Thoughts?
Seems I have been a wee bit sad; perhaps depressed the past few days. Holidays tend to do that to me. I know they shouldn't but even at almost 70; I cannot help myself.
I think my Mom was on my mind a lot. I'm having a difficult time getting her death certificate so I can do the things that need to be done. After I called for the third time, I was told in a few days. It is a government piece of paper so who knows how long it will take. Just that act, brought her to mind. I think what I most regret is the wonderful life we could have had if she had not been so insecure and so mean. I'm sure my own hard head made things a little worse. Even so, I miss her. I would have called her on Thanksgiving day.
Thanksgiving was a little lonely. While I knew everyone had a place to go and the rest could not make it this far, I still missed them all. We were invited two places but preferred to stay out of groups because of my low immunity. Christmas they will all be home and we'll have a wonderful time.
Now I feel better. I've vented my depression and my sad feelings. That's what a blog or a journal is good for. When you write your feelings out, reread it for errors in the blog, your mind and heart releases it's bad vibes and the good vibes come in. That's one of the reasons I started the blog back. I'm glad when people read it; but it isn't necessary because it's more for me.
11/30/14
11/29/14
More thoughts:
I can't help feeling that God has sent me so many angels in my illness. There were some, but few, people I could have done without. Like the first oncologist that just didn't seem interested in helping me. For the most part, each place I went I found at least one, usually more, wonderful souls that gave me such loving care. I think my smiles and treating them like I would want to be treated made a difference.
My sister-in-law loaned me a walker and a wheelchair. These were a necessity for a couple of months as I worked to get my strength back. Now I am almost back to my old self. Most of the medicine I take do make me dizzy and a little unsure of myself, so I take my time and walk slow.
During all this, my mother had to be put in a nursing home. I could talk to her on the phone but couldn't go out to Texas to be with her. Luckily she had friends that went to see her and watched out for her. I knew when I had to make that decision that she did not have many days left. She did live a couple of months but had Alzheimer's and her memory was fast leaving her. She died alone, which will always stick with me. I knew I could not go but it didn't make it any easier. And for a lot of you who know me, you know that Mom and I didn't have the best of relationships. Being the last living relative and loving her no matter what made it harder. There was a nice graveside service which the funeral director was nice enough to share on his phone.
One of the side effects of chemo is numbness in my fingers. This is not bad and I've learned to deal with it. The other is edema in my legs. That is a result of the disease. Thanks to a water pill it has gone down considerably. But not completely. At least now I can wear regular shoes most days. I bought larger sizes to get me through the really bad swelling.
Although I am now more independent, I have to say I got very spoiled. Having everything done for me by a loving husband was wonderful when I was so ill and weak I couldn't do for myself. But I wanted my life back with all the bad stuff and good stuff. Still, sometimes I miss being so pampered.
I have about covered all the illness I can think of. I will have to think up some new stuff to write about now. Not that I won't add a little as time passes and new experiences pop up.
I can't help feeling that God has sent me so many angels in my illness. There were some, but few, people I could have done without. Like the first oncologist that just didn't seem interested in helping me. For the most part, each place I went I found at least one, usually more, wonderful souls that gave me such loving care. I think my smiles and treating them like I would want to be treated made a difference.
My sister-in-law loaned me a walker and a wheelchair. These were a necessity for a couple of months as I worked to get my strength back. Now I am almost back to my old self. Most of the medicine I take do make me dizzy and a little unsure of myself, so I take my time and walk slow.
During all this, my mother had to be put in a nursing home. I could talk to her on the phone but couldn't go out to Texas to be with her. Luckily she had friends that went to see her and watched out for her. I knew when I had to make that decision that she did not have many days left. She did live a couple of months but had Alzheimer's and her memory was fast leaving her. She died alone, which will always stick with me. I knew I could not go but it didn't make it any easier. And for a lot of you who know me, you know that Mom and I didn't have the best of relationships. Being the last living relative and loving her no matter what made it harder. There was a nice graveside service which the funeral director was nice enough to share on his phone.
One of the side effects of chemo is numbness in my fingers. This is not bad and I've learned to deal with it. The other is edema in my legs. That is a result of the disease. Thanks to a water pill it has gone down considerably. But not completely. At least now I can wear regular shoes most days. I bought larger sizes to get me through the really bad swelling.
Although I am now more independent, I have to say I got very spoiled. Having everything done for me by a loving husband was wonderful when I was so ill and weak I couldn't do for myself. But I wanted my life back with all the bad stuff and good stuff. Still, sometimes I miss being so pampered.
I have about covered all the illness I can think of. I will have to think up some new stuff to write about now. Not that I won't add a little as time passes and new experiences pop up.
11/26/14
Mish-Mash:
Back home after my second PET scan. I have an office visit with Dr. Montgomery on Monday when I will get results. Praying it will show more shrinkage.
I covered the early illness and the hospital stay, the diagnosis, and starting chemo. Since then there have been three more chemos. Each one is about three to four hours of sitting in a big recliner with tubes coming out of my port. Sherry, my nurse keeps a close watch, and comes by to check on me. I take a big oriental embroidered bag full of my "stuff". My Kindle, snacks, water, tissue, and anything else I think might be needed or wanted. I take my blankie because the room is fairly cool. Has to be for the way those four nurses run around.
The infusion room has fifteen chairs. When I have been there, it is usually full. The four nurses are so wonderful at what they do. If they can't get an iv in someone's arm, they are terribly hurt. I know they try to stay objective but my girl, Sherry, has become attached to us (Bill and I). We don't leave without a big hug and a kiss on the cheek. I watched and it seems all of them have favorites. I'm glad I am a favorite. Her hug means a lot to me.
In fact, everyone, patients and staff, seem to be in good moods. Maybe some are grouchy; but in a way I can understand. But I have found that being upbeat and happy helps you get through this disease a lot easier. True to my personality, I have made quite a few friends there.
Just before the second chemo, my hair had begun to fall out by the handfuls. They had prepared me for that. I went to the sweetheart gal who has done my hair for years; and she shaved the rest off. Was a heart wrenching moment as I watched it go. Now I have about lost my eyelashes and eyebrows. Strangely the unsightly mustache under my nose continues to grow but it is solid white now. It will all come back I know. At first it was hard for me to go out in public. Even with a hat or scarf. Gradually I grew to accept it and go on. Now frequently I have women come up to me and tell me to be strong, or to fight, or just that they had been there. That means a lot to me.
More mish-mash tomorrow
Back home after my second PET scan. I have an office visit with Dr. Montgomery on Monday when I will get results. Praying it will show more shrinkage.
I covered the early illness and the hospital stay, the diagnosis, and starting chemo. Since then there have been three more chemos. Each one is about three to four hours of sitting in a big recliner with tubes coming out of my port. Sherry, my nurse keeps a close watch, and comes by to check on me. I take a big oriental embroidered bag full of my "stuff". My Kindle, snacks, water, tissue, and anything else I think might be needed or wanted. I take my blankie because the room is fairly cool. Has to be for the way those four nurses run around.
The infusion room has fifteen chairs. When I have been there, it is usually full. The four nurses are so wonderful at what they do. If they can't get an iv in someone's arm, they are terribly hurt. I know they try to stay objective but my girl, Sherry, has become attached to us (Bill and I). We don't leave without a big hug and a kiss on the cheek. I watched and it seems all of them have favorites. I'm glad I am a favorite. Her hug means a lot to me.
In fact, everyone, patients and staff, seem to be in good moods. Maybe some are grouchy; but in a way I can understand. But I have found that being upbeat and happy helps you get through this disease a lot easier. True to my personality, I have made quite a few friends there.
Just before the second chemo, my hair had begun to fall out by the handfuls. They had prepared me for that. I went to the sweetheart gal who has done my hair for years; and she shaved the rest off. Was a heart wrenching moment as I watched it go. Now I have about lost my eyelashes and eyebrows. Strangely the unsightly mustache under my nose continues to grow but it is solid white now. It will all come back I know. At first it was hard for me to go out in public. Even with a hat or scarf. Gradually I grew to accept it and go on. Now frequently I have women come up to me and tell me to be strong, or to fight, or just that they had been there. That means a lot to me.
More mish-mash tomorrow
11/25/14
Coming home:
Once I got home, I realized how sick I had been. Now I was dealing with weakened muscles and an extremely large weight loss.
Three days after coming home, the oncologist's office called to set up an appointment. The results of the bone marrow and biopsy where in. I was scared because I now knew that it was cancer; but not what kind or how bad.
Dr. Montgomery assured me that the news was good. 3rd stage follicular lymphoma was the diagnosis. This type of cancer is highly curable and she gave me a 90% chance of surviving and being well.
In another two days, I had been given a schedule for the next month starting with the first infusion. That chemo was heavy and lasted about six hours. I was completely in the dark as to what was going to happen. I had also been given a huge bag of pills. Pills to keep me from being nauseous and Prednisone, for what I don't remember, and a few other assorted chemo type pills. The next day I went back for an injection which was part of the chemo and was to up my white blood cells.
Once a week for the next three weeks I returned to get lab work done to make sure my hemoglobin among other markers were getting better which they were. This cancer center is a one stop center. Your blood work is done there, ct scans and PET scans are done there, the infusion is done there and your doctor is on site. The people are super and helpful and caring. I was assigned a nurse who has become my friend.
The doctor and Sherry, my nurse, had told me I would feel better after the chemo. I had been so sick that it wouldn't have taken much to make me feel better. And they were right. I did feel better. After the second I felt even more so. I was getting my strength back and eating good again. Seems the nausea was part of the disease. Before the second chemo, I had a port put in at the hospital. Makes it much easier to access and keeps my arms in better condition. The chemo is very hard on your veins.
My gastroenterologist, Dr. Ahmadi, has continued to see me to monitor the liver lesion. He's also the angel who had the foresight to do the unusual blood work and see the need for me to be in the hospital. Without that, I don't think I would have survived. I tell him he is an angel and he turns bright red.
I have now had four chemo's. I go tomorrow for a PET scan to see how the tumors are progressing. Have two more chemo's scheduled. There could be more but won't know until the results of the scans are read.
A lot of my strength has returned and I continue to work on it. My eating has been so good, I now am having to watch what I eat so I won't balloon back up to 198 which is where I started. I like a slimmer me and I feel better but I continue to eat good things. Eating all that candy, chips, and sweets was fun though. Now I just have to be more conservative.
Once I got home, I realized how sick I had been. Now I was dealing with weakened muscles and an extremely large weight loss.
Three days after coming home, the oncologist's office called to set up an appointment. The results of the bone marrow and biopsy where in. I was scared because I now knew that it was cancer; but not what kind or how bad.
Dr. Montgomery assured me that the news was good. 3rd stage follicular lymphoma was the diagnosis. This type of cancer is highly curable and she gave me a 90% chance of surviving and being well.
In another two days, I had been given a schedule for the next month starting with the first infusion. That chemo was heavy and lasted about six hours. I was completely in the dark as to what was going to happen. I had also been given a huge bag of pills. Pills to keep me from being nauseous and Prednisone, for what I don't remember, and a few other assorted chemo type pills. The next day I went back for an injection which was part of the chemo and was to up my white blood cells.
Once a week for the next three weeks I returned to get lab work done to make sure my hemoglobin among other markers were getting better which they were. This cancer center is a one stop center. Your blood work is done there, ct scans and PET scans are done there, the infusion is done there and your doctor is on site. The people are super and helpful and caring. I was assigned a nurse who has become my friend.
The doctor and Sherry, my nurse, had told me I would feel better after the chemo. I had been so sick that it wouldn't have taken much to make me feel better. And they were right. I did feel better. After the second I felt even more so. I was getting my strength back and eating good again. Seems the nausea was part of the disease. Before the second chemo, I had a port put in at the hospital. Makes it much easier to access and keeps my arms in better condition. The chemo is very hard on your veins.
My gastroenterologist, Dr. Ahmadi, has continued to see me to monitor the liver lesion. He's also the angel who had the foresight to do the unusual blood work and see the need for me to be in the hospital. Without that, I don't think I would have survived. I tell him he is an angel and he turns bright red.
I have now had four chemo's. I go tomorrow for a PET scan to see how the tumors are progressing. Have two more chemo's scheduled. There could be more but won't know until the results of the scans are read.
A lot of my strength has returned and I continue to work on it. My eating has been so good, I now am having to watch what I eat so I won't balloon back up to 198 which is where I started. I like a slimmer me and I feel better but I continue to eat good things. Eating all that candy, chips, and sweets was fun though. Now I just have to be more conservative.
11/24/14
The Hospital
Once I was stabilized in the er, they transferred me to Medical ICU; step down from just plain ICU. The fact that they were putting me in the Medical ICU disturbed hubby and the family. They knew that I had been near death when I went into the er and so they were holding their breaths for good news.
It was a wonderful room. One of the nicest hospital rooms I'd ever been in. Completely paneled in a beautiful wood. Naturally it held all the usual equipment to keep you alive and well. And I had my own special nurse.
I liked that first nurse. It was late at night and I was so extremely tired. However, a male nurse from er and a young volunteer rolled me up to the Medical ICU. There they transferred me to the new bed (which was extremely comfortable for a hospital bed). As they tossed me over (that's what it felt like), I noticed how cute the volunteer was. And for whatever reason, I asked "So you are a volunteer?" He answered, "Yes Ma'am." Which I promptly returned with, "You are adorable." My nurse who turned out to have a great sense of humor said, "Oh, I already like her, she's a kidder." She went off duty and was gone the rest of the time I was there. I missed her because the other two were not nearly as much fun.
They continued to pour blood and fluids and who knows what else into me. I didn't seem to get any better. They continued to take blood and do more tests which I can't possibly remember. Sometime the next day I began to get better although still not where the doctors wanted. That was when I met Dr. Montgomery, now my oncologist. She ordered a bone marrow test. And that was where I first met Dr. Smith who is the Radiologist there. He is a trip. He did several ct scans. After that, Dr. Montgomery came in to see me.
I had mentioned that the "c" word had been mentioned several times during those 9 months I continued to spiral down. She looked at me and said, "I think you may have follicular lymphoma but I want to do a biopsy." Once again I was wheeled into Dr. Smith's inner sanctum. All the tests he had done were done using the ct scan machine to pinpoint the area to be used. And since my blood pressure was so very low they were afraid to give me anesthesia which would lower it more. So none of these were exactly comfortable.
I kept thinking the pain was worth the probability that I would know what had made me so sick. Although the bone marrow test results and the biopsy results were not going to be back for a week, I felt and Dr. Montgomery felt we were on the right tract. She told me that all my symptoms were the same as the lymphoma. And she asked me if I wanted her to send the results to the first oncologist. Well, by this time I was in love with this tiny, gentle lady and I, of course, said no. I wanted to stick with her. Which caused a bit of problem she was not covered by my supplemental insurance. But that's another story.
Another night in a regular hospital room (oh what a difference that was) and I came home; weak, tired, and scared. I knew it could be a week before we had the results but at least I was home and sleeping in my own bed.
Next blog I'll go from here.
Once I was stabilized in the er, they transferred me to Medical ICU; step down from just plain ICU. The fact that they were putting me in the Medical ICU disturbed hubby and the family. They knew that I had been near death when I went into the er and so they were holding their breaths for good news.
It was a wonderful room. One of the nicest hospital rooms I'd ever been in. Completely paneled in a beautiful wood. Naturally it held all the usual equipment to keep you alive and well. And I had my own special nurse.
I liked that first nurse. It was late at night and I was so extremely tired. However, a male nurse from er and a young volunteer rolled me up to the Medical ICU. There they transferred me to the new bed (which was extremely comfortable for a hospital bed). As they tossed me over (that's what it felt like), I noticed how cute the volunteer was. And for whatever reason, I asked "So you are a volunteer?" He answered, "Yes Ma'am." Which I promptly returned with, "You are adorable." My nurse who turned out to have a great sense of humor said, "Oh, I already like her, she's a kidder." She went off duty and was gone the rest of the time I was there. I missed her because the other two were not nearly as much fun.
They continued to pour blood and fluids and who knows what else into me. I didn't seem to get any better. They continued to take blood and do more tests which I can't possibly remember. Sometime the next day I began to get better although still not where the doctors wanted. That was when I met Dr. Montgomery, now my oncologist. She ordered a bone marrow test. And that was where I first met Dr. Smith who is the Radiologist there. He is a trip. He did several ct scans. After that, Dr. Montgomery came in to see me.
I had mentioned that the "c" word had been mentioned several times during those 9 months I continued to spiral down. She looked at me and said, "I think you may have follicular lymphoma but I want to do a biopsy." Once again I was wheeled into Dr. Smith's inner sanctum. All the tests he had done were done using the ct scan machine to pinpoint the area to be used. And since my blood pressure was so very low they were afraid to give me anesthesia which would lower it more. So none of these were exactly comfortable.
I kept thinking the pain was worth the probability that I would know what had made me so sick. Although the bone marrow test results and the biopsy results were not going to be back for a week, I felt and Dr. Montgomery felt we were on the right tract. She told me that all my symptoms were the same as the lymphoma. And she asked me if I wanted her to send the results to the first oncologist. Well, by this time I was in love with this tiny, gentle lady and I, of course, said no. I wanted to stick with her. Which caused a bit of problem she was not covered by my supplemental insurance. But that's another story.
Another night in a regular hospital room (oh what a difference that was) and I came home; weak, tired, and scared. I knew it could be a week before we had the results but at least I was home and sleeping in my own bed.
Next blog I'll go from here.
11/23/14
Describing what happened:
I was fortunate to have a PA (physicians assistant) that took an interest in my health and me. He fought tooth and nail; sometimes against his boss, the Doctor to look for what was causing my symptoms. All anyone ever said was it's a puzzle.
He sent me to a local hematologist/oncologist who decided I had bleeding somewhere probably in the stomach. So my PA, Eric, sent me to a gastroenterologist. He did the usual upper and lower gi scopes. Nothing. An MRI showed a mass in my left side within the stomach. So they went further with an ultrasound endoscopy mainly to check the small lesion on my pancreas. It was decided that it was benign but would have to be watched. Still no bleeding. Then I got to swallow a pill shaped camera which found a small ulcer but no bleeding. All this time the gastroenterologist was monitoring my lab reports as was the PA. Still nothing. After 10 trips to Flagler Hospital for blood infusions and 4 iron infusions, I was slowly going down hill. Could not eat without throwing up. Lost 68 pounds over that 9 months. Looked like I was a living skeleton. Had to have help to get out of bed, out of a chair etc etc. I was giving up just like my body.
Then the gastroenterologist had me have another lab done and he was looking at all kinds of things. Two days after I did the lab, he, himself, called me and said to go to the er at Flagler. My potassium and sodium was non-existent and my hemoglobin had fallen to 6 (supposed to be 11 or 12). I was scared. All these doctors and PA's had batted around the C word. But at the same time I couldn't help but feel that maybe this would be when they discovered what was wrong with me.
Tomorrow I'll cover the hospital stay. Hope this is not boring to my few readers. But it is doing me a world of good to write it down.
I was fortunate to have a PA (physicians assistant) that took an interest in my health and me. He fought tooth and nail; sometimes against his boss, the Doctor to look for what was causing my symptoms. All anyone ever said was it's a puzzle.
He sent me to a local hematologist/oncologist who decided I had bleeding somewhere probably in the stomach. So my PA, Eric, sent me to a gastroenterologist. He did the usual upper and lower gi scopes. Nothing. An MRI showed a mass in my left side within the stomach. So they went further with an ultrasound endoscopy mainly to check the small lesion on my pancreas. It was decided that it was benign but would have to be watched. Still no bleeding. Then I got to swallow a pill shaped camera which found a small ulcer but no bleeding. All this time the gastroenterologist was monitoring my lab reports as was the PA. Still nothing. After 10 trips to Flagler Hospital for blood infusions and 4 iron infusions, I was slowly going down hill. Could not eat without throwing up. Lost 68 pounds over that 9 months. Looked like I was a living skeleton. Had to have help to get out of bed, out of a chair etc etc. I was giving up just like my body.
Then the gastroenterologist had me have another lab done and he was looking at all kinds of things. Two days after I did the lab, he, himself, called me and said to go to the er at Flagler. My potassium and sodium was non-existent and my hemoglobin had fallen to 6 (supposed to be 11 or 12). I was scared. All these doctors and PA's had batted around the C word. But at the same time I couldn't help but feel that maybe this would be when they discovered what was wrong with me.
Tomorrow I'll cover the hospital stay. Hope this is not boring to my few readers. But it is doing me a world of good to write it down.
11/22/14
HERE I AM AGAIN
I wrote a blog for a year some time back; mostly about my alcohol addiction and then just day to day living with a couple of my try at short stories.
Friends and family have suggested to me that I should have started blogging/journaling about my bout with 3rd stage follicular lymphoma when it began. I think it is a good idea to start even though I have had 4 chemos and am doing better. At the beginning I could not possibly have written anything.
My experience with my first blog was interesting, helpful, and led me to some nice blogger friends. But I grew tired of thinking of something to write. So don't be surprised if you don't see a posting everyday.
I now have been in cancer treatment for 4 months. Once a month I have received a chemo treatment. Lots of pills helped to combat symptoms. I have been extremely lucky to have few side effects. Oh, I lost all the hair on my body; which in some cases wasn't such a bad thing. My skin has been extremely dry. My brain sometimes goes into omission mode leaving me grasping for thoughts and words.
I'm 69 years old and had always been in excellent health. What started happening about a year ago will fill many postings.
Last Christmas as we held our annual family/friends soiree, I knew that I did not feel well. The get together is a long standing tradition and I couldn't miss it or disappoint the others. So as usual (little back slapping here) I had planned a wonderful party. And it was great.
As the months began to pass, I felt worse and worse. I begin to lose pounds every day. I was seeing several doctors; all of whom were dumbfounded about what was causing my many symptoms. The decline began to be life threatening. Low hemoglobin count had me at the hospital 10 times for blood infusions. The hematologist was filling me with iron infusions. Although I would be better a few days soon it was back to being incapacitated. What happened next will be in future posts.
I wrote a blog for a year some time back; mostly about my alcohol addiction and then just day to day living with a couple of my try at short stories.
Friends and family have suggested to me that I should have started blogging/journaling about my bout with 3rd stage follicular lymphoma when it began. I think it is a good idea to start even though I have had 4 chemos and am doing better. At the beginning I could not possibly have written anything.
My experience with my first blog was interesting, helpful, and led me to some nice blogger friends. But I grew tired of thinking of something to write. So don't be surprised if you don't see a posting everyday.
I now have been in cancer treatment for 4 months. Once a month I have received a chemo treatment. Lots of pills helped to combat symptoms. I have been extremely lucky to have few side effects. Oh, I lost all the hair on my body; which in some cases wasn't such a bad thing. My skin has been extremely dry. My brain sometimes goes into omission mode leaving me grasping for thoughts and words.
I'm 69 years old and had always been in excellent health. What started happening about a year ago will fill many postings.
Last Christmas as we held our annual family/friends soiree, I knew that I did not feel well. The get together is a long standing tradition and I couldn't miss it or disappoint the others. So as usual (little back slapping here) I had planned a wonderful party. And it was great.
As the months began to pass, I felt worse and worse. I begin to lose pounds every day. I was seeing several doctors; all of whom were dumbfounded about what was causing my many symptoms. The decline began to be life threatening. Low hemoglobin count had me at the hospital 10 times for blood infusions. The hematologist was filling me with iron infusions. Although I would be better a few days soon it was back to being incapacitated. What happened next will be in future posts.
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