Although I can't say I wasn't warned, I can't say that I was expecting it either....bye bye hair.
Sunday, May 6th, I got my hair cut in short chin length bob, with a stacked back. It looked really cute. I wanted to get something shorter, not only to be easier to manage, but also because I knew there was the possibility that my hair would be falling out soon. I had always heard that hair loss was a little easier with shorter hair...it is....I'm positive.
My hair started coming out Thursday, May 10th. There was hair constantly coming out...strands coming out every time I ran my fingers through it. The shower was even worse....handfuls of hair came out. The bathroom trashcan looked like it had a dead hamster in it after every shower. The hair loss became more and more noticeable. There is hair all over my house...on my pillow, all over my bathroom, on the recliner, all over the back of my shirt, in my food...very annoying. I can now see why people just go ahead and shave their heads. By Mother's Day, you could clearly see my scalp. I wore a baseball cap on our trip to the Secret Garden. I would definately feel uncomfortable being seen in public without something covering my head now. I can pretty much forget about it until I look in the mirror....I told my Mom that I look like Smeagol from the Lord of the Rings. Now that I have a few options for head coverings, and more on the way since we ordered some today, I am going to have my husband just shave my head. I know it will be hard to see the last of my hair gone, but the hair all over is really getting on my nerves.
I have two books that I got for the girls that talk about mom's losing their hair. We have read them and talked to my oldest about it. I think she still has questions and she seems more comfortable asking them when we read one of the books. I know that it will be strange for all of us, but it is just hair....it will grow back. I know I will be telling myself this quite a bit over the coming weeks or months. Hopefully it is a good sign....that my cancer will finally be killed...for good this time!!!
Thursday, May 17, 2012
Ice Effects
Our computer hasn't been working so I'm a little behind...let me try to catch up.
Monday, May 7th, I went to the lab for blood tests, both a CBC and INR test at about noon. (INR is to test how fast my blood is clotting.) My doctor from the the Coumadin Clinic (Blood thinner medicine) called first. She let me know that my INR level was low so she wanted me to start back on the Lovenox shots to lower my risk of clotting. I still had some shots at home, so I had my husband give me a shot before he left for work. Then soon after, my oncologist called to let me know that my platelets were low and I needed to go to the ER for a platelet transfusion. I had to yell down for my husband to wait so he could drop me off at the ER on his way to work. We left at about 3:30pm. I didn't think it would take long; thought I would be home for dinner, so I rushed out the door and told the girls I would see them soon.
At the ER I was actually taken back fairly quickly, but once back there I waited quite a while. There was a tech and even a PA that stopped in to see how I was doing and let me know what was going on. However, I was waiting for a nurse to come in and draw blood etc...get the ball rolling. My blood wasn't drawn until after 6pm and they didn't start giving me the platelets until around 8pm. Then at about 10pm they were getting ready to release me and the PA came in and said they were going to admit me instead. He said that there had been a big drop in some of my counts between the noon and 6pm tests. He said that he was afraid there might be some internal bleeding, maybe in the GI tract. He also told me he had only seen numbers drop like that in someone that had blown up. (Yes he actually said that.) So...I found out I was going to have to stay, when I had been so excited to get to leave.
Once I was admitted, I began prepping for a scope of my GI tract. The prep included drinking a gallon of Go Lightly, (The name shows that someone had a sense of humor.) and many trips to the bathroom all night long. The next morning, after meeting the entire staff of the hospital (almost anyway), I also received a red blood transfusion and was told I did the GI prep for nothing, they didn't want to scope after all. I could tell that the doctors were not happy with my blood counts but I kept telling everyone I saw that I felt fine and I was ready to go home. Finally, they decided to release me and I arrived home about 7pm; 24 hours later than expected.
Monday, May 7th, I went to the lab for blood tests, both a CBC and INR test at about noon. (INR is to test how fast my blood is clotting.) My doctor from the the Coumadin Clinic (Blood thinner medicine) called first. She let me know that my INR level was low so she wanted me to start back on the Lovenox shots to lower my risk of clotting. I still had some shots at home, so I had my husband give me a shot before he left for work. Then soon after, my oncologist called to let me know that my platelets were low and I needed to go to the ER for a platelet transfusion. I had to yell down for my husband to wait so he could drop me off at the ER on his way to work. We left at about 3:30pm. I didn't think it would take long; thought I would be home for dinner, so I rushed out the door and told the girls I would see them soon.
At the ER I was actually taken back fairly quickly, but once back there I waited quite a while. There was a tech and even a PA that stopped in to see how I was doing and let me know what was going on. However, I was waiting for a nurse to come in and draw blood etc...get the ball rolling. My blood wasn't drawn until after 6pm and they didn't start giving me the platelets until around 8pm. Then at about 10pm they were getting ready to release me and the PA came in and said they were going to admit me instead. He said that there had been a big drop in some of my counts between the noon and 6pm tests. He said that he was afraid there might be some internal bleeding, maybe in the GI tract. He also told me he had only seen numbers drop like that in someone that had blown up. (Yes he actually said that.) So...I found out I was going to have to stay, when I had been so excited to get to leave.
Once I was admitted, I began prepping for a scope of my GI tract. The prep included drinking a gallon of Go Lightly, (The name shows that someone had a sense of humor.) and many trips to the bathroom all night long. The next morning, after meeting the entire staff of the hospital (almost anyway), I also received a red blood transfusion and was told I did the GI prep for nothing, they didn't want to scope after all. I could tell that the doctors were not happy with my blood counts but I kept telling everyone I saw that I felt fine and I was ready to go home. Finally, they decided to release me and I arrived home about 7pm; 24 hours later than expected.
Tuesday, May 1, 2012
Transplant: Postponed Until Further Notice
My husband and I flew into LA the evening of April 22 and got to our hotel to settle in for the PET scan and stem cell harvest the next day.
The PET scan went smoothly...then I was off to be harvested. I got to the hemapheresis unit at about 12:30 and by 1pm, they had me hooked up. They put in two IVs, one took the blood out and the other brought the blood (minus my stem cells) back in. I just had to sit there, relatively still for about 3 hours while my blood went through this machine that separated out my stem cells. When it was over they took out the IVs and taped on some ice packs. They had me verify my name etc. on a bag of what looked like watery blood, which I later found out was my stem cells. We were told they probably wouldn't have the count, to know if I had to harvest again, until the next day.
The next morning my transplant coordinator called to let us know that harvesting was done. They collected more than enough in one day! They needed 2 million and I gave them over 5 million. I was glad I didn't have to sit there again...mainly just because it was boring and I got tired of not getting to move. The coordinator let me know that a doctor, not my normal UCLA doc because she was on vacation, wanted to meet with me to go over the PET scan results. The meeting was going to happen at 12:30, and we didn't have our flight out until the next day so we decided we would go to the beach after speaking with the doctor. Then...
At the doctor's office the doctor bluntly explained that the scan showed new growth...Ugh! He said he felt bad meeting me that way but...he wanted me to get a round of ICE chemo right away. He asked why my doctors had been giving me the Gemzar/Navelbine chemo and called it an "old lady" chemo. Well,....I don't know why. I just remember hearing something about them preferring to use that over another round with ABVD(my first chemo combination). I think mainly because ABVD can be hard on your heart. So...I got checked into the room and they put me on IV hydration. I assumed they would try to get started early the next day, but I didn't get my PICC line until almost noon and didn't get my first chemo, Etoposide, until 8pm. I don't really like waiting around. Then the next day they tell me that I will be checking out the following day. To which we respond, "How? I've only had 1 day of chemo and I still need two more." That days chemo wasn't scheduled to begin until 8pm. So they figured things out and started my chemo early. I received 1 hour infusions of Etoposide and Carboplatin and then got started on my 24 hour infusion of Ifosfamide. The Ifosfamide one kind of scared me because it came in a glass bottle instead of the regular IV bags and it was the one with the side effects to watch for...but I didn't have any bad side effects. My infusion of Ifosfamide was set to be finished at about 5pm so my nurse ran my last infusion of Etoposide along with it, so they would finish close to the same time. Then I was able to be discharged and go back to the hotel with my husband. My main instruction was to drink a lot of water. I did drink almost a gallon of water in a 24 hour period. Our flight home wasn't until the following evening so...
The next day, we went to the beach. We rode a bus down to the Santa Monica Pier, had lunch, and a nice little walk on the beach. The water was freezing! It was a lot of fun...and of course we had to get presents for the girls! Then we were off on a bus back to the hotel to pick up our luggage and then having to rush to make it to the shuttle back to the airport. We made it...and we were so happy to be home! We missed the girls so much!
I met with my new LV doctor today. Although he isn't sure...he thinks that I will be doing another treatment with ICE before I get another PET scan. Then, hopefully the transplant will be back on track. Die Cancer Die!!!
The PET scan went smoothly...then I was off to be harvested. I got to the hemapheresis unit at about 12:30 and by 1pm, they had me hooked up. They put in two IVs, one took the blood out and the other brought the blood (minus my stem cells) back in. I just had to sit there, relatively still for about 3 hours while my blood went through this machine that separated out my stem cells. When it was over they took out the IVs and taped on some ice packs. They had me verify my name etc. on a bag of what looked like watery blood, which I later found out was my stem cells. We were told they probably wouldn't have the count, to know if I had to harvest again, until the next day.
The next morning my transplant coordinator called to let us know that harvesting was done. They collected more than enough in one day! They needed 2 million and I gave them over 5 million. I was glad I didn't have to sit there again...mainly just because it was boring and I got tired of not getting to move. The coordinator let me know that a doctor, not my normal UCLA doc because she was on vacation, wanted to meet with me to go over the PET scan results. The meeting was going to happen at 12:30, and we didn't have our flight out until the next day so we decided we would go to the beach after speaking with the doctor. Then...
At the doctor's office the doctor bluntly explained that the scan showed new growth...Ugh! He said he felt bad meeting me that way but...he wanted me to get a round of ICE chemo right away. He asked why my doctors had been giving me the Gemzar/Navelbine chemo and called it an "old lady" chemo. Well,....I don't know why. I just remember hearing something about them preferring to use that over another round with ABVD(my first chemo combination). I think mainly because ABVD can be hard on your heart. So...I got checked into the room and they put me on IV hydration. I assumed they would try to get started early the next day, but I didn't get my PICC line until almost noon and didn't get my first chemo, Etoposide, until 8pm. I don't really like waiting around. Then the next day they tell me that I will be checking out the following day. To which we respond, "How? I've only had 1 day of chemo and I still need two more." That days chemo wasn't scheduled to begin until 8pm. So they figured things out and started my chemo early. I received 1 hour infusions of Etoposide and Carboplatin and then got started on my 24 hour infusion of Ifosfamide. The Ifosfamide one kind of scared me because it came in a glass bottle instead of the regular IV bags and it was the one with the side effects to watch for...but I didn't have any bad side effects. My infusion of Ifosfamide was set to be finished at about 5pm so my nurse ran my last infusion of Etoposide along with it, so they would finish close to the same time. Then I was able to be discharged and go back to the hotel with my husband. My main instruction was to drink a lot of water. I did drink almost a gallon of water in a 24 hour period. Our flight home wasn't until the following evening so...
The next day, we went to the beach. We rode a bus down to the Santa Monica Pier, had lunch, and a nice little walk on the beach. The water was freezing! It was a lot of fun...and of course we had to get presents for the girls! Then we were off on a bus back to the hotel to pick up our luggage and then having to rush to make it to the shuttle back to the airport. We made it...and we were so happy to be home! We missed the girls so much!
I met with my new LV doctor today. Although he isn't sure...he thinks that I will be doing another treatment with ICE before I get another PET scan. Then, hopefully the transplant will be back on track. Die Cancer Die!!!
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