Today I started my ipi (Yervoy) immunotherapy treatment. I will take 3 more treatments every 3 weeks. The treatment itself lasted @90 minutes.
I do have to say that I was a little worried about the soreness of the mediport still although it definitely is getting better every day. I actually slept on the couch last night and was able to get up by myself - the first day home, I slept on the couch and had to call Kurt out to come and help pull my other arm to get me out of the couch. I learned to sleep on the recliner the rest of the time. They first took blood out of the port for my lab work and then they left the needle in so they could just attach the IV to it later.
We met with a PA from the oncology office before I started treatment. While we (Kurt and I) both are aware that there is not a cure for stage IV metastic melanoma, they hope to prolong your life. I didn't really want to hear about all of that right before treatment but that is the information that he went through. (Of course, this is where I would say that the reason I don't want to hear about it is because I am looking at the optimistic side of things and hoping/praying for a miracle!)
Of course, the PA then went through the same potential side effects that my doctor had already talked about - diarrhea, problems with thyroid or pituatary gland, etc. They gave me scripts for medications in case I have any problems with nausea, diarrhea, etc.
We then went into the treatment room. The staff were very nice! I didn't feel anything... It took alittle over 90 minutes and we left and came home after stopping at the pharmacy.
I haven't felt bad at all so far today. I hope that this continues... and, of course, that this is the miracle drug that everyone talks about! :)
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Monday, June 27, 2011
Friday, June 24, 2011
Radiation "Graduation" and Soreness - 06/24/2011
Today was my last day of radiation on my hip. They even gave me a diploma! :)
While it is definitely starting to feel a little bit better, my left upper chest is still quite sore from the incision of the Mediport! Definitely feeling better than yesterday though - hopefully tomorrow will be even better!
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| My Radiation Therapy Treatment Diploma! |
While it is definitely starting to feel a little bit better, my left upper chest is still quite sore from the incision of the Mediport! Definitely feeling better than yesterday though - hopefully tomorrow will be even better!
Wednesday, June 22, 2011
Radiation and a Mediport - 6/22/2011
Yesterday I woke up with a low-grade fever. Before my first radiation appointment for my hip, we called to make sure that I could still come with a temp of 99.3 degrees... It was okay for me to go! With radiation, I go in, they move me around a table so I line up based on the mapping they did last week. Once that is done, they radiate that area and then I am done! It's very quick and you don't feel anything. I've had another radiation appointment today and only two more (one on Thursday and one on Friday).
Today I also got my Mediport put in. I didn't realize that they actually put it under your skin and it goes in a vein by your shoulder/neck. I'm glad it is in as they had to try twice to find a vein for my IV. My veins are getting less cooperative with all of my surgeries, procedures, etc.... And they already weren't very cooperative to begin with!
The procedure was pretty painless until I woke up from the sedation when he was finishing up. Most of it was painfree (like when he was putting in stitches) but I did feel some things before that. I'm alittle sore so I'm sure it'll be more sore tomorrow... just laying low today!
Also found out that I cannot submerge my body in water (besides the shower after it heals) so no swimming for me this summer :(
The rest of this week will be a radiation appointment each day and then Monday will be my treatment and meet with the neurosurgeon and then maybe a rest from the hospital or appointments. It's sad when people like the transporters and nurses know who you are.
Today I also got my Mediport put in. I didn't realize that they actually put it under your skin and it goes in a vein by your shoulder/neck. I'm glad it is in as they had to try twice to find a vein for my IV. My veins are getting less cooperative with all of my surgeries, procedures, etc.... And they already weren't very cooperative to begin with!
The procedure was pretty painless until I woke up from the sedation when he was finishing up. Most of it was painfree (like when he was putting in stitches) but I did feel some things before that. I'm alittle sore so I'm sure it'll be more sore tomorrow... just laying low today!
Also found out that I cannot submerge my body in water (besides the shower after it heals) so no swimming for me this summer :(
The rest of this week will be a radiation appointment each day and then Monday will be my treatment and meet with the neurosurgeon and then maybe a rest from the hospital or appointments. It's sad when people like the transporters and nurses know who you are.
Tuesday, June 21, 2011
Halo and Brain Radiation Done On 6/20/2011 - 6/21/2011
On Monday, June 20th, Kurt and I went in to the hospital for 5:30 a.m. Approximately 6:15, I had to go down to the holding area of the OR to get another IV and then they brought me in to another area to get the halo put on. They gave me some sedative but they couldn't give me enough to put me out as I was in a wheelchair. I don't remember much - but I did feel them screwing in the four screws for the halo. (And, as you will see from the picture below, I do remember them putting lots of iodine on my head... can't wait for 24 hours later so I can take a shower and wash my hair!)
From there, I went into a CAT scan with my neurosurgeon (who put the halo on) and then they took me upstairs to the 8th floor to sit around for the day while they mapped the radiation area. I got up to the room at about 8:15 - I was waiting for Kurt and finally I called him about 20 minutes later. He didn't expect me to call him! :) It wasn't the easiest to sit around as you had the halo on but it wasn't the worst either! Kurt figured out where to put my pillows to make it more comfortable for me to sit on the bed. The only problem for me was that I didn't have a lot that I could see because I had to wear my glasses and they would only fit over the halo so I couldn't really see the t.v. which was up above my line of vision with my glasses. My parents came to visit with us which was nice to 'waste the time' talking and laughing! I also had a co-worker from work stop by and an old family friend who was there for her dad's surgery.
At @3:45 they came to get me to go down to radiation oncology. They had to 'plug' me into the table - this is so you don't move at all! Then they did the radiation which I didn't feel a thing.... they say you won't! Afterwards, the PA from the neurology office took out the screws on the halo and took it off. This was the worst part! I was in some pain at those sites for a little while but by the time I got discharged, I felt fine! After the treatment and halo removal, we went back to the 8th floor, got my awful IV out (this one was positioned that if I moved my hand, it wouldn't work properly and I could feel it in the vein), got dressed, received discharge instructions and went home! We got home @ 6:30 p.m. Made for a very long day - and we were both very exhausted - I got @ a 1 hour nap; Kurt got a little bit of one but he didn't have a bed or a nice chair to lay in!
Once we got home, I got extremely cold and laid on the couch with two blankets. We took my temperature and sure enough, I was running a temp of 101.0 degrees. Kurt called the hospital and talked to the PA who said she would call the neurosurgeon. The doctor called our house and said that if it goes up any more, come to the emergency room - he figures it is just an illness I am getting. He said to take more tylenol and rest. So, I did and woke up at 5:30 a.m. I took my temp which was 98.6 then; this morning it has been running 99.6 and 99.5. We will have to call and see if I can still have radiation on my hip with a low-grade fever. I'm guessing we might have to reschedule some of my upcoming appointments but we'll check with all of the offices.
For now, I am just laying low....
From there, I went into a CAT scan with my neurosurgeon (who put the halo on) and then they took me upstairs to the 8th floor to sit around for the day while they mapped the radiation area. I got up to the room at about 8:15 - I was waiting for Kurt and finally I called him about 20 minutes later. He didn't expect me to call him! :) It wasn't the easiest to sit around as you had the halo on but it wasn't the worst either! Kurt figured out where to put my pillows to make it more comfortable for me to sit on the bed. The only problem for me was that I didn't have a lot that I could see because I had to wear my glasses and they would only fit over the halo so I couldn't really see the t.v. which was up above my line of vision with my glasses. My parents came to visit with us which was nice to 'waste the time' talking and laughing! I also had a co-worker from work stop by and an old family friend who was there for her dad's surgery.
At @3:45 they came to get me to go down to radiation oncology. They had to 'plug' me into the table - this is so you don't move at all! Then they did the radiation which I didn't feel a thing.... they say you won't! Afterwards, the PA from the neurology office took out the screws on the halo and took it off. This was the worst part! I was in some pain at those sites for a little while but by the time I got discharged, I felt fine! After the treatment and halo removal, we went back to the 8th floor, got my awful IV out (this one was positioned that if I moved my hand, it wouldn't work properly and I could feel it in the vein), got dressed, received discharge instructions and went home! We got home @ 6:30 p.m. Made for a very long day - and we were both very exhausted - I got @ a 1 hour nap; Kurt got a little bit of one but he didn't have a bed or a nice chair to lay in!
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| Not the greatest picture but will show you what was on me for the day! |
Once we got home, I got extremely cold and laid on the couch with two blankets. We took my temperature and sure enough, I was running a temp of 101.0 degrees. Kurt called the hospital and talked to the PA who said she would call the neurosurgeon. The doctor called our house and said that if it goes up any more, come to the emergency room - he figures it is just an illness I am getting. He said to take more tylenol and rest. So, I did and woke up at 5:30 a.m. I took my temp which was 98.6 then; this morning it has been running 99.6 and 99.5. We will have to call and see if I can still have radiation on my hip with a low-grade fever. I'm guessing we might have to reschedule some of my upcoming appointments but we'll check with all of the offices.
For now, I am just laying low....
Sunday, June 19, 2011
A Relaxing Time Before the Start of Radiation Week - 6/19/2011
We left last Tuesday afternoon for a family camping trip. We thought we would go from Tuesday to Friday and come home for an appointment that afternoon. We decided when we were there that we were having so much fun that we stayed until Sunday instead! It was relaxing, we slept well (except for one night) and we had a great time with each other! It felt like a 'normal' thing we would do each summer - I needed some of that as most of my last two months has NOT been normal! I have been weened off one of the two medications I have been on since May 10th. I am starting to feel less dizzy and much more human again! (This medication was the one for the brain swelling; I will be on the anti-seizure meds for several months still.)
When we woke up on Tuesday, we weren't sure we would be going. I've been swelling up a little on my face over the days but that day when I woke up, my face was very swollen as well as my back of my neck. Kurt told me either I called my doctor's office or he was taking me to the emergency room. So, I did call my doctor's office and they eventually called back to let me know this is very normal after surgery and it was fine as long as I wasn't running a fever (which I wasn't). So, we got ready and just as we were getting ready to leave, a package came with a hat that I ordered. I have been wearing scarves on my head (and while they are not really me, I've gotten kind of used to them but looked forward to wearing a hat). I was excited to find that the hat that I bought had terry cloth around the band of the hat on the inside and was very comfortable. So, I wore that all week! My aunt also brought me a "Fight Like a Girl" pink hat which fit nicely and I wore on Saturday. And, sortof a funny story to me ... while I was coming out of the bathroom at the campsite, I said hi to two boys who were walking by. Most kids won't say hi back to me (which I knew but I still said hi to them) and as we walked a little further, I heard the one boy say to the other, "I thought that lady was a guy!" Of course, Ashley was with me and you could tell that bothered her more than me. Both of my kids have a hard time when people stare... I expect it but I don't think they understand why people react that way.
On Friday I went to the radiation oncology office to get my hip mapped for radiation. It took approximately 15 minutes and they basically just mark your skin where they will put the machine for radiation. I also got three dots of tattoos on my hips. Kurt was proud that I finally got some "ink" but they look like a freckle!
Later Friday night we went to the Relay for Life at Al Quaal in Ishpeming. I've gone for many years but have never stayed for as long as we did this year - we saw them light the luminaries; what an amazingly beautiful sight! This was also a bit overwhelming as I saw MANY bags decorated in my honor - thank you to everyone who decorated a bag for me!!!! It was a very nice time for me - the one thing that I find hard about having cancer is that you have cancer! I remember feeling that way the last time I had cancer. It's hard to explain but most of the time every day, I am now "Jodi with cancer" instead of just "Jodi". During the Relay for Life, there are so many people who understand and don't stare or look at you - I felt like I was just "Jodi". It was very nice to hang out there, chat with co-workers who came to walk, listen to stories from cancer survivors, and finally to talk to another person who also grew up in Gwinn that had cancer that spread to her brain. While our treatments and cancers are different, we plan to talk!
This next Monday - Friday is radiation week! We will be spending quite a bit of time at MGH this week. On Monday, I am having my brain radiation. We have to be there at 5:30 a.m. and they will put a halo on my head. I'm not really looking forward to this but know that it is necessary... and from the sounds of it, it won't be as bad as I am preparing for it to be. After they put the halo on, they will either do an MRI or a CAT scan. Then the neurosurgeon and the radiation oncologist will do the mapping for my radiation for the brain and I will be sent up to wait in the neuro floor of the hospital until they are done and ready for me to come down. The brain radiation will then be done and they will take the halo off and I can go home. They said to expect to stay until at least 5 p.m. or later so we will be there all day. Tuesday - Friday I will have @ 20 minutes of radiation treatments per day on my hip. Also, on Wednesday, we will be back there for many hours for the Mediport line to be put in (also something I am not particularly looking forward to but am sure it will be better in the end then continually being picked and IVs put in). After Friday, radiation treatments will be done. And, on the next Monday, I will go in for my first immunotherapy treatment.
I thank everyone for the thoughts, prayers, cards, emails - I do think that all of the prayers have been helping! And, I believe...
When we woke up on Tuesday, we weren't sure we would be going. I've been swelling up a little on my face over the days but that day when I woke up, my face was very swollen as well as my back of my neck. Kurt told me either I called my doctor's office or he was taking me to the emergency room. So, I did call my doctor's office and they eventually called back to let me know this is very normal after surgery and it was fine as long as I wasn't running a fever (which I wasn't). So, we got ready and just as we were getting ready to leave, a package came with a hat that I ordered. I have been wearing scarves on my head (and while they are not really me, I've gotten kind of used to them but looked forward to wearing a hat). I was excited to find that the hat that I bought had terry cloth around the band of the hat on the inside and was very comfortable. So, I wore that all week! My aunt also brought me a "Fight Like a Girl" pink hat which fit nicely and I wore on Saturday. And, sortof a funny story to me ... while I was coming out of the bathroom at the campsite, I said hi to two boys who were walking by. Most kids won't say hi back to me (which I knew but I still said hi to them) and as we walked a little further, I heard the one boy say to the other, "I thought that lady was a guy!" Of course, Ashley was with me and you could tell that bothered her more than me. Both of my kids have a hard time when people stare... I expect it but I don't think they understand why people react that way.
On Friday I went to the radiation oncology office to get my hip mapped for radiation. It took approximately 15 minutes and they basically just mark your skin where they will put the machine for radiation. I also got three dots of tattoos on my hips. Kurt was proud that I finally got some "ink" but they look like a freckle!
Later Friday night we went to the Relay for Life at Al Quaal in Ishpeming. I've gone for many years but have never stayed for as long as we did this year - we saw them light the luminaries; what an amazingly beautiful sight! This was also a bit overwhelming as I saw MANY bags decorated in my honor - thank you to everyone who decorated a bag for me!!!! It was a very nice time for me - the one thing that I find hard about having cancer is that you have cancer! I remember feeling that way the last time I had cancer. It's hard to explain but most of the time every day, I am now "Jodi with cancer" instead of just "Jodi". During the Relay for Life, there are so many people who understand and don't stare or look at you - I felt like I was just "Jodi". It was very nice to hang out there, chat with co-workers who came to walk, listen to stories from cancer survivors, and finally to talk to another person who also grew up in Gwinn that had cancer that spread to her brain. While our treatments and cancers are different, we plan to talk!
This next Monday - Friday is radiation week! We will be spending quite a bit of time at MGH this week. On Monday, I am having my brain radiation. We have to be there at 5:30 a.m. and they will put a halo on my head. I'm not really looking forward to this but know that it is necessary... and from the sounds of it, it won't be as bad as I am preparing for it to be. After they put the halo on, they will either do an MRI or a CAT scan. Then the neurosurgeon and the radiation oncologist will do the mapping for my radiation for the brain and I will be sent up to wait in the neuro floor of the hospital until they are done and ready for me to come down. The brain radiation will then be done and they will take the halo off and I can go home. They said to expect to stay until at least 5 p.m. or later so we will be there all day. Tuesday - Friday I will have @ 20 minutes of radiation treatments per day on my hip. Also, on Wednesday, we will be back there for many hours for the Mediport line to be put in (also something I am not particularly looking forward to but am sure it will be better in the end then continually being picked and IVs put in). After Friday, radiation treatments will be done. And, on the next Monday, I will go in for my first immunotherapy treatment.
I thank everyone for the thoughts, prayers, cards, emails - I do think that all of the prayers have been helping! And, I believe...
Monday, June 13, 2011
Update on Treatment & Radiation - 6/13/2011
This morning Kurt and I met with my oncologist. I will be going in next Wednesday to get a Mediport put in - this will be put in my chest and will be used for both IVs and blood draws (since my arms are still not healed from both surgeries.)
On Monday, June 27th I will be starting treatments. She indicated that the drug that I will take (impulimbab - or Yervoy) is actually not considered chemotherapy. It is basically given by IV (part of the reason for the Mediport) for 90 minutes once every three weeks for 4 times - so for 12 weeks. It is an immunotherapy drug and basically builds up your immune system to fight the cancer throughout your body.
She indicated that for the most part, the worst symptom of this drug is actually diarrhea. She also said that a few patients get nauseous but not many. The only other potential issues that she will be watching is that it can affect either your pituitary gland or thyroid. If this were to happen, there are medications that they can give for that.
We then went and met with the radiation oncologist. I will be starting radiation next week on both my brain and my hip. As he indicated, when they do surgery on your brain, they try to get as much of the tumor as they can without getting too much 'good' brain as that can cause problems. He asked me a bunch of questions ... what is 3+3 (6); how do you spell 'world' and how do you spell it backwards (dlrow); what is the year (2011); what is the month (June); who is the president (Obama); okay, and the one I couldn't get .... who was the previous president (got it after awhile of thinking and then saying Clinton and then said George W. Bush); he also asked me to remember the colors yellow, red and black and then several minutes later went back and asked what colors he had asked me. Got those too! These are all things that can be affected by both the surgery as well as brain radiation over a period of time. He said if you could do a complex math problem in your head, after surgery/radiation, you might need to do it on paper with a pencil. He also said it would be liking forgetting were you put your keys, etc. We did neurological tests like having my move my eyes where his finger moved, touching my finger to his, touching my finger to my nose, lifting my legs, lifting my arms, walking balanced on a line - like a sobriety test, etc. I think I passed all tests for the most part.
They are working to schedule this still but the plan is that I will be going in next week to get a halo put on my head and they will then work that day with the neurosurgeon to set up the brain radiation treatment. That day/night I will then have my the halo removed and the radiation on my brain done. The brain radiation will be done only once on each of the two spots. (He indicated that if you have 3 or less spots on the brain, they try to do what they call stereotactic radiation.... focused radiation beams targeting a well-defined tumor with precise treatment set-up to deliver the radiation to dose to with extreme accuracy to the area of where the tumor was and to kill any cells that may still be in that area.)
When I had my PET scan, my hip came back with a 'hot' spot. They sent me for an MRI last Friday to make sure that the hip did not have cancer in it. See below for picture but they found that the my right hip does indeed have cancer in the muscle and it is now starting to move towards the bone. They are going to radiate my hip as well. For the hip, I will have to go for five days at approximately 10-20 minutes each time.
And, since they gave me a picture of the MRI after my second surgery, I thought I would put this on picture on here as well:
My oncologist and I spoke about when I could go back to work. Obviously, she gave me a date of October 3rd (since this is when my treatments will be done); I asked if I was feeling okay after treatments if it could be earlier than that. I guess I will just have to wait and see how I am with the treatment and go from there. I can't drive anyway but I am sure that I could pay a co-worker to carpool with them! (And, can you tell that I am anxious to get back to work? I love my job and definitely want to get back there before October 3rd! Hopefully I will be able to go back and then take time off for treatments.... that is my goal! I do know that I need to be healthy and know I couldn't go back yet but I am hoping in the next month or two I will be able to go back!)
The only other thing I was thinking about blogging about is that I haven't drove since Monday, May 9th! It's weird to to be stuck in your house and not be able to go whenever you want - I miss that! I've had MANY people offer to take me anywhere and I am greatful ... it's just weird not to be able to be independent! Plus, I am still not allowed to lift more than 10 pounds - so no hauling anything! This has also been hard for me.
I am looking forward to tomorrow! We decided that because appointments are going to be busy for the next few weeks now, we are going to take the kids and either go camping or go somewhere for a few days! Looking forward to feeling good and hanging out with my family!!!!!
On Monday, June 27th I will be starting treatments. She indicated that the drug that I will take (impulimbab - or Yervoy) is actually not considered chemotherapy. It is basically given by IV (part of the reason for the Mediport) for 90 minutes once every three weeks for 4 times - so for 12 weeks. It is an immunotherapy drug and basically builds up your immune system to fight the cancer throughout your body.
She indicated that for the most part, the worst symptom of this drug is actually diarrhea. She also said that a few patients get nauseous but not many. The only other potential issues that she will be watching is that it can affect either your pituitary gland or thyroid. If this were to happen, there are medications that they can give for that.
We then went and met with the radiation oncologist. I will be starting radiation next week on both my brain and my hip. As he indicated, when they do surgery on your brain, they try to get as much of the tumor as they can without getting too much 'good' brain as that can cause problems. He asked me a bunch of questions ... what is 3+3 (6); how do you spell 'world' and how do you spell it backwards (dlrow); what is the year (2011); what is the month (June); who is the president (Obama); okay, and the one I couldn't get .... who was the previous president (got it after awhile of thinking and then saying Clinton and then said George W. Bush); he also asked me to remember the colors yellow, red and black and then several minutes later went back and asked what colors he had asked me. Got those too! These are all things that can be affected by both the surgery as well as brain radiation over a period of time. He said if you could do a complex math problem in your head, after surgery/radiation, you might need to do it on paper with a pencil. He also said it would be liking forgetting were you put your keys, etc. We did neurological tests like having my move my eyes where his finger moved, touching my finger to his, touching my finger to my nose, lifting my legs, lifting my arms, walking balanced on a line - like a sobriety test, etc. I think I passed all tests for the most part.
They are working to schedule this still but the plan is that I will be going in next week to get a halo put on my head and they will then work that day with the neurosurgeon to set up the brain radiation treatment. That day/night I will then have my the halo removed and the radiation on my brain done. The brain radiation will be done only once on each of the two spots. (He indicated that if you have 3 or less spots on the brain, they try to do what they call stereotactic radiation.... focused radiation beams targeting a well-defined tumor with precise treatment set-up to deliver the radiation to dose to with extreme accuracy to the area of where the tumor was and to kill any cells that may still be in that area.)
When I had my PET scan, my hip came back with a 'hot' spot. They sent me for an MRI last Friday to make sure that the hip did not have cancer in it. See below for picture but they found that the my right hip does indeed have cancer in the muscle and it is now starting to move towards the bone. They are going to radiate my hip as well. For the hip, I will have to go for five days at approximately 10-20 minutes each time.
My oncologist and I spoke about when I could go back to work. Obviously, she gave me a date of October 3rd (since this is when my treatments will be done); I asked if I was feeling okay after treatments if it could be earlier than that. I guess I will just have to wait and see how I am with the treatment and go from there. I can't drive anyway but I am sure that I could pay a co-worker to carpool with them! (And, can you tell that I am anxious to get back to work? I love my job and definitely want to get back there before October 3rd! Hopefully I will be able to go back and then take time off for treatments.... that is my goal! I do know that I need to be healthy and know I couldn't go back yet but I am hoping in the next month or two I will be able to go back!)
The only other thing I was thinking about blogging about is that I haven't drove since Monday, May 9th! It's weird to to be stuck in your house and not be able to go whenever you want - I miss that! I've had MANY people offer to take me anywhere and I am greatful ... it's just weird not to be able to be independent! Plus, I am still not allowed to lift more than 10 pounds - so no hauling anything! This has also been hard for me.
I am looking forward to tomorrow! We decided that because appointments are going to be busy for the next few weeks now, we are going to take the kids and either go camping or go somewhere for a few days! Looking forward to feeling good and hanging out with my family!!!!!
Thursday, June 9, 2011
Casey Arkens' Blog About Her Experience With Shaving Her Head - 6/9/2011
Casey is my friend who shaved her head before I went to get my hair cut off! She had been telling about some of her experiences and I asked if she would blog a story about it. Here is her story: (THANK YOU SO MUCH, CASEY!!!!!!!!)
Hello all, my name is Casey. Jodi and I have been friends for many, many years. So, not only are we friends; but for those of you who don't know, I am also her hair stylist.
One of my favorite memories with Jodi is the time we decided to go camping at Oscar Lake. As we were driving out there, we came upon a large tree across the road, and of course, we tried to move it. It would not budge, so we did what anyone else would have done. We set up camp right in the middle of the road... a two rut road. Little did we know this would be a memory to talk about for years! We had a hilarious time, as you can see from this beautiful picture of Jodi!
When I heard about Jodi and how her life had changed so monumentally in such a short span of time, I felt shocked... sad... upset.... angry... and then determined to keep a smile on my friends' face and hope in her heart.
Jodi had her first surgery, and with that, half a head of hair removed. I knew she would be ready to shave the rest off soon. When she called to ask, I knew there was something I could do to make her smile. I shaved my hair off before she came in to my shop. After all, how could I be her hair stylist and tell her, "It's only hair, it will grow back," if I had a full head of hair? So, off my hair came. When Jodi and Kurt walked in to the hair shop, there was her smile (Kurt's too) and of course some tears. It takes incredible courage to sit in the hair chair, in front of the mirror, and watch the rest of your hair come off. I can only hope having another bald head staring at you in the mirror would make it easier. So, we had a hair shaving party... Jodi, then Kurt, then John (Jodi's brother) and even Andrew (Jodi's nephew), joined in with a mohawk! :)
This is what I did not expect when I cut my hair:
I didn't expect kids I've known their entire life to be scared of me. I didn't expect them to hide behind their parents when I talked to them. I wondered, does the short, short hair scare them? Is it because girls aren't supposed to have hair this short.... or do they think that I am sick??
I knew that women who knew me would show concern. And they did, asking "Are you okay?" or "What happened to your hair?" Women that didn't know me, mostly smiled, being curious, I think. But, what I didn't expect was for them to look away so quickly after they smiled.
I didn't expect just about every man would look away or not even be able to make eye contact with me. I've talked to many people about this being a hair stylist and all, and I have narrowed it down to two ideas:
- My husband said, "Men are fixers, and if you are sick, they can't fix that, and it makes them uncomfortable." I understand this thought and let me tell ya, the feeling of being uncomfortable lasts longer for me then it did for them. And since I am not sick, I can't imagine how much it would hurt if you really were sick.
- One of my clients said, "Please don't take any offense, but some men may think that you are a lesbian and that may make them uncomfortable." Which I guess if this is true, beware ladies... if you're walking along side of me, people may be thinking something unusual about you too! :)
The only "group" of people who seem to smile or say "hi", no mater what, are the elderly. And my thoughts on this are, they are wise with their years. They have seen illness come and go, friends and family come and go, and the compassion shows in their eyes.
With that, what I thought was just going to be a new hairstyle has turned into much more. It has showed me a glimpse of how Jodi must feel when she walks into a restaurant or goes into a grocery store. The looks or the no-looks, or the whsipers behind her back. It hurts my heart because I am not sick, and Jodi is, and that must make all the whispers that much harder.
It got me thinking of the power of a smile. If everyone could just smile. How it could change a day? Brighten a day? By just a smile? So, I've started something... a pay it forward... a smile for Jodi.
Wristbands made just for Jodi. Wristbands that say "A Smile for Jodi." A reminder to the people who wear them there is power in a smile. A gift of a smile. And my hope is that when Jodi walks into a restaurant or goes into a grocery store, she will see friends and strangers wearing her wristbands and she will smile too!
Hello all, my name is Casey. Jodi and I have been friends for many, many years. So, not only are we friends; but for those of you who don't know, I am also her hair stylist.
One of my favorite memories with Jodi is the time we decided to go camping at Oscar Lake. As we were driving out there, we came upon a large tree across the road, and of course, we tried to move it. It would not budge, so we did what anyone else would have done. We set up camp right in the middle of the road... a two rut road. Little did we know this would be a memory to talk about for years! We had a hilarious time, as you can see from this beautiful picture of Jodi!
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| Jodi Camping At Oscar Lake - @ 1995 |
When I heard about Jodi and how her life had changed so monumentally in such a short span of time, I felt shocked... sad... upset.... angry... and then determined to keep a smile on my friends' face and hope in her heart.
Jodi had her first surgery, and with that, half a head of hair removed. I knew she would be ready to shave the rest off soon. When she called to ask, I knew there was something I could do to make her smile. I shaved my hair off before she came in to my shop. After all, how could I be her hair stylist and tell her, "It's only hair, it will grow back," if I had a full head of hair? So, off my hair came. When Jodi and Kurt walked in to the hair shop, there was her smile (Kurt's too) and of course some tears. It takes incredible courage to sit in the hair chair, in front of the mirror, and watch the rest of your hair come off. I can only hope having another bald head staring at you in the mirror would make it easier. So, we had a hair shaving party... Jodi, then Kurt, then John (Jodi's brother) and even Andrew (Jodi's nephew), joined in with a mohawk! :)
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| Casey Arkens, Jodi, Kurt, Andrew and John |
This is what I did not expect when I cut my hair:
I didn't expect kids I've known their entire life to be scared of me. I didn't expect them to hide behind their parents when I talked to them. I wondered, does the short, short hair scare them? Is it because girls aren't supposed to have hair this short.... or do they think that I am sick??
I knew that women who knew me would show concern. And they did, asking "Are you okay?" or "What happened to your hair?" Women that didn't know me, mostly smiled, being curious, I think. But, what I didn't expect was for them to look away so quickly after they smiled.
I didn't expect just about every man would look away or not even be able to make eye contact with me. I've talked to many people about this being a hair stylist and all, and I have narrowed it down to two ideas:
- My husband said, "Men are fixers, and if you are sick, they can't fix that, and it makes them uncomfortable." I understand this thought and let me tell ya, the feeling of being uncomfortable lasts longer for me then it did for them. And since I am not sick, I can't imagine how much it would hurt if you really were sick.
- One of my clients said, "Please don't take any offense, but some men may think that you are a lesbian and that may make them uncomfortable." Which I guess if this is true, beware ladies... if you're walking along side of me, people may be thinking something unusual about you too! :)
The only "group" of people who seem to smile or say "hi", no mater what, are the elderly. And my thoughts on this are, they are wise with their years. They have seen illness come and go, friends and family come and go, and the compassion shows in their eyes.
With that, what I thought was just going to be a new hairstyle has turned into much more. It has showed me a glimpse of how Jodi must feel when she walks into a restaurant or goes into a grocery store. The looks or the no-looks, or the whsipers behind her back. It hurts my heart because I am not sick, and Jodi is, and that must make all the whispers that much harder.
It got me thinking of the power of a smile. If everyone could just smile. How it could change a day? Brighten a day? By just a smile? So, I've started something... a pay it forward... a smile for Jodi.
Wristbands made just for Jodi. Wristbands that say "A Smile for Jodi." A reminder to the people who wear them there is power in a smile. A gift of a smile. And my hope is that when Jodi walks into a restaurant or goes into a grocery store, she will see friends and strangers wearing her wristbands and she will smile too!
Wednesday, June 8, 2011
PET Scan Results / Chemo / Radiation - 6/8/2011
I received a voicemail from my neurosurgeon last night regarding the new medications that they have been talking about on the news the past few days. I called and left him a message today as I was gone for most of yesterday so I didn't get to talk to him. It's amazing to me how hard they all are working for me - but believe me, I am greatful!!!!
This morning I got a phone call from my oncologist. My PET scan came back with only the liver melanoma and something in my hip. I told her that they had indicated from a bone scan in the hospital the first time that I had a stress fracture but she would like me to go in to have an MRI just to make sure. She indicated that if the MRI comes back with something on the hip, they would do radiation on my hip as well. The office called and is going to try to get me in either tomorrow or Friday since I see my oncologist on Monday.
The oncologist indicated that I will be contacted by the radiation oncologist to start brain radiation. This will start fairly soon. She also indicated that I will now do the Ipilimumab IV injection instead of the temador pills. I have an appointment on Monday to see her and will find out then when I will start that. Basically, that is a 90 minute IV that they inject and then you go back in 3 weeks .
This morning I got a phone call from my oncologist. My PET scan came back with only the liver melanoma and something in my hip. I told her that they had indicated from a bone scan in the hospital the first time that I had a stress fracture but she would like me to go in to have an MRI just to make sure. She indicated that if the MRI comes back with something on the hip, they would do radiation on my hip as well. The office called and is going to try to get me in either tomorrow or Friday since I see my oncologist on Monday.
The oncologist indicated that I will be contacted by the radiation oncologist to start brain radiation. This will start fairly soon. She also indicated that I will now do the Ipilimumab IV injection instead of the temador pills. I have an appointment on Monday to see her and will find out then when I will start that. Basically, that is a 90 minute IV that they inject and then you go back in 3 weeks .
Monday, June 6, 2011
Patiently Awaiting PET Scan Results - 06/06/2011
I called the oncologists' office this afternoon to see if I could get the results from my PET scan last week. They took a message for the nurse and said they would call me back but I haven't heard from them yet. Kurt and I both said that we heard from them right away about everything bad so hopefully this is good news.
As soon I hear about the results, I will post!
As soon I hear about the results, I will post!
Sunday, June 5, 2011
U.P. P!nk Power - 06/05/2011
Thank you to the U.P. P!nk Power Girls - Casey Arkens, Jenny Ghiringhelli,
Kim Watt and Julie Vallier!!!!
They walked 26 miles on Saturday (June 4th) in 92 degree weather and then 13.3 miles on Sunday (June 5th) for the Susan B. Komen Breast Cancer Walk in Chicago!
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| Thank you U.P. P!nk Power - Kim Watt, Julie Vallier, Jenny Ghiringhelli and Casey Arkens!!!!!! (Love to you all!!!!) |
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| Saturday, June 4th - 26 miles in 92 degree weather! |
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| Kim Watt, Casey Arkens, Julie Vallier and Jenny Ghiringhelli |
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| Sunday, June 5th - 39.3 miles; U.P. P!nk Power - Kim Watt, Casey Arkens, Jenny Ghiringhelli and Julie Vallier |
Again, how do you thank them for thinking of me!?!?!
Wednesday, June 1, 2011
A Good Day - 6/1/2011
Yesterday I was having a 'tired' day. I took a couple of naps. And, I was having a hard time talking and understanding things. I was having a hard time talking even though I knew what I wanted to say. I got a phone call from one of the guys that my dad worked with at the base and I felt foolish because I didn't know who it was at first but figured it later. It was nice to hear from you, Jeff and Cheryl! (And, thanks for the flowers - you didn't have to send them!)
Today I am doing much better. I actually have been up since 7 a.m. and haven't taken a nap. Pretty soon I will be going to bed - maybe I will try to stay up until 11 p.m. so Kurt doesn't have to wake me up to give me my medications. Today Kurt and I got up and brought the kids to school. He said I am ruining his diet because I wanted to go for breakfast. It's kindof weird to go out because people are looking at us! When we got home I "supervised" him putting together a new grill in the garage. It was nice to be outside even though it sounded like the garage doors were going to fall down because it was so windy outside.
And, I got a phone call from the MRI department. I will be going in tomorrow (instead of Friday) for my PET scan. I don't believe I will know anything until I meet with my oncologist on June 13th. I am not exactly sure what to expect but I know they give you medications if you are claustrophobic. I've got to be there at 10:15 and the paperwork says that it'll take 2-3 hours. When I get the results, I will post them!
Today I am doing much better. I actually have been up since 7 a.m. and haven't taken a nap. Pretty soon I will be going to bed - maybe I will try to stay up until 11 p.m. so Kurt doesn't have to wake me up to give me my medications. Today Kurt and I got up and brought the kids to school. He said I am ruining his diet because I wanted to go for breakfast. It's kindof weird to go out because people are looking at us! When we got home I "supervised" him putting together a new grill in the garage. It was nice to be outside even though it sounded like the garage doors were going to fall down because it was so windy outside.
And, I got a phone call from the MRI department. I will be going in tomorrow (instead of Friday) for my PET scan. I don't believe I will know anything until I meet with my oncologist on June 13th. I am not exactly sure what to expect but I know they give you medications if you are claustrophobic. I've got to be there at 10:15 and the paperwork says that it'll take 2-3 hours. When I get the results, I will post them!
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