Experimental Rabbit.
Today was my appointment with Dr. Sarriera to discuss what we were to do about a maintenance
program since I once again broke out in a rash from the Revlimid. One of the options at hand was to go to an allergist at Moffitt in Tampa to be desensitized. Not sure how much time that would entail. And I know I did not want to go back to Tampa.
First Abby came in to talk with us. We discussed my labs from last week. All good. These were just normal labs and did not include any Myeloma tests since I just had those tests in the middle of February. Will have them done in a few weeks from now. Then we discussed my Revlimid rash. I voiced my opinion that I was not in favor of traveling to Moffitt for drug desensitization (a method to reduce or eliminate a negative reaction to a drug using gradual exposure therapy). But if this was the only option, I would do it. Really is hard to believe there isn't an allergist in the Orlando area that would be able to perform this task. But there is not. Abby left us saying that she was going to discuss with Dr. Sarriera what his plan was for my maintenance and they would be back together.
Dr. Sarriera came in shaking hands with us and then saying to Abby, " Now how do you say that word in English about a rabbit?" That word was experimental. He stated that he has never done this before, nor has it been done at UF Health Cancer Center but he wanted to make me his experimental rabbit. He and Abby put a program together to do desensitization of Revlimid. It would start on March 9th with me taking only 1 Revlimid pill. Still the 2.5 mg dosage. That would be all for that week. Then on March 15th I would have an office visit with him to see how it was going. Then I would take another Revlimid on March 16th. Come back to the office a week later to see if any reaction from the second pill. Then I would start on 2 pills a week. Another office visit a week later. Each week he will increase the number of Revlimid pills I will take and also monitor me weekly for any side effects, especially a rash. If all goes well and no rash, we will continue till I am able to do the maintenance program of 21 days of Revlimid and off 7 days. This getting me to remission I so hope and pray for daily. This process will take several months. I told Dr. Sarriera and Abby I was willing to do this with them.
I also asked what other options I had if not this. There were two other drugs that is used for maintenance. Velcade that will cause my neuropathy to worsen. Not an option for me. And another drug, called Thalomid, has many more side effects than Revlimid or Velcade. Not an option he wants me on. So we will try this experiment of desensitization with me being the experimental rabbit. Dr. Sarriera and Abby will monitor my progress. Maybe, just maybe, this experiment may help others in the future.
Quote:
Courage doesn't always roar. Sometimes it's the quiet voice at the end of the day saying, I will try again tomorrow!
Tuesday, February 28, 2017
Saturday, February 25, 2017
To be or not to be!
That was the question when I started on my Revlimid this week. This is my maintenance chemo pill. As you all know, I had allergic reactions to Revlimid when I was first diagnosed. Two times, two different doses, two times allergic reactions. Well, let's make it three. Into my fourth day, I started with a rash around one ear and the back of my head. Then on the fifth day, it started around my waist and under my bra area. So phone calls to my oncologist on Friday. Talked with Desiree who consulted with Dr. Sarriera and was taken off the Revlimid. I asked her to ask him if he wanted me to see if I could "weather" it out. He said it was only going to get worse. Guess the answer is - not to be! So off the chemo pill and on the steroids. And we know how steroids affect me; hungry all the time, can't sleep, mood swings crying. But maybe not since it's only 21 pills. On day two and seems okay. And the rash is almost gone.
Not sure what maintenance drug he will try, if any. For sure not Velcade. I have an appointment on Tuesday with Dr. Sarriera so will be discussed then. There is a plan for me. Just not sure what it is going to be. One Person knows though. I just want to get to the point where I am told I am in full remission. I need to hear that to ease my mind some of the constant not knowing when this cancer is coming back. I need to hear that so I can worry about something else. ;) Even though I can never say "I HAD CANCER" and have to say "I HAVE CANCER, just knowing that I am in full remission will help me ignore the above HAD AND HAVE. Will help Bill and I live our lives pretty much as before cancer but with different priorities just hearing the words full remission.
Have had several outings since the last time I posted. Even felt confident enough to eat at a restaurant. Two times to be exact. Sandy, Denny, Bill and I went to Noodles and Company on Thursday this week and then on Friday, Sandy and I went to Smashburgers. Both places are places I really like. Kristi introduced them to me! Also on Friday, Sandy and I spent about 1 1/2 hours in Joann Fabrics. Another favorite place of mine. I spent most of my time in the quilting section pondering over the material. A happy time for me. A time not thinking about anything but quilting.
I am now walking about 1/2 hour each day. I know it doesn't seem like much but it's a stepping stone for me. We try to add another area in our walk every few days. And the weather here is fabulous. Still a little chill in the air, I get cold a lot. I know it's nothing like my family and friends are experiencing in PA but I do mind it. My appetite has been returning more and more every day. I have even gained some of my 26 lbs back. I don't seemed to get as tired. I feel I have more energy. Not there fully but dang, I am getting there. Makes Bill happy to see me progressing as I have. He still worries over me and I don't mind a bit. Don't think I could have gone through all this without his support and mostly his love! Things like this just pull you closer together no matter how close you were before.
My goals in the next few months are to finish decorating my house, sew, get to the beach, sew, maybe get to a spring Yankees game, sew, walk more, sew, help Kristi and Matt more with the girls, maybe some yard work and did I mention sew. Have lots of "QUILTS TO MAKE"!
Quote:
Your life is your story. Write well. Edit often.
That was the question when I started on my Revlimid this week. This is my maintenance chemo pill. As you all know, I had allergic reactions to Revlimid when I was first diagnosed. Two times, two different doses, two times allergic reactions. Well, let's make it three. Into my fourth day, I started with a rash around one ear and the back of my head. Then on the fifth day, it started around my waist and under my bra area. So phone calls to my oncologist on Friday. Talked with Desiree who consulted with Dr. Sarriera and was taken off the Revlimid. I asked her to ask him if he wanted me to see if I could "weather" it out. He said it was only going to get worse. Guess the answer is - not to be! So off the chemo pill and on the steroids. And we know how steroids affect me; hungry all the time, can't sleep, mood swings crying. But maybe not since it's only 21 pills. On day two and seems okay. And the rash is almost gone.
Not sure what maintenance drug he will try, if any. For sure not Velcade. I have an appointment on Tuesday with Dr. Sarriera so will be discussed then. There is a plan for me. Just not sure what it is going to be. One Person knows though. I just want to get to the point where I am told I am in full remission. I need to hear that to ease my mind some of the constant not knowing when this cancer is coming back. I need to hear that so I can worry about something else. ;) Even though I can never say "I HAD CANCER" and have to say "I HAVE CANCER, just knowing that I am in full remission will help me ignore the above HAD AND HAVE. Will help Bill and I live our lives pretty much as before cancer but with different priorities just hearing the words full remission.
Have had several outings since the last time I posted. Even felt confident enough to eat at a restaurant. Two times to be exact. Sandy, Denny, Bill and I went to Noodles and Company on Thursday this week and then on Friday, Sandy and I went to Smashburgers. Both places are places I really like. Kristi introduced them to me! Also on Friday, Sandy and I spent about 1 1/2 hours in Joann Fabrics. Another favorite place of mine. I spent most of my time in the quilting section pondering over the material. A happy time for me. A time not thinking about anything but quilting.
I am now walking about 1/2 hour each day. I know it doesn't seem like much but it's a stepping stone for me. We try to add another area in our walk every few days. And the weather here is fabulous. Still a little chill in the air, I get cold a lot. I know it's nothing like my family and friends are experiencing in PA but I do mind it. My appetite has been returning more and more every day. I have even gained some of my 26 lbs back. I don't seemed to get as tired. I feel I have more energy. Not there fully but dang, I am getting there. Makes Bill happy to see me progressing as I have. He still worries over me and I don't mind a bit. Don't think I could have gone through all this without his support and mostly his love! Things like this just pull you closer together no matter how close you were before.
My goals in the next few months are to finish decorating my house, sew, get to the beach, sew, maybe get to a spring Yankees game, sew, walk more, sew, help Kristi and Matt more with the girls, maybe some yard work and did I mention sew. Have lots of "QUILTS TO MAKE"!
Quote:
Your life is your story. Write well. Edit often.
Monday, February 20, 2017
Side Effects
Today I started my maintenance program for controlling my Multiple Myeloma. Revlimid is the chemo pill I will be taking. This is the pill I had an allergic reaction to when this all started. Once while taking 25 mg and once at 15 mg. The 25 mg was awful. My head was so swollen with hives that my glasses had to be adjusted. My head, I had hair then, was so itchy I thought I had lice. Not fun. Dr. Sarriera took me off and treated with steroids to control the swelling and itching. Then when we tried the 15 mg, I once again had the rash, itching and hives but not near as bad. Still took me off the pills then too.
The Revlimid is the only drug used for maintenance besides Velcade. Doesn't want me on the Velcade because that caused my neuropathy. We are trying 2.5 mg, the lowest dose there is. So far, so good. But I remember with the other times it took a day or two before any reaction to the pills showed up. And since this is a very low dose, if anything is going to happen, it may take several days. Hoping nothing does so I am able to be on a maintenance program. My blood work is the way the Multiple Myeloma will be monitored with or without the Revlimid.
Bill and I met our new family doctor last week. We decided to change because of several reasons. First the way I had to keep insisting I wanted an x-ray of the lump on my head. The two PA there kept saying it was cellulitis or a maybe a fatty tissue. Once I had the x-ray, the results were sent to the doctor's office and laid on someone's desk for days even though it was stamped STAT. The day they finally found the x-ray and the doctor called us in to the office, he told me to get my affairs in order, not to be afraid to use Hospice. Made us feel that I was going to die within a few weeks. Kristi and Kerri were very upset about this too and was very insistent on us changing doctors. So on to another doctor we went. We got all ready and went on Thursday only to be told our appointments were not till Friday. Blame it on my chemo brain.
Quote:
It's often in the darkest skies, we see the brightest stars!
Today I started my maintenance program for controlling my Multiple Myeloma. Revlimid is the chemo pill I will be taking. This is the pill I had an allergic reaction to when this all started. Once while taking 25 mg and once at 15 mg. The 25 mg was awful. My head was so swollen with hives that my glasses had to be adjusted. My head, I had hair then, was so itchy I thought I had lice. Not fun. Dr. Sarriera took me off and treated with steroids to control the swelling and itching. Then when we tried the 15 mg, I once again had the rash, itching and hives but not near as bad. Still took me off the pills then too.
The Revlimid is the only drug used for maintenance besides Velcade. Doesn't want me on the Velcade because that caused my neuropathy. We are trying 2.5 mg, the lowest dose there is. So far, so good. But I remember with the other times it took a day or two before any reaction to the pills showed up. And since this is a very low dose, if anything is going to happen, it may take several days. Hoping nothing does so I am able to be on a maintenance program. My blood work is the way the Multiple Myeloma will be monitored with or without the Revlimid.
Bill and I met our new family doctor last week. We decided to change because of several reasons. First the way I had to keep insisting I wanted an x-ray of the lump on my head. The two PA there kept saying it was cellulitis or a maybe a fatty tissue. Once I had the x-ray, the results were sent to the doctor's office and laid on someone's desk for days even though it was stamped STAT. The day they finally found the x-ray and the doctor called us in to the office, he told me to get my affairs in order, not to be afraid to use Hospice. Made us feel that I was going to die within a few weeks. Kristi and Kerri were very upset about this too and was very insistent on us changing doctors. So on to another doctor we went. We got all ready and went on Thursday only to be told our appointments were not till Friday. Blame it on my chemo brain.
Quote:
It's often in the darkest skies, we see the brightest stars!
Wednesday, February 15, 2017
3 Months
I forgot to mention in my post yesterday it was 3 months yesterday since my transplant. Time has past quickly but a slow quick. 3 months ago I could barely get down a cup of pears. 3 month ago I was only drinking a sip of water or liquid. Then only to take my medications. 3 month ago I was in the hospital barely awake most days. 3 month ago after eating and drinking what I could, I would get sick and bring it all up. 3 month ago I was counting the days till I was able to leave the hospital and be an outpatient from a hotel suite. 3 month ago I was awaken every 4 hours to have my vitals taken or to take medications. 3 month ago Bill was sleeping on a sofa bed because he had to be with me 24/7. 3 month ago I had to drag myself to the shower each morning. 3 month ago I had no energy. 3 months ago there were days that I care not to discuss on here. I have blocked out a lot from 3 months ago that Bill tells me about.
Fast forward to 3 months later. 3 months later I just finished pork chops, baked potato and peas for dinner.
3 months later I am drinking lemon water all day long. 3 months later I sleep all night (with the exception of bathroom breaks). 3 months later I take my meds during the day and no vitals are taken every 4 hours. 3 months later I am able to eat and drink without getting sick. 3 months later I am home where I wanted to be all along. 3 months later Bill no longer has to be with me 24/7 and no longer has to sleep on a sofa bed. 3 months later a shower is part of my morning routine. 3 months later I have energy. Not all that I will have but I am working towards it each and every day. 3 months later I am celebrating my progress so far. 3 months later I know I have a while to go but in 3 months from now, I will be closer to being my "new" self.
Quote:
Courage is the power to let go of the familiar!
I forgot to mention in my post yesterday it was 3 months yesterday since my transplant. Time has past quickly but a slow quick. 3 months ago I could barely get down a cup of pears. 3 month ago I was only drinking a sip of water or liquid. Then only to take my medications. 3 month ago I was in the hospital barely awake most days. 3 month ago after eating and drinking what I could, I would get sick and bring it all up. 3 month ago I was counting the days till I was able to leave the hospital and be an outpatient from a hotel suite. 3 month ago I was awaken every 4 hours to have my vitals taken or to take medications. 3 month ago Bill was sleeping on a sofa bed because he had to be with me 24/7. 3 month ago I had to drag myself to the shower each morning. 3 month ago I had no energy. 3 months ago there were days that I care not to discuss on here. I have blocked out a lot from 3 months ago that Bill tells me about.
Fast forward to 3 months later. 3 months later I just finished pork chops, baked potato and peas for dinner.
3 months later I am drinking lemon water all day long. 3 months later I sleep all night (with the exception of bathroom breaks). 3 months later I take my meds during the day and no vitals are taken every 4 hours. 3 months later I am able to eat and drink without getting sick. 3 months later I am home where I wanted to be all along. 3 months later Bill no longer has to be with me 24/7 and no longer has to sleep on a sofa bed. 3 months later a shower is part of my morning routine. 3 months later I have energy. Not all that I will have but I am working towards it each and every day. 3 months later I am celebrating my progress so far. 3 months later I know I have a while to go but in 3 months from now, I will be closer to being my "new" self.
Quote:
Courage is the power to let go of the familiar!
Tuesday, February 14, 2017
Lady Godiva
I have been wanting to blog about my IgE report that I was waiting on from my labs when at Tampa last week. This is the measurement Dr. Ochao (my transplant doctor) uses to follow my Myeloma. If you remember from my last post, the IgE test before my transplant for 50,000 plus (couldn't measure it because was off the chart), then IgE in December was 9800. Welllll, drum roll please, my IgE results from my labs on February 6 showed 434. This is really going in the right direction. The normal result they look for is 214 or less.
Today I had an appointment with my oncologist, Dr. Sarriera. He will continue to monitor the IgE results and the free kappa and lambda light chains. These light chains are indicators of Multiple Myeloma if they become abnormal. This would show up in my labs. This was one of my concerns. How will they know if my Multiple Myeloma is back? We discussed my fear of this today. He said I will have a relapse. When? Could be six months, a year, three years, 10 years, 20 years. He has several patients that have been free of Myeloma for 10 years, 12 years, 20 years. Guess we will deal with it when this happens but it will always be in the back of my mind as to WHEN? Abby,
Dr. Sarriera's nurse, told me it will eventually not be on my mind so much. Just takes time but that is okay.
Meanwhile, to get me to full remission (I am in partial remission now), we will start the Revlimid again. Very low dosage. I will be praying that I do not have a reaction this time as this is the only chemo drug that is used for maintenance beside Velcade. He doesn't want to go the route of Velcade because that is what caused my neuropathy. Since Revlimid is a very controlled substance, it may be a week till I will start taking it. So much red tape to go through to get it released to me. Dr. Sarriera said that he has had patient go into full remission with in six months of the Revlimid and others have taken up to a year or more. I will take the Revlimid for 21 days and then have 7 days off, if I am not allergic to it. This will continue the rest of my life. There was mention of me going to an allergist for desensitizing if I am allergic to it. This would have to be in Tampa. UGH!!
I will have to do labs about every 2 months once I am on the Revlimid schedule. And have to see Dr. Sarriera about every 6 to 8 weeks. This will continue until forever too. Guess Kristi or Matt, or maybe even Sasha or Ellie, will have to drive us to the Cancer Center once we are no longer able to drive. ;)
I will continue to take Acyclovir (virus protection pill), Lyrica (for my neuropathy), Statin (for cholesterol), vitamin B12 complex and calcium with vitamin D. Also, will continue the Zometa drip (helps strengthens my bones) every 3 months. He wants me to start taking a low dose aspirin daily once I start taking the Revlimid. Even after months of pill taking, I still hate to take pills. Never really took a lot of pills before this "C" came in to my life other than an occasional Aleve and my cholesterol pill. Well, at least Bill doesn't have to cut them in half any more!!! He did this with several of them so I could swallow them without gaging.
I have been feeling pretty good. Getting back to my life. It's a different life but that too is okay. It will never be the same as before cancer. It's a more appreciative life. A more "me" life. A more "Bill" life. A more 'family" life. I will get back to my life but a life after cancer will be different.
We have had some visitors from PA. Sandy and Denny are here for 5 weeks. Several which have already gone. Didn't see them the first week. Sandy's Dad and friend were here. Second week Denny was sick. Finally was able to go over to their condo for dinner last Saturday night. Then again tonight after my doctor's appointment. We hope to get together several more times before they leave. It all depends on me and how I am feeling. Hate that but it's how it has to be for a while.
Ventured out to Kohls with Bill the other day. I was able to shop for about an hour. (I used spend hours there with Louise or Nancy or Sandy at one time.) Needed some new clothes as I lost around 26 lbs since all this started. I didn't try anything on there because dressing rooms are not clean. I am becoming a germaphobic. But my immune system is still not fully recovered and I am not taking chances. So, of course, I had to return things that didn't fit. So back I went again. This time Sandy was my driver. We were there a little over an hour and I was ready to go. Tiring. But these little adventures help with my strength building.
Now if only my hair would grow faster. When I look in the mirror and see this bald head, I feel like crying but instead I just start singing - her long blonde hair, lying on the barber's floor, she doesn't need it long anymore, Lady Godiva or hair, long beautiful hair. Makes me laugh because I didn't have long blonde hair or long beautiful hair and also I can't sing.
Quote:
Sometimes life is about the ability to believe in where you are going even when you are not sure what lies ahead.
I have been wanting to blog about my IgE report that I was waiting on from my labs when at Tampa last week. This is the measurement Dr. Ochao (my transplant doctor) uses to follow my Myeloma. If you remember from my last post, the IgE test before my transplant for 50,000 plus (couldn't measure it because was off the chart), then IgE in December was 9800. Welllll, drum roll please, my IgE results from my labs on February 6 showed 434. This is really going in the right direction. The normal result they look for is 214 or less.
Today I had an appointment with my oncologist, Dr. Sarriera. He will continue to monitor the IgE results and the free kappa and lambda light chains. These light chains are indicators of Multiple Myeloma if they become abnormal. This would show up in my labs. This was one of my concerns. How will they know if my Multiple Myeloma is back? We discussed my fear of this today. He said I will have a relapse. When? Could be six months, a year, three years, 10 years, 20 years. He has several patients that have been free of Myeloma for 10 years, 12 years, 20 years. Guess we will deal with it when this happens but it will always be in the back of my mind as to WHEN? Abby,
Dr. Sarriera's nurse, told me it will eventually not be on my mind so much. Just takes time but that is okay.
Meanwhile, to get me to full remission (I am in partial remission now), we will start the Revlimid again. Very low dosage. I will be praying that I do not have a reaction this time as this is the only chemo drug that is used for maintenance beside Velcade. He doesn't want to go the route of Velcade because that is what caused my neuropathy. Since Revlimid is a very controlled substance, it may be a week till I will start taking it. So much red tape to go through to get it released to me. Dr. Sarriera said that he has had patient go into full remission with in six months of the Revlimid and others have taken up to a year or more. I will take the Revlimid for 21 days and then have 7 days off, if I am not allergic to it. This will continue the rest of my life. There was mention of me going to an allergist for desensitizing if I am allergic to it. This would have to be in Tampa. UGH!!
I will have to do labs about every 2 months once I am on the Revlimid schedule. And have to see Dr. Sarriera about every 6 to 8 weeks. This will continue until forever too. Guess Kristi or Matt, or maybe even Sasha or Ellie, will have to drive us to the Cancer Center once we are no longer able to drive. ;)
I will continue to take Acyclovir (virus protection pill), Lyrica (for my neuropathy), Statin (for cholesterol), vitamin B12 complex and calcium with vitamin D. Also, will continue the Zometa drip (helps strengthens my bones) every 3 months. He wants me to start taking a low dose aspirin daily once I start taking the Revlimid. Even after months of pill taking, I still hate to take pills. Never really took a lot of pills before this "C" came in to my life other than an occasional Aleve and my cholesterol pill. Well, at least Bill doesn't have to cut them in half any more!!! He did this with several of them so I could swallow them without gaging.
I have been feeling pretty good. Getting back to my life. It's a different life but that too is okay. It will never be the same as before cancer. It's a more appreciative life. A more "me" life. A more "Bill" life. A more 'family" life. I will get back to my life but a life after cancer will be different.
We have had some visitors from PA. Sandy and Denny are here for 5 weeks. Several which have already gone. Didn't see them the first week. Sandy's Dad and friend were here. Second week Denny was sick. Finally was able to go over to their condo for dinner last Saturday night. Then again tonight after my doctor's appointment. We hope to get together several more times before they leave. It all depends on me and how I am feeling. Hate that but it's how it has to be for a while.
Ventured out to Kohls with Bill the other day. I was able to shop for about an hour. (I used spend hours there with Louise or Nancy or Sandy at one time.) Needed some new clothes as I lost around 26 lbs since all this started. I didn't try anything on there because dressing rooms are not clean. I am becoming a germaphobic. But my immune system is still not fully recovered and I am not taking chances. So, of course, I had to return things that didn't fit. So back I went again. This time Sandy was my driver. We were there a little over an hour and I was ready to go. Tiring. But these little adventures help with my strength building.
Now if only my hair would grow faster. When I look in the mirror and see this bald head, I feel like crying but instead I just start singing - her long blonde hair, lying on the barber's floor, she doesn't need it long anymore, Lady Godiva or hair, long beautiful hair. Makes me laugh because I didn't have long blonde hair or long beautiful hair and also I can't sing.
Quote:
Sometimes life is about the ability to believe in where you are going even when you are not sure what lies ahead.
Monday, February 6, 2017
Olemons!
Today we went to Tampa for my almost 3 month check up with my transplant doctor, Dr. Ochao. I have dreaded this appointment because I was afraid there would be something that would cause me to be put back in the hospital or have to stay in that hotel over night because needed some other test tomorrow or the next day. Talk about anxiety. Well, neither of those two things happened. In fact, I will not need to go back to Tampa for a long, long time. One exception, which I will cover later. Labs were drawn (5 tubes) around 11:30. Then we went to lunch because my appointment with Dr. Ochao wasn't until 1. After lunch, we went to the beauty shop for me to try on a wig. Not ready for that yet. Didn't like the colors or the style either.
Then from there we went back to the 4th floor to the MBT Clinic for my appt with Dr. Ochao. While waiting, there were a few people talking about their transplants. One lady was just a week out. The other lady said her husband was 9 1/2 years out. He was told his cancer, at the time of the transplant, would probably be back within 3 years. His cancer is Multiple Myeloma. Then another gentlemen spoke up saying he was also 9 1/2 years out. Was told 3 years also. His cancer is also Multiple Myeloma!!! Was wonderful hearing these two stories. I would have talked to the one gentleman but was called back for my appointment. And what a great appointment it was. First they took me to get my first two vaccinations. Flu and Pneumococcal Conjugate (pneumonia, bacteremia, meningitis).
Dr. Ochao was happy to see how different I looked since the last time he saw me. He said at that time he remembers that I wasn't eating or drinking much. That I needed to go home and do our own cooking. Told him, best choice he ever made. My labs all look incredible. 3 months ago, my lab report showed just about all the blood tests out of range. Today's reports showed 3 blood tests out of about 50, somewhat out of range. Awesome!! My IGE test, the one Dr. Ochoa likes to use to measure my Myeloma, prior to my transplant was 50,000 plus, which was off the charts. Prior to leaving the hotel to come home, was 9800. This, too, is a significant improvement. Today's IGE test results will not be available for 2 more days. We discussed if Kristi and Kerri should be tested for Multiple Myeloma. Reason being that IGE is related to allergies such as asthma, which both our girls have. Answer was a big NO. Multiple Myeloma, which we knew, is not hereditary but was concerned because of the IGE and its relationship to allergies. Dr. Ochao was pleased with my activity level so far, walking, some housework, cooking. I talked to him about my energy level being up and down and this is to be expected for a bit yet. I talked to him about my days of being down, weepy. And about never being able to say - I HAD cancer and always having to say - I HAVE cancer. He truly understood. His comment back was it's like sleeping with a snake under your pillow. We then discussed my vaccinations that I will need over the next 5 years!! He is comfortable with these vaccinations being administered by Dr. Sarriera's office or my family doctor. No need to drive to Tampa unless, the one exception I mentioned earlier, there is a vaccine not available for a shot I need.
Discussed the minute holes in my scalp and various other bones caused by the Myeloma that will not go any deeper. He is releasing my care to Dr. Sarriera and I will not have to go back to see him again unless there are signs in my labs or my chemistry make up or I have abnormal bone pain. And I hope and pray that will be a long time, if ever, from now. So I am pretty much done with Tampa. Nothing against you Tampa but I am pretty happy about that as my time spent in Tampa was the worse time of my life. I have put a lot of it out of my mind and can't remember things that happen that Bill will talk about! And I normally have a good memory.
I have an appointment with Dr. Sarriera next Tuesday. He wanted to see me shortly after my Tampa appointment. Guess we will be discussing my maintenance program as we move onward. Now we need this neuropathy to go away.
Olemons - I was having a not so good day that other day and I sent my grocery list to Bill. He didn't get any "O le mons" because he wasn't sure what they were. Lemons! Guess my finger added an extra letter. Was good for a laugh for a few days.
Quote:
Remember how far you've come, not just how far you have to go. You may not be where you want to be, but neither are you where you used to be!
Today we went to Tampa for my almost 3 month check up with my transplant doctor, Dr. Ochao. I have dreaded this appointment because I was afraid there would be something that would cause me to be put back in the hospital or have to stay in that hotel over night because needed some other test tomorrow or the next day. Talk about anxiety. Well, neither of those two things happened. In fact, I will not need to go back to Tampa for a long, long time. One exception, which I will cover later. Labs were drawn (5 tubes) around 11:30. Then we went to lunch because my appointment with Dr. Ochao wasn't until 1. After lunch, we went to the beauty shop for me to try on a wig. Not ready for that yet. Didn't like the colors or the style either.
Then from there we went back to the 4th floor to the MBT Clinic for my appt with Dr. Ochao. While waiting, there were a few people talking about their transplants. One lady was just a week out. The other lady said her husband was 9 1/2 years out. He was told his cancer, at the time of the transplant, would probably be back within 3 years. His cancer is Multiple Myeloma. Then another gentlemen spoke up saying he was also 9 1/2 years out. Was told 3 years also. His cancer is also Multiple Myeloma!!! Was wonderful hearing these two stories. I would have talked to the one gentleman but was called back for my appointment. And what a great appointment it was. First they took me to get my first two vaccinations. Flu and Pneumococcal Conjugate (pneumonia, bacteremia, meningitis).
Dr. Ochao was happy to see how different I looked since the last time he saw me. He said at that time he remembers that I wasn't eating or drinking much. That I needed to go home and do our own cooking. Told him, best choice he ever made. My labs all look incredible. 3 months ago, my lab report showed just about all the blood tests out of range. Today's reports showed 3 blood tests out of about 50, somewhat out of range. Awesome!! My IGE test, the one Dr. Ochoa likes to use to measure my Myeloma, prior to my transplant was 50,000 plus, which was off the charts. Prior to leaving the hotel to come home, was 9800. This, too, is a significant improvement. Today's IGE test results will not be available for 2 more days. We discussed if Kristi and Kerri should be tested for Multiple Myeloma. Reason being that IGE is related to allergies such as asthma, which both our girls have. Answer was a big NO. Multiple Myeloma, which we knew, is not hereditary but was concerned because of the IGE and its relationship to allergies. Dr. Ochao was pleased with my activity level so far, walking, some housework, cooking. I talked to him about my energy level being up and down and this is to be expected for a bit yet. I talked to him about my days of being down, weepy. And about never being able to say - I HAD cancer and always having to say - I HAVE cancer. He truly understood. His comment back was it's like sleeping with a snake under your pillow. We then discussed my vaccinations that I will need over the next 5 years!! He is comfortable with these vaccinations being administered by Dr. Sarriera's office or my family doctor. No need to drive to Tampa unless, the one exception I mentioned earlier, there is a vaccine not available for a shot I need.
Discussed the minute holes in my scalp and various other bones caused by the Myeloma that will not go any deeper. He is releasing my care to Dr. Sarriera and I will not have to go back to see him again unless there are signs in my labs or my chemistry make up or I have abnormal bone pain. And I hope and pray that will be a long time, if ever, from now. So I am pretty much done with Tampa. Nothing against you Tampa but I am pretty happy about that as my time spent in Tampa was the worse time of my life. I have put a lot of it out of my mind and can't remember things that happen that Bill will talk about! And I normally have a good memory.
I have an appointment with Dr. Sarriera next Tuesday. He wanted to see me shortly after my Tampa appointment. Guess we will be discussing my maintenance program as we move onward. Now we need this neuropathy to go away.
Olemons - I was having a not so good day that other day and I sent my grocery list to Bill. He didn't get any "O le mons" because he wasn't sure what they were. Lemons! Guess my finger added an extra letter. Was good for a laugh for a few days.
Quote:
Remember how far you've come, not just how far you have to go. You may not be where you want to be, but neither are you where you used to be!
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