Monday, January 28, 2013
The Purple Tattoo: Counting Backward
The Purple Tattoo: Counting Backward: After that doctor's appointment when he informed me of my staging I was given the choice to start treatment that day or to wait until I had ...
Counting Backward
After that doctor's appointment when he informed me of my staging I was given the choice to start treatment that day or to wait until I had a port installed. I had decided already that I would start that day. I had prepared myself for it and was looking forward to knocking it down from 12 treatments to only 11. I told the doctor that if I start right now I get to start counting backwards and get one step closer to it all being over and done with.
I had to wait for a chair in the chemo room. Mark was still with me. I was a nervous to say the least. Finally a chair opened up and they took me in. Once I got settled we decided that Mark would go home until I was done. He couldn't stay back there with me, plus he had to go pick up Lucas after school. (Oh, did I mention that Mark got laid off from his job of 9 years the day before I started my treatment? When it rains it pours. Don't worry though. He has already got 2 offers so he didn't get very much time off!! LOL) I sat down and comfortable. It's very quiet in there. It's just a huge room with 20-30 recliners in it. They sat me down in my recliner and my nurse started to very patiently go over everything with me. I was nervous and she could tell. She started asking me about my diagnosis and how I had discovered my lump, etc trying to putme at ease.
The patient next to me suddenly chimed in to our conversation. She has exactly the same kind of cancer as I do, was on treatment #5, had a lump in her armpit, etc. I made a friend!! I'll call her "K." K was a blessing that day. She helped me to relax and talked to me all day. She really kept my mind off of the reality of what was going on and made it a much easier day for me to get through. We talked about the side effects and what to expect in the upcoming days. We discussed hair loss and how to cope with that. I am SO GLAD I met her. We exchanged numbers and have been texting this week. We will both be back for chemo Wednesday and I am hoping we get to sit together again! Having someone to talk to will certainly help the time pass a little more quickly.
My nurse brought over this big basket which had all of my stuff in it. She handed me two Tylenol to take to prevent fever. She went over a list of everything we would do. She examined my arm and decided that we would use the veins in my hand for an IV. The first medicine I was given was an anti-anxiety medicine. (Thank God) Then she gave me fluids, anti-nausea and then the ABVD which are the actual chemo drugs. The chemo drugs are very toxic so I had to be monitored very closely. One of them, they even gave me only a teeny tiny bit of and then made me sit for an hour before they would continue...to make sure I did not have a reaction. While giving me one of the medicines, the red one, it started to burn really bad and my vein started to flare. We had to stop and move my IV to my arm.
Everyone is very nice and absolutely amazing. One of the nurses is a woman just a little younger than me I'm guessing. She is a 4 year survivor of breast cancer. She had lots of advice to offer and was very comforting. They are very busy...someone's IV is ALWAYS beeping and the place was PACKED. (You must also remember that it is "SEASON" in SWFL. This means there are extra people on the road and at the Cancer Center as well!)
After having been at FCS for 8 hours I was finally able to go home just a little after 5. Mark and Lucas came to pick me up. I was tired from stress, but I felt good. I had been given a huge packet of information about what to expect in the upcoming days. We went home, had dinner and carried out our day as we would any normal day!
It was a very stressful day. Reality of what I have to face set in...11 more treatments...6 months... It's going to be a long road but I am still convinced that by this time next year it will all be in my review mirror as just a part of history.
I had to wait for a chair in the chemo room. Mark was still with me. I was a nervous to say the least. Finally a chair opened up and they took me in. Once I got settled we decided that Mark would go home until I was done. He couldn't stay back there with me, plus he had to go pick up Lucas after school. (Oh, did I mention that Mark got laid off from his job of 9 years the day before I started my treatment? When it rains it pours. Don't worry though. He has already got 2 offers so he didn't get very much time off!! LOL) I sat down and comfortable. It's very quiet in there. It's just a huge room with 20-30 recliners in it. They sat me down in my recliner and my nurse started to very patiently go over everything with me. I was nervous and she could tell. She started asking me about my diagnosis and how I had discovered my lump, etc trying to putme at ease.
The patient next to me suddenly chimed in to our conversation. She has exactly the same kind of cancer as I do, was on treatment #5, had a lump in her armpit, etc. I made a friend!! I'll call her "K." K was a blessing that day. She helped me to relax and talked to me all day. She really kept my mind off of the reality of what was going on and made it a much easier day for me to get through. We talked about the side effects and what to expect in the upcoming days. We discussed hair loss and how to cope with that. I am SO GLAD I met her. We exchanged numbers and have been texting this week. We will both be back for chemo Wednesday and I am hoping we get to sit together again! Having someone to talk to will certainly help the time pass a little more quickly.
My nurse brought over this big basket which had all of my stuff in it. She handed me two Tylenol to take to prevent fever. She went over a list of everything we would do. She examined my arm and decided that we would use the veins in my hand for an IV. The first medicine I was given was an anti-anxiety medicine. (Thank God) Then she gave me fluids, anti-nausea and then the ABVD which are the actual chemo drugs. The chemo drugs are very toxic so I had to be monitored very closely. One of them, they even gave me only a teeny tiny bit of and then made me sit for an hour before they would continue...to make sure I did not have a reaction. While giving me one of the medicines, the red one, it started to burn really bad and my vein started to flare. We had to stop and move my IV to my arm.
Everyone is very nice and absolutely amazing. One of the nurses is a woman just a little younger than me I'm guessing. She is a 4 year survivor of breast cancer. She had lots of advice to offer and was very comforting. They are very busy...someone's IV is ALWAYS beeping and the place was PACKED. (You must also remember that it is "SEASON" in SWFL. This means there are extra people on the road and at the Cancer Center as well!)
After having been at FCS for 8 hours I was finally able to go home just a little after 5. Mark and Lucas came to pick me up. I was tired from stress, but I felt good. I had been given a huge packet of information about what to expect in the upcoming days. We went home, had dinner and carried out our day as we would any normal day!
It was a very stressful day. Reality of what I have to face set in...11 more treatments...6 months... It's going to be a long road but I am still convinced that by this time next year it will all be in my review mirror as just a part of history.
Thursday, January 24, 2013
The Purple Tattoo: Out of the Gates
The Purple Tattoo: Out of the Gates: The first thing I learned is that cancer takes up a lot of your time. Since the diagnosis my calendar has been FULL!! Once they tell you t...
Out of the Gates
The first thing I learned is that cancer takes up a lot of your time. Since the diagnosis my calendar has been FULL!! Once they tell you that you have cancer they move full speed ahead!
Mark went with me to my first appointment at Florida Cancer Specialists. I walked in the place and immediately hated it..it was full of old sick people and it smelled like sick people. I was told I would feel this way by a friend who has won her battle against Hodgkin's, she nailed it on the head!! I looked around the waiting room and wondered what I was doing here with these sick people. I don't feel sick, I don't look sick...I'm young. It was pretty upsetting. Before you see a doctor you must speak to a "financial counselor" about your insurance and how you are going to pay for all your treatment. They had my insurance wrong the first time I was there and they have yet to sort it out. I go in every time prepared with how much of my deductible I have met to date, etc. I learned quickly that you have to keep very close track. If I didn't keep close track of my coverage, etc., they would be making me pay a lot more than I should be out of pocket. I feel sorry for some of the elderly patients there who often seem confused by their coverage...it's hard to sort it all out.
I met with my oncologist on Monday, January 7th for the first time. He discussed my diagnosis, talked about chemo, answered our questions and set up a TON of tests and decided I would start chemotherapy the next week. We knew I would need chemo regardless...the tests would just tell us how much. Best case scenario was that I would have four treatments followed by radiation.
That week I had a bone marrow biopsy, pulmonary function tests, a MUGA scan of my heart, PET scan and CT scans. Everyday I had some kind of an appointment. Everyday someone stuck me with a needle, gave me an IV or made me drink something yucky.
On Wednesday, January 16th I met with the doctor and we went over my results. Bone marrow was negative for cancer, he said my heart pumps stronger than Lance Armstrong's, my lungs function above average, but there were multiple lymph nodes that lit up on the PET scan. All of these nodes are above my diaphragm so this put me in Stage 2. This means I will need 12 treatments - a full course of chemotherapy that will be done over the next 6 months. The prognosis is the same...when I am done I will be cancer free.
On this same day I went ahead with my first treatment.
Mark went with me to my first appointment at Florida Cancer Specialists. I walked in the place and immediately hated it..it was full of old sick people and it smelled like sick people. I was told I would feel this way by a friend who has won her battle against Hodgkin's, she nailed it on the head!! I looked around the waiting room and wondered what I was doing here with these sick people. I don't feel sick, I don't look sick...I'm young. It was pretty upsetting. Before you see a doctor you must speak to a "financial counselor" about your insurance and how you are going to pay for all your treatment. They had my insurance wrong the first time I was there and they have yet to sort it out. I go in every time prepared with how much of my deductible I have met to date, etc. I learned quickly that you have to keep very close track. If I didn't keep close track of my coverage, etc., they would be making me pay a lot more than I should be out of pocket. I feel sorry for some of the elderly patients there who often seem confused by their coverage...it's hard to sort it all out.
I met with my oncologist on Monday, January 7th for the first time. He discussed my diagnosis, talked about chemo, answered our questions and set up a TON of tests and decided I would start chemotherapy the next week. We knew I would need chemo regardless...the tests would just tell us how much. Best case scenario was that I would have four treatments followed by radiation.
That week I had a bone marrow biopsy, pulmonary function tests, a MUGA scan of my heart, PET scan and CT scans. Everyday I had some kind of an appointment. Everyday someone stuck me with a needle, gave me an IV or made me drink something yucky.
On Wednesday, January 16th I met with the doctor and we went over my results. Bone marrow was negative for cancer, he said my heart pumps stronger than Lance Armstrong's, my lungs function above average, but there were multiple lymph nodes that lit up on the PET scan. All of these nodes are above my diaphragm so this put me in Stage 2. This means I will need 12 treatments - a full course of chemotherapy that will be done over the next 6 months. The prognosis is the same...when I am done I will be cancer free.
On this same day I went ahead with my first treatment.
Saturday, January 19, 2013
How I Found IT
One morning mid-December I went to shave my underarms and when I raised my arm I noticed I had a huge lump in the middle of my left armpit. I freaked out, ran to the livingroom, showed Mark and immediately called the doctor. I called the surgeon who had done a biopsy of the breast on the same side in April of 2012. They made me an appointment...which got all messed-up...which led me to see my gynecologist who said she thought it was just a lymph node and that I was probably coming down with something. Both Mark and Lucas had been sick so this made sense. She told me to keep the appointment with the surgeon the following week.
The surgeon acted very different with this visit than he had with the breast stuff earlier in the year. He wanted me to have imaging done the next day...so off I went for a mammo and ultrasound the next morning. Had those tests done and they took me in to see the radiologist who was a very cold person who sits in a dark room surrounded by computer screens. He just sat there and said, "there are two solid masses in the axillary areas. You could have leukemia, lymphoma or some kind of breast cancer." I left the building in tears. I called Mark and told him I couldn't go home and face Lucas right away so I went to my mom's for a little TLC. A biobsy was scheduled for December 27.
On December 28 the surgeon called me and informed me that the preliminary tests showed some kind of malignant lymphoma, but we would not know details until the following week. On January 4, 2013 I went in to have the stitches removed from the biopsy and get my results. Dr. Lewis confirmed that it was indeed Hodgkin's Lymphoma and referred me to see Dr. Dunbar, an oncologist. We scheduled an appointment for January 7.
Mark and I left that appointment in shock even though we already knew I had cancer. Hearing it confirmed in person was different than hearing it over the phone as "preliminary results." It was a long weekend knowing that on Monday I had to see an oncologist, but it still all felt like it was happening to someone else. It hadn't really sunk in yet.
**An interesting note** I had been experience crazy, non-stop itching for almost two years. I had repeatedly scratched myself until I bruised. I had been to see four different doctors. I had been told it was anxiety, nerves, scabies and written prescriptions as far back as June, 2011. Turns out the crazy itching is a symptom of Hodgkin's.
The surgeon acted very different with this visit than he had with the breast stuff earlier in the year. He wanted me to have imaging done the next day...so off I went for a mammo and ultrasound the next morning. Had those tests done and they took me in to see the radiologist who was a very cold person who sits in a dark room surrounded by computer screens. He just sat there and said, "there are two solid masses in the axillary areas. You could have leukemia, lymphoma or some kind of breast cancer." I left the building in tears. I called Mark and told him I couldn't go home and face Lucas right away so I went to my mom's for a little TLC. A biobsy was scheduled for December 27.
On December 28 the surgeon called me and informed me that the preliminary tests showed some kind of malignant lymphoma, but we would not know details until the following week. On January 4, 2013 I went in to have the stitches removed from the biopsy and get my results. Dr. Lewis confirmed that it was indeed Hodgkin's Lymphoma and referred me to see Dr. Dunbar, an oncologist. We scheduled an appointment for January 7.
Mark and I left that appointment in shock even though we already knew I had cancer. Hearing it confirmed in person was different than hearing it over the phone as "preliminary results." It was a long weekend knowing that on Monday I had to see an oncologist, but it still all felt like it was happening to someone else. It hadn't really sunk in yet.
**An interesting note** I had been experience crazy, non-stop itching for almost two years. I had repeatedly scratched myself until I bruised. I had been to see four different doctors. I had been told it was anxiety, nerves, scabies and written prescriptions as far back as June, 2011. Turns out the crazy itching is a symptom of Hodgkin's.
Thursday, January 17, 2013
Why The Purple Tattoo?
There are so many people who have reached out to me to ask how I am and what is going on there is just not enough time to inform everyone individually. This will be the place I post all that information. Please continue to check in with me, call, text, email...it all helps! It feels good to be connected to so many caring people. I need and appreciate all your love and support throughout this challenge!
I will write another entry tomorrow to explain this from the beginning when I found the lump under my arm in mid December through yesterday...my first of 12 chemo treatments.
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