100 DAYS!
These last couple of days had me crying, tired, full of questions and worrying about my condition.
The crying day was all day. Nothing could stop it. Why me, why now, when will I not have a bald head, I just don't feel well, don't believe this is happening, what are those minute cancer cells doing in my blood stream, will this neuropathy ease up some??? Just bringing me down. Glad Bill is understanding and tries to calm me down. Worked for a bit and then the tears would flow again later.
Next day I was a bit better but the question of what are those minute cancer cell doing in my blood stream still haunted me. I know they are going to be there forever but I need to know what they are doing and when and if they will grow and take over my plasm cells again. This is something I need to get answers about from my doctors and then learn to live with it (just not able to do that now). I will soon be put on my maintenance drug. Let's pray that this very low dose will not give me a reaction.
The risk for complications from my transplant is highest during the first 100 days after the transplant. Infections being the biggest complication. So this makes me worry and makes me upset. I couldn't attend my granddaughter's play at school, we are constantly washing our hands, washing fruit before it's cut (yes, even wash the outside of bananas), wearing my mask when we feel it's necessary, haven't been at Kristi and Matt's since before the transplant, not able to visit my mom at the assisted living place, haven't had much company because I wear out too fast or they have a cold, don't do much shopping other than the grocery store because I get tired quickly. All this being said, I need to realize that it's not even 3 months since the transplant. I have to realize I have months to go before my system is normal again. Months to go to feel good. Months to go to have some normality again. Months to go to build up my strength.
No, I will never be the same Kathy that I was before my diagnosis. I see things differently now. I will have the constant worry when I feel an ache in my back or leg etc if it's starting again. The constant worry what's going on with my disease. But hopefully, I will soon be able to live with that worry in a much more healthy way. I have come quite a way since my transplant but know I have a way to go. Each and every day is a new day. A new day to build up my strength more and more. A new day to be thankful for another new day.
Quote:
Strength grows in the moments when you think you can't go on but you keep going anyway!
Friday, January 27, 2017
Tuesday, January 17, 2017
A great appointment!
Today I had a follow up appointment with Dr. Sarriera at UF Health Cancer Center. Labs were drawn at Quest last Monday and there for him to see the results. He was very pleased with what he saw. Very pleased with my progress so far. Very pleased to hear how much I was walking. Said miles do not count as much as time does. We discussed, again, the (childhood) immunizations that I need to get. We are to discuss this with Dr. Ochoa when we go to Moffit next month. Dr. Sarriera also discussed my maintenance. We are going to go to 2.5 mg of Revlimid to see if I can tolerate Revlimid (this was the drug that I broke out in hives from when all this first started). He is waiting to start this until after I have my appointment with Dr. Ochoa. From looking at the labs, there are no cancer cells showing up but since we know that Multiple Myeloma isn't curable, there are some cells floating around in there but they are not measurable at this time. Thus the maintenance program. He also reminded us that it will be six to 12 months till my immune system will be pretty much back to normal. I need to continue building up my strength taking one day at a time. Dr. Sarriera told me it was okay to have down days, sad days, crying days. These things are all a part of my journey. My journey to feel like myself again. My journey to have my strength back. My journey to have my hair back. My journey to be able to smile a real, meaningful smile.
Quote:
Hope is like the sun, as we journey towards it, it casts the shadow of our burden behind us.
Today I had a follow up appointment with Dr. Sarriera at UF Health Cancer Center. Labs were drawn at Quest last Monday and there for him to see the results. He was very pleased with what he saw. Very pleased with my progress so far. Very pleased to hear how much I was walking. Said miles do not count as much as time does. We discussed, again, the (childhood) immunizations that I need to get. We are to discuss this with Dr. Ochoa when we go to Moffit next month. Dr. Sarriera also discussed my maintenance. We are going to go to 2.5 mg of Revlimid to see if I can tolerate Revlimid (this was the drug that I broke out in hives from when all this first started). He is waiting to start this until after I have my appointment with Dr. Ochoa. From looking at the labs, there are no cancer cells showing up but since we know that Multiple Myeloma isn't curable, there are some cells floating around in there but they are not measurable at this time. Thus the maintenance program. He also reminded us that it will be six to 12 months till my immune system will be pretty much back to normal. I need to continue building up my strength taking one day at a time. Dr. Sarriera told me it was okay to have down days, sad days, crying days. These things are all a part of my journey. My journey to feel like myself again. My journey to have my strength back. My journey to have my hair back. My journey to be able to smile a real, meaningful smile.
Quote:
Hope is like the sun, as we journey towards it, it casts the shadow of our burden behind us.
Saturday, January 14, 2017
60 Days!
Two months ago today I received my bone marrow transplant. Two months ago today I was not expecting what I was going to go through to get to this point. Days of just laying in bed, no energy
just going through the motions. Sick from the chemo, having the nurses helping me with things like a shower when I got sick, making sure I took my meds, trying to eat but having no appetite, trying to drink but nothing tasted like it used to. Waiting for the doctor to come in each morning hoping for a release from the hospital. Finally it was time to move to the hotel. Was time for Bill to have me by his side 24/7. Again, laid in bed most of the time because I hated that hotel suite. Would get up each day in order to go to the hospital for labs, drips of potassium, calcium or fluids whatever I was lacking. Several weeks I hope and pray I never have to go through again. Finally after almost 2 weeks at the hotel, a total of about 27 days with the hospital stay, we were allowed to come home. Home, where I wanted to be to recuperate. Home! Had a few weeks of the same a lot of sleeping, no energy, no appetite, not able to drink a lot and a few bouts of sickness. Mashed potatoes, actually Bob Evans brand, was all I wanted to eat here and at the hotel. Bill had bought all kinds of foods but I wanted nothing but those mashed potatoes. Finally I started to have some energy. Very little but some. Started walking around the pool, 3 times around. I tried to increase this by at least 2 laps each day. Didn't seem to sleep as much during the day. My sisters came to visit. I struggled to visit with them but did it. I am sure their visit helped with me gain energy. Started to take over some of the household chores, laundry, cooking and started going to the grocery store with Bill. Walking 20 times around the pool, 25 times around the pool, 30 times around the pool and now, if I don't walk around the neighborhood, 50 times around the pool. Appetite is getting better. Eating a lot more than mashed potatoes. Drinking more water, juices and Bill's ginger tea. Had Christmas Day here with Kristi, Matt, Sasha, Ellie and Mom. Had Kristi and girls over one night for pizza. Had Michelle and Gery over for New Year's Day pork, sauerkraut and mashed potatoes. Have walked over to Michelle and Gery's several times just to visit a bit. Watched Ellie for the day and even broke out the sewing machine to help her make a pillow and mattress for her doll. Sewing machine is still out and I have even sewed some quilt blocks together. Bill no longer has to be with me 24/7 but still keeps a good watch on me. Still there when I have my days that I don't want to be a cancer victim , I feel ugly when I look in the mirror and just need a "crying" day. Still there to get me my meds several times a day. Still there to help me with whatever I need. Still there to ask each morning how I slept, how I feel and to listen when I am not having a good energy day.
Yes, 60 days since the transplant. 60 days of working towards more energy and getting back to me. But I know this will take a lot more time. I will take one day at a time working towards this. One day at a time working each and every day to accomplish this. And I know I will continue to have my good days and my not so good days knowing some days I may look good but I sure don't feel good.
Quote:
The only way to beat cancer is to accept the reality, embrace the pain and find the courage to move forward, one day at a time!!!
Two months ago today I received my bone marrow transplant. Two months ago today I was not expecting what I was going to go through to get to this point. Days of just laying in bed, no energy
just going through the motions. Sick from the chemo, having the nurses helping me with things like a shower when I got sick, making sure I took my meds, trying to eat but having no appetite, trying to drink but nothing tasted like it used to. Waiting for the doctor to come in each morning hoping for a release from the hospital. Finally it was time to move to the hotel. Was time for Bill to have me by his side 24/7. Again, laid in bed most of the time because I hated that hotel suite. Would get up each day in order to go to the hospital for labs, drips of potassium, calcium or fluids whatever I was lacking. Several weeks I hope and pray I never have to go through again. Finally after almost 2 weeks at the hotel, a total of about 27 days with the hospital stay, we were allowed to come home. Home, where I wanted to be to recuperate. Home! Had a few weeks of the same a lot of sleeping, no energy, no appetite, not able to drink a lot and a few bouts of sickness. Mashed potatoes, actually Bob Evans brand, was all I wanted to eat here and at the hotel. Bill had bought all kinds of foods but I wanted nothing but those mashed potatoes. Finally I started to have some energy. Very little but some. Started walking around the pool, 3 times around. I tried to increase this by at least 2 laps each day. Didn't seem to sleep as much during the day. My sisters came to visit. I struggled to visit with them but did it. I am sure their visit helped with me gain energy. Started to take over some of the household chores, laundry, cooking and started going to the grocery store with Bill. Walking 20 times around the pool, 25 times around the pool, 30 times around the pool and now, if I don't walk around the neighborhood, 50 times around the pool. Appetite is getting better. Eating a lot more than mashed potatoes. Drinking more water, juices and Bill's ginger tea. Had Christmas Day here with Kristi, Matt, Sasha, Ellie and Mom. Had Kristi and girls over one night for pizza. Had Michelle and Gery over for New Year's Day pork, sauerkraut and mashed potatoes. Have walked over to Michelle and Gery's several times just to visit a bit. Watched Ellie for the day and even broke out the sewing machine to help her make a pillow and mattress for her doll. Sewing machine is still out and I have even sewed some quilt blocks together. Bill no longer has to be with me 24/7 but still keeps a good watch on me. Still there when I have my days that I don't want to be a cancer victim , I feel ugly when I look in the mirror and just need a "crying" day. Still there to get me my meds several times a day. Still there to help me with whatever I need. Still there to ask each morning how I slept, how I feel and to listen when I am not having a good energy day.
Yes, 60 days since the transplant. 60 days of working towards more energy and getting back to me. But I know this will take a lot more time. I will take one day at a time working towards this. One day at a time working each and every day to accomplish this. And I know I will continue to have my good days and my not so good days knowing some days I may look good but I sure don't feel good.
Quote:
The only way to beat cancer is to accept the reality, embrace the pain and find the courage to move forward, one day at a time!!!
Sunday, January 1, 2017
Day 48
Today is my 48th day since my transplant. 48 days of getting more energy. 48 days and a lot more to go. I have gone on a few trips to the grocery store, to the airport, several golf cart rides ( thanks Gery), walked up the street a few houses, visited Michelle and Gery, did laundry, ran the vacuum several times, cooked several meals and had Christmas Day here. So in those 48 days, I have added more and more "doing" things. The first several days were hard. Didn't do much except sleep and sit on the couch. Started walking around the pool about the 2 week (I think) for exercise (like I used to in Chambersburg when I went to Weight Watchers - Louise). Started at 2 laps and now I am up to 34. Bill and I figured out that 24 laps equal 1/4 mile. Heading towards that 1/2 mile and that mile. Each day or two I feel stronger and have more energy. Still have those days where I am tired and don't do much. I have been doing a little crocheting. Made a hat. Now making a "something"! HA! Also, thanks to Judy, I have been doing word seeks and fill in crossword puzzles. Ordered a new quilt book and even got out a quilt that I was working on previously to look at the directions. So I am thinking maybe soon I may open that sewing machine and get started again. My biggest problem right now is my neuropathy. Feet and hands. Drugs do help some but not a lot. Doctor increased my dosage. My hands get so cold sometimes and tingle like pins are in them. I drop things occasionally because I don't really feel what I am picking up. Even as I am typing, my fingers feel like they are sleeping. Still keep using them though. Figure the crocheting, writing in the crossword puzzle book etc can't hurt. Feet are the same way. Tingling, feel like they are sleeping, feel like my feet are swollen (they're not) and I am walking on golf balls at times. Most times walking will ease them some. Funny, huh? My hair. Well, I see myself in the mirror and at times I think, who is that alien? LOL Wear a lot of hats. My head gets cold then hot. Off and on goes the hats. I have one that a friend of my sister Cheri made me that has become my favorite. It's knit but not a heavy yarn like some I have. I feel my hair is growing back in. I told Bill the other day that when I walk, I can feel it blowing in the wind. :)
Had an appointment on Friday for my Zometa drip. That's the drug that helps strengthen my bones. Do that one every 3 months. Next appointment is January 16th with Dr. Sierrera for another follow up. Then in February, we head back to Tampa for an appointment with Dr. Ochoa.
Would like to wish everyone a very Happy New Year. Again thanks for following me.
Quote:
Supporting the fighters, admiring the survivors, honoring the taken and never, ever giving up hope!
Today is my 48th day since my transplant. 48 days of getting more energy. 48 days and a lot more to go. I have gone on a few trips to the grocery store, to the airport, several golf cart rides ( thanks Gery), walked up the street a few houses, visited Michelle and Gery, did laundry, ran the vacuum several times, cooked several meals and had Christmas Day here. So in those 48 days, I have added more and more "doing" things. The first several days were hard. Didn't do much except sleep and sit on the couch. Started walking around the pool about the 2 week (I think) for exercise (like I used to in Chambersburg when I went to Weight Watchers - Louise). Started at 2 laps and now I am up to 34. Bill and I figured out that 24 laps equal 1/4 mile. Heading towards that 1/2 mile and that mile. Each day or two I feel stronger and have more energy. Still have those days where I am tired and don't do much. I have been doing a little crocheting. Made a hat. Now making a "something"! HA! Also, thanks to Judy, I have been doing word seeks and fill in crossword puzzles. Ordered a new quilt book and even got out a quilt that I was working on previously to look at the directions. So I am thinking maybe soon I may open that sewing machine and get started again. My biggest problem right now is my neuropathy. Feet and hands. Drugs do help some but not a lot. Doctor increased my dosage. My hands get so cold sometimes and tingle like pins are in them. I drop things occasionally because I don't really feel what I am picking up. Even as I am typing, my fingers feel like they are sleeping. Still keep using them though. Figure the crocheting, writing in the crossword puzzle book etc can't hurt. Feet are the same way. Tingling, feel like they are sleeping, feel like my feet are swollen (they're not) and I am walking on golf balls at times. Most times walking will ease them some. Funny, huh? My hair. Well, I see myself in the mirror and at times I think, who is that alien? LOL Wear a lot of hats. My head gets cold then hot. Off and on goes the hats. I have one that a friend of my sister Cheri made me that has become my favorite. It's knit but not a heavy yarn like some I have. I feel my hair is growing back in. I told Bill the other day that when I walk, I can feel it blowing in the wind. :)
Had an appointment on Friday for my Zometa drip. That's the drug that helps strengthen my bones. Do that one every 3 months. Next appointment is January 16th with Dr. Sierrera for another follow up. Then in February, we head back to Tampa for an appointment with Dr. Ochoa.
Would like to wish everyone a very Happy New Year. Again thanks for following me.
Quote:
Supporting the fighters, admiring the survivors, honoring the taken and never, ever giving up hope!
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