Monday, July 30, 2007
My Groshong
Sometimes it is easy to forget that I have cancer because many days I feel perfectly fine. The only constant reminder of Leukemia is my Groshong catheter. On the same day my biopsy results came back and confirmed that I had Leukemia (only my 3rd day in the hospital), I had surgery to get a line placed in my chest. The catheter is centrally placed, meaning the tip of the tube ends up in the Superior Vena Cava, which is the largest vein leading directly to the heart. As you can see in the picture, the tube is on the left side of my chest. A portion of the tube is under my skin in the vein which you can't see. The tube on the outside is actually attached to my skin with stitches. The round piece is an anti-bacterial foam that is placed on top of the incision. There is also a clear bandage around the area so that it does not get infected. It is very important to keep this area clean because any bacteria/foreign matter inside the tube would go straight to my heart.
I receive all of my chemo, antibiotics, blood transfusions and electrolytes through this tube. Most veins can't take the stress of all of the medication and fluids, but because this vein is so large, there is enough blood flow past the catheter to dilute the drugs. The nurse also draws my blood from the catheter for daily blood tests. I do not feel any pain when my catheter is being used, but the incision area still stings when I get my bandage changed once a week.
I have a love-hate relationship with my Groshong. On one hand, I avoid getting pricked with needles everyday, but, on the other hand, I have a 12 inch long tube sticking out of my chest 24/7. It is hard to find clothes that conceal the tube and I'm always paranoid that it will get ripped out, clogged, or infected. (I have had many nightmares about this) Fortunately, my Groshong has been quite cooperative and has good blood return. I heard that sometimes if you accidentally bump the area, the tube can shift inside the vein which can restrict the flow in the tube. How scary! This is why I am constantly shielding my left side with my arm and I am very cautious when people get too close to me.
The nurses say that once my chemo treatment is over, I'll get the tube removed. I hear the tube slips out of the vein fairly easily. I can't wait to start bear hugging people again!!!
Story Maykin
Now this is the story all about how my life got flipped, turned upside down.....(Sorry this is a long entry but I'm recapping the last 7 months)
It all started when I was getting unusual headaches in December 2006. I could always hear my heart beating loudly in my ears. My headaches would get really intense if I did anything strenuous. I remember going rock climbing with some friends and I was so tired after my first climb. I was disappointed in myself for being weak (I'm normally like a monkey on the wall). However, after a couple of minutes I got my strength back and continued to climb. My nurse says the body can adjust to low oxygen levels over time. This explains why my headaches would come and go so that I never felt like they were a big deal. Looking back, I should have listened to my body better.
I actually had my annual physical with my general physician in January 2007 and I mentioned my headaches to her. She said that I seemed pretty healthy, but to contact her if my headaches worsened (this was still at the point where my headaches would come and go). During my physical she asked me what I wanted her to check and I said I wanted a routine annual check up. She asked me if I wanted blood tests done and I asked her what she would be testing. She said first of all I would not be able to get tested that day because people are not suppose to eat or drink for 12 hours before the blood test. She also said the test was mainly to see what my cholesterol levels were. Then she looked in my files and noticed that my cholesterol had been tested recently and my levels looked good. We decided that I would not schedule a blood test. Who knows if the doctor would have identified my Leukemia at the time but now I know better. Readers, be sure to get a complete blood count (CBC) test during your annual physicals!!!!
My symptoms gradually worsened and by the end of February I was having daily headaches and started having double vision. There were 2 events that made me realize something was very wrong.
1) On Saturday, 2/17/07 I went biking across the Golden Gate bridge. I have burned many calories at 24hr Fitness cycling classes so I thought this was going to be a breeze. WRONG...I have never felt so exhausted in my life. I spent most of the time pushing my bike instead of riding it. I assumed I was slightly anemic, so I bought some iron pills and scheduled another appointment with my physician for Tuesday, 2/27/07.
2) The 2nd event was on 2/24/07 when I went snowboarding in Tahoe. Even though I had a horrible time biking, I thought maybe it would be different snowboarding because you don't use that much energy. I've been snowboarding for 3 years and I think I'm a fairly decent boarder. On the very first run, I could barely carry my board to the ski lift. I was totally out of breath and I felt nauseous from my headache. My eyes welled up because I knew something was seriously wrong. After 3 runs on the bunny slope I sat out for the rest of the day...I was anxious to see my doctor.
On 2/27/07 I saw my doctor at 9am in the morning. She noticed that I looked a little pale and decided to do some lab work (blood draw and urine sample). I was suppose to work from home after my appointment, but I was too weak. I curled up in fetal position and laid in bed all day. At 5pm my doctor called and said that my blood counts were dangerously low. She had never seen anything like it and I needed to check myself into the emergency room asap. My mom raced home from work and took me to the hospital.
Here were my counts with the normal range in (_):
Hemoglobin: 5.2 (11.5-15)
Hematocrit: 15.0 (34-46)
Platelets: 16 (140-400)
White blood cells: 7.9 (3.5-12.5)
My hemoglobin and hematocrit levels showed that my body was not getting enough oxygen. This explained why I had been feeling so crappy. Doctors normally will give you a transfusion when your hemoglobin drops below 8.0, so 5.2 is extremely low. Also, my platelet count showed that I was at risk for bleeding to death. Platelets are what makes your blood clot. Basically, if I had accidentally cut myself while shaving or bruised myself while snowboarding that would have been very bad news.
I immediately got hooked up to an IV and they began giving me blood and platelet transfusions. They also did a CAT Scan of my head to figure out why I was having double vision, but thankfully it came out negative. The double vision went away soon after my blood transfusions (it was probably related to the lack of oxygen going to my brain). It's amazing what a little blood can do.
By 11pm on 2/27/07, the emergency doctor said I probably had Leukemia. The next day I met my Oncologist and he did a bone marrow biopsy (big needle in your hip bone to extract marrow for testing - NOT FUN).
On Friday, 3/2/07 the biopsy results came back and it was confirmed that I had Acute Myeloid Leukemia (AML) Subtype M2. Operation Kill Leuk began on 3/2 with my first bag of chemo. I stayed in the hospital for 30 days straight after that. My first few weeks in the hospital are a blur to me. All I remember is that there were a lot of tears, phone calls, visitors, cards, medicine and blood tests.
My first round of chemo called Induction Phase went really well and the chemo made my cancer go into remission. My doctor said it could not have gone any better. After Induction I am suppose to have 4 rounds of chemotherapy called Consolidation Phase to make sure we kill off any traces of the cancer. I have had 2 rounds of Consolidation and am scheduled to go into for my 3rd round soon.
There have been ups and downs, but thankfully more ups than downs. I feel great and I am looking forward to the end of my chemo treatment. Thank you to all of my family, friends, doctors, and nurses who have taken care of me and supported me during this difficult time. Everyone has been absolutely amazing. If there's one thing I've learned from this whole ordeal is that I am one lucky girl.
It all started when I was getting unusual headaches in December 2006. I could always hear my heart beating loudly in my ears. My headaches would get really intense if I did anything strenuous. I remember going rock climbing with some friends and I was so tired after my first climb. I was disappointed in myself for being weak (I'm normally like a monkey on the wall). However, after a couple of minutes I got my strength back and continued to climb. My nurse says the body can adjust to low oxygen levels over time. This explains why my headaches would come and go so that I never felt like they were a big deal. Looking back, I should have listened to my body better.
I actually had my annual physical with my general physician in January 2007 and I mentioned my headaches to her. She said that I seemed pretty healthy, but to contact her if my headaches worsened (this was still at the point where my headaches would come and go). During my physical she asked me what I wanted her to check and I said I wanted a routine annual check up. She asked me if I wanted blood tests done and I asked her what she would be testing. She said first of all I would not be able to get tested that day because people are not suppose to eat or drink for 12 hours before the blood test. She also said the test was mainly to see what my cholesterol levels were. Then she looked in my files and noticed that my cholesterol had been tested recently and my levels looked good. We decided that I would not schedule a blood test. Who knows if the doctor would have identified my Leukemia at the time but now I know better. Readers, be sure to get a complete blood count (CBC) test during your annual physicals!!!!
My symptoms gradually worsened and by the end of February I was having daily headaches and started having double vision. There were 2 events that made me realize something was very wrong.
1) On Saturday, 2/17/07 I went biking across the Golden Gate bridge. I have burned many calories at 24hr Fitness cycling classes so I thought this was going to be a breeze. WRONG...I have never felt so exhausted in my life. I spent most of the time pushing my bike instead of riding it. I assumed I was slightly anemic, so I bought some iron pills and scheduled another appointment with my physician for Tuesday, 2/27/07.
2) The 2nd event was on 2/24/07 when I went snowboarding in Tahoe. Even though I had a horrible time biking, I thought maybe it would be different snowboarding because you don't use that much energy. I've been snowboarding for 3 years and I think I'm a fairly decent boarder. On the very first run, I could barely carry my board to the ski lift. I was totally out of breath and I felt nauseous from my headache. My eyes welled up because I knew something was seriously wrong. After 3 runs on the bunny slope I sat out for the rest of the day...I was anxious to see my doctor.
On 2/27/07 I saw my doctor at 9am in the morning. She noticed that I looked a little pale and decided to do some lab work (blood draw and urine sample). I was suppose to work from home after my appointment, but I was too weak. I curled up in fetal position and laid in bed all day. At 5pm my doctor called and said that my blood counts were dangerously low. She had never seen anything like it and I needed to check myself into the emergency room asap. My mom raced home from work and took me to the hospital.
Here were my counts with the normal range in (_):
Hemoglobin: 5.2 (11.5-15)
Hematocrit: 15.0 (34-46)
Platelets: 16 (140-400)
White blood cells: 7.9 (3.5-12.5)
My hemoglobin and hematocrit levels showed that my body was not getting enough oxygen. This explained why I had been feeling so crappy. Doctors normally will give you a transfusion when your hemoglobin drops below 8.0, so 5.2 is extremely low. Also, my platelet count showed that I was at risk for bleeding to death. Platelets are what makes your blood clot. Basically, if I had accidentally cut myself while shaving or bruised myself while snowboarding that would have been very bad news.
I immediately got hooked up to an IV and they began giving me blood and platelet transfusions. They also did a CAT Scan of my head to figure out why I was having double vision, but thankfully it came out negative. The double vision went away soon after my blood transfusions (it was probably related to the lack of oxygen going to my brain). It's amazing what a little blood can do.
By 11pm on 2/27/07, the emergency doctor said I probably had Leukemia. The next day I met my Oncologist and he did a bone marrow biopsy (big needle in your hip bone to extract marrow for testing - NOT FUN).
On Friday, 3/2/07 the biopsy results came back and it was confirmed that I had Acute Myeloid Leukemia (AML) Subtype M2. Operation Kill Leuk began on 3/2 with my first bag of chemo. I stayed in the hospital for 30 days straight after that. My first few weeks in the hospital are a blur to me. All I remember is that there were a lot of tears, phone calls, visitors, cards, medicine and blood tests.
My first round of chemo called Induction Phase went really well and the chemo made my cancer go into remission. My doctor said it could not have gone any better. After Induction I am suppose to have 4 rounds of chemotherapy called Consolidation Phase to make sure we kill off any traces of the cancer. I have had 2 rounds of Consolidation and am scheduled to go into for my 3rd round soon.
There have been ups and downs, but thankfully more ups than downs. I feel great and I am looking forward to the end of my chemo treatment. Thank you to all of my family, friends, doctors, and nurses who have taken care of me and supported me during this difficult time. Everyone has been absolutely amazing. If there's one thing I've learned from this whole ordeal is that I am one lucky girl.
Thursday, July 12, 2007
Maykin a Difference
After months of delay, I have finally started a website to talk about my experience with Acute Myeloid Leukemia (AML). Initially, I didn't want to have an entire website dedicated to me...it just felt so self-centered and I'm usually against online diaries...Aren't diaries/journals suppose to be something private and not for the whole world to see?
However, over the last couple of months I have spent hundreds of hours reading other Leukemia patients' websites to learn about their experiences and treatments. I have learned so much from these people and I am inspired by their determination, courage, bravery and honesty. Even though they are absolute strangers to me, I feel a strong bond and connection to them. I feel like I know some of these people better than I know my own relatives. (I sound like a stalker right now huh?) I realize that my battle with cancer is not unique and I want to share my experience with other Cancer Fighters so they can see that they are not alone either.
Also, I hope that reading my story will motivate people to get registered on the National Bone Marrow Registry. Leukemia does not discriminate. It can strike anyone at anytime. Leukemia patients are mothers, daughters, fathers, brothers, babies, grandparents, neighbors, rich, poor, Asians, Caucasians, Hispanics, etc....the list goes on an on. Please help us by becoming a committed bone marrow donor today.
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