and just sobbing. I wanted to go over to comfort her, but when I mentioned it to Mike he wanted to just go up to the 11th floor for his appointment. I think it might have upset him too much
It was wonderful to see all the nurses again and as always, they made us feel welcome. Sue hugged us and took us back to our room and went over his meds, symptoms and health issues. Mike mentioned the rash is spreading rather rapidly, new abdominal lumps, and a sore left breast nipple. Tina poked her head in and said she wanted to see Mike's rash and lumps. She was quite surprised which is out of character for her. I don't think she knew what to say...which is also out of character! She left and said she'd be back later.
We knew we weren't going to see Dr. Andritsos since they moved Mike's appointment up a week, and she is on vacation. Janice, the PA who replaced Ro, and an intern who was working with her, came in next. We liked Janice right off, and her intern. She thoroughly examined Mike's body for his bad rash and lumps. She took pictures of the rash to send to a dermatologist who she said can diagnose well from photos usually. She said she'd talk to her team of Pathologists about coming up and taking biopsies of the lumps.
Soon Janice was back in and said the dermatologist confirmed it was psoriasis and would write a prescription for a cream to use. It wasn't long until Dr. Romanowski came in and took biopsies of two of the lumps and then on the breast. Mike said nothing hurt but the last biopsies of his breast. I'll try and post a picture of the '5-foot needle' he used!! Dr. R said he would have a preliminary diagnosis in about 30 minutes.
As we waited we were on our IPads, Mike playing games...and me looking up psoriasis and CLL and not liking what I see. The pit of my stomach starts to ache and I want to cry. I know I have to suck it up and be strong for him, so I do.
Finally Janice comes in and says "GOOD NEWS!" Dr. Romanowski said he is 90% sure that the lumps are all just fatty tissues!! YAYAYAY, right?? Well, I tried as hard as I could to be excited, and Mike didn't even try.
We make an appointment to come back on November 20, say our goodbyes and leave. Mike isn't talking. He seems sad or depressed. He says that he's bummed and depressed. I try to tell him that he good great news and I tried to sound thrilled.
We went to eat at Der Dutchman in Plain City. Both of us trying to act like everything is good...or at least I tried to act like it. Mike was just quite but kept saying he was bummed. As we left the restaurant, I really began to lecture him on how much worse he could be, it's JUST psoriasis, and his lumps are likely non cancerous!!! As I tried to lift HIS spirits, I began to lift mine, too. I was taking advice from my own lecture! I'm not sure if it worked much on him, but if I can keep MY spirits up, I can help him better.
Monday, September 16, 2013
The unknown is so worrisome.
I've jumped way ahead...to today, Monday, September 16, 2013. For the past few weeks Mike's rash has been getting worse, and lately it's worsening daily. I noticed today that it's on his neck and moving towards his face. He is worried and thinks the cancer is taking over his body. As always, I've researched and read all I can about the rash associated with CLL and there is not much information on it. A blog I found yesterday by David Arenson scared me, as Mr. Arenson mentioned that he was worried that his rash was 'skin infiltration' by the cancer. In his case, it wasn't. I've looked up info on skin infiltration and just am not finding much, but what I see is not frightening. I tried to reassure Mike that it's just a rash and I'm finding nothing negative about it. He is also worried about his left nipple pain. He has several new lumps on his upper abdomen, too. Honestly, all of this worries me, too, but I have to stay strong and put up a good front for him. He has an appointment at The OSU James Cancer Clinic this Wednesday and we both are looking forward to hopefully getting our questions answered.
I'm back at the point where I'm scared. I'm thinking the worse. That's why I'm writing here, trying to get those emotions spoken and out of me. I think of our boys going through what I went through when my mom was dying. It was hell. I would rather go through it ten times over then have my boys experience one minute of that pain. To me, they're still babies, although David will be 24 next week and Max is 22, and much too young to lose their dad. I wish we had had them when we were 20, instead of 40, so we would have had 20 more years with them.
Max feels very cheated by our age difference because he doesn't want to lose us faster then his friends. For some reason, he verbally reassures himself when he names three of his friends that have parents near our age, too. David keeps his feelings to himself, but he and his Dad do everything together. Mike is trying to spend more time in Dublin with Max because he misses seeing him so much.
I'm back at the point where I'm scared. I'm thinking the worse. That's why I'm writing here, trying to get those emotions spoken and out of me. I think of our boys going through what I went through when my mom was dying. It was hell. I would rather go through it ten times over then have my boys experience one minute of that pain. To me, they're still babies, although David will be 24 next week and Max is 22, and much too young to lose their dad. I wish we had had them when we were 20, instead of 40, so we would have had 20 more years with them.
Max feels very cheated by our age difference because he doesn't want to lose us faster then his friends. For some reason, he verbally reassures himself when he names three of his friends that have parents near our age, too. David keeps his feelings to himself, but he and his Dad do everything together. Mike is trying to spend more time in Dublin with Max because he misses seeing him so much.
Sunday, September 15, 2013
My first post about my son's dad, and my husband.
Today is 493 days since we first learned that Mike has Chronic Lymphocytic Leukemia, better known as CLL. Not a diagnosis you would want to hear, in the hospital, by yourself, at 12:15 am on May 10, 2012. Not a diagnosis you would EVER want to hear, but that was when a doctor with the bedside manner of a bedbug told Mike he had cancer. Mike didn't want to wake me at that hour, so painstakingly and without sleep, he waited to call me until 8:15 the next morning.
I had taken him to LMH the day before with severe abdominal pains. Our friend who is also a nurse, Janet, was with us when a sweet young nurse came in and told us they would be admitting him for IV antibiotic treatments overnight. Janet asked what his WBC (white blood count) was and I remember how the young nurse looked at her, eyes penetrating with an unspoken message, and said 90,000. Of course at the time it meant nothing to us, so we were suspect to none of the soon to be learned diagnosis. Janet said nothing, knowing an infection of some sort could have also spiked his WBC.
Once again, and in the normal span of the three-year stinking diagnosis curses, we are hit in the stomach with a boulder. 2006 my dad has a brain aneurysm and dies within hours. July 7, 2009 my mother learns that her kidney cancer is back (she had a kidney removed 13 years before), and dies three months later to the day...October 7. Fast forward ahead to May 10, 2012 and another stinging diagnosis.
As excruciating painful as losing my loving dad was, I thanked God immediately after his death for the 'gift of his quick death'. I had been taking Dad to his doctor's appointments and nearly every time he said he wanted to see his grandchildren all graduate from high school, and then with a little chuckle would add, 'and my great-grandchildren'. Dad didn't want to age and didn't want to die. Not because he was afraid of death, but my dad loved living. Loved life. Loved family. Loved people. He
wasn't ready. So I began to pray and ask God to please take him quickly, like on the golf course doing what he loved to do. On October 23rd, the day of Gods choice, it was too chilly for Dad to be golfing, so one of his next favorite things to do was to go to 'coffee' every weekday with his friends. It was as he walked in the house from having coffee, that he quickly began his journey home. Thank you, God.
Mom had become increasingly weakened in the past year before Dad died. After Dad's death, I was, by choice, Mom's caregiver. I didn't work outside the home and my sister, Kathy, did, and our other sister, Krista, lived in Chicago. I was so thankful I was able to do it. Over the next three years I witnessed her decline in health. When the pain in her back returned, I took her to Dr. Kuk, and as we left the room, his eyes told me that he, too, suspected what I did. I wrote on another blog called adaughterscancerdiary.blogspot.com of our three month journey. Once again I could thank God that she didn't linger in pain and had a peaceful return home.
We've made it through that 'Year 3' with Mike. It's 2013 so he broke the cycle! YAY! We're fighting for many more years! I'll continue on with what his treatments have been this past year later.
I had taken him to LMH the day before with severe abdominal pains. Our friend who is also a nurse, Janet, was with us when a sweet young nurse came in and told us they would be admitting him for IV antibiotic treatments overnight. Janet asked what his WBC (white blood count) was and I remember how the young nurse looked at her, eyes penetrating with an unspoken message, and said 90,000. Of course at the time it meant nothing to us, so we were suspect to none of the soon to be learned diagnosis. Janet said nothing, knowing an infection of some sort could have also spiked his WBC.
Once again, and in the normal span of the three-year stinking diagnosis curses, we are hit in the stomach with a boulder. 2006 my dad has a brain aneurysm and dies within hours. July 7, 2009 my mother learns that her kidney cancer is back (she had a kidney removed 13 years before), and dies three months later to the day...October 7. Fast forward ahead to May 10, 2012 and another stinging diagnosis.
As excruciating painful as losing my loving dad was, I thanked God immediately after his death for the 'gift of his quick death'. I had been taking Dad to his doctor's appointments and nearly every time he said he wanted to see his grandchildren all graduate from high school, and then with a little chuckle would add, 'and my great-grandchildren'. Dad didn't want to age and didn't want to die. Not because he was afraid of death, but my dad loved living. Loved life. Loved family. Loved people. He
wasn't ready. So I began to pray and ask God to please take him quickly, like on the golf course doing what he loved to do. On October 23rd, the day of Gods choice, it was too chilly for Dad to be golfing, so one of his next favorite things to do was to go to 'coffee' every weekday with his friends. It was as he walked in the house from having coffee, that he quickly began his journey home. Thank you, God.
Mom had become increasingly weakened in the past year before Dad died. After Dad's death, I was, by choice, Mom's caregiver. I didn't work outside the home and my sister, Kathy, did, and our other sister, Krista, lived in Chicago. I was so thankful I was able to do it. Over the next three years I witnessed her decline in health. When the pain in her back returned, I took her to Dr. Kuk, and as we left the room, his eyes told me that he, too, suspected what I did. I wrote on another blog called adaughterscancerdiary.blogspot.com of our three month journey. Once again I could thank God that she didn't linger in pain and had a peaceful return home.
We've made it through that 'Year 3' with Mike. It's 2013 so he broke the cycle! YAY! We're fighting for many more years! I'll continue on with what his treatments have been this past year later.
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