I am a little early this week. Actually, I'm avoiding work but don't tell them okay? But how can you avoid work when it isn't starting time yet? I think that is the joy of working from home. I usually log into work by 6:00 while Philip is getting ready for school. Then I take him (about 15 minutes total), and come home to work. Lately, things have been pretty busy so I dig right in and usually work until dinner time but today? Well I decided to blog first instead. Gotta mix it up...right? Can't have them thinking they get me from 6 am to 6 pm every day!!
I had a really interesting occurrence yesterday. As you may or may not know, I belong to a few online support groups. One is for Myositis (great group), one is for parents of teens (not so great but a reality check that my teen is doing good), and one for people with Non-Hodgkins Lymphoma. Sadly, we learned one of our active supporters in the NHL group passed away last month. It was quite shocking as he was a body builder and very health conscious all his life. He had some pretty nasty cancer going on and treatment just kept failing. Somewhere along the line, his diagnosis changed from NHL to something more serious. He was doing inpatient chemo trying to get ready for a stem cell transplant. I guess it was just too much for his body (we didn't get many details except that he passed). He had a very close friend in the group so I reached out to her to express my condolences for the loss of her "friend". This was all happening about the time that I was learning of my relapse. She had wished me well on my PET scan and other various messages but no questions or inquiry to keep her updated. I took it as that, just support and didn't write back. Well needless to say, I was chastised yesterday for not responding and that "someone with my experience should know better than to not respond". And she was leaving the support group. I was certainly taken aback. I did write to tell her I didn't mean to neglect her and wished her great health in her cancer journey.
So it got me thinking about online support and just how helpful it may or may not be. I try very hard to be supportive but some people can just sap the life out of you. One of the reasons I use online support is I don't want a "Level 1 Klingon" following me around in real life. When I want to be supported or offer support, I can and when I don't want to do it or I am not in the mood, I just don't log in. I find it interesting she chastised me and was "hurt" by it all. (I know....online drama...."insert eye roll"). I think even more about sick people and how so many search out "caregivers" or people that will support them in their time of need. Some are just downright demanding. I hope I've never been like.
I had another interesting observation last week. I had gone to "Dream Dinners" to prep some dinners for Philip and I to try to eat better while my schedule is so stretched. I somehow got grouped with another woman. We had idle chit chat where she told me she had cancer 2 years ago and used DD that were a gift from a dear friend during that time. I think she told all 10 women there that she had cancer. She wanted to make sure everyone knew she was a cancer survivor. Good for her. Really! But really, that is not me. I like to keep it quiet. Like its a dirty secret or something...I know it isn't. I'm going to have to think more about these different situations and determine if I am doing it wrong. Such an interesting study of human behavior.
Onto fun things....I learned last week my favorite sister in the whole world is coming to Utah for a quick visit. We are going to venture down to St. George to visit our Grandma. We are also going to get together with the other side of the family to celebrate Cindy's birthday! It should be a fun visit and I am looking forward to it.
My life ticks on. I learned yesterday that I am headed to San Francisco in April for a client visit. I love San Francisco and will always jump at a chance to go even if it is a business trip. But sadly, I don't know that we will even see the city and will probably spend all our time in Oakland. Well what time there is in a 24 hour period.
Philip and I are getting ready to head out of dodge for his Spring Break. It seems unreal to try to think about warm weather clothes and being on the beach but we are going to give it a go. Mom and Chuck are meeting us. I hope our flights go okay and we don't forget anything critical as we pack. Thanks to Mars and John for watching my house and kitties.
Another weirdo thing I need to do is finally break down and get my left wrist checked out. It has been bothering me since my marathon knitting in October/November but now it is bad enough it keeps waking me up at night. I suspect it is tendinitis. I finally broke down and got out Philip's spiffy wrist brace we bought last summer and have been wearing that. It seems to help lots but it is a tad tight for me. I might have to go get a bigger one before our trip. Or maybe I should quit typing in my lap. Typing in my lap is not the proper ergonomic position for posture. I wonder if I could file workman's comp for that? Probably not since I work at home and refuse to set up a proper office environment (I'm like a cat...I like to be in the sunshine that streaks through the windows during the day).
Oh and I wanted to let you know...I'm mastering the strappy sandals. I'm still careful walking but no longer clomp along like a baby giraffe with my arms stretched out. I haven't mastered the other new shoes...the slides but those are next!
So that is about it. I know I had something really clever to write about when I started writing today but it is completely gone now. The joys of growing old.
Cancer schmanzer....my life goes on. Have a wonderful Easter Holiday!
Thursday, March 28, 2013
Saturday, March 23, 2013
Blissful Ignorance - Part I
I wanted to give everyone an update this week. On the cancer front, everything is still good. No night sweats, no lumps, no pain so I am in a period I call "Blissful Ignorance". I'm feeling good, optimistic, and hopeful which is a good thing I think.
Speaking of cancer, I've found a very interesting phenomenon going on. When I run into people that don't know about my returned cancer situation, I haven't found a great way to tell them without shocking them. I don't know that there is ever a good time to tell someone you have cancer but there has to be a more gentle way. Right?
My first situation was with a great friend from book club. I thought she already knew but much to my surprise, she did not. As I blurted out that my pathology was not good, her eyes got all teary and we both sat in Red Robin crying like babies. This is when I realized, I am a sympathy cryer. If someone gets a shaky chin and tears in their eyes, I join in the tears.
Another situation happened last week. I went to Dr. S's office. I see his daughter for my silk peels on my face. I knew Dr. S would tell her about my cancer but I had no idea she would be so emotional about it. I went into the room and she looked at me...speechless. Her chin quivered and that was all she wrote. We both sat and hugged and ugly cried. She has had her own cancer experiences and certainly is "cancer" aware.
And finally, I went to get my hair done today. This is the same hairdresser (Logan) I've gone to for years and whom last time I saw, is when I noticed my eyebrow lump as I left the salon. So I filled him in as soon as I sat down. He had a new assistant that just started crying. Total stranger but I guess it was too much for her. Logan was more composed but was very concerned I got cancer from the cosmetics he used on me. Of course, I didn't. I found myself trying to laugh it off to help them feel better about it all. As you know, I've always treated my cancer with humor so that isn't so foreign but it is a interesting process.
This week, I ask you all for ideas on how to better tell people I have cancer. What sort of things would help the message go over better? Or is it just a nasty message and that is the way it is? Let me know your thoughts.
While getting my hair done, Logan decided to help me "clean up" my eyebrows. It made me very nervous and I am still over protective of my right eyebrow. I believe the incision is probably healing but I just couldn't let him wax it. He was so nice and gently plucked all my strays but that was the first time I've let anyone touch my brow since the surgery. It was pretty scary actually but my brows look Mah-valous.
I decided to stop trimming my hair for a while until I know what is going on with treatments. If I have to do full chemo and lose my hair, I can't think of a better thing to do then cut it off before I start to lose it and donate it to "Locks of Love". In order to donate, you have to have 12" of hair. I am pretty close to that if we cut it close to my scalp. A couple months of growing should insure I am there. I've heard lots of people say it is better to shave it off than let it fall out. So longer we go until we know what the cancer is going to do. It will be easier to style this Spring (think ponytail) and if, god forbid, I have to have aggressive chemo, I will feel like I am doing something good while going bald. I won't lie....the thought of losing my hair is the worst part of the whole deal. I know my naked noggin' is not pretty. Good thing chemo isn't on the front burner right now.
Philip just finished 3rd term at school. He got behind and worked very hard to catch up. He was such a trooper and stuck with it and ended the term with everything turned in and caught up. I'm very proud of him. His final grades are not in yet but it looks like he might be where he needs to be to stay academically strong. If not, his cumulative GPA shouldn't be hit too hard overall.
This weekend has been snowy in Salt Lake. It is very disappointing to see it snowing and the roads and sidewalks covered with snow. I just couldn't make myself scrape it. My poor daffodils are trying really hard to bloom. It never fails that the snow comes and punches their bright yellow heads into the mud. Snow is such a bully...and I am very sick of it. I hear it is suppose to be 60 degrees the later part of next week.
So this week has gone well. I can honestly say I feel hope in my heart. I hope you do too. Have a fabulous weekend.
XOXO
Speaking of cancer, I've found a very interesting phenomenon going on. When I run into people that don't know about my returned cancer situation, I haven't found a great way to tell them without shocking them. I don't know that there is ever a good time to tell someone you have cancer but there has to be a more gentle way. Right?
My first situation was with a great friend from book club. I thought she already knew but much to my surprise, she did not. As I blurted out that my pathology was not good, her eyes got all teary and we both sat in Red Robin crying like babies. This is when I realized, I am a sympathy cryer. If someone gets a shaky chin and tears in their eyes, I join in the tears.
Another situation happened last week. I went to Dr. S's office. I see his daughter for my silk peels on my face. I knew Dr. S would tell her about my cancer but I had no idea she would be so emotional about it. I went into the room and she looked at me...speechless. Her chin quivered and that was all she wrote. We both sat and hugged and ugly cried. She has had her own cancer experiences and certainly is "cancer" aware.
And finally, I went to get my hair done today. This is the same hairdresser (Logan) I've gone to for years and whom last time I saw, is when I noticed my eyebrow lump as I left the salon. So I filled him in as soon as I sat down. He had a new assistant that just started crying. Total stranger but I guess it was too much for her. Logan was more composed but was very concerned I got cancer from the cosmetics he used on me. Of course, I didn't. I found myself trying to laugh it off to help them feel better about it all. As you know, I've always treated my cancer with humor so that isn't so foreign but it is a interesting process.
This week, I ask you all for ideas on how to better tell people I have cancer. What sort of things would help the message go over better? Or is it just a nasty message and that is the way it is? Let me know your thoughts.
While getting my hair done, Logan decided to help me "clean up" my eyebrows. It made me very nervous and I am still over protective of my right eyebrow. I believe the incision is probably healing but I just couldn't let him wax it. He was so nice and gently plucked all my strays but that was the first time I've let anyone touch my brow since the surgery. It was pretty scary actually but my brows look Mah-valous.
I decided to stop trimming my hair for a while until I know what is going on with treatments. If I have to do full chemo and lose my hair, I can't think of a better thing to do then cut it off before I start to lose it and donate it to "Locks of Love". In order to donate, you have to have 12" of hair. I am pretty close to that if we cut it close to my scalp. A couple months of growing should insure I am there. I've heard lots of people say it is better to shave it off than let it fall out. So longer we go until we know what the cancer is going to do. It will be easier to style this Spring (think ponytail) and if, god forbid, I have to have aggressive chemo, I will feel like I am doing something good while going bald. I won't lie....the thought of losing my hair is the worst part of the whole deal. I know my naked noggin' is not pretty. Good thing chemo isn't on the front burner right now.
Philip just finished 3rd term at school. He got behind and worked very hard to catch up. He was such a trooper and stuck with it and ended the term with everything turned in and caught up. I'm very proud of him. His final grades are not in yet but it looks like he might be where he needs to be to stay academically strong. If not, his cumulative GPA shouldn't be hit too hard overall.
This weekend has been snowy in Salt Lake. It is very disappointing to see it snowing and the roads and sidewalks covered with snow. I just couldn't make myself scrape it. My poor daffodils are trying really hard to bloom. It never fails that the snow comes and punches their bright yellow heads into the mud. Snow is such a bully...and I am very sick of it. I hear it is suppose to be 60 degrees the later part of next week.
So this week has gone well. I can honestly say I feel hope in my heart. I hope you do too. Have a fabulous weekend.
XOXO
Sunday, March 17, 2013
Today is good!
Just as promised, Philip and I grabbed the weekend by the balls and had so much fun yesterday. We started by going out for hot Chai and bagel/muffin breakfast as we hit the road for Ogden. It was an absolutely beautiful day. Philip and I agreed to commit to a good day and to communicate and get along well....which we did.
We went up to Ogden to pick up a framing project for Mom. I haven't been to Ogden for quite a while...well over a year I believe. I was surprised how the towns along the way have grown and things have changed. I know I was driving like an idiot because I was gawking at everything. Plus it was a gorgeous day full of sunshine....not what the weatherman had promised which was a nice surprise. Philip asked me if Washington Blvd was there when I was younger (haha) which I confirmed it was. Then I couldn't help telling him some of the stories and pointing out places I used to go. Things like the ballpark I learned to play softball when I was a teen, and where the mall was we used to hang out at. Where I traded in my wrecked Camaro for an Isuzu Truck (during the dark period of my life for sure). I failed to point out the bars and hang outs that were not positive stories for my teen son which is great self control. Success at the frame shop and then we stopped in Kaysville to visit my Dad and Cindy.
They were busy cleaning up their yard. I couldn't help but feel like that is what I should be doing too but I pushed that aside. We had a chance to catch up and visit a bit. I also got to see their dogs and fat orange kitty. I seriously don't think shaving him is going to help him look trim Dad. It is like me saying spandex will make me svelte. Sounds good but probably not gonna happen. After our visit, Philip and I were starved. I had a chance to remind myself why I left Davis county years ago. Even Philip commented on the large families with SOOOO many unruly kids. GAHHH!
I wore my strappy sandals I wrote about and Philip had a great time laughing at my giraffe walk. Actually it isn't so much as a giraffe as a slow shuffle but I am working on it. I just know I can master the sandal. Now that the shoes have wear marks, they are mine now. No returning them.
Philip worked on homework when we got home and had some friends over to talk "Magic" cards. It is like a whole foreign language with all these rules. I realize I have no link to this world and just don't understand it but Philip had a great time. While he did that, I got out the polymer clay and started working on the Bottles of Hope project.
As you might recall, Philip did Bottles of Hope for my cancer doctor's office for his Eagle Scout project. They were a huge hit. When I saw my doctor on November, they said they went like lightening and wondered if we would make more. I knew Philip was done with it but I really thought he would love to do more. So I said yes of course. In fact, we would do them over the Christmas holiday and bring them in the first part of January. I really did mean that and it sounded so good coming out of my mouth but the reality is it obviously didn't happen. It is March already. I did promptly order the bottles though. 75 of them. And I bought label tags...but have no idea where they went. And then it went in the closet to never been seen again...or at least for a while.
Funny how finding out my cancer is back put this project on the front burner again. Philip and Mom went to one of Mars' clay class the first weekend of March. I decided it was a good catalyst for getting the bottles going with the clay scraps from class. So I set up on my kitchen table. It is completely covered with clay paraphernalia. Last weekend, Philip begrudgingly helped me with rolling the clay and did a few bottles. We got 16 bottled done. But I still have tons more. So last night while Philip's friends were over, I picked one of my favorite Pandora stations on my phone and got to town. I rolled and pressed and texturized and manipulated that clay like no tomorrow. I got the bottle making process down to a science. I turned it into a major clay operations of maximum speed and efficiency. No waste...or wander. I finished 35 bottles!! In full disclosure, I have 9 that still need to bake. But I only have 24 bottles left to do. I felt a huge sense of accomplishment. I am very happy with the progress. I am very hopeful I might get to have my table back by Fall!
Today is homework for Philip and recovery for me. It is sunny today but windy. When I look to the South east, there are dark grey clouds. It might be snowing in the mountains. I'm sorry if you are in snow Mars and John.
So I continue to feel my steps are lighter and more springy. I'm unable to bounce but if I could, it would be very springy. I hope you've found spring in your step as well.
Happy St. Patrick's Day!
We went up to Ogden to pick up a framing project for Mom. I haven't been to Ogden for quite a while...well over a year I believe. I was surprised how the towns along the way have grown and things have changed. I know I was driving like an idiot because I was gawking at everything. Plus it was a gorgeous day full of sunshine....not what the weatherman had promised which was a nice surprise. Philip asked me if Washington Blvd was there when I was younger (haha) which I confirmed it was. Then I couldn't help telling him some of the stories and pointing out places I used to go. Things like the ballpark I learned to play softball when I was a teen, and where the mall was we used to hang out at. Where I traded in my wrecked Camaro for an Isuzu Truck (during the dark period of my life for sure). I failed to point out the bars and hang outs that were not positive stories for my teen son which is great self control. Success at the frame shop and then we stopped in Kaysville to visit my Dad and Cindy.
They were busy cleaning up their yard. I couldn't help but feel like that is what I should be doing too but I pushed that aside. We had a chance to catch up and visit a bit. I also got to see their dogs and fat orange kitty. I seriously don't think shaving him is going to help him look trim Dad. It is like me saying spandex will make me svelte. Sounds good but probably not gonna happen. After our visit, Philip and I were starved. I had a chance to remind myself why I left Davis county years ago. Even Philip commented on the large families with SOOOO many unruly kids. GAHHH!
I wore my strappy sandals I wrote about and Philip had a great time laughing at my giraffe walk. Actually it isn't so much as a giraffe as a slow shuffle but I am working on it. I just know I can master the sandal. Now that the shoes have wear marks, they are mine now. No returning them.
Philip worked on homework when we got home and had some friends over to talk "Magic" cards. It is like a whole foreign language with all these rules. I realize I have no link to this world and just don't understand it but Philip had a great time. While he did that, I got out the polymer clay and started working on the Bottles of Hope project.
As you might recall, Philip did Bottles of Hope for my cancer doctor's office for his Eagle Scout project. They were a huge hit. When I saw my doctor on November, they said they went like lightening and wondered if we would make more. I knew Philip was done with it but I really thought he would love to do more. So I said yes of course. In fact, we would do them over the Christmas holiday and bring them in the first part of January. I really did mean that and it sounded so good coming out of my mouth but the reality is it obviously didn't happen. It is March already. I did promptly order the bottles though. 75 of them. And I bought label tags...but have no idea where they went. And then it went in the closet to never been seen again...or at least for a while.
Funny how finding out my cancer is back put this project on the front burner again. Philip and Mom went to one of Mars' clay class the first weekend of March. I decided it was a good catalyst for getting the bottles going with the clay scraps from class. So I set up on my kitchen table. It is completely covered with clay paraphernalia. Last weekend, Philip begrudgingly helped me with rolling the clay and did a few bottles. We got 16 bottled done. But I still have tons more. So last night while Philip's friends were over, I picked one of my favorite Pandora stations on my phone and got to town. I rolled and pressed and texturized and manipulated that clay like no tomorrow. I got the bottle making process down to a science. I turned it into a major clay operations of maximum speed and efficiency. No waste...or wander. I finished 35 bottles!! In full disclosure, I have 9 that still need to bake. But I only have 24 bottles left to do. I felt a huge sense of accomplishment. I am very happy with the progress. I am very hopeful I might get to have my table back by Fall!
Today is homework for Philip and recovery for me. It is sunny today but windy. When I look to the South east, there are dark grey clouds. It might be snowing in the mountains. I'm sorry if you are in snow Mars and John.
So I continue to feel my steps are lighter and more springy. I'm unable to bounce but if I could, it would be very springy. I hope you've found spring in your step as well.
Happy St. Patrick's Day!
Friday, March 15, 2013
And the doctor says???????
At the urging of my boss, I called Dr. L's office today to see if they could help me interpret my PET Scan results. The nurse read it the same I did as it was completely clean without any signs of aggressive growing tumors. Unfortunately, she was not able to answer any questions and could only offer for me to come in to see Dr. L sooner than May. I'm going to go with what we see and not worry about the rest. Yeah, maybe I have small cell growing (PET Scans only show fast growing tumors) but I'm not going to worry about that. I'm going to enjoy the rest of March and all of April and push cancer from my mind (short of watching for symptoms).
My eyebrow is still healing nicely. The scar is still pretty obvious and it is still bruised and swollen but I think it will continue to heal and eventually will disappear. I kind of laughed this week. Dr. S told me to put Neosporin on it each night. So faithfully I grabbed the tube and put it on. It just didn't seem to do much. It was Wednesday night before I realized I was putting Hydrocortisone cream on instead of Neosporin. What a dork. Not nearly as good as Gregg's toothpaste story (which makes me laugh out loud each time I think about it) but still humourous.
So I don't think I have another doctor's appointment until 4/11 and that is with my Neurologist. Won't she be surprised when I tell her what has been going on!!
So you ready for funny? Well it is self depreciating humor, which you know is part of my MO. So I got some new shoes online. I ordered the flattest shoes I could find with a back. I ordered some Aerosole "slides" with a peep toe. The heel is 3/4". I also ordered some strappy Naturalizers with a back strap. Those are about 1" total but the front is about 1/2" so it is about 1/2" lift at the heel. Well I thought I would bust them out this week because it is such nice weather...and I have my daring denim blue nail polish on my toes. So I put on the slides to wear to work Wednesday. I was walking around the house getting stuff ready and I was obviously walking cautiously which looked very funny. So I switched them out for the strappy sandals. Again, could barely walk around. There was no way I felt like I could wear them in the office. I was walking with my arms out and very clunky when I realized....this is how a baby giraffe walks when they are learning to walk! Not so graceful. It was pretty funny. So I dumped them off my feet and put on my old sandals and headed to the office. I'm going to keep working on it. Hopefully I'll be sporting my new shoes next time you see me...without the giraffe walk. You get the picture.
I am so glad it is Girl Scout cookie time because I did enjoy some cookies tonight! Because.....there is always room for cookies!! I hope everyone has a great weekend despite the weather. I know I will!
My eyebrow is still healing nicely. The scar is still pretty obvious and it is still bruised and swollen but I think it will continue to heal and eventually will disappear. I kind of laughed this week. Dr. S told me to put Neosporin on it each night. So faithfully I grabbed the tube and put it on. It just didn't seem to do much. It was Wednesday night before I realized I was putting Hydrocortisone cream on instead of Neosporin. What a dork. Not nearly as good as Gregg's toothpaste story (which makes me laugh out loud each time I think about it) but still humourous.
So I don't think I have another doctor's appointment until 4/11 and that is with my Neurologist. Won't she be surprised when I tell her what has been going on!!
So you ready for funny? Well it is self depreciating humor, which you know is part of my MO. So I got some new shoes online. I ordered the flattest shoes I could find with a back. I ordered some Aerosole "slides" with a peep toe. The heel is 3/4". I also ordered some strappy Naturalizers with a back strap. Those are about 1" total but the front is about 1/2" so it is about 1/2" lift at the heel. Well I thought I would bust them out this week because it is such nice weather...and I have my daring denim blue nail polish on my toes. So I put on the slides to wear to work Wednesday. I was walking around the house getting stuff ready and I was obviously walking cautiously which looked very funny. So I switched them out for the strappy sandals. Again, could barely walk around. There was no way I felt like I could wear them in the office. I was walking with my arms out and very clunky when I realized....this is how a baby giraffe walks when they are learning to walk! Not so graceful. It was pretty funny. So I dumped them off my feet and put on my old sandals and headed to the office. I'm going to keep working on it. Hopefully I'll be sporting my new shoes next time you see me...without the giraffe walk. You get the picture.
I am so glad it is Girl Scout cookie time because I did enjoy some cookies tonight! Because.....there is always room for cookies!! I hope everyone has a great weekend despite the weather. I know I will!
Thursday, March 14, 2013
PET Scan - Not so furry and cuddly
Bright and early this morning, I had my first PET scan ever. I had looked on the web to see what to expect and also talked to one of the lovely ladies in my online support group. I'm really glad I had some idea of what to expect. It was actually a very interesting process.
Prep started yesterday where I was instructed to not do any physical activity. I decided that meant I couldn't do laundry, cook, or do the dishes. Then no food after midnight. I was fine with that since I am not a middle of the night snacker. This morning, I dropped Philip off at school and headed to the hospital. I'm starting to feel comfortable around that hospital again.
I changed my clothes and then went into a dimly lit room. They checked my glucose and put in an IV. Much to my surprise, I had to drink a bottle of glucose contrast. It wasn't the chalky contrast I hate but it was a glucose liquid that they flavor with Lemon Crystal Light. Now I remember why I don't really care for lemonade! But I couldn't just drink it all at once. I had to drink 2 cups quickly and then waited 45 minutes and had to drink 2 more. I could not go to the bathroom during that time. Most interesting is they brought in this metal container of nuclear radioactive agent and promptly put it right in my vein. Am I the only one that thinks it is weird they are suited up for safety and I am sitting there in my gown with it pumping directly into my body???
Well I was told I had to sit as still as possible without moving my arms, legs, fingers or toes. I guess any form of movement will show up as a hot spot...even looking at the clock would show. They gave me a warmed blanket, pushed back the recliner, turned on my ipod for me (that was even too strenuous) and left me for 40 minutes. They came back and had me drink my 2 more cups and then I had to wait 5 minutes before I could go to the bathroom. They told me to go to the bathroom fast and do my best to empty my bladder and bowels. No problem there! Then they took me to the room and the tube.
My head was placed in a stabilizer, a bolster put under my knees, and my arms placed over my head. He told me to get comfortable as I couldn't move one stitch for 45 minutes. The tube wasn't as tight as when I had my MRI and it was mostly silent. You could cross your arms if you really tried but that was about it. I slid in to the top and back out quickly. Then they slid me back in through the top and slowly back out. Then they slide me back in very slowly. They told me that would be the CT Scan. When I got to the top, it stopped again and I came back out very slow....like probably 30 minutes slow. And that was it. My shoulders are surprisingly sore from being over my head but otherwise, I am good.
Interesting though, they took my gauze to dispose of correctly because it was radioactive. I also put my gown in a special container. There was a different bathroom patients use versus the staff. I can't help but wonder if it is safe to pee at home or if I need to burn my clothes tonight in some special incinerator! haha
The good news is I immediately made friends with the nuclear diagnostics guy, John. He was so funny and we laughed the entire time. He came to get me out of the tube and told me with a straight face that the machine malfunctioned and I would need to start over. I laughed and told him fine, but he will have to wait until next week. He was quite disappointed that I wasn't more phased by his joke.
He wouldn't tell me what he saw. He said there are lots of things that light up that aren't cancer. I said "Oh so I did light up like a Christmas Tree". But he laughed and said not necessarily. He did say he could see where I've been giving myself my Methotrexate injections. Isn't that weird it is so sensitive?
So I am back home trying to get my stomach to calm down from the contrast. I'm back to work and trying to not worry about the next step. He did say I was the first patient of the day and thought results will be online later today. He also said it would be 48 hours before Dr. L will have them and could help me understand them. You know I'm going to look. Curiosity killed the cat right? Maybe that isn't a good saying in this case...but it does tie back into the PET subject. Hahaha.
UPDATE - I peeked at my online results. It says: "While not formally interpreted, no hypermetabolic activity identified to suggest a site of active lymphoma." I think that is good news. Says they scanned from mid thigh to my brain. I'll wait to hear from Dr. L but I feel a huge sense of relief for now.
Prep started yesterday where I was instructed to not do any physical activity. I decided that meant I couldn't do laundry, cook, or do the dishes. Then no food after midnight. I was fine with that since I am not a middle of the night snacker. This morning, I dropped Philip off at school and headed to the hospital. I'm starting to feel comfortable around that hospital again.
I changed my clothes and then went into a dimly lit room. They checked my glucose and put in an IV. Much to my surprise, I had to drink a bottle of glucose contrast. It wasn't the chalky contrast I hate but it was a glucose liquid that they flavor with Lemon Crystal Light. Now I remember why I don't really care for lemonade! But I couldn't just drink it all at once. I had to drink 2 cups quickly and then waited 45 minutes and had to drink 2 more. I could not go to the bathroom during that time. Most interesting is they brought in this metal container of nuclear radioactive agent and promptly put it right in my vein. Am I the only one that thinks it is weird they are suited up for safety and I am sitting there in my gown with it pumping directly into my body???
Well I was told I had to sit as still as possible without moving my arms, legs, fingers or toes. I guess any form of movement will show up as a hot spot...even looking at the clock would show. They gave me a warmed blanket, pushed back the recliner, turned on my ipod for me (that was even too strenuous) and left me for 40 minutes. They came back and had me drink my 2 more cups and then I had to wait 5 minutes before I could go to the bathroom. They told me to go to the bathroom fast and do my best to empty my bladder and bowels. No problem there! Then they took me to the room and the tube.
My head was placed in a stabilizer, a bolster put under my knees, and my arms placed over my head. He told me to get comfortable as I couldn't move one stitch for 45 minutes. The tube wasn't as tight as when I had my MRI and it was mostly silent. You could cross your arms if you really tried but that was about it. I slid in to the top and back out quickly. Then they slid me back in through the top and slowly back out. Then they slide me back in very slowly. They told me that would be the CT Scan. When I got to the top, it stopped again and I came back out very slow....like probably 30 minutes slow. And that was it. My shoulders are surprisingly sore from being over my head but otherwise, I am good.
Interesting though, they took my gauze to dispose of correctly because it was radioactive. I also put my gown in a special container. There was a different bathroom patients use versus the staff. I can't help but wonder if it is safe to pee at home or if I need to burn my clothes tonight in some special incinerator! haha
The good news is I immediately made friends with the nuclear diagnostics guy, John. He was so funny and we laughed the entire time. He came to get me out of the tube and told me with a straight face that the machine malfunctioned and I would need to start over. I laughed and told him fine, but he will have to wait until next week. He was quite disappointed that I wasn't more phased by his joke.
He wouldn't tell me what he saw. He said there are lots of things that light up that aren't cancer. I said "Oh so I did light up like a Christmas Tree". But he laughed and said not necessarily. He did say he could see where I've been giving myself my Methotrexate injections. Isn't that weird it is so sensitive?
So I am back home trying to get my stomach to calm down from the contrast. I'm back to work and trying to not worry about the next step. He did say I was the first patient of the day and thought results will be online later today. He also said it would be 48 hours before Dr. L will have them and could help me understand them. You know I'm going to look. Curiosity killed the cat right? Maybe that isn't a good saying in this case...but it does tie back into the PET subject. Hahaha.
UPDATE - I peeked at my online results. It says: "While not formally interpreted, no hypermetabolic activity identified to suggest a site of active lymphoma." I think that is good news. Says they scanned from mid thigh to my brain. I'll wait to hear from Dr. L but I feel a huge sense of relief for now.
Wednesday, March 13, 2013
Level setting
I'm afraid this blog is going to start by talking about my current health struggles. So let's bring everyone up to speed. If you already feel speedy, you can skip this post.
I was first diagnosed with Non Hodgkins Lymphoma September 12, 2003. I learned it was mostly "small cell" grade 1 which means it is slow growing. I had a series of 8 Rituxan treatments which put me in remission for 18 months. At that point, I noticed a lump in my left eyebrow and along my left side of my jaw bone. Again, we did 8 rounds of Rituxan. That did the trick once again.
During those treatments, I found I had weakness that took quite a few years to figure out why. After several miserable tests and tons of doctor appointments, I found out I had Polymyositis. This is a rare auto-immune disease. I begged for help and was so thankful when I was given high dose Prednisone. Not that I wanted the side effects but I was just...that....bad. After Prednisone leveled things off, we added Methotrexate and I started tapering Prednisone. After 5.5 long years I was finally off Prednisone. I still do self injections of Methotrexate weekly. My last dose of Prednisone was 12/10/12.
We knew all along that my medications seemed to be keeping my NHL in remission. Couldn't ask for a better outcome. I had a very long remission of 7 years (compared to the average 18 months).
In January 2013, I noticed a lump in my right eyebrow. A quick trip to my favorite surgeon, and we agreed it didn't act like my other NHL lumps did. We agreed to watch it for 3 weeks. At that point, it was still there so Dr. S suggested we remove it and get it to pathology...just to be safe. I had the surgery 3/1/13.
Much to my surprise, the pathology came back as lymphoma again. However, this time it is aggressive, grade 3. While grade 1 can change to grade 3, my Oncologist, Dr. L doesn't feel like it is acting aggressive so we agreed to do more scans and wait to see what it is going to do. I will see him more often, have more tests, and lump check myself regularly. At any point something seems off, we will get together quickly.
So that is basically what is up with me. I guess we call it officially "Watch and Wait". I remind those newly diagnosed with NHL, that is a valid treatment option if you are comfortable with it. I am comfortable with it. I know I'm not going to treat a damn eyebrow lump with aggressive chemotherapy until they show me I must.
I was first diagnosed with Non Hodgkins Lymphoma September 12, 2003. I learned it was mostly "small cell" grade 1 which means it is slow growing. I had a series of 8 Rituxan treatments which put me in remission for 18 months. At that point, I noticed a lump in my left eyebrow and along my left side of my jaw bone. Again, we did 8 rounds of Rituxan. That did the trick once again.
During those treatments, I found I had weakness that took quite a few years to figure out why. After several miserable tests and tons of doctor appointments, I found out I had Polymyositis. This is a rare auto-immune disease. I begged for help and was so thankful when I was given high dose Prednisone. Not that I wanted the side effects but I was just...that....bad. After Prednisone leveled things off, we added Methotrexate and I started tapering Prednisone. After 5.5 long years I was finally off Prednisone. I still do self injections of Methotrexate weekly. My last dose of Prednisone was 12/10/12.
We knew all along that my medications seemed to be keeping my NHL in remission. Couldn't ask for a better outcome. I had a very long remission of 7 years (compared to the average 18 months).
In January 2013, I noticed a lump in my right eyebrow. A quick trip to my favorite surgeon, and we agreed it didn't act like my other NHL lumps did. We agreed to watch it for 3 weeks. At that point, it was still there so Dr. S suggested we remove it and get it to pathology...just to be safe. I had the surgery 3/1/13.
Much to my surprise, the pathology came back as lymphoma again. However, this time it is aggressive, grade 3. While grade 1 can change to grade 3, my Oncologist, Dr. L doesn't feel like it is acting aggressive so we agreed to do more scans and wait to see what it is going to do. I will see him more often, have more tests, and lump check myself regularly. At any point something seems off, we will get together quickly.
So that is basically what is up with me. I guess we call it officially "Watch and Wait". I remind those newly diagnosed with NHL, that is a valid treatment option if you are comfortable with it. I am comfortable with it. I know I'm not going to treat a damn eyebrow lump with aggressive chemotherapy until they show me I must.
A new blog!
Today I start my blog. The name came from a conversation with my sister, Nola. I simply love it. The primary purpose of my blog is to keep my friends and family posted on my life but you just never know what kind of gems I will share through the journey. Thanks for stopping by.
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