Wow. It was kind of a tough day today. They started out today just giving me one of the drugs that doesn't have the lingering side effects, but has the immediate ones. So I kept the nurses busy between chills, aches which they counteracted with one medicine. Then the afternoon was fever, sweating, killer headache and ta-da......Throwing up in a room full of people numerous times. But everyone just looked at me like...been there done that, hang in there.....Lots of people in there wanting to share experiences. Good thing Roger was there to keep up the conversations. But I got through it. Came home and took a shower and felt better. Even my headache is gone now. I really appreciated the nurse I had. She was patient, and taught me, and was understanding and trying her best to find things to make it easier.
Tomorrow is another day. Two different chemo drugs tomorrow, but shouldn't be nearly as bad they tell me. And it should only be a few hours too. Today was very long. But one day down!!!
Monday, February 28, 2011
Saturday, February 26, 2011
Portacath
For those just joining in on this blog, I was diagnosed with Chronic Lymphocytic Leukemia about a year and a half ago. After watching it over that time, it has become time to start to treat it.
I feel weird doing all of this. I have always been so healthy and it is all new to me. I'm much more comfortable treating patients, not being one. Yesterday I had the surgery to put in the portacath. It is a nifty port they insert under the skin on your chest. It makes access for chemo much easier and blood draws can be made from it too. It requires no special wrapping or bandaging so I can do normal things like swim and shower without worrying. I am still pretty sore from it today. I have very tender skin and just from the tape of the surgery drape, I turned all red but it is better today.
I'm trying to enjoy the last two days of freedom, but I've had a headache since the procedure and just can't get rid of it. Nausea too. Better get used to that!
The chemo will be given at Dr. Te's clinic Mon-Thurs next week for round one. I sure hope he has wi-fi. Day one will be the Rituxan, which he has assured me I will have a reaction to. Everyone does. But they premedicate, and run it slowly to keep it in control. I'll let you know how it goes Monday night (I hope).
I feel weird doing all of this. I have always been so healthy and it is all new to me. I'm much more comfortable treating patients, not being one. Yesterday I had the surgery to put in the portacath. It is a nifty port they insert under the skin on your chest. It makes access for chemo much easier and blood draws can be made from it too. It requires no special wrapping or bandaging so I can do normal things like swim and shower without worrying. I am still pretty sore from it today. I have very tender skin and just from the tape of the surgery drape, I turned all red but it is better today.
I'm trying to enjoy the last two days of freedom, but I've had a headache since the procedure and just can't get rid of it. Nausea too. Better get used to that!
The chemo will be given at Dr. Te's clinic Mon-Thurs next week for round one. I sure hope he has wi-fi. Day one will be the Rituxan, which he has assured me I will have a reaction to. Everyone does. But they premedicate, and run it slowly to keep it in control. I'll let you know how it goes Monday night (I hope).
Thursday, February 24, 2011
Chemo starts February 28th
Once they decide to get you started on your chemo regimen, they move fast! I met with Dr. Te today. We discussed the results of my CT scan. Most of my affected nodes are in my neck, head and jaw. They are numerous and some have grown, but not dramatically from the last scan. I do have some new inguinal nodes that were not there on the last scan. The rest of the axillary and abdominal ones have basically stayed the same. My blood tests showed another big increase in my white blood count, and in my absolute lymphocyte count. Along with the fatigue, night sweats, and fever, Dr. Te just said lets get treatment started.
So tomorrow (Friday the 25th), they will surgically put in the portacath in my chest which the chemo will be given through. From everyone I've talked to and what I've read, this is a great option so there won't be so many holes in my arms, and my veins won't take a beating. Then Monday the chemo will start. I will go Monday, Tuesday, Wednesday, and Thursday for the first cycle. And then I will have 24 days off. The rest of the cycles will only be on Monday, Tuesday and Wednesday. Probably 6 months worth.
This chemo has shown great remission rates lasting around 7 years. It is a blessing to have such great advances in medicine that will continue even as I go through my journey. Dr. Te says that he will keep me on antibiotics for the 6 months to prevent shingles which is a common complication. They can control the miserableness of the old days of chemo with drugs to help with nausea and pain. So I am encouraged and hope to be as well as possible during the cycle.
I am nervous, but I am also ready for this. It is hard to just watch and wait and wonder. I have been so tired, and drained and just not wanting to do much. So I know this will be a tough road, but I look forward to coming out the other side and hopefully feeling myself again. I am tired of being tired.
Thanks for reading, and caring. I will hopefully post often and can let out a little venting here.
So tomorrow (Friday the 25th), they will surgically put in the portacath in my chest which the chemo will be given through. From everyone I've talked to and what I've read, this is a great option so there won't be so many holes in my arms, and my veins won't take a beating. Then Monday the chemo will start. I will go Monday, Tuesday, Wednesday, and Thursday for the first cycle. And then I will have 24 days off. The rest of the cycles will only be on Monday, Tuesday and Wednesday. Probably 6 months worth.
This chemo has shown great remission rates lasting around 7 years. It is a blessing to have such great advances in medicine that will continue even as I go through my journey. Dr. Te says that he will keep me on antibiotics for the 6 months to prevent shingles which is a common complication. They can control the miserableness of the old days of chemo with drugs to help with nausea and pain. So I am encouraged and hope to be as well as possible during the cycle.
I am nervous, but I am also ready for this. It is hard to just watch and wait and wonder. I have been so tired, and drained and just not wanting to do much. So I know this will be a tough road, but I look forward to coming out the other side and hopefully feeling myself again. I am tired of being tired.
Thanks for reading, and caring. I will hopefully post often and can let out a little venting here.
Monday, February 14, 2011
Monday February 14, 2011
Hi everyone. New news after this past visit with Dr. Te. I have felt things changing over the past 3 months and knew things have been going on, just from the way I have felt. The dizziness rarely goes away and can be annoying. I have been so much more fatigued as well. Things that didn't tire me out a few months ago, are now tiring me. When I have to sit in my car and rest between Costco and Walmart, I know something is up. I have also had the "night sweats" that come along with cancer sometimes. Poor Roger. I have tried to deal with this symptom without disrupting his life too much. I put down extra linens on my side of the bed at bedtime, and shed them as the night goes on. That gets quite bothersome and not very peaceful. Also I have started having random fevers that are not associated with any sickness.
So as Roger and I met with Dr. Te and his nurse practitioner, Kay, I let them know the things that had been changing. I also had my latest labs drawn and had the results. My white count is up from last time, my lymphocytes are up, and my neutrophils, which have always been in the normal range, are now high and out of the normal range. That's a new one, I will have to find out what it means.
So after taking the whole picture into account, Dr. Te said it's time to start treatment. He wants to get another CT scan and see if my internal nodes have changed. The ones I can feel on my neck, head, clavicle, armpit, and jaw, are not huge, but they have grown. I know because I tend to feel them every day hoping they are gone:) Then he wants to get a bone marrow biopsy too to see how involved the bone marrow is. The nurse explained to to me like this: There are cancerous white cells that I produce. These are created in the bone marrow then go on their merry way. Instead of fighting off germs and then dying a normal death like a normal white blood cell would do, they don't fight anything, then don't die. So they are left to just float around and do no good. They can either stay in the bloodstream, gather in nodes, or push out the good red blood cells from the marrow. Or they can do all three. It is different in everyone's case. We know it is in my blood from my blood tests, we know I have some amount in nodes because we can feel them. So once he finds out how much, if any is in the bone marrow, he will have a baseline to start treatment from. And he will know how many cycles of chemo can be expected to get rid of it. (Usually 6).
So it looks like I will probably be making more use of this post for a while and will hopefully keep everyone updated. My CT is on February 21st and I meet with Dr. Te on the 24th. I am unclear if this is the day of my bone marrow biopsy, but I think it will be. So as soon as I know more, I will pass it one. Thanks everyone for your love and prayers, I do feel them.
I wrote Mandy a letter she should be getting tomorrow. And Roger talked to her mission president this morning just to let him know she might need someone to talk to. President Christiansen says he and Mandy are close and that he will take care of her. Such good news to hear that she will be in good hands.
So as Roger and I met with Dr. Te and his nurse practitioner, Kay, I let them know the things that had been changing. I also had my latest labs drawn and had the results. My white count is up from last time, my lymphocytes are up, and my neutrophils, which have always been in the normal range, are now high and out of the normal range. That's a new one, I will have to find out what it means.
So after taking the whole picture into account, Dr. Te said it's time to start treatment. He wants to get another CT scan and see if my internal nodes have changed. The ones I can feel on my neck, head, clavicle, armpit, and jaw, are not huge, but they have grown. I know because I tend to feel them every day hoping they are gone:) Then he wants to get a bone marrow biopsy too to see how involved the bone marrow is. The nurse explained to to me like this: There are cancerous white cells that I produce. These are created in the bone marrow then go on their merry way. Instead of fighting off germs and then dying a normal death like a normal white blood cell would do, they don't fight anything, then don't die. So they are left to just float around and do no good. They can either stay in the bloodstream, gather in nodes, or push out the good red blood cells from the marrow. Or they can do all three. It is different in everyone's case. We know it is in my blood from my blood tests, we know I have some amount in nodes because we can feel them. So once he finds out how much, if any is in the bone marrow, he will have a baseline to start treatment from. And he will know how many cycles of chemo can be expected to get rid of it. (Usually 6).
So it looks like I will probably be making more use of this post for a while and will hopefully keep everyone updated. My CT is on February 21st and I meet with Dr. Te on the 24th. I am unclear if this is the day of my bone marrow biopsy, but I think it will be. So as soon as I know more, I will pass it one. Thanks everyone for your love and prayers, I do feel them.
I wrote Mandy a letter she should be getting tomorrow. And Roger talked to her mission president this morning just to let him know she might need someone to talk to. President Christiansen says he and Mandy are close and that he will take care of her. Such good news to hear that she will be in good hands.
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