Today I called Dr Jabiev's office and raised a little hell. I told them about the crap I was told about needing to have more tests done. The lady I spoke to reviewed my hospital records and said that I had, had all of the tests that needed to be done, at least for now.
So a message was sent to D'Amour Cancer Center about getting me in there sooner. So later today I got a call and they have moved my appointment from the 21st to the 16th. Wow, a whole week sooner. I am not happy with this.
But I also was called back from Dr. Jabiev's office and they moved my appointment with him from the 9th to the 5th. I plan to see what I can learn at that time about waiting so long to get into the cancer center.
I have been trying to learn about the treatment for this type of cancer, not much luck. The American Cancer Society website doesn't tell you anything. So I called the Cancer Centers of America just to get information and no private insurance so no information!! That was oh so helpful NOT!!!
If anyone reading this blog knows where I can get information on the different types of treatment for Adrenal Cortical Cancer please let me know!! Having no idea of what I face scares me to death!
I did a search on the Dana Farber website and got nothing.
An old friend of mine and her husband took me out to City Stage tonight to help get my mind of my troubles and it worked. I really had a good time and laughed a lot. We saw the stage show Forever Kings.
Earlier today I was very low and angry but now I am happier. I finally spent a little time crying for myself. I think in a way that might have been good for me. To get it out of my system.
Wednesday, February 29, 2012
Tuesday, February 28, 2012
Bone Density Results
I left the hospital at 2:30 pm and by 5:15 pm the doctor called to give me the results of the bone density test.Thanks to the Lord!!!
NO CANCER IN MY BONES!!!
The doctor says that the results of my biopsy is not in but, they expect it tomorrow and she will call me with the results when she gets them.
Now this is what I call real good care!
To those of you who are praying for me please add your thanks to the Lord with my prayers of gratitude for these results.
I forgot to tell you that when the doctor called with the results of my test she asked me about my appointment at the D'Amour Cancer Center. She was very upset when she heard that I was told that I had to have more tests and that my appointment is not for another three weeks. This doctor is going to contact Dr. Hu. I have no idea how to spell the name of the doctor that called me.
So my prayers now are that there has been some sort of miscommunication between doctors which now might be closer to correcting. Some of you have posted comments on the posts I have made. I am very grateful for all of your support.
NO CANCER IN MY BONES!!!
The doctor says that the results of my biopsy is not in but, they expect it tomorrow and she will call me with the results when she gets them.
Now this is what I call real good care!
To those of you who are praying for me please add your thanks to the Lord with my prayers of gratitude for these results.
I forgot to tell you that when the doctor called with the results of my test she asked me about my appointment at the D'Amour Cancer Center. She was very upset when she heard that I was told that I had to have more tests and that my appointment is not for another three weeks. This doctor is going to contact Dr. Hu. I have no idea how to spell the name of the doctor that called me.
So my prayers now are that there has been some sort of miscommunication between doctors which now might be closer to correcting. Some of you have posted comments on the posts I have made. I am very grateful for all of your support.
Bone Density Test & D'Amour Cancer Center
Today I went in and had a bone density test. They tell us that nuclear stuff is not good for us yet they use it in medicine????
I went in at 10:30 to get an injection of some sort of nuclear stuff. Then three hours latter is was back to the hospital so they could take images of all my bones. I got to see a couple of the images. I just saw what looked like little dots of light, that moved around on the screen.
I was told that if I was on any pain medicine to take some about an hour before I came back, so I did. They put something over the toes of my shoes to keep my feet together. Then they restrained me. Kind of like a pompous (what Indians carried their babies in) to keep my arms still by my side. I was expected to hold very still for about an hour.
When they started I had RJ and Liz taking care of me, the next thing I knew Joanna was doing my care. She is of Asian descent and spoke with an accent. I had fallen asleep and they were almost done taking the images.
Modern science is amazing. My endocrinologist will have the results either later today or tomorrow. I think this is wonderful. I go to see Doctor "J" (Jabiev) next week on Thursday. I pray that by then he will be able to give me a final diagnosis and suggest treatment options.
Now onto D'Amour Cancer Center. They have me a little worried. I meet a Doctor Hu last Friday and she told me she would see me this Friday to transfer my care from the main hospital over to the cancer center. She said they would call me Monday with the appointment.
No call yesterday so I called them. The lady I spoke to said that she was told to schedule me three weeks out because I had more test to be done. I told her that the only test I was told about was the bone density test that I had just come home from. She is going to send a message to Dr. Hu and see what is going on. I hope to hear from this lady tomorrow. I pray that it is a miscommunication error and not more tests!!!
I don't want to wait until the 23rd of March to start treatment if I don't have to. And if they need to do more tests on me I want to know when, where and why. I thought that last week they did enough poking and prodding of me!
By the way Brooke came with me to this appointment and we had a good day together. She is being very supportive. I am very blessed to have her in my life.
I went in at 10:30 to get an injection of some sort of nuclear stuff. Then three hours latter is was back to the hospital so they could take images of all my bones. I got to see a couple of the images. I just saw what looked like little dots of light, that moved around on the screen.
I was told that if I was on any pain medicine to take some about an hour before I came back, so I did. They put something over the toes of my shoes to keep my feet together. Then they restrained me. Kind of like a pompous (what Indians carried their babies in) to keep my arms still by my side. I was expected to hold very still for about an hour.
When they started I had RJ and Liz taking care of me, the next thing I knew Joanna was doing my care. She is of Asian descent and spoke with an accent. I had fallen asleep and they were almost done taking the images.
Modern science is amazing. My endocrinologist will have the results either later today or tomorrow. I think this is wonderful. I go to see Doctor "J" (Jabiev) next week on Thursday. I pray that by then he will be able to give me a final diagnosis and suggest treatment options.
Now onto D'Amour Cancer Center. They have me a little worried. I meet a Doctor Hu last Friday and she told me she would see me this Friday to transfer my care from the main hospital over to the cancer center. She said they would call me Monday with the appointment.
No call yesterday so I called them. The lady I spoke to said that she was told to schedule me three weeks out because I had more test to be done. I told her that the only test I was told about was the bone density test that I had just come home from. She is going to send a message to Dr. Hu and see what is going on. I hope to hear from this lady tomorrow. I pray that it is a miscommunication error and not more tests!!!
I don't want to wait until the 23rd of March to start treatment if I don't have to. And if they need to do more tests on me I want to know when, where and why. I thought that last week they did enough poking and prodding of me!
By the way Brooke came with me to this appointment and we had a good day together. She is being very supportive. I am very blessed to have her in my life.
Monday, February 27, 2012
Laughter is the Best Medicine Weeeeee
Now let me give everyone an explanation about the photo:
A friend of mine called me while I was in the hospital and told me that when ever I feel low to raise my hands up above my head and say WEEEEEEEEE, like the pig in the Gieco commercials. I told her I couldn't I didn't have the pinwheels. It took her three days to find them. But she did and by then I was home and she came over with them. In the meantime another friend made me pinwheels and provided the helmet. The helmet reads "Snooze" her nickname for me. When I got done laughing the night my girlfriend called me I told the nurses caring for me and they couldn't stop laughing either.
Laughter is one of the things I need to get through this battle. So please laugh with me. I plan to print this photo and take it up to the hospital and give it to the nurses so they can continue to laugh.
Laughter is the best medicine!!!
A friend of mine called me while I was in the hospital and told me that when ever I feel low to raise my hands up above my head and say WEEEEEEEEE, like the pig in the Gieco commercials. I told her I couldn't I didn't have the pinwheels. It took her three days to find them. But she did and by then I was home and she came over with them. In the meantime another friend made me pinwheels and provided the helmet. The helmet reads "Snooze" her nickname for me. When I got done laughing the night my girlfriend called me I told the nurses caring for me and they couldn't stop laughing either.
Laughter is one of the things I need to get through this battle. So please laugh with me. I plan to print this photo and take it up to the hospital and give it to the nurses so they can continue to laugh.
Laughter is the best medicine!!!
Waiting stinks
Waiting for test results is really rotten. I wish they could process those tests faster, but I want them done right.
I guess it is starting to sink in. Because this evening I am feeling very sad. Had a phone call from a couple of friends and it helped. Also I received messages on my facebook page letting me of people who care. That kind of thing always helps.
My friends are telling me that it is okay to be down for a little while. But being down and giving up the fight are two very different things. I have not given up the fight!!!
I guess it is starting to sink in. Because this evening I am feeling very sad. Had a phone call from a couple of friends and it helped. Also I received messages on my facebook page letting me of people who care. That kind of thing always helps.
My friends are telling me that it is okay to be down for a little while. But being down and giving up the fight are two very different things. I have not given up the fight!!!
Sunday, February 26, 2012
The Start of the Ride
This is so that my friends and family can follow my battle with Adrenal Cortical Cancer.
So how did this all start. Well first let me tell you that this form of cancer is usually found totally by accident. So how did we discover that I have it?
About a month ago I felt kidney pain on my left side. I learned 30 years ago that if I drank a lot of cranberry juice it would help me pass a kidney stone. After nearly a month of no success passing a stone I thought that maybe I had several stones. These stones are no where near smooth and so they could be stuck together. I thought at the hospital they would take an x-ray and then use some sort of a laser to blast them apart so that I could pass them.
So on Sunday February 19th I had enough of the pain and drove myself to the ER department at Baystate Medical Center, at 11:30 pm. The place was crowded. It must have been funny to watch me wait. I bounced from one seat to another trying to find a comfortable seat. I never had any luck. Finally at 4 am I was taken into the treatment area. I was taken to an area designed for two patients and I was the third person in the space.
Once I told the doctor about my medical history and the pain sure enough I was off to have a CT Scan. It didn't take long for the results to come back. My kidney was not were it belonged, instead there was a mass 7 cm in size. This was pushing down on my adrenal gland which was pushing down on my kidney, thus the pain. There were no stones in my kidney.
This caused the doctors to decided to have me admitted to the hospital for tests to see just what is going on. So by 7 am I was admitted and upstairs. Then a battery of tests where started. The next test another CT Scan this one checking the entire torso, and using a dye to create a contrast in the images.This was ordered by my Hospitalist, an intern in charge of my care. He of course was supervised by an attending Hospitalist
Brother Welliver and Brother Wilson came to the hospital and gave me a Blessing. I had called my Mom from the ER and asked her to have someone bring me my bathrobe, toothbrush, toothpaste and a hairbrush, etc. I did not ask for a nightgown or PJ's because I knew I would spend most of my time in a hospital johnny. I wanted the bathrobe to allow me some modesty.
I had parked it in the ambulance parking area. Before I went upstairs my plate was read over the loud speaker in the ER saying it needed to be moved. I got someone to get the security guard so I could tell them it was my car. A guard named Jackson came and he said I would have to let him move my car. I clearly could not do it. So he did and then brought the keys back to me. He told me where he had parked my car so I could get it when I left. I explained to him that I was being admitted and told him a member of my family would come and take the car home. He told me if they had any questions about were it was parked to ask for him and he would show them where it was. He was very nice.
Don & Mary picked up Brooke, Cyrena and RaeRae and came to see me. Don brought me my bathrobe and other items. Brooke was there to get my car. The next day I was suppose to take the car in for an oil change and to find out why the check engine light was on. Brooke took care of all of that for me.
After a review of the 2nd CT Scan I met a group of doctors, gynecologist, it seem that my ovaries and cervix didn't look right on the CT Scan. So they examined me and sent me down for an ultrasound, external and internal. That was a new thing for me. They wanted to see if I had cancer of the ovaries and/or the cervix. The results were I do not. Hurray for that!! The next day they did a pap smear just to be on the safe side. It takes two weeks to get the results of that test so I am still waiting on that.
So next comes an Endocrine Surgeon. He examines me and along with my side and abdomen he checks my neck. Oops, there are at least 2 lymph nodes that are swollen on the left side of my neck. Not a good sign.This doctor told me that he believes that I have Adrenal Cancer!!!
By now it is Wednesday, Frank comes in with Cyrena and RaeRae, Jenny is at Young Women's. RaeRae at just nine years old surprises me with a question. She asked if I did anything to cause this cancer. I asked her if she meant the way cigarets cause lung cancer and she said yes. I told her that I didn't think so.
I had trouble sleeping, gee I wonder why? I made a list of questions that I had. I added RaeRae's question to mine. The next morning I had 3 endocrinologist and the attending Hospitalist all in to see me at once. These 3 endocrinologist do not include the surgeon that saw me the night before, in this group is a resident, a fellow, and the attending. All three of these doctors examine me.
Seeing has I had the attention of 4 doctors I asked my questions then explained that I had one last question from my 9 yr old granddaughter. I asked her question the attending endocrinologist answered the question NO! But it could have environmental causes'
The swollen lymph nodes caused me to be sent down for yet another CT Scan. This time on the lymph nodes and while there they also did two biopsies, a core biopsy and a cell biopsy. They are going to do cross sections on the cells and create about 100 slides that will each be died differently to determine just what kind of cells they are. It is crazy what modern science/medicine.
Speaking of modern science my older brother now lives in Manilla, Philippines, he called me via Skype and we talked for about 1/2 hour at a cost of only 79 cents. That is really cool. We had a great visit.
I have a dear friend in Los Vegas who called me every night while I was in the hospital. That really helped to keep my spirits up.
Along with the tests I have mentioned they have drawn a lot of blood and tested my urine. My kidney functions are just fine.
Leave it to me to get a rare form of cancer. Because of that the Nephrologists, doctors who study the kidney's are following my case. Three of them came to see me on Friday before I was discharged.
Just in case any of you don't know Baystate is a teaching hospital. I view having the interns, fellows, student nurses and CNA's around has a great thing. After all it is a built in second opinion. If it works they way I think it does the students suggest to their instructors what they think my plan of care should be and if they are wrong or incomplete their instructors helps them to correct or complete the picture so I get great care.
On Thursday evening Frank brought all three girls up, Jenny, Cyrena and RaeRae. Jenny asked a great question. She told me she knew that cancer patient get chemo therapy and that chemo causes them to go bald. So she asked me if I was willing to be bald if it meant that I could live! I told her YES!!!
Then I told her there are hats and wigs to cover the baldness. I also reminded her that two ladies at Church donate their hair every two years to Locks for Love. (One, Lucy, has strawberry blonde hair, and her mother,Rita, has salt and pepper hair like me) Jenny said it would be funny if I got Lucy's hair. I asked her if she really thought it would look good on me. After thinking about it she said I should get Rita's hair! We all laughed. I called Rita the next day and she and her daughter laughed with us.
ALL of those who cared for me for the 5 days I was there were great! Thank you one and all. I was visited by a total of 15 doctors, 11 of them in a 4 hour period on Friday afternoon.
My care is not going to be transferred over to the D'Amour Cancer Center, which is part of the Baystate Medical Center. Tuesday, I have to go in as an outpatient for a bone density test. I don't go back to see the Endocrine Surgeon for 10 to 14 days. That is how long it will be before all of the test results will be in.
So far I have been able to keep my spirits high and with the help of pain med's I am able to keep the pain manageable. But waiting for the results is going to be a tough test!
To those of you who wish there was something you could do to help me there is. You can pray for me, keep me laughing, send cards, or send balloons, and size or color. Or just post a note to let me know that I am in your thoughts.
I am not sure just how often I will update this blog it will depend on if there is anything new to tell and how I feel.
So how did this all start. Well first let me tell you that this form of cancer is usually found totally by accident. So how did we discover that I have it?
About a month ago I felt kidney pain on my left side. I learned 30 years ago that if I drank a lot of cranberry juice it would help me pass a kidney stone. After nearly a month of no success passing a stone I thought that maybe I had several stones. These stones are no where near smooth and so they could be stuck together. I thought at the hospital they would take an x-ray and then use some sort of a laser to blast them apart so that I could pass them.
So on Sunday February 19th I had enough of the pain and drove myself to the ER department at Baystate Medical Center, at 11:30 pm. The place was crowded. It must have been funny to watch me wait. I bounced from one seat to another trying to find a comfortable seat. I never had any luck. Finally at 4 am I was taken into the treatment area. I was taken to an area designed for two patients and I was the third person in the space.
Once I told the doctor about my medical history and the pain sure enough I was off to have a CT Scan. It didn't take long for the results to come back. My kidney was not were it belonged, instead there was a mass 7 cm in size. This was pushing down on my adrenal gland which was pushing down on my kidney, thus the pain. There were no stones in my kidney.
This caused the doctors to decided to have me admitted to the hospital for tests to see just what is going on. So by 7 am I was admitted and upstairs. Then a battery of tests where started. The next test another CT Scan this one checking the entire torso, and using a dye to create a contrast in the images.This was ordered by my Hospitalist, an intern in charge of my care. He of course was supervised by an attending Hospitalist
Brother Welliver and Brother Wilson came to the hospital and gave me a Blessing. I had called my Mom from the ER and asked her to have someone bring me my bathrobe, toothbrush, toothpaste and a hairbrush, etc. I did not ask for a nightgown or PJ's because I knew I would spend most of my time in a hospital johnny. I wanted the bathrobe to allow me some modesty.
I had parked it in the ambulance parking area. Before I went upstairs my plate was read over the loud speaker in the ER saying it needed to be moved. I got someone to get the security guard so I could tell them it was my car. A guard named Jackson came and he said I would have to let him move my car. I clearly could not do it. So he did and then brought the keys back to me. He told me where he had parked my car so I could get it when I left. I explained to him that I was being admitted and told him a member of my family would come and take the car home. He told me if they had any questions about were it was parked to ask for him and he would show them where it was. He was very nice.
Don & Mary picked up Brooke, Cyrena and RaeRae and came to see me. Don brought me my bathrobe and other items. Brooke was there to get my car. The next day I was suppose to take the car in for an oil change and to find out why the check engine light was on. Brooke took care of all of that for me.
After a review of the 2nd CT Scan I met a group of doctors, gynecologist, it seem that my ovaries and cervix didn't look right on the CT Scan. So they examined me and sent me down for an ultrasound, external and internal. That was a new thing for me. They wanted to see if I had cancer of the ovaries and/or the cervix. The results were I do not. Hurray for that!! The next day they did a pap smear just to be on the safe side. It takes two weeks to get the results of that test so I am still waiting on that.
So next comes an Endocrine Surgeon. He examines me and along with my side and abdomen he checks my neck. Oops, there are at least 2 lymph nodes that are swollen on the left side of my neck. Not a good sign.This doctor told me that he believes that I have Adrenal Cancer!!!
By now it is Wednesday, Frank comes in with Cyrena and RaeRae, Jenny is at Young Women's. RaeRae at just nine years old surprises me with a question. She asked if I did anything to cause this cancer. I asked her if she meant the way cigarets cause lung cancer and she said yes. I told her that I didn't think so.
I had trouble sleeping, gee I wonder why? I made a list of questions that I had. I added RaeRae's question to mine. The next morning I had 3 endocrinologist and the attending Hospitalist all in to see me at once. These 3 endocrinologist do not include the surgeon that saw me the night before, in this group is a resident, a fellow, and the attending. All three of these doctors examine me.
Seeing has I had the attention of 4 doctors I asked my questions then explained that I had one last question from my 9 yr old granddaughter. I asked her question the attending endocrinologist answered the question NO! But it could have environmental causes'
The swollen lymph nodes caused me to be sent down for yet another CT Scan. This time on the lymph nodes and while there they also did two biopsies, a core biopsy and a cell biopsy. They are going to do cross sections on the cells and create about 100 slides that will each be died differently to determine just what kind of cells they are. It is crazy what modern science/medicine.
Speaking of modern science my older brother now lives in Manilla, Philippines, he called me via Skype and we talked for about 1/2 hour at a cost of only 79 cents. That is really cool. We had a great visit.
I have a dear friend in Los Vegas who called me every night while I was in the hospital. That really helped to keep my spirits up.
Along with the tests I have mentioned they have drawn a lot of blood and tested my urine. My kidney functions are just fine.
Leave it to me to get a rare form of cancer. Because of that the Nephrologists, doctors who study the kidney's are following my case. Three of them came to see me on Friday before I was discharged.
Just in case any of you don't know Baystate is a teaching hospital. I view having the interns, fellows, student nurses and CNA's around has a great thing. After all it is a built in second opinion. If it works they way I think it does the students suggest to their instructors what they think my plan of care should be and if they are wrong or incomplete their instructors helps them to correct or complete the picture so I get great care.
On Thursday evening Frank brought all three girls up, Jenny, Cyrena and RaeRae. Jenny asked a great question. She told me she knew that cancer patient get chemo therapy and that chemo causes them to go bald. So she asked me if I was willing to be bald if it meant that I could live! I told her YES!!!
Then I told her there are hats and wigs to cover the baldness. I also reminded her that two ladies at Church donate their hair every two years to Locks for Love. (One, Lucy, has strawberry blonde hair, and her mother,Rita, has salt and pepper hair like me) Jenny said it would be funny if I got Lucy's hair. I asked her if she really thought it would look good on me. After thinking about it she said I should get Rita's hair! We all laughed. I called Rita the next day and she and her daughter laughed with us.
ALL of those who cared for me for the 5 days I was there were great! Thank you one and all. I was visited by a total of 15 doctors, 11 of them in a 4 hour period on Friday afternoon.
My care is not going to be transferred over to the D'Amour Cancer Center, which is part of the Baystate Medical Center. Tuesday, I have to go in as an outpatient for a bone density test. I don't go back to see the Endocrine Surgeon for 10 to 14 days. That is how long it will be before all of the test results will be in.
So far I have been able to keep my spirits high and with the help of pain med's I am able to keep the pain manageable. But waiting for the results is going to be a tough test!
To those of you who wish there was something you could do to help me there is. You can pray for me, keep me laughing, send cards, or send balloons, and size or color. Or just post a note to let me know that I am in your thoughts.
I am not sure just how often I will update this blog it will depend on if there is anything new to tell and how I feel.
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