I have loved receiving holiday/end of the year emails and letters from friends and family updating us on their lifes, and while we don't really have much going on, I thought I would write. A quick 2014 price family recap.
Wesley will be turning TWO next week on January 8th. It has been an incredible and crazy two years with this kid. He had so much life in him and I think he is the greatest kid to ever walk the earth :) This year he started having behavior issues, just throwing lots of tantrums and nothing we did seemed to help. After talking to lots of moms who I trusted, and after a particularly long and hard tantrum with lots of bumps and bruises we took him to a behavior specialist. Dr Fields was great and answered all of our questions and gave us a lot of tools to help Wes. We saw a huge improvement in just a few weeks and while he still has tantrums, I feel it is more "normal" for his age. Dr fields said Wes is likely just headed into his 'terrible twos' early and that as he learns more words and more ways to communicate it will continue to subside. Wes has always been an old soul and wants to be older than he is. He has learned lots of new words and ways to communicate his wants and needs with us and is a much happier kid now. He has so much personality and heart. He is so loving! He likes to give lots of hugs and kisses and is truely just a big sweet heart. He loves singing and he is OBSESSED with cars and automobiles. He is a quick leaner and he really enjoys talking. He had chicken pox and croupe and plenty of colds, but otherwise is a healthy little guy.
Chuck is still working for the Logan City Parks department, but hopefully not for much longer! It has been a great job for him over the past 5 years, but we finally figured out that he needs to shift his work and school schedules to get through school a little faster. He has been studying with Weber State University online part time and working full time, and it's time for him to be a full time student and work part time. He has really found his niche in political science and we are confident that with passion about his studies, he will get through school in the next couple of years. We had some health scares with his dad earlier this year and it was a good. Reminder that life is too short not to pursue the things you want. Chuck also had the opportunity to travel to New York to visit his sister Emily and support her on opening night of 'The Last Ship', the broadway musical she is in the orchestra for. He loved New York, the show, and of course getting to see his sister.
As for me, I've enjoying learning how to be a mom and how to balance that with work, being a wife and fitting everything else that needs to get done. I had a slow start to my year because of my cancer diagnosis in November of 2013. The radiation really wiped me out for a few months and chuck really stepped up to take care of me, Wes and literally everything else. It was so sweet to get to see him bond with Wes and watch their relationship grow as he became Wesley's sole caregiver. I would love to tell you I am back up to full speed, but I still get pretty tired sometimes. Mostly I am back to normal and I've been very blessed with lots of love, support, and all good news from tests regarding the cancer. I am still working full time with Rocky Mountain Dermatology as the medical assisting supervisor and around September I was lucky enough to get to switch my schedule around so I can still work full time, but be home more with Wes during his waking hours. I didnt realize how much we both needed that! Spending more time together was actually a little tough at first, but it has been sooo good for our relationship and we are best buds :) My photography business had some big changes with a new website, logo, ect. I got VERY busy with photography towards the end of the year and honestly spread myself a little too thin with trying to take on so many shoots, but id rather have too much work as opposed to not enough work, and ultimately it helped me figure out my limits and set better boundaries.
I went back to Philadelphia with my dad in March for a check up on my eye. The appointment went well and the Doctor said that my cancer was looking good, and that I was developing a cataract, but it probably wouldn't bother me for another couple of years. In April we were feeling a little overwhelmed with so much going on with my cancer diagnosis, my dads cancer diagnosis, Chucks dad was having health issues and had a couple 'mini strokes', school, work, and lots of other stress inducing life events, so we took a spur of the moment trip to Disneyland with two of my siblings, Missy and Christopher, and we had a blast! It was a quick trip, but so fun and so needed! We also had the opportunity to go to Jackson Hole for the weekend in September on a work retreat with Rocky Mountain Dermatology. We did white water rafting on the snake river and enjoyed hiking and canoeing around lake Jenny. Chuck also took me to Tony Grove lake for the first time this past summer and I absolutely fell in love. We took lots of day trips as often as we could and even took the canoe up a couple of times. We camped in Logan and Green canyon a few times and just enjoyed the beautiful outdoors. Another highlight of our year was attending the Banff film festival when it came to USU in February. We both absolutely loved it and we plan to make it a tradition to go each year when possible. It inspired us to spend more time outdoors and be more adventurous.
I hope your 2014 was as good as ours. Heres hoping 2015 will be even better!
Sunday, January 4, 2015
Saturday, July 19, 2014
Confession
I have a confession to make. As much as mean it when I say "Id rather have this droopy, baggy eye and be alive, than have cancer in my eye, or no eye, or even have lost my life" I still sometimes struggle with the cosmetic portion of this dang eye! Sometimes vanity gets the best of me and I find myself wishing I hadnt had raditation (or cancer for that matter) and that my eye still looked normal. I know it doesnt look bad. And really, truely, this is not a post trying to get attention or people to tell me my eye looks fine. I know it looks fine. I just have extra reason to be thinking about this today.
You see, we went to Tony Grove today and took family pictures with my tripod. One of the nice things about being a photographer is that I can update my family pictures as often as I want without having to pay :) So as im going through pictures we took today, I realized my eye was really baggy today. And I found myself having a hard time deciding if I wanted to edit my eye or leave it be. As a photographer and as a human, I believe there is nothing wrong with doing a few touch up edits and wanting to look your best self, especially in pictures that will be around a long time, and act as a reminder of what you looked like in that period of time. Why do we take pictures in the first place? So we can look back later and remember what things/we were like.
I wish that THIS is what I still looked like
with an eye that opens all the way and doesn't have a big dark bag under it
But this is my eye without the magic of photoshop
I guess my issue is really less about a picture of my face, and more about my cancer in general.
I recently had a bit of a scare. I went in for my 6 month post diagnosis check up, blood work and chest x-ray. And there was a small nodule on one of my lungs showing in the chest x-ray. Which really shook me. I was very scared. The lungs are the second most common place for my type of cancer to metastasize to. And metastatic uveal melanoma currently does not have a cure.
I am able to look up my test results on line, so a few hours after my tests were performed, I looked online, and read the report that said they saw a nodule on my lung. And my oncologists office was already closed for the night. So I spent the night running all sorts of different scenarios through my head about if I could beat metastatic melanoma and about dying. Now, I should quickly add, before you all think that im dying, that the next day my doctor ordered another chest x-ray with multiple views, and they did not find anything. So what they 'found' on my first x-ray was just a shadow. But it really took me back to my first few days after diagnosis. I remember feeling really depressed and thinking that even if this cancer doesnt beat me now, im going to spend the rest of my life waiting and wondering if/when the cancer will spread. Technically I will never be considered 'in remission'. They just dont ever count it that way for my type of cancer. And the statistics of 'the general population of uveal melanoma cancer patients' is that FIFTY PERCENT of pts will have a metastatic melanoma sometime in their life. FIFTY PERCENT. Yikes. I was blessed enough to have genetic testing done at the time of my radiation implantation, and my results showed that I am in the lowest risk catagory for metastasis, less than 10%. But man. For those LONG hours when I thought I had something on my lung, all I could think about was that I was going to die. I knew that it could turn out to be nothing, but when you have cancer, its hard for you not to think about that.
Of course I was relieved to know that there was nothing on my lung. But I was still pretty bitter for a few days after the good news. I was upset that I had to even be concerned about metastatic cancer. I was upset that even though I dont have nodules on my lungs, its still a possibility that I could in the future, and that at no point FOR THE REST OF MY LIFE will I not have to worry about these things.
I know A LOT of people have cancer. I am not special in this. But man, it sure sucks :)
Now let me wrap this up nicely for you and end on a happy note. I got over being bitter. I still dont like it, but its fine, and I am fine. I truly am grateful that I am fine. Im grateful that my cancer wasn't worse, and that ALL of my tests so far have (eventually) come back good. Im grateful that the procedure worked so well so fast. I still have cancer in my eye, but I can see the difference, it is getting smaller. I am grateful for all of the love and support people have given me. And believe it or not, im even (sometimes) grateful that I have cancer, baggy eye or not. My grandpa Brown was an amazing man, and even though I was pretty young when he passed away, I learned something really important from him. He always said "I never had a trial a day in my life, only opportunities to learn and grow"
I am grateful for this opportunity to learn and grow.
Tuesday, April 22, 2014
Good news all around
I had an appt with my doctor in Philadelphia last month, and got great news! She said ive had "a beautiful results" from the radiation treatment. She went on to explain that the eye itself has healed well from the surgery and radiation, and that the cancer is responding well to the treatment as well. Initally they said I would have to go back in another 4 months to see the Philly doctor, but she said my cancer has responded so well that I dont need to be seen for another 6 months, and that can be with my Salt Lake doctor, then in another year ill have to go back to Philadelphia. The one not so positive news is that I already have formed a cataract, but she said its small, and I dont see it/notice it yet, and I dont need to have it removed until it becomes bothersome, probably in the next 5 years.
For the most part my vision has stayed the same. Using both eyes I really dont see a difference, but occasionally, out of curiosity, ill just use my right eye and I can tell ive had a little vision loss. My eye is dry from the radiation, and so to compensate, my eye produces more mucus, and sometimes I think the blury vision is just from that.
Ive been pleased with my cosmetic result. Obviously the cosmetic side of my cancer was the least of my concerns, but im happy with it regardless. They said I may be left with a droopy eye lid. Its certain better than it was a few months ago, but I think the slight droop and exaggerated 'under eye bag' I have now is probably what ill be left with. Most people say they dont notice it, but I think they are just being nice :) The right eye lid comes down lower than the left eye lid, and I have a slight bag under that eye all the time, and its especially noticeable when I get tired, or smile. This pictures shows it pretty well.
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For the most part my vision has stayed the same. Using both eyes I really dont see a difference, but occasionally, out of curiosity, ill just use my right eye and I can tell ive had a little vision loss. My eye is dry from the radiation, and so to compensate, my eye produces more mucus, and sometimes I think the blury vision is just from that.
Ive been pleased with my cosmetic result. Obviously the cosmetic side of my cancer was the least of my concerns, but im happy with it regardless. They said I may be left with a droopy eye lid. Its certain better than it was a few months ago, but I think the slight droop and exaggerated 'under eye bag' I have now is probably what ill be left with. Most people say they dont notice it, but I think they are just being nice :) The right eye lid comes down lower than the left eye lid, and I have a slight bag under that eye all the time, and its especially noticeable when I get tired, or smile. This pictures shows it pretty well.
Im not trying to be vain, I know its not terrible. When they told me I could be left with a permanent droop, I pictured much worse, and im just trying to be greatful that its not what I had pictured.
While im sharing positive news - ill give an update on my dad. Like I said in my last post he was diagnosed with aggressive stage 4 prostate just a month after my diagnosis. Well he (finally) got some good news. His PSA had been really high, 26.4 six weeks after having his prostate removed, but his most recent check showed the treatment he is on is working and his PSA is now at .34 WHICH IS AWESOME! They really havent ever been sure of his prognosis, and they still arent sure (especially considering they found it in the lymph nodes, so they know it has spread) but the fact that the treatment is doing this well this fast is amazing. Miracles do happen people.
On a less cancer related note:
6 weeks ago we put in an offer on a little town home. Its small, not new, not fancy, but its on short sale so its a great price and could turn out to be a great investment for us in the future. Short sales notoriously take forever, but they said its a small place, and the bank they are working with is good to work with on short sales, so they said 4-6 weeks before they would respond to our offer. Well, at the 5 week mark, I just couldnt stand myself so I called our agent to see if she had any news. She said the sellers still had the offer, and had one more piece of paperwork to submit before our offer even goes to the bank. And once it goes to the bank - thats when the 4-6 week estimated waiting period will start. AGH! So hopefully in 4-6 weeks they will accept our offer and then we have a regular 30 day waiting period after that. Luckily we still live with my cousin, so we dont have any rush to move. So we will wait patiently for (another) 4-6 weeks.
Sunday, February 9, 2014
I haven't been great at sharing my cancer news, but I've had a lot going on with the holidays and family. In December I met with an oncologist who had me do a chest x ray, ct scan and blood work. Good news is that everything came back clear, my cancer hasn't spread! We will check again in another 6 months. And just last week I had an appointment with my eye doc in salt lake and he said the cancer is looking smaller and my eye is looking healthy. He talked a little more about some of the possible side effects that I might experience in the future as a result of the radiation: cataracts, vision issues, leaky blood vessels at the back of the eye, ect. But we will cross that bridge when and if we get there.
I really wanted to share the good news last week, but that same day I got some other news about my dad that was a little hard to handle. Just before Christmas my dad had a biopsy on his prostate and on Christmas eve we got the news that he has a very very aggressive and serious prostate cancer. Usually prostate cancer isn't a big deal, but my dads is very aggressive. January 24 he had the prostate removed and some lymph node biopsies. Last week we got the news that they found the cancer in some of the lymph nodes, which means it's spread and it means the cancer is a stage 4. We aren't sure of the prognosis yet but they are going to be aggressive with his treatment. Prayers are welcome for him and for the fam. Two cancer diagnoses so close together has been hard on the family, but we are all doing well considering.
My eye is doing pretty well. It's still a little swollen and a little droopy. It's not hugely noticeable and of course I'd rather have a droopy eyelid than have cancer, or no eye at all. My eyes get pretty sensitive to the light still and I have trouble keeping my eyes open while driving (too bright, especially with all the snow), which is obviously dangerous so I get rides as often as I can and wear sunglasses when I have to drive. Over the last week this has actually gotten much better. For about a month after the surgery I would get terrible headaches. Those have much improved though. My energy level is much better, but I crash hard at the end of the day or if I over do it.
My Wesley turned one last month! I shared some picture on Facebook. We had a party at Chuck e cheese for Wes, my brother Brent and my dad, who all have January birthdays. Then on Wesley's actual birthday we got a small cake for Wes and let him devour it. He did great at destroying the cake. He has 12 teeth now, walks like a pro, says mom, dad, hi, hello, I love you, thank you, uh oh, and has lots of silly sounds and 'phrases' he likes to say, like "elow" and "lowdee" and he likes to yell and sing.
Charles has been a champ through all of this. He has taken care of Wes and I and hasn't complained once. The poor guy has had so much on his plate. His dad had some health issues recently, my cancer diagnosis, my dad's cancer diagnosis, and doing online classes through weber state all while taking care of a sick wife and being a great dad to our little guy. I admire his strength and love him dearly. Maybe one day I'll get around to posting pictures of everything.
Saturday, November 30, 2013
Since the diagnosis
We are home from Philly now and I've been so surprised at all the people ive ran into who keep telling me that they keep looking to my facebook and blog for updates. So here we are again, blogging, which is pretty uncommon for me. But you've got to give the people what they want, right? :) Not to mention I don't keep a journal, so this is a good record keeping for me too.
So after my diagnosis on Monday the 18th, we spent tuesday and wednesday being tourists. To be honest, I spent half the day Tuesday in bed, feeling depressed and sorry for myself. I know how important it is to stay strong, because this is going to be a long journey, but I NEEDED to process and feel the things I was feeling, good bad, weak, strong. Self pity is not a good thing, but im glad I had that half day to feel weak, because I think it will help me to stay strong in the long run. So then I shook it off and spent Tuesday afternoon at the independence hall visitors center and the constitution center where they had an exhibit with pulitzer price winning photographs over the years. Very sad, but very cool. That night back at the hotel an old friend from high school, Heidi Norton, facebook messaged me. She is living in Philly for grad school and we made plans to go to the Muetter museum the next day. So thats what we did Wednesday. The museum had oddities and curiosities of the human body. Very cool, and it was fun to see Heidi. She took us to one of her favorite burger and shake joints in Philly.
I have to applaude Charlie for figuring out the train system. We tried monday, and it was a disaster, but he figured it out for tuesday and wednesday and it saved us a lot of money on cabs and was fun to ride the trains.
My dad was sweet enough after my diagnosis to ask if i wanted my mom out there with us. Of course I did. I dont think anyone would ever say no to having their mom with them for something hard like this. So he booked her a flight with the help of a buddy pass from Jenny and Will and she got there about midnight on wednesday. I was still awake so I showed her all the paperwork and packets they had given me on melanoma and the surgery. I dont remember what time we finally went to bed, but it was late.
We got up early the next morning to be at the hospital by 6:30. After some waiting, paperwork and registration they took me back to a room where Dr. Carol Shields came in and marked my forehead to ensure they treated the right eye. They we went back into a crazy busy room where they had probably 8 patients or so, all prepping for surgery, separated by curtains. I changed into a gown and they started prepping me with eye drops, IVs, ect. The nurse had a hard time finding a good vein in my hand and ended up spraying me and the bed with my blood. I remember being wheeled into the surgery room and them putting something in my IV. They had previously told us they would use 'twilight sleep' for sedation, which is just a chemical that doesnt put you out, but makes you unaware of whats going on, but afterwards they said it wasn't working well enough on me, so they put me under general anesthesia. In the paperwork about the needle aspiration biopsy it says that in some situations, they cant get a good biopsy, but they dont know until they try, and sometimes they end up not doing it. No one talked to us about how the surgery went, so I assume they did the biopsy, but I don't really know :) They also placed the metal plauqe with the radioactive 'seeds' and sewed it to my eye ball, then sewed my eyelid shut. I woke up with a wicked sore throat but felt pretty good initially. After just a few minutes my eye started really bothering me, so they gave me pain meds through the IV and once the pain was under better control they sent us on our way. I had a HUGE patch that covered a 3rd of my face and included a lead patch to keep everyone else safe from the radiation.
They require all their patients to stay at the hilton, because its so close and they have made arrangements with them, so we waited for the hilton shuttle. Because I had been under general anesthesia I was still pretty out of it and I really dont remember much, but once we got to the hotel the room wasnt ready so we waited in the hotel lobby and i slept while Charlie and my mom did who knows what.
From thursday to monday I don't have a lot of memories, I just slept most of the time. Chuck tells me I slept probably 20 hours a day. I was on some heavy duty meds, so I wasnt too uncomfortable. Im told that I apparently called a few friends while Chuck and my mom were downstairs getting food at one point and left some people some funny voicemails :)
Thursday morning we went back to the hosptital for them to take the plaque off. They tried the 'twilight sleep' on me again and apparently it worked well this time. I do have one memory of being aware of what they were doing during the surgery and kind of cringing, but then shortly after I lost my 'awareness', so I assume they just added more meds. I also woke up with my hand tied to the bed, so im sure I was giving them trouble during the surgery. My patch was much smaller after this surgery. We then went and scheduled a follow visit in 4 months, and got discharge instructions. Here are the basics:
-Im supposed to wear glasses instead of contacts from now on. I clarified if this was specific to cancer patients, or a general rule, and they said a general rule, because its just safer for the eye, and I can still wear my contacts for 'special occasions'
-I need a 2 month follow up with my eye docs in Ut, a 4 month follow up and an 8 month follow up in Philly, then approximately every 2 years in philly as well.
-No driving and no heavy lifting for a week or so (baby included, even though ive been lifting him anyways because how can you say no to him :)
-No makeup on that eye for 2 weeks
-The eye will take about a month to look and feel back to (about) normal, but I could be left with a little bit of a 'droopy eye' effect
- I need to find and get in with an oncologist here in Ut. For what in honestly not sure, they already gave me all the follow up info on screenings and what not, but I dont need to do that for like 4 months. So im not sure what im supposed to see the oncologist for now.
-I have an eye drop and an ointment that I will be using for 6 weeks.
Thats really all I can remember right now.
We stayed one more night in philly and flew home early tuesday morning. I could not wait to get home to my Wesley. I cried like a baby when I saw him and got to hold him. When he saw Chuck and I he just stared for a minute, like 'you guys still exist?' but was very happy to see us and gave me the biggest hug, he did not want to let go, but I needed to use the restroom, so I handed him to Chuck and he started screaming. Im sure it is so confusing to him as a 10 month old for mom and dad to be gone for a week. He was definately acting out the first two or three days after we got home, but now he is doing much better now and has been sooooo cuddly and happy. We dont have to be holding him, but if we leave the room he lets us know it is NOT ok. For the most part he has left my patch/glasses/eye alone.
The eye itself has been surprisingly ok. Its pretty beat up. I thought about posting a picture, but its pretty grusome. Luckily you dont really get the full effect by looking at the eye from a normal distance. But upclose and personal its pretty rough looking. It hasnt been too painful, but I am still taking pain meds about once a day. Its swollen and weepy, and I feel like im constantly wiping my eye, which is getting really obnoxious. It has been kind of hard to keep open, but if I keep the right eye closed, my left eye gets pretty tired, so im trying to keep both eyes open. My vision in the right eye is improving fairly quickly, but I still cant see well enough to use it properly.
I am still very fatigued and occasionally break out in cold sweats. Most of the time I can be up and going, but I get hit by waves of exhaustion and I just need to lay in bed for a few hours each day. I learned my lession yesterday when I just broke down in tears from being too overwhelmed and trying to do too much. I need to learn to pace myself and slow down because my body is still healing. Luckily I don't have to go back to work for a few more days, im hoping ill be up to a full day of work. Ive already talked to them and they will have me at a desk job for a month or so instead of the much busier MA position I usually do.
Again, ive been completely and uterly blown away by the kindness and generosity of people. We had help with Wes, meals, laundry, cleaning our house, financial donations, support through social media, and an outpouring of love and prayers. I feel your support and I still need it so much. Ive never been good about 'staying down' after a surgery or an illness, and im not good at 'pacing myself', I always try to just dive back in head first, but my body is definitely telling me this time I wont be able to do that, so keep sending prayers my way. Thank you for all your love and support :) I dont have any pictures to post right now, ill have to get some from Charlie and add them later.
So after my diagnosis on Monday the 18th, we spent tuesday and wednesday being tourists. To be honest, I spent half the day Tuesday in bed, feeling depressed and sorry for myself. I know how important it is to stay strong, because this is going to be a long journey, but I NEEDED to process and feel the things I was feeling, good bad, weak, strong. Self pity is not a good thing, but im glad I had that half day to feel weak, because I think it will help me to stay strong in the long run. So then I shook it off and spent Tuesday afternoon at the independence hall visitors center and the constitution center where they had an exhibit with pulitzer price winning photographs over the years. Very sad, but very cool. That night back at the hotel an old friend from high school, Heidi Norton, facebook messaged me. She is living in Philly for grad school and we made plans to go to the Muetter museum the next day. So thats what we did Wednesday. The museum had oddities and curiosities of the human body. Very cool, and it was fun to see Heidi. She took us to one of her favorite burger and shake joints in Philly.
I have to applaude Charlie for figuring out the train system. We tried monday, and it was a disaster, but he figured it out for tuesday and wednesday and it saved us a lot of money on cabs and was fun to ride the trains.
My dad was sweet enough after my diagnosis to ask if i wanted my mom out there with us. Of course I did. I dont think anyone would ever say no to having their mom with them for something hard like this. So he booked her a flight with the help of a buddy pass from Jenny and Will and she got there about midnight on wednesday. I was still awake so I showed her all the paperwork and packets they had given me on melanoma and the surgery. I dont remember what time we finally went to bed, but it was late.
We got up early the next morning to be at the hospital by 6:30. After some waiting, paperwork and registration they took me back to a room where Dr. Carol Shields came in and marked my forehead to ensure they treated the right eye. They we went back into a crazy busy room where they had probably 8 patients or so, all prepping for surgery, separated by curtains. I changed into a gown and they started prepping me with eye drops, IVs, ect. The nurse had a hard time finding a good vein in my hand and ended up spraying me and the bed with my blood. I remember being wheeled into the surgery room and them putting something in my IV. They had previously told us they would use 'twilight sleep' for sedation, which is just a chemical that doesnt put you out, but makes you unaware of whats going on, but afterwards they said it wasn't working well enough on me, so they put me under general anesthesia. In the paperwork about the needle aspiration biopsy it says that in some situations, they cant get a good biopsy, but they dont know until they try, and sometimes they end up not doing it. No one talked to us about how the surgery went, so I assume they did the biopsy, but I don't really know :) They also placed the metal plauqe with the radioactive 'seeds' and sewed it to my eye ball, then sewed my eyelid shut. I woke up with a wicked sore throat but felt pretty good initially. After just a few minutes my eye started really bothering me, so they gave me pain meds through the IV and once the pain was under better control they sent us on our way. I had a HUGE patch that covered a 3rd of my face and included a lead patch to keep everyone else safe from the radiation.
They require all their patients to stay at the hilton, because its so close and they have made arrangements with them, so we waited for the hilton shuttle. Because I had been under general anesthesia I was still pretty out of it and I really dont remember much, but once we got to the hotel the room wasnt ready so we waited in the hotel lobby and i slept while Charlie and my mom did who knows what.
From thursday to monday I don't have a lot of memories, I just slept most of the time. Chuck tells me I slept probably 20 hours a day. I was on some heavy duty meds, so I wasnt too uncomfortable. Im told that I apparently called a few friends while Chuck and my mom were downstairs getting food at one point and left some people some funny voicemails :)
Thursday morning we went back to the hosptital for them to take the plaque off. They tried the 'twilight sleep' on me again and apparently it worked well this time. I do have one memory of being aware of what they were doing during the surgery and kind of cringing, but then shortly after I lost my 'awareness', so I assume they just added more meds. I also woke up with my hand tied to the bed, so im sure I was giving them trouble during the surgery. My patch was much smaller after this surgery. We then went and scheduled a follow visit in 4 months, and got discharge instructions. Here are the basics:
-Im supposed to wear glasses instead of contacts from now on. I clarified if this was specific to cancer patients, or a general rule, and they said a general rule, because its just safer for the eye, and I can still wear my contacts for 'special occasions'
-I need a 2 month follow up with my eye docs in Ut, a 4 month follow up and an 8 month follow up in Philly, then approximately every 2 years in philly as well.
-No driving and no heavy lifting for a week or so (baby included, even though ive been lifting him anyways because how can you say no to him :)
-No makeup on that eye for 2 weeks
-The eye will take about a month to look and feel back to (about) normal, but I could be left with a little bit of a 'droopy eye' effect
- I need to find and get in with an oncologist here in Ut. For what in honestly not sure, they already gave me all the follow up info on screenings and what not, but I dont need to do that for like 4 months. So im not sure what im supposed to see the oncologist for now.
-I have an eye drop and an ointment that I will be using for 6 weeks.
Thats really all I can remember right now.
We stayed one more night in philly and flew home early tuesday morning. I could not wait to get home to my Wesley. I cried like a baby when I saw him and got to hold him. When he saw Chuck and I he just stared for a minute, like 'you guys still exist?' but was very happy to see us and gave me the biggest hug, he did not want to let go, but I needed to use the restroom, so I handed him to Chuck and he started screaming. Im sure it is so confusing to him as a 10 month old for mom and dad to be gone for a week. He was definately acting out the first two or three days after we got home, but now he is doing much better now and has been sooooo cuddly and happy. We dont have to be holding him, but if we leave the room he lets us know it is NOT ok. For the most part he has left my patch/glasses/eye alone.
The eye itself has been surprisingly ok. Its pretty beat up. I thought about posting a picture, but its pretty grusome. Luckily you dont really get the full effect by looking at the eye from a normal distance. But upclose and personal its pretty rough looking. It hasnt been too painful, but I am still taking pain meds about once a day. Its swollen and weepy, and I feel like im constantly wiping my eye, which is getting really obnoxious. It has been kind of hard to keep open, but if I keep the right eye closed, my left eye gets pretty tired, so im trying to keep both eyes open. My vision in the right eye is improving fairly quickly, but I still cant see well enough to use it properly.
I am still very fatigued and occasionally break out in cold sweats. Most of the time I can be up and going, but I get hit by waves of exhaustion and I just need to lay in bed for a few hours each day. I learned my lession yesterday when I just broke down in tears from being too overwhelmed and trying to do too much. I need to learn to pace myself and slow down because my body is still healing. Luckily I don't have to go back to work for a few more days, im hoping ill be up to a full day of work. Ive already talked to them and they will have me at a desk job for a month or so instead of the much busier MA position I usually do.
Again, ive been completely and uterly blown away by the kindness and generosity of people. We had help with Wes, meals, laundry, cleaning our house, financial donations, support through social media, and an outpouring of love and prayers. I feel your support and I still need it so much. Ive never been good about 'staying down' after a surgery or an illness, and im not good at 'pacing myself', I always try to just dive back in head first, but my body is definitely telling me this time I wont be able to do that, so keep sending prayers my way. Thank you for all your love and support :) I dont have any pictures to post right now, ill have to get some from Charlie and add them later.
Monday, November 18, 2013
November 18
Yesterday I was diagnosed with a cancer called an amelonotic uveal melanoma in my right iris. Amelonotic describes the color (or lack thereof), uveal describes the part of the eye it's in (the front part, including the iris, which is where mine is) and melanoma is cancer of the melanocytes, which are your pigment producing cells. Here it is.
I'm really not an overly private person, and I really don't mind taking about it and sharing, but I've already had so many questions from people that I wanted to just get this written down so people can read it. I also wanted to record my thoughts and feelings about this day for my own record, so ill probably give more details than needed, but it's for my benefit, not yours :)
I want to start at the beginning.
When I was (probably) 8 we noticed a small speck of color in my eye. We had a doc check it out and they said it was just a speck of pigment, a freckle. So we didn't pay any attention to it until 2009 when I had an eye infection and went in to the first eye doc who could see me, I think it way Dr Parry at Logan regional. As he did his exam he noticed the spot in my right iris and asked if I knew I had a lesion in my eye. That's when I remembered the spot from before, and my mom and I both SWORE it was just a speck before, but was much larger now. He said it was pretty raised (within the eye) and vascular (had a good blood supply) and he wanted me to go to the specialists in Salt Lake. He set up an appointment with Dr Mifflin in salt lake, who said he didn't know what it was but wanted to send me to grand rounds. Grand rounds is where a bounch of top docs and med students in a specific field get together and present interesting/ hard cases. I did grand rounds, which was basically just a lot of people looking at my eye, and some pictures of my eye, and all the docs put their heads together to decide they didn't know what it was for sure and wanted me to go see the shields in philadelphia.
Doctors Jerry and Carol shields are THE WORLD specialists for eye tumors and cancers. So in Februrary (I think) 2009 my parents and I went and saw the shields. They said that because of the good blood supply it was too risky to remove or biopsy the tumor. They also said that even though my mom and I were POSITIVE that it had grown since we first noticed it when I was 8, that most people who SWEAR that lesions like this have grown, are mistaken, and further observation doesn't show any growth or need for removal. They admitted that they didn't know for sure that it wasn't cancer, but they felt confident that it was just a mole and that close monitoring every 6 months should be sufficient. For a few years I was a good little patient and went every 6 months, with everything looking fine and honestly I just got sick of being poked and prodded, so I skipped a few follow ups. Then in April of 2012 my tumor started bleeding. At first we didn't know why, and the salt lake docs wanted me to do grand rounds again. A few days later I found out I was pregnant with Wes and we all breathed a sigh of relief, as that had to be the cause of the bleeding. I went to grand rounds anyways, and got the same advise. We don't know what it is, the bleeding was probably from the pregnancy, come back for follow up after you have the baby.
My eye bled 2 more times during the pregnancy, and the last time it formed a blood clot and was very painful and took several days to resolve. I really was so sick of the dumb thing. I had Wes January 2013, then we sold our house and moved, life as a new parent was crazy, I went back to work. I kept finding reasons not to have the follow up that I was supposed to have after the baby was born. And honestly I didn't feel the need. They were just going to say the same thing- we don't know what it is, it's probably fine, keep watching it and following up. I started getting headaches that started RIGHT behind that eye, which scared me enough into scheduling the follow up in August. And what do you know. They said my tumor wouldn't cause headaches, they didn't know what it was, and that the longer we went without significant change in the lesion, the more likely it was just a normal, harmless mole, keep monitoring it. At this point I was so sick of the dumb thing, and my deductible was met from having the baby, so I asked the doc if I could just have it removed. He said he would recommend having it removed by the sheilds in Philly if I wanted it out, so he would do an email consult to see what they thought about removing it. That was August, and by October I hadn't heard back about the email consult, and I lost my desire to have it removed. It just didn't seem worth it. I really was set on just leaving it alone. But out of no where I had a strong sense to follow up on that dumb email consult. Dr mifflins office said there had been confusion, but they would email the sheilds again, but in the meantime they recommended a consult with Dr Mifflin in salt lake. I went to the consult confident again that I wanted it removed, but he reminded me of all the risks of the surgery. I was pretty confident now that I didn't want it out, but felt like I should go to Philly anyways. I prayed about it and got some weird mixed feelings about it, but still had a feeling I needed to go, so we booked an appointment and decided to go to go to the temple and pray for clarity. Chuck and I both felt clear as day that we were supposed to go to Philly. The temple was the only time I felt good and clear that I was supposed to go to Philly.
So we set up a baby up sitter for Wes and flew out on the 17th. We had some issues with flights and the hotel, but we got about 4 hours of sleep and went to the appointment at 7 int the morning. The Sheilds were not in the office today, so my appointment was with their associate, Dr Lally. She came in and evaluated my eye, then sent me for pictures. I had photographs, scans, and another type of photograph done. Then went back to the exam room and Dr Lally quickly came back in and showed me today's picture right next to a picture from 2009. It was obvious it had grown. She pointed out that the tumor was still taking up the same amount of 'clock hours', aprox 3 clock hours, but that the nodule had clearly grown outward toward the cornea. She said she wanted to grab Dr armond, and that we would probably talk about surgically removing it placing a radioactive device, then she left.
She didn't say at that point that it was cancer, but that's when I knew. From my work as a medical assistant for a dermatologist I knew that it growing was not good, and she had said radiation, which to me meant cancer. I really wanted to turn to Chuck and make sure he knew what she hadn't said yet. But I don't think I was ready to say it. I wanted to be wrong. So I text my parents that it had grown and we were going to talk about surgery or radiation. My mom also works for a dermatologist, so I think I wanted her to say it and validate my interpretation. We waited probably 45 minutes for Dr armond. It felt like forever. He quickly spoke with Dr Lally in the hall and sent me for an ultrasound. The ultrasound took forever. Then waiting for Dr Lally took forever. She came in and started grabbing packets from the wall that i had previously looked at and knew the title of the packet was "malignant melanoma of the eye, winning the battle for life and sight" but she still hadn't said it. She sat down and said "now with melanomas of the eye...." but she still hadn't said it. She hadn't said that I had melanoma. And I needed to hear her say it before it could be real. So I asked if they thought it was a melanoma, and she said yes. It was an amelonotic uveal melanoma. I work in dermatology and have a family history of skin melanoma, so I am fairly familiar with the dx in terms of skin, and it's not good news. My first question was "do you need to do a biopsy for a definitive diagnosis?"Aka are you sure? she said that with an ocular melanoma they are very distinctive, and with the history of bleeding and growth, she didn't need to do a biopsy, it was a melanoma. She talked to me for another.. 5minutes? 20 minutes? I have no idea. She said some statistics. 10% something. 50%something. Genetic testing something. Oncologist something. Surgery to insert a plaque radiation something on Thursday. I was listening to what she said, I just wasn't hearing what she was saying. The only part I can repeat from Dr lally is that there isn't a known genetic correlation and that Wes isn't at higher risk for this because of me. And that my moms skin melanoma had nothing to do with my uveal melanoma. and she kept talking but I didn't hear it. Melanoma. Cancer. Me. Radiation? Am I gonna die? Will my son remember me? Will chuck be ok? Wait. Your not listening to what she's saying. Try to listen. Something about chest x-rays and the liver and now you can go schedule treatment for Thursday. I was shocked. Even though I knew for a few hours before she said it, I was shocked. And silently sobbing and shaking.
They had us wait in a hallway for the surgical coordinator. I sat by chuck And just cried. He got me more tissues and I just cried. Then I decided I needed to tell my family so I started making calls. I talked to my dad first and he got choked up, which made me cry more. Then I talked to my mom, and she got choked up, which made me cry more. A n d she offered some words of advice, as she had gotten her melanoma diagnosis about the same age that I am now. Which is 24, too young for cancer. Someone should tell melanoma that 24 is too young. And they obviously both had questions that i didnt know the answers to because i couldn't listen to Dr. Lally. There was a lady sitting by us as i called and told my paremts, and when it was her turn to leave she expressed sincere empathy and said she would be praying for me. That was very touching. And made me cry worse :)
But after another enormously long wait I went in to the scheduler who was so sweet and patient as I had no idea what i was doing and she answered all my questions that Dr Lally had just answered. She said I needed a physical before they would let me have surgery, so she finished explaining everything, and I did a quick physical with Dr Lally, then I FINALLY got to leave. We were there for 7 hours. And my eyes had been numbed, dilated, photographed, scanned, photographed again with a crazy lense they suctioned to my eye, then ultrasound, more numbing drops, more rinsing drops, more dilating drops, plus crying a lot, and I was just ready to go home. But I knew if I I went back to the hotel I would just lay in bed and cry and freak myself out. So we walked around Philly and found a park. I then called the rest of my siblings and a few close friends to give them the news, and chuck called his side of the family. That was good to talk to them. But it also made me cry more :) I realized something in the park that I think is really cool, that I will share a part of. In my religion we get patriarchal blessings. I got mine when I was 20. It says clear as day in my blessing that there are parts of this blessing that will preserve my life. I always found that so weird and poured over my blessing to see what could possibly save my life. What I realized is that my blessing counseled me to always be in tune with the spirit and that the temple should be a special place for me. And I realized that I had had so much doubt and turmoil about coming to Philly. Honestly I DID NOT want to go. Too much time, money, effort, I didn't want to leave my baby, ect. And the temple was the only place I got a clear, calm answer that I needed to come. So we came. And I was disgnosed with a cancer that could kill me if I had waited too long. And if I hadn't come, I beleive the doctors in salt lake would have kept telling me it was fine. Side note- I have no ill feelings toward any of the doctors that previously told me it was fine. I beleive they used the info they had at the time to make a recommendations to me that they thought were best. And Dr Lally said she feels confident the lesion was only a mole when I was there last in 2009, and that it made the change to cancer sometime in between my 2 visits. For a minute I thought, well then we should have just removed it before it ever had the chance to change to cancer. But I don't see any point in being mad about the past. It doesn't change my situation now. We spent the rest of the day thinking we were funny as we cracked cancer jokes and walked around independence hall and the liberty bell center. We tried to take a subway back to our hotel, but we didn't know what we were doing and I was loosing patience, so we tried to take the bus, and same thing. Really. We don't know how cities work. So we just took a cab. To the wrong hotel. Why would Marriott name two hotels so close in proximity something so close in name? Anyways we finally got to the hotel. Like I said this is all the details for my own record. Now here is the info I'm sure you guys are actually interested in.
According to the packet of info Dr Lally gave me , Uveal melanoma is rare, but still the most common type of adult eye cancer. Less than 10% of patients have a metastatic tumor somewhere else, meaning the cancer has spread. The treatment they are recommending is called plaque radiotherapy. During surgery on Thursday they will sew in place a small radioactive plaque over the eye, then sew my eye lid shut. If I choose to, they will also do a needle aspiration biopsy which will take 2 months to get results on, and will be used for genetic testing to indicate how aggressive my cancer is, and what my risk level is for the cancer metastasizing. Sounds great, but the biopsy can cause side effects and it is pretty pricey. I have to decide by Wednesday if I want this done. Then when I wake up from surgery I'll be in pain, anxious from the discomfort of the plaque, and naseauos, they will drug me up and send me to a specific hospital that I have to stay at, I don't have a choice, 2 minutes away where I have to stay til Monday. I'll be wearing a lead eye patch, so those around me won't be getting radiation. Chuck can stay in the same room, he just can't sleep on the same bed. They also mentioned that the amount of radiation the rest of my body will get will be equivalent to a chest x-ray and there should be no side effects. Chuck can come and go as he pleases, but I'll be drugged and won't be allowed to leave the room. Then Monday they will surgically remove the plaque and I can go home! I can still have vision issues after the surgery including eye swelling, vision loss, double vision, ect.
Over the next 3-6 months the tumor should shrink and I should just be left with a scar. Like I said earlier only 10% metastasize, but when they do they usually got to the liver and lungs, so I'll need chest x rays, lab work, physicals and liver imaging (ultrasound, ct, MRI) twice a year for the rest of my life.
The treatment they are doing has a 98% efficacy rate. But if it doesn't work, they would either do it again, or remove the eye. I'll have to come back to Philly in another 3-4 months for follow up, and
probably once every two years for the rest of my life.
Those are all the statistics I can remember right now. If I missed anything I'll add it later.
I'm already feeling blessed and humbled. People have offered prayers, fasts, dinners when I get home, and putting my name on the temple prayer rolls. Not to mention the wonderful people who are watching Wesley. Thank you to Kira, Scott, Jenny and will for taking Wes. Thanks to Wynn and Lois for taking our dog Sonny. Thanks to my mom and dad for helping with the flights and hotel. Thank you to that sweet stranger who was the first to offer prayers on my behalf, and anyone else who has bowed their head to ask heavenly father to help me be ok and to stay strong.. Thank you to everyone who made it possible for Chuck to be here with me. We didn't think he could come. I'm so glad he did. I need him here. I can't imagine having to make that phone call to him, I'm greatfull he was with me. I'm greatfull for modern medicine and for the doctors who have helped me. I'm thankful that the lord knows better than me and helped me decide to come, and provided people and ways for us to be here. Thank you thank you thank you. With each prayer I say, I begin by saying "thank you for this day" and I will feel that so strongly tonight. Thank you for this day that opened my eyes to the cancer within my body. Thank you for each day that I get to spend on this earth.
I'm really not an overly private person, and I really don't mind taking about it and sharing, but I've already had so many questions from people that I wanted to just get this written down so people can read it. I also wanted to record my thoughts and feelings about this day for my own record, so ill probably give more details than needed, but it's for my benefit, not yours :)
I want to start at the beginning.
When I was (probably) 8 we noticed a small speck of color in my eye. We had a doc check it out and they said it was just a speck of pigment, a freckle. So we didn't pay any attention to it until 2009 when I had an eye infection and went in to the first eye doc who could see me, I think it way Dr Parry at Logan regional. As he did his exam he noticed the spot in my right iris and asked if I knew I had a lesion in my eye. That's when I remembered the spot from before, and my mom and I both SWORE it was just a speck before, but was much larger now. He said it was pretty raised (within the eye) and vascular (had a good blood supply) and he wanted me to go to the specialists in Salt Lake. He set up an appointment with Dr Mifflin in salt lake, who said he didn't know what it was but wanted to send me to grand rounds. Grand rounds is where a bounch of top docs and med students in a specific field get together and present interesting/ hard cases. I did grand rounds, which was basically just a lot of people looking at my eye, and some pictures of my eye, and all the docs put their heads together to decide they didn't know what it was for sure and wanted me to go see the shields in philadelphia.
Doctors Jerry and Carol shields are THE WORLD specialists for eye tumors and cancers. So in Februrary (I think) 2009 my parents and I went and saw the shields. They said that because of the good blood supply it was too risky to remove or biopsy the tumor. They also said that even though my mom and I were POSITIVE that it had grown since we first noticed it when I was 8, that most people who SWEAR that lesions like this have grown, are mistaken, and further observation doesn't show any growth or need for removal. They admitted that they didn't know for sure that it wasn't cancer, but they felt confident that it was just a mole and that close monitoring every 6 months should be sufficient. For a few years I was a good little patient and went every 6 months, with everything looking fine and honestly I just got sick of being poked and prodded, so I skipped a few follow ups. Then in April of 2012 my tumor started bleeding. At first we didn't know why, and the salt lake docs wanted me to do grand rounds again. A few days later I found out I was pregnant with Wes and we all breathed a sigh of relief, as that had to be the cause of the bleeding. I went to grand rounds anyways, and got the same advise. We don't know what it is, the bleeding was probably from the pregnancy, come back for follow up after you have the baby.
My eye bled 2 more times during the pregnancy, and the last time it formed a blood clot and was very painful and took several days to resolve. I really was so sick of the dumb thing. I had Wes January 2013, then we sold our house and moved, life as a new parent was crazy, I went back to work. I kept finding reasons not to have the follow up that I was supposed to have after the baby was born. And honestly I didn't feel the need. They were just going to say the same thing- we don't know what it is, it's probably fine, keep watching it and following up. I started getting headaches that started RIGHT behind that eye, which scared me enough into scheduling the follow up in August. And what do you know. They said my tumor wouldn't cause headaches, they didn't know what it was, and that the longer we went without significant change in the lesion, the more likely it was just a normal, harmless mole, keep monitoring it. At this point I was so sick of the dumb thing, and my deductible was met from having the baby, so I asked the doc if I could just have it removed. He said he would recommend having it removed by the sheilds in Philly if I wanted it out, so he would do an email consult to see what they thought about removing it. That was August, and by October I hadn't heard back about the email consult, and I lost my desire to have it removed. It just didn't seem worth it. I really was set on just leaving it alone. But out of no where I had a strong sense to follow up on that dumb email consult. Dr mifflins office said there had been confusion, but they would email the sheilds again, but in the meantime they recommended a consult with Dr Mifflin in salt lake. I went to the consult confident again that I wanted it removed, but he reminded me of all the risks of the surgery. I was pretty confident now that I didn't want it out, but felt like I should go to Philly anyways. I prayed about it and got some weird mixed feelings about it, but still had a feeling I needed to go, so we booked an appointment and decided to go to go to the temple and pray for clarity. Chuck and I both felt clear as day that we were supposed to go to Philly. The temple was the only time I felt good and clear that I was supposed to go to Philly.
So we set up a baby up sitter for Wes and flew out on the 17th. We had some issues with flights and the hotel, but we got about 4 hours of sleep and went to the appointment at 7 int the morning. The Sheilds were not in the office today, so my appointment was with their associate, Dr Lally. She came in and evaluated my eye, then sent me for pictures. I had photographs, scans, and another type of photograph done. Then went back to the exam room and Dr Lally quickly came back in and showed me today's picture right next to a picture from 2009. It was obvious it had grown. She pointed out that the tumor was still taking up the same amount of 'clock hours', aprox 3 clock hours, but that the nodule had clearly grown outward toward the cornea. She said she wanted to grab Dr armond, and that we would probably talk about surgically removing it placing a radioactive device, then she left.
She didn't say at that point that it was cancer, but that's when I knew. From my work as a medical assistant for a dermatologist I knew that it growing was not good, and she had said radiation, which to me meant cancer. I really wanted to turn to Chuck and make sure he knew what she hadn't said yet. But I don't think I was ready to say it. I wanted to be wrong. So I text my parents that it had grown and we were going to talk about surgery or radiation. My mom also works for a dermatologist, so I think I wanted her to say it and validate my interpretation. We waited probably 45 minutes for Dr armond. It felt like forever. He quickly spoke with Dr Lally in the hall and sent me for an ultrasound. The ultrasound took forever. Then waiting for Dr Lally took forever. She came in and started grabbing packets from the wall that i had previously looked at and knew the title of the packet was "malignant melanoma of the eye, winning the battle for life and sight" but she still hadn't said it. She sat down and said "now with melanomas of the eye...." but she still hadn't said it. She hadn't said that I had melanoma. And I needed to hear her say it before it could be real. So I asked if they thought it was a melanoma, and she said yes. It was an amelonotic uveal melanoma. I work in dermatology and have a family history of skin melanoma, so I am fairly familiar with the dx in terms of skin, and it's not good news. My first question was "do you need to do a biopsy for a definitive diagnosis?"Aka are you sure? she said that with an ocular melanoma they are very distinctive, and with the history of bleeding and growth, she didn't need to do a biopsy, it was a melanoma. She talked to me for another.. 5minutes? 20 minutes? I have no idea. She said some statistics. 10% something. 50%something. Genetic testing something. Oncologist something. Surgery to insert a plaque radiation something on Thursday. I was listening to what she said, I just wasn't hearing what she was saying. The only part I can repeat from Dr lally is that there isn't a known genetic correlation and that Wes isn't at higher risk for this because of me. And that my moms skin melanoma had nothing to do with my uveal melanoma. and she kept talking but I didn't hear it. Melanoma. Cancer. Me. Radiation? Am I gonna die? Will my son remember me? Will chuck be ok? Wait. Your not listening to what she's saying. Try to listen. Something about chest x-rays and the liver and now you can go schedule treatment for Thursday. I was shocked. Even though I knew for a few hours before she said it, I was shocked. And silently sobbing and shaking.
They had us wait in a hallway for the surgical coordinator. I sat by chuck And just cried. He got me more tissues and I just cried. Then I decided I needed to tell my family so I started making calls. I talked to my dad first and he got choked up, which made me cry more. Then I talked to my mom, and she got choked up, which made me cry more. A n d she offered some words of advice, as she had gotten her melanoma diagnosis about the same age that I am now. Which is 24, too young for cancer. Someone should tell melanoma that 24 is too young. And they obviously both had questions that i didnt know the answers to because i couldn't listen to Dr. Lally. There was a lady sitting by us as i called and told my paremts, and when it was her turn to leave she expressed sincere empathy and said she would be praying for me. That was very touching. And made me cry worse :)
But after another enormously long wait I went in to the scheduler who was so sweet and patient as I had no idea what i was doing and she answered all my questions that Dr Lally had just answered. She said I needed a physical before they would let me have surgery, so she finished explaining everything, and I did a quick physical with Dr Lally, then I FINALLY got to leave. We were there for 7 hours. And my eyes had been numbed, dilated, photographed, scanned, photographed again with a crazy lense they suctioned to my eye, then ultrasound, more numbing drops, more rinsing drops, more dilating drops, plus crying a lot, and I was just ready to go home. But I knew if I I went back to the hotel I would just lay in bed and cry and freak myself out. So we walked around Philly and found a park. I then called the rest of my siblings and a few close friends to give them the news, and chuck called his side of the family. That was good to talk to them. But it also made me cry more :) I realized something in the park that I think is really cool, that I will share a part of. In my religion we get patriarchal blessings. I got mine when I was 20. It says clear as day in my blessing that there are parts of this blessing that will preserve my life. I always found that so weird and poured over my blessing to see what could possibly save my life. What I realized is that my blessing counseled me to always be in tune with the spirit and that the temple should be a special place for me. And I realized that I had had so much doubt and turmoil about coming to Philly. Honestly I DID NOT want to go. Too much time, money, effort, I didn't want to leave my baby, ect. And the temple was the only place I got a clear, calm answer that I needed to come. So we came. And I was disgnosed with a cancer that could kill me if I had waited too long. And if I hadn't come, I beleive the doctors in salt lake would have kept telling me it was fine. Side note- I have no ill feelings toward any of the doctors that previously told me it was fine. I beleive they used the info they had at the time to make a recommendations to me that they thought were best. And Dr Lally said she feels confident the lesion was only a mole when I was there last in 2009, and that it made the change to cancer sometime in between my 2 visits. For a minute I thought, well then we should have just removed it before it ever had the chance to change to cancer. But I don't see any point in being mad about the past. It doesn't change my situation now. We spent the rest of the day thinking we were funny as we cracked cancer jokes and walked around independence hall and the liberty bell center. We tried to take a subway back to our hotel, but we didn't know what we were doing and I was loosing patience, so we tried to take the bus, and same thing. Really. We don't know how cities work. So we just took a cab. To the wrong hotel. Why would Marriott name two hotels so close in proximity something so close in name? Anyways we finally got to the hotel. Like I said this is all the details for my own record. Now here is the info I'm sure you guys are actually interested in.
According to the packet of info Dr Lally gave me , Uveal melanoma is rare, but still the most common type of adult eye cancer. Less than 10% of patients have a metastatic tumor somewhere else, meaning the cancer has spread. The treatment they are recommending is called plaque radiotherapy. During surgery on Thursday they will sew in place a small radioactive plaque over the eye, then sew my eye lid shut. If I choose to, they will also do a needle aspiration biopsy which will take 2 months to get results on, and will be used for genetic testing to indicate how aggressive my cancer is, and what my risk level is for the cancer metastasizing. Sounds great, but the biopsy can cause side effects and it is pretty pricey. I have to decide by Wednesday if I want this done. Then when I wake up from surgery I'll be in pain, anxious from the discomfort of the plaque, and naseauos, they will drug me up and send me to a specific hospital that I have to stay at, I don't have a choice, 2 minutes away where I have to stay til Monday. I'll be wearing a lead eye patch, so those around me won't be getting radiation. Chuck can stay in the same room, he just can't sleep on the same bed. They also mentioned that the amount of radiation the rest of my body will get will be equivalent to a chest x-ray and there should be no side effects. Chuck can come and go as he pleases, but I'll be drugged and won't be allowed to leave the room. Then Monday they will surgically remove the plaque and I can go home! I can still have vision issues after the surgery including eye swelling, vision loss, double vision, ect.
Over the next 3-6 months the tumor should shrink and I should just be left with a scar. Like I said earlier only 10% metastasize, but when they do they usually got to the liver and lungs, so I'll need chest x rays, lab work, physicals and liver imaging (ultrasound, ct, MRI) twice a year for the rest of my life.
The treatment they are doing has a 98% efficacy rate. But if it doesn't work, they would either do it again, or remove the eye. I'll have to come back to Philly in another 3-4 months for follow up, and
probably once every two years for the rest of my life.
Those are all the statistics I can remember right now. If I missed anything I'll add it later.
I'm already feeling blessed and humbled. People have offered prayers, fasts, dinners when I get home, and putting my name on the temple prayer rolls. Not to mention the wonderful people who are watching Wesley. Thank you to Kira, Scott, Jenny and will for taking Wes. Thanks to Wynn and Lois for taking our dog Sonny. Thanks to my mom and dad for helping with the flights and hotel. Thank you to that sweet stranger who was the first to offer prayers on my behalf, and anyone else who has bowed their head to ask heavenly father to help me be ok and to stay strong.. Thank you to everyone who made it possible for Chuck to be here with me. We didn't think he could come. I'm so glad he did. I need him here. I can't imagine having to make that phone call to him, I'm greatfull he was with me. I'm greatfull for modern medicine and for the doctors who have helped me. I'm thankful that the lord knows better than me and helped me decide to come, and provided people and ways for us to be here. Thank you thank you thank you. With each prayer I say, I begin by saying "thank you for this day" and I will feel that so strongly tonight. Thank you for this day that opened my eyes to the cancer within my body. Thank you for each day that I get to spend on this earth.
Wednesday, October 16, 2013
Bath time, nap time and camping
This post is going to be a picture overload, but the are mostly of Wesley, so I have a feeling you wont mind
I just wanted to do a quick update with some of the things we have been up to lately.
First off, we got Wesley on a set bedtime schedule and it has been wonderful! He goes to bed at 8:30 (most of the time) and it gives us a change to clean, relax, study, ect. I dont know why we didnt get him set on a schedule sooner. He goes to bed sooo easily now. We try to read/say prayers with him each night, but if it is getting too late we can just lay him down and he hardly makes a peep.
We have also gotten ourselves on more of a set schedule. Chuck started school again in August and is doing online courses. We also stated going to the gym. We decided that we really needed to get organized if we were going to try to work full time, be good parents and fit all the rest of this in as well. So now we set an hour and a half a day, 5 days a week aside for chuck to do homework, we go to the gym for an hour 3 times a week, and we get Wesley to bed on time (most nights). Its hard work to stick to our schedule, but its really been paying off.
Speaking of the gym, we are really enjoying it. We stated off just going to the rec center, but we now go to Kubex, a new gym in town. I still find it hard to get to go to the gym sometimes, but when im there I love it, and I even find myself 'wanting' to go. We are taking before/after pictures, but we wont be sharing those :)
Wesley is growing and developing like crazy. He 'talks' and 'sings' all the time now. He says 'amoma' and 'adada' all the time and is constantly experimenting with his voice. If we are in the car with the radio on, or singing in sacrament, or just singing at home, he sings along. He stands on his own quite a bit, and occasionally gets brave and takes a 'step' towards something. Im sure it will still be a while before he is walking, but he is gearing up. He is a tall kiddo too! He is in the 97th percentile for height and 75th for weight. He recently started waving and giving kisses. His kisses are open mouth, so we will have to work on that :)
Ok, now the pictures.
First I just wanted to share these photos of bath time. They are too cute to not share. Ever since he was a newborn he has really enjoyed bathes.
Then next is our 'just woke up from a nap' photo shoot. Im so glad that im a photographer so that I can have nice pictures of my everyday life with this kiddo. Seriously. These picutres alone make it worth it to have done the schooling and spent the money on a nice camera. I want to do more shoots like this with him.
Then we have our camping trip! On labor day we took a quick camping trip with Brent and Robyn to bear lake. Brents friends grandmother let us use her lot for free. It was grass instead of dirt, so I dont know if it really counts as camping, but we cooked over a fire, had smores, and slept in a tent, so I count it. This was Wesleys first camping trip and he did great! This kiddo has always loved being outdoors so I had a feeling he would do well. He slept great and everything. Im blessed to have a pretty easy going baby as far as changing his enviornment and not throwing him off too bad. Infact he did so well that we took him camping a few weeks later when he played 'survivor' (which I WON!), but that deserves a post of its own, so more on that to come.
Wes 'helping' dad put the tent together
Brent and Robyn and our gorgeous view of Bear Lake
Wesley LOVES his aunt Robyn, and aunt Robyn loves her Wes. They have a cute little bond :)
He really enjoyed watching the fire
He really wanted a bite of Robyns Smore
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