OK, well I guess it hasn't been that long, but it feels like it! I mean, I have been to Boston and back and then Richmond and back, so I've logged a lot of miles these past few days! Geez...where do I begin? Let's start with Boston.
Our flights were smooth, quick and uneventful which was nice. Also, my ear felt great!! WOOHOO!! As we walked through the airport (a place I've always enjoyed for people-watching), I felt jealous of other people who were going on vacations, catching up with loved ones, going on business trips. I wish that were the case with us. But something always reminds you that you actually do have it pretty good, considering. When I came out of the restroom to head to the gate on the flight up to Boston, I saw EMTs working on a patient at one of the gates, and of course I thought "I'm glad that's not me or anyone in my family"....another reminder that things can always be worse. I feel like I'm constantly telling myself (and all of you blog readers also :) ) that.
On the way up to Boston, I read up on cancer and fertility in an information booklet someone loaned me that is put together by a nonprofit dedicated to helping cancer patients and survivors who may face infertility (it's called Fertile Hope--www.fertilehope.org if anyone wants to check it out). I wanted to make sure I had some basic information before asking any more fertility questions. I think it was the first time I wasn't reading a book for pleasure while flying, and it felt pretty strange.
It was a gorgeous day in Boston, and we headed to Harvard Square for lunch before our appointment at Dana Farber. I of course had New England Clam Chowder (or "chowdah" as they say in Boston). After lunch, we headed over to Dana Farber. It's hard to explain my first impression of the center because I focused on filling out new patient paperwork, perusing the list of questions I composed, all while trying not to think too hard about the transplant. I know, it sounds like an oxymoron, but that's how I felt. I want to make sure we pick the right place for the transplant, but at the same time, I don't want to think or talk about it...I'm over it...does that make sense? :) The center was very nice, the waiting room was full, and the employees seemed friendly.
When we first met with the doctor, I felt like he didn't want to do a transplant on me. Here's what happened: his first question for us was "Why Boston?" and "Do you have any family or friends here?". It seemed he was trying to discourage us from traveling there for the transplant. As the conversation continued, I realized that he was most likely just trying to make sure we understood the fact that if I chose to come there, I would be there for three to six months, away from everyone and everything that was comfortable and familiar.
We peppered him with questions, and I was a little shocked at one of his answers. I asked how long my "isolation" would last following the transplant, and he told me one year. ONE YEAR! He clarified this by saying that I should not go to the grocery store (or any store really), the movie theater, a restaurant, or anywhere I might be in contact with people whom I didn't know (and therefore didn't know whether they were sick). I asked him how I could get exercise (after all, my yoga class and the gym are out!), and he said I could walk outside. His words were "you can go skiing, but you can't go in the lodge". I told this to Aunt Bitsy and she said, "But you'll freeze your a*@ off on the slopes!" :) Good point!
So anyway, I was quite surprised by this answer. I wrote Andrew, who if you remember from a couple posts ago, is a leukemia and allogenic (meaning, the marrow is coming from someone else, not your own cells)transplant survivor. I hope you don't mind, Andrew, but I wanted to copy and paste your description of the process so everyone could understand:
"The image is like this: Your marrow is like a lawn that has been overrun with ugly, quickly-spreading crabgrass (leukemia cells) that has completely crowded out your good grass (your current marrow). In fact, you have so much crabgrass that Lawn Doctor tells you that the only thing that will work is to kill off all the crab grass and the remaining good grass at the same time (using Cytoxin and radiation). That leaves you with a bare lawn (neutropenia). Then you put down lots of new good seed (Laura's healthy marrow) but it takes some time (maybe a year) for the new seed to take root so you have to take really good care of the little baby shoots of grass and watch carefully for any new weed (infections) that pops up, because a few weeds can quickly multiply to wipe out your baby lawn.
There are several ways that you and your doctors will protect your baby shoots. The one that you are responsible for is to take extra precautions that you don't get an infection and that if you do get an infection you call Lawn Doctor right away to come over and smush the infection! Many (maybe most) people who die after a transplant die from infections, not a relapse of the leukemia, so you have to be vigilant." That description really helped me to comprehend the transplantation process, and it of course underlined the importance of isolating myself a bit. Andrew also told me his physicians did not give him such strict guidelines, but they stressed the fact that he had to constantly be aware of his surroundings. So I just need to become accustomed to the fact that this coming year will be challenging, not only because of my health issues, but also because I thrive around people. Lori had a good point though when she wrote "just think of it as a year's worth of dedication to your body for a lifetime of happiness!". It seems I'm stealing everyone else's words tonight! What can I say? You guys say it better! :) Also, Lori, I love your idea of writing a book about how I was able to get out in the community while limiting my exposure to other people. She proposed I get creative and figure out how to do what I want to do, and here's the title she suggested: "How I Did All the Things I Wanted to Do with Only Two People at a Time.....by Julie Matthews". I love it!!!
I also asked the doctor about "radiation shielding of ovaries", a procedure done during total body irradiation in which they place shields "over the pelvic area to reduce the risk of damage to the ovaries from radiation" (definition from the Fertile Hope book--I think my professors definitely ingrained in me the importance of citing your sources! UVA and its famous honor code make it impossible for me to write something without giving due credit. :) ). This procedure is apparently not applicable in my case because the leukemia could come back fairly easily in that area...at least that's the way I understood it.
I asked about children and whether I was able to be around them in the year following the transplant. He recommended I not hug or cuddle any child, and that if I am around them, I do so outside. That felt like a punch in the gut because being around my cousins, Jack and Connor brings me such joy.
I get it though. I get the whole point of being supercareful and aware. It sucks, but I get it. A year is a year, and that can seem long or short depending on perspective. You're thinking "Here she goes with the whole 'perspective' thing again!!!", but it's true. I'm sure I'll go back and forth throughout the year, feeling sad for what I can't do and then feeling happy for being alive and enjoying what I can do. And Ronnie said that if he needs to, he'll make me a Darth Vader suit!
Another big thing though...so I guess I won't be dating for at least a year!! :) I mean, I probably wouldn't be ready for it anyway, but it kind of sucks to have a parameter placed on me that's not under my control. Also, and don't laugh, but this is another thing I thought of....I'll have to wear my glasses for a whole year (and I won't be wearing any makeup--I just thought about that one!)!!! I've gotten used to my contacts, but given the fact that hands can be so germy, I really don't want to be putting my fingers in my eyes, even if I have just washed them. I never asked the doctors about this, I just assumed. Plus, chemo can irritate your eyes so I don't want to increase the chances of having any problem. But yah, a year with glasses?! I'm already sick of pushing them up off of my nose!! :)
It was pretty funny because the doctor was shocked I still had hair following high dose Ara-C. He said "you'll probably still lose it", but I explained it had been a month since the end of chemo and I actually had to have a haircut!! He smiled and said I must be the exception. He was also amused by the fact that I requested bone marrows (everyone laughs when they hear this). I really liked him as well as his nurse/transplant coordinator.
We went to the airport right after the appointment, and talked about our options over dinner, where I had some more clam chowder (hey, I was in Boston...I had to take advantage!). We all felt the experience in Boston was a positive one, but we need to compare it to Seattle (we're going this weekend). There were lots of children at the table next to us at dinner, and when I looked around, it felt like half the people coming into the restaurant were pregnant or holding baby carriers. I felt distracted and emotional thinking about the likelihood that I would not experience motherhood in the traditional sense. I would love to adopt some day, but it's very, very hard when you realize that getting pregnant is almost certainly an impossibility. I know there are exceptions, but I think this issue is one that will require time to adjust. I never ever thought that facing infertility would be this difficult.
Thinking about this and about everything in general made me feel tired, sad and overwhelmed. I apologize again to my family for being so snappy, but I guess I'm sick of being sick. I tried hard to start a list of pros and cons for each possible situation (Boston, Seattle and staying here in Fairfax), but all I wanted to do was talk about something completely unrelated to leukemia and a bone marrow transplant.
We had a pleasant flight home, but once we actually got here, I didn't know whether I wanted to sob or just crawl into bed and sleep to try to forget about everything......sorry, I'm shuffling through out itunes library and "Dust in the Wind" just came on...I can't help laughing because every time I hear that song, all I picture is Will Ferrell in "Old School" singing at Blue's funeral (here's the clip if you need a laugh: http://www.youtube.com/watch?v=jyuVqBLuXOo)...guess it's a good thing that song came on because I needed to lighten up this post a little bit, huh?! :)
Anyway, I slept well that night, and I had a wonderful day yesterday with Aunt Bitsy, Laura, Ronnie, Katie and Kathy. Aunt Bitsy, Laura and I went to Richmond to visit them, and it was great to get down there. Dinner was delicious (even though that nasty server didn't bring your relish, Aunt Bitz!), and obviously the company was good. As you can see, I took lots of pictures...as usual.
Today I went to my doctor and had my blood drawn again because I feel like I need some blood before our trip to Seattle Sunday (we leave early Sun AM and come back on a red-eye Monday night, so it's a quick trip for such a long way). I kind of felt like a vampire calling the office to ask if I could get blood, but I know I'll be glad I get it!!! Thank you to all those blood donors out there who make it possible for me to go in and get blood whenever I need it---I once took it for granted, but after 101 units, I realize how lucky I am! Aunt Bitsy left after the appointment and our lunch of grilled cheese and onion rings (one of my favorites!), but she's coming back next week to help during chemo. Again, Aunt Bitsy, thank you so much for everything you have done for all of us. I'll admit that I cried after you left even though I know you're coming back...you have been such an uplifting presence for me, and I'm looking forward to hanging out again next week! Thank you from all of us. We love you!!
I also visited with my neighbors' new St. Bernard puppy, Abigail...isn't she adorable?!! Judging by Elsa (their other St. Bernard), she's going to be a big girl!!! Jameson and Guinness were quite curious when I got home after cuddling her. Oh, and speaking of dogs, the doctor said that being around dogs would be fine, so that is certainly a very good thing!!!! It's good that Bella is not an indoor cat because he said I shouldn't be around cats during my "isolated period", or should I call it my "year of rehealthification"--yah, I just made that word up. I think it's a pretty good one!
Let's end on an up note. I thought you would all want to know about the cool products you can purchase through "Skymall" (you know, the magazine on the planes). Ronnie was laughing about all the crazy, ridiculous items in the magazine, so I wrote some down to share with you. You never know when they will come in handy:
1)"solar-powered mole (animal, not the mark on your skin :) ) repeller drives 'em out with safe, effective, annoying vibrations!"
2)(my favorite--maybe I should get one to shoot at my doctors just for fun)"marshmallow shooter (over 30') with LED sight for accuracy"---a sight?!! Seriously?!!!
3)a cat litter box in a pretty planter (I actually thought this one was pretty useful!)
There were lots more, but this entry is plenty long enough as it is!!!!
I am doing well...overwhelmed to some degree, but ok. I need to read up on my Ireland books so I have a detailed plan once my "year of rehealthification" is through. :)
Love ya.
PHOTOS: 1)Natalie (Bella's caretaker :)) and her dog, Abigail---she really hogged the picture, huh Natalie?! :) ; 2)Mary and Elsa (beautiful dog, hhu?!); 3)Elsa, Abigail and I --- I love this picture--just look at the size of Elsa! Before long, Abigail will be just as big!; 4)"Sun Drop" is apparently the southern version of sprite--I think this would be a good ad for it, don't you?; 5)doesn't Ronnie and Kathy's sub-wolfer look like Eve's cousin from "Wall-E"?; 6)Aunt Bitsy and Katie; 7)Abigail and I; 8)Mom, Abigail and I; 9)Katie, Kathy and Laura; 10)Katie, Kathy and I; 11)Ronnie and Aunt Bitsy; 12)Ronnie with the historic heating/AC unit in Kathy's school---pretty cool looking, huh?!; 13)Aunt Bitsy and Kathy; 14)looking out the window at the restaurant in Harvard Square; 15)Ronnie explains plane safety tips; 16)a pretty view from the plane; 17)Vladdy and I---I love this picture--he looks so human, like he's hugging me! :)
I also asked the doctor about "radiation shielding of ovaries", a procedure done during total body irradiation in which they place shields "over the pelvic area to reduce the risk of damage to the ovaries from radiation" (definition from the Fertile Hope book--I think my professors definitely ingrained in me the importance of citing your sources! UVA and its famous honor code make it impossible for me to write something without giving due credit. :) ). This procedure is apparently not applicable in my case because the leukemia could come back fairly easily in that area...at least that's the way I understood it.
I asked about children and whether I was able to be around them in the year following the transplant. He recommended I not hug or cuddle any child, and that if I am around them, I do so outside. That felt like a punch in the gut because being around my cousins, Jack and Connor brings me such joy.
I get it though. I get the whole point of being supercareful and aware. It sucks, but I get it. A year is a year, and that can seem long or short depending on perspective. You're thinking "Here she goes with the whole 'perspective' thing again!!!", but it's true. I'm sure I'll go back and forth throughout the year, feeling sad for what I can't do and then feeling happy for being alive and enjoying what I can do. And Ronnie said that if he needs to, he'll make me a Darth Vader suit!
Another big thing though...so I guess I won't be dating for at least a year!! :) I mean, I probably wouldn't be ready for it anyway, but it kind of sucks to have a parameter placed on me that's not under my control. Also, and don't laugh, but this is another thing I thought of....I'll have to wear my glasses for a whole year (and I won't be wearing any makeup--I just thought about that one!)!!! I've gotten used to my contacts, but given the fact that hands can be so germy, I really don't want to be putting my fingers in my eyes, even if I have just washed them. I never asked the doctors about this, I just assumed. Plus, chemo can irritate your eyes so I don't want to increase the chances of having any problem. But yah, a year with glasses?! I'm already sick of pushing them up off of my nose!! :)
It was pretty funny because the doctor was shocked I still had hair following high dose Ara-C. He said "you'll probably still lose it", but I explained it had been a month since the end of chemo and I actually had to have a haircut!! He smiled and said I must be the exception. He was also amused by the fact that I requested bone marrows (everyone laughs when they hear this). I really liked him as well as his nurse/transplant coordinator.
We went to the airport right after the appointment, and talked about our options over dinner, where I had some more clam chowder (hey, I was in Boston...I had to take advantage!). We all felt the experience in Boston was a positive one, but we need to compare it to Seattle (we're going this weekend). There were lots of children at the table next to us at dinner, and when I looked around, it felt like half the people coming into the restaurant were pregnant or holding baby carriers. I felt distracted and emotional thinking about the likelihood that I would not experience motherhood in the traditional sense. I would love to adopt some day, but it's very, very hard when you realize that getting pregnant is almost certainly an impossibility. I know there are exceptions, but I think this issue is one that will require time to adjust. I never ever thought that facing infertility would be this difficult.
Thinking about this and about everything in general made me feel tired, sad and overwhelmed. I apologize again to my family for being so snappy, but I guess I'm sick of being sick. I tried hard to start a list of pros and cons for each possible situation (Boston, Seattle and staying here in Fairfax), but all I wanted to do was talk about something completely unrelated to leukemia and a bone marrow transplant.
We had a pleasant flight home, but once we actually got here, I didn't know whether I wanted to sob or just crawl into bed and sleep to try to forget about everything......sorry, I'm shuffling through out itunes library and "Dust in the Wind" just came on...I can't help laughing because every time I hear that song, all I picture is Will Ferrell in "Old School" singing at Blue's funeral (here's the clip if you need a laugh: http://www.youtube.com/watch?v=jyuVqBLuXOo)...guess it's a good thing that song came on because I needed to lighten up this post a little bit, huh?! :)
Anyway, I slept well that night, and I had a wonderful day yesterday with Aunt Bitsy, Laura, Ronnie, Katie and Kathy. Aunt Bitsy, Laura and I went to Richmond to visit them, and it was great to get down there. Dinner was delicious (even though that nasty server didn't bring your relish, Aunt Bitz!), and obviously the company was good. As you can see, I took lots of pictures...as usual.
Today I went to my doctor and had my blood drawn again because I feel like I need some blood before our trip to Seattle Sunday (we leave early Sun AM and come back on a red-eye Monday night, so it's a quick trip for such a long way). I kind of felt like a vampire calling the office to ask if I could get blood, but I know I'll be glad I get it!!! Thank you to all those blood donors out there who make it possible for me to go in and get blood whenever I need it---I once took it for granted, but after 101 units, I realize how lucky I am! Aunt Bitsy left after the appointment and our lunch of grilled cheese and onion rings (one of my favorites!), but she's coming back next week to help during chemo. Again, Aunt Bitsy, thank you so much for everything you have done for all of us. I'll admit that I cried after you left even though I know you're coming back...you have been such an uplifting presence for me, and I'm looking forward to hanging out again next week! Thank you from all of us. We love you!!
I also visited with my neighbors' new St. Bernard puppy, Abigail...isn't she adorable?!! Judging by Elsa (their other St. Bernard), she's going to be a big girl!!! Jameson and Guinness were quite curious when I got home after cuddling her. Oh, and speaking of dogs, the doctor said that being around dogs would be fine, so that is certainly a very good thing!!!! It's good that Bella is not an indoor cat because he said I shouldn't be around cats during my "isolated period", or should I call it my "year of rehealthification"--yah, I just made that word up. I think it's a pretty good one!
Let's end on an up note. I thought you would all want to know about the cool products you can purchase through "Skymall" (you know, the magazine on the planes). Ronnie was laughing about all the crazy, ridiculous items in the magazine, so I wrote some down to share with you. You never know when they will come in handy:
1)"solar-powered mole (animal, not the mark on your skin :) ) repeller drives 'em out with safe, effective, annoying vibrations!"
2)(my favorite--maybe I should get one to shoot at my doctors just for fun)"marshmallow shooter (over 30') with LED sight for accuracy"---a sight?!! Seriously?!!!
3)a cat litter box in a pretty planter (I actually thought this one was pretty useful!)
There were lots more, but this entry is plenty long enough as it is!!!!
I am doing well...overwhelmed to some degree, but ok. I need to read up on my Ireland books so I have a detailed plan once my "year of rehealthification" is through. :)
Love ya.
PHOTOS: 1)Natalie (Bella's caretaker :)) and her dog, Abigail---she really hogged the picture, huh Natalie?! :) ; 2)Mary and Elsa (beautiful dog, hhu?!); 3)Elsa, Abigail and I --- I love this picture--just look at the size of Elsa! Before long, Abigail will be just as big!; 4)"Sun Drop" is apparently the southern version of sprite--I think this would be a good ad for it, don't you?; 5)doesn't Ronnie and Kathy's sub-wolfer look like Eve's cousin from "Wall-E"?; 6)Aunt Bitsy and Katie; 7)Abigail and I; 8)Mom, Abigail and I; 9)Katie, Kathy and Laura; 10)Katie, Kathy and I; 11)Ronnie and Aunt Bitsy; 12)Ronnie with the historic heating/AC unit in Kathy's school---pretty cool looking, huh?!; 13)Aunt Bitsy and Kathy; 14)looking out the window at the restaurant in Harvard Square; 15)Ronnie explains plane safety tips; 16)a pretty view from the plane; 17)Vladdy and I---I love this picture--he looks so human, like he's hugging me! :)
PS I just let the dogs out and heard my very favorite sound of summer---the katydids!!!! I think I'm gonna go listen for a while. :)
5 comments:
Great pictures! I love the BIG puppy!...so cute!
Wow...you have been quite a busy girl! Good luck in Seattle.....
wow! long post. I am glad you shared all of that, it does put into perspective (hee hee) just how much you have to go through.
BUT i completely agree with Lori
one year out of your life that yields a lifetime of "healthiness" is more than worth it.
P
P.s. if i don't get minor (use your mistress status for good use JULES!) i want that puppy. NOW. I bet you their poop is not as big as a great dane poop.
I like the phrase "a year of rehealthification." It sounds much better than the alternative, and it sounds like something rich celelbrities would choose to do, like spending a year at a retreat, detoxing from the pollutions of modern life, not making movies or albums. Ah, rehealthification!
Puta,
I finally just had the time to sit down & read your latest entry...it was a good one! :) (And full of great photos...I love when your blog has new photos!)
And with regard to the fertility issue, just think of all the screaming, tantrum-throwing, snot-nosed little brats that are out there, and maybe be glad you don't have one! :) Kids are over-rated anyway. (Hope none of the Moms are reading my entry! :) Anyway...kids aren't all they're cracked up to be. So maybe it's a blessing. :) Love ya! Laura :)
Post a Comment