It's been just over two months since the most unexpected Christmas present ever. :) ONLY two months. I think about that and I am SHOCKED! Seriously... let's just take a quick look back over the last two months.Hmmm... so first I was diagnosed on that lovely winter day which immediately spun us into a whirlwind of change. Part of that change was informing the company for which I work, that I would be needing a few MONTHS off of work and asking how they felt about that.. (Thankfully I work with amazing people and they have been nothing but supportive). Another change was moving out of my duplex in which I had lived for almost 5 years, to move into my sister's place. This change has had its positives and negatives and honestly the ONLY negative worth mentioning is that I miss my dog.. but we all heard about that earlier in the blog. :) Living at my sisters has been quite pleasant. It's nice to have people around to chat with, I adore my sister so it is way fun being able to spend more time with her.. so ya, I'm very happy with that change on the whole. :)
Another change that I tend to think about a lot, but not talk about much, is my feeling of "unsure". All my life I have had to decide and move forward with my life, but I've always had the feeling that when it comes down to it, I can do ANYTHING I want... really. Now, there is this sense in the back of my mind that there is SO much unknown about how I will be after the transplant. I know it will be a long hard journey, but I don't know a lot.... For example, will I be able to do musicals again and at the rate that I used to do them? They are draining at the best of times. How long will it be before I am able to sing again? (for those of you that don't know, it is currently a struggle to sing because my spleen is squishing EVERYTHING inside me and it hurts to use my diaphragm. LAME. :) Anyway, that is one thing that tends to be on my brain, but then again, I AM the type of person that just thinks of this for a minute, then shrugs and moves on, realizing that I will just deal with that when it comes up, ain't nuthin I can do about it now. It just pops into my brain every now and again. :)
Another change that I am just HAVING to get used to... Independence.... Wow, I have been, in most senses of the word, independent since I was fresh out of high school. FOREVER ago :) Now, I am having to rely on others and I am struggling. I'm only struggling because I have this little voice in my head telling me that I am inconveniencing everyone around me and it's not fair that they have to help me... I've always been able to "do it myself", but now, there's no way... That's a toughie for me. :/ Don't think I will ever get good at this.
Anyhoo... I'm sure that most of you know the changes that happen when one is put into this type of life-changing situation. Mine aren't really any different. I AM grateful though for many things that i don't think I fully appreciated before. I am honestly GRATEFUL that I haven't gotten married yet. Yes Yes, some of you can close your dropped jaws. I'm serious though. I am glad that I don't have some poor soul of a husband or children for that matter that have to watch me go through this and have to deal with the repercussions of a wife or mother being "out of it" for a long time... nope, I'm grateful that I'm still single. I'm grateful for that fact that I moved back to Boise. Yes, I've been happy here, but it dawned on me yesterday how much MORE of a pain and change this would have been had I still been living in Utah where I didn't have any family. I'm SO grateful that I have a big fam. I have amazing parents and siblings that are ALL pitching in so that I can recover and move on with my life. I can't even remotely IMAGINE going through this without them. I sincerely pray that NO ONE ever has to deal with something like this alone. That would be tragic.
I am grateful that I have such strong religious beliefs... Yuppers.... That's another thing I couldn't imagine. Trying to navigate this life is tough enough when you don't have a sense of purpose or reason and a feeling that there really is someone out there that has your best interests in mind. I wouldn't want to think about how I would fear this whole process without the comfort of knowing that my future is in bigger hands than mine. for TRUTH! :) I am ever so grateful and awed by the outpouring of love and support that has come from all corners of my life. Seriously, I had NO idea that I KNEW so many people, let alone that they actually could tolerate me. :) I have been truly blessed with the most amazing people in my life that I can't even type this paragraph without tearing up.. what a Wanny.... :) But it's true... I am often overwhelmed with the feeling of gratitude and I sure wish that I could somehow relay that thanks in it's entirety to people, but short of being a bawling snotty nosed cry face to EVERYONE, I got nuthin. :)
Wow, can I yammer.... so, to end this blab (my new name for a blog)... There has been mucho change in the past two months, but most of it, surprisingly you may think, has been for the better... I have been able to realize how wonderful I really have it. So, thank you all for you support and love and for putting up with me. :) Peace out Boy Scouts. :)
PS... Wednesday, Seattle FINALLY started testing two of my siblings to see if they could be a match.. just a couple weeks and we should know at least a LITTLE more info... WOOT! :)
Friday 25 February 2011
Friday 18 February 2011
5 WHAT?
Um.... well, today I got an update about my HLA typing. HLA typing is the process they apply to blood to decide who is gonna be my donor. So, me and four of my siblings had blood drawn and it's been "on ice" at SCCA for two weeks now. I have called a few times in the past two weeks to try and see what the status of the typing was and had repeatedly been told that the typing was currently waiting for financial approval. Finally, today, the response from my health insurance came back. They will pay for MY HLA typing, but NOT my sibs.... I'm thinkin', ok, well how much does HLA typing cost? The answer..... 5 grand per person.... (heart attack) 20 THOUSAND DOLLARS to test my siblings to see if they could be my donor..... HOLY CROW!! K, I was expecting a large amount, but certainly NOT that one. Thankfully my financial contact at SCCA has probably been through this before and was patient with my spaz attack.
So, she went on to explain that HER next step is to contact the Lab and see if they can do what is apparently called "Modified HLA Typing". The explanation she gave me of the modified typing is that they will only test a few key points and not rack up the full 5 grand costs, just a portion. They will do a couple of my siblings at a time with the modified. If they can't or won't do the modified typing, then we will just do the regular testing one sibling at a time, money flow permitting. :)
Either way, the joy of the conversation was that I get to pay a chunk o' change and then get on a payment plan to get this started.... woot! :)
Anyhooo... I should know more early next week about what the estimate for the modified testing may cost and whether or not they will do it. :/
Other than that things are going as well as can be expected. :) I am exhausted a good majority of the time, but hey... only thing that would make my world better right now would be the chance to wear pajama pants all the time.. :) Since my spleen is so large and all my bones are so sensitive, I have about three pairs of pants that I can wear that don't cause uber pain... to say the least, I'm sick of those pants. :)
My medication is pretty much regulated with now pain pills every two hours and mild chemo drugs doubled morning and night. Apparently they weren't doing their job and we needed to kick them in the pantaloons. So, I'm feeling better than I was a few weeks back, but still every day is a guessing game.. That really makes for fun.
Well.. I think that's about it. :) I will write again as soon as I know more about this HLA typing issue... sanks for reading!! Sorry I'm not as funny as I used to be.. being funny takes too much energy. :) Love you all and thank you again for all of your support.
So, she went on to explain that HER next step is to contact the Lab and see if they can do what is apparently called "Modified HLA Typing". The explanation she gave me of the modified typing is that they will only test a few key points and not rack up the full 5 grand costs, just a portion. They will do a couple of my siblings at a time with the modified. If they can't or won't do the modified typing, then we will just do the regular testing one sibling at a time, money flow permitting. :)
Either way, the joy of the conversation was that I get to pay a chunk o' change and then get on a payment plan to get this started.... woot! :)
Anyhooo... I should know more early next week about what the estimate for the modified testing may cost and whether or not they will do it. :/
Other than that things are going as well as can be expected. :) I am exhausted a good majority of the time, but hey... only thing that would make my world better right now would be the chance to wear pajama pants all the time.. :) Since my spleen is so large and all my bones are so sensitive, I have about three pairs of pants that I can wear that don't cause uber pain... to say the least, I'm sick of those pants. :)
My medication is pretty much regulated with now pain pills every two hours and mild chemo drugs doubled morning and night. Apparently they weren't doing their job and we needed to kick them in the pantaloons. So, I'm feeling better than I was a few weeks back, but still every day is a guessing game.. That really makes for fun.
Well.. I think that's about it. :) I will write again as soon as I know more about this HLA typing issue... sanks for reading!! Sorry I'm not as funny as I used to be.. being funny takes too much energy. :) Love you all and thank you again for all of your support.
Saturday 12 February 2011
Oswald.....
My dog. My amazing, darling pupper..who weighs about 90 some-odd pounds. :) Since I have to spend a few months in Seattle, it was decided that I would move out of my apartment sooner rather than later to save money and really, why not? So, my amazing sister (who threatened me within an inch of my life if I mentioned her name specifically, but we all know her as Bill anyway, so no worries) is allowing me to live in her home until I can go to Seattle. Only drawback, she wasn't really wanting my puppers around.. He DOES tend to shed, but he's SO DARN ADORABLE!! Anyway, I decided to respect her wishes and only brought my two cats.... hee hee.. :) Oswald, was off to my parents house in the mountains. Now, my parents are the caretakers of Pine Top Camp for the Church up in Idaho City so they have this beautiful mountain top residence that is probably a dream come true vacation spot for any dog. Especially Ozzi. Ozzi just happens to be the son of my father's dog Grace, so he LOVES it up here and LOVES to come home and visit his mom. (She doesn't so much enjoy it for long... I mean, what mother does enjoy it when their adult child comes back home to live, really..) Anyway, since I moved out to my anonymous sister's house, I have MISSED by doggy uber mucho!!!! I mean really, I picked him out when he was only two days old and we have been pals ever since.. It may be psycho, but I think of him as my kid sometimes (and sometimes he acts like one. :) ) I love my pup.....some. :) So, this weekend, I decided to drive on up to Piney Top to see my doggers.... Yipppeeeeeeee!!! The reason I am telling you all this is? I just really like my dog and he makes me VERY happy and I miss him. All because of this lame "malfunction" as I like to call it... I personally am sure that he is fine up here and loves it, but we did have a little proof that he misses me too!! My mother has told me numerous times that Ozzi wasn't eating very well, bit here, bite there, which is somewhat normal for him, but not to the extent of not eating a full bowl of food. But when I showed up last night and the dogs got fed, Ozzi INHALED the full bowl of food... his world was right again for the moment. :) That makes me feel loved. Anyhoooooooooo, not that any of you really needed or wanted to know about my dog, but I think he is a big source of happy in my life and I like to share sources of happy. :) and here one of my sources is:
Saturday 5 February 2011
I knew it!
Well, yesterday was certainly a long day, but all in all a great one. :) First thing in the morning, my amazing brother B drove me to my appointment at SCCA. We met with Dr. Hootie for 2.5 HOURS! yep, I typed that right... 2.5... to say the least it was a LONG meeting, but very informative. We talked about what exactly a bone marrow transplant is and how it will change things, how long the recovery process will be and what I need to do to prepare. We talked about the fact that I will need to be in Seattle for 3-4 months, which I knew, but it was made official that my brother lives outside the allowed 30-minute limit. The 30-minute limit is a rule, that once you are made outpatient after the transplant, you have to live within 30-minutes of the hospital. This is just so if something happens you can get to the hospital quickly. It makes sense, but there it is... My brother and I had been chatting for quite some time about me living with him, since post transplant I have to have someone with me pretty much 24/7 for those 3 months, and that would be really convenient to be at his house. So, now I am on the search for a suitable place to reside and people to take turns living with me. So, if any of you want to take a vacation (well, if you consider a vacation, hanging out with me all drugged up) let me know and we can work you in the schedule. :) jk...
So, after the ever so long meeting with Hootie, we met with the financial people...ouch. Then a quick tour of the facility, then blood tests... good times were had.. I mean it. :) Thankfully, two of my siblings were here in Seattle and were able to come in to SCCA and get tested to see if they could possibly be my donor. I am SO grateful that i have these amazing siblings. All 5 of them each bring a different amazing element into my life and to my recovery. They are pretty much fantastic... and yes, I taught them each how to be that way. :) So, after 6 or so hours at SCCA, we vamoosed and thankfully, the weather in Seattle was wonderful. A little on the chilly side, but no rain, not a ton of wind.. it was great.
So, me, a couple of my sibs, momsy and 8 nieces and nephews went down to Pike Street and wandered. What a fun place, especially with all the chillen.. they got their picture taken by the bronze pig, got candy legos at the sweet shop, mini doughnuts with sprinkles, and amazing cheese curds with herbs. One thing that dawned on me yesterday was really how much I love Seattle. Well, this part of Washington in general. Not that I will spend TONS of time roaming about post transplant, but when I get the chance, I'm glad that it will be in a pretty place. :)
Well, now, what the future holds is waiting. It should take about 3 weeks to type my siblings blood (2 more are being tested next week), then depending on the results we can either move forward with the transplant, or wait more to find an unrelated donor. We did find out that to find an unrelated donor can take at minimum 4-5 months, so cross your fingers one of my siblings is close enough. Not that ANY of them would ever freely admit that they have always wanted to be just like me, but.....maybe one of them is. :)
For today, I am hanging with part of my amazing family, cheering on my niece at her basketball game, singing with my mother at another niece's baptism and all in all, relaxing and enjoying the company of these wonderful people.
So, until I hear more intersting information or develop some new side effect from my medication, you can all take a break from my ramblings. :) Thank you again for all of your support and well wishes. :)
So, after the ever so long meeting with Hootie, we met with the financial people...ouch. Then a quick tour of the facility, then blood tests... good times were had.. I mean it. :) Thankfully, two of my siblings were here in Seattle and were able to come in to SCCA and get tested to see if they could possibly be my donor. I am SO grateful that i have these amazing siblings. All 5 of them each bring a different amazing element into my life and to my recovery. They are pretty much fantastic... and yes, I taught them each how to be that way. :) So, after 6 or so hours at SCCA, we vamoosed and thankfully, the weather in Seattle was wonderful. A little on the chilly side, but no rain, not a ton of wind.. it was great.
So, me, a couple of my sibs, momsy and 8 nieces and nephews went down to Pike Street and wandered. What a fun place, especially with all the chillen.. they got their picture taken by the bronze pig, got candy legos at the sweet shop, mini doughnuts with sprinkles, and amazing cheese curds with herbs. One thing that dawned on me yesterday was really how much I love Seattle. Well, this part of Washington in general. Not that I will spend TONS of time roaming about post transplant, but when I get the chance, I'm glad that it will be in a pretty place. :)
Well, now, what the future holds is waiting. It should take about 3 weeks to type my siblings blood (2 more are being tested next week), then depending on the results we can either move forward with the transplant, or wait more to find an unrelated donor. We did find out that to find an unrelated donor can take at minimum 4-5 months, so cross your fingers one of my siblings is close enough. Not that ANY of them would ever freely admit that they have always wanted to be just like me, but.....maybe one of them is. :)
For today, I am hanging with part of my amazing family, cheering on my niece at her basketball game, singing with my mother at another niece's baptism and all in all, relaxing and enjoying the company of these wonderful people.
So, until I hear more intersting information or develop some new side effect from my medication, you can all take a break from my ramblings. :) Thank you again for all of your support and well wishes. :)
Thursday 3 February 2011
Today and Tomorrow
Well, now that you are all caught up through the diagnosis, I can continue through to the present. :) A little over two weeks ago, I had to call my doctor and ask for some pain medication. I tell ya, it hurts when your SHPLEEN decides to grow.. (and yes, I meant to say SHPLEEN... always have to say that word with a liSHp. :) ) One great thing that comes from and enlarged spleen is the rights it gives you, when someone hugs you too tight or punches you... You are able to say "MY SPLEEN!" I tell ya, it's kinda fun. :)
So, since my SHPLEEN wasn't cooperating, I asked Dr. D for some pain medication and with that he added a bonus gift of a "shreen splinker" (It's impossible for me to say that the proper way.) FANTASTIC!!! Not only am I loopy from pain killers, but I have a drug that literally says on the bottle that you have to wash your hands after handling it....
OK, wait a minute.... I will need to wash my hands thoroughly after placing this pill... IN MY MOUTH... yah, that makes perfect sense :) ah well... all part of the adventure right?
Thankfully, in spite of the oxymoron situation, the shreen splinker is helping. There were a few days there at the beginning that I felt quite good. It was amazing the difference. I hadn't realized really how bad I felt until I didn't feel it anymore. Now, after a couple weeks though, I have had to double my pain medication dose just to make a difference.. guess what comes with double dose of the drugs though..... Double the fun. It's just like Doublemint gum... no really. :) Nah, it's not too bad, but I'm definitely more "spinny" than normal, which has it's own positives and negatives. :)
Anyhoooooooo.... So, TOMORROW... it's the big day. I have my very first appointment scheduled at SCCA (Seattle Cancer Care Alliance). eek... I'm a little nervous. I think mostly because it is ACTUALLY becoming real. There is part of my brain that is still quietly whispering that this is all silliness, this stuff doesn't happen to me.. how ridiculous... :) So, this next appointment is kinda like telling that voice to put a sock in it. :/ This appointment tomorrow will entail meeting my transplant team, the doctor, nurses, my social worker, financial planner person, having a tour of the facilities....etc. Then we get to start discussing DONORS. I feel VERY lucky that I have so many siblings that are healthy and willing to be tested. I am told that siblings are the most likely to match, so props mom and dad.. way to plan for my future. :)
So, I will have to let you all know sometime later this weekend how this new step goes and whether or not I meet McDreamy. :)
Oh, and PS.... If you have any questions or comments, please feel free to type away.. I am MORE than happy to answer any questions. I realize that I have been dealing with this for a couple months now and all this information is in my brain, but I don't always communicate it. So, feel free to ask any questions you want and I will do my best to respond. Thank you all again for your support and well wishes... It truly makes a HUGEEEEMONGO difference. :)
So, since my SHPLEEN wasn't cooperating, I asked Dr. D for some pain medication and with that he added a bonus gift of a "shreen splinker" (It's impossible for me to say that the proper way.) FANTASTIC!!! Not only am I loopy from pain killers, but I have a drug that literally says on the bottle that you have to wash your hands after handling it....
OK, wait a minute.... I will need to wash my hands thoroughly after placing this pill... IN MY MOUTH... yah, that makes perfect sense :) ah well... all part of the adventure right?
Thankfully, in spite of the oxymoron situation, the shreen splinker is helping. There were a few days there at the beginning that I felt quite good. It was amazing the difference. I hadn't realized really how bad I felt until I didn't feel it anymore. Now, after a couple weeks though, I have had to double my pain medication dose just to make a difference.. guess what comes with double dose of the drugs though..... Double the fun. It's just like Doublemint gum... no really. :) Nah, it's not too bad, but I'm definitely more "spinny" than normal, which has it's own positives and negatives. :)
Anyhoooooooo.... So, TOMORROW... it's the big day. I have my very first appointment scheduled at SCCA (Seattle Cancer Care Alliance). eek... I'm a little nervous. I think mostly because it is ACTUALLY becoming real. There is part of my brain that is still quietly whispering that this is all silliness, this stuff doesn't happen to me.. how ridiculous... :) So, this next appointment is kinda like telling that voice to put a sock in it. :/ This appointment tomorrow will entail meeting my transplant team, the doctor, nurses, my social worker, financial planner person, having a tour of the facilities....etc. Then we get to start discussing DONORS. I feel VERY lucky that I have so many siblings that are healthy and willing to be tested. I am told that siblings are the most likely to match, so props mom and dad.. way to plan for my future. :)
So, I will have to let you all know sometime later this weekend how this new step goes and whether or not I meet McDreamy. :)
Oh, and PS.... If you have any questions or comments, please feel free to type away.. I am MORE than happy to answer any questions. I realize that I have been dealing with this for a couple months now and all this information is in my brain, but I don't always communicate it. So, feel free to ask any questions you want and I will do my best to respond. Thank you all again for your support and well wishes... It truly makes a HUGEEEEMONGO difference. :)
Wednesday 2 February 2011
The Diagnosis...
December 23, 2010. Dr. D. Day.... hee hee.. sorry, I couldn't resist. Well, this is how it all went down. There I am, hurrying up and NOT waiting very well, when I go to my appointment with FULL expectation that the results from Stanford have not been received. My parents, the lovely people that they are, met me at MSTI to meet with the doctor. This meeting was not going to be cancelled even without results because Dr. D. was headed out the door for a well-deserved vaca the next week and he wanted to check on me and make sure all was well before he vamoosed.
We get there, we sit down, Dr. D. has a morose face and explains that the results DID come back and I have Primary Myelofibrosis. Now, keep in mind that when I talked to the nurse earlier in the week in my "impatient waiting period" she had told me that he suspected this disease and THAT is why he sent my marrow to Stanford. However, my parents knew this not. All was well tho, my mother is tough and I think my father was asleep...jk. Dr. D. went on to explain exactly what Primary Myelofibrosis is and how we fix me.
Primary Myelofibrosis - is a disorder of the bone marrow. It is currently classified as a myeloproliferative disease in which the proliferation of an abnormal type of bone marrow stem cell results in fibrosis, or the replacement of the marrow with collagenous connective tissue fibers.[1] In English, that means that there is an abnormal amount of scar tissue in my bone marrow. I'm an overachiever. I make everything in excess. :)
This cancer is a very RARE cancer and usually seen in patients over the age of 50.. so, either my parents aren't telling us something, or this is a surprising case in someone my age. Dr. D. even said that he was surprised. It's uncommon in general but REALLY uncommon in my age group... I like to think of myself as a trend setter, but this one you guys can just ignore... no need to join this group. :)
With that, the only known CURE, is a bone marrow transplant. Otherwise, they can only treat symptoms and once it starts moving right along, things get worse and the life expectancy isn't all that long (keep in mind most studies are done with "the older crowd"), but in any case, with the speed things can get bad, the "recorded" average of life expectancy once your symptoms present themselves is 5 years. That didn't work for me, so I opted for the transplant... I like to think of myself as wise as well. :)
So, here we are on our path to a transplant.... Don't go away, I'll be back tomorrow. :)
We get there, we sit down, Dr. D. has a morose face and explains that the results DID come back and I have Primary Myelofibrosis. Now, keep in mind that when I talked to the nurse earlier in the week in my "impatient waiting period" she had told me that he suspected this disease and THAT is why he sent my marrow to Stanford. However, my parents knew this not. All was well tho, my mother is tough and I think my father was asleep...jk. Dr. D. went on to explain exactly what Primary Myelofibrosis is and how we fix me.
Primary Myelofibrosis - is a disorder of the bone marrow. It is currently classified as a myeloproliferative disease in which the proliferation of an abnormal type of bone marrow stem cell results in fibrosis, or the replacement of the marrow with collagenous connective tissue fibers.[1] In English, that means that there is an abnormal amount of scar tissue in my bone marrow. I'm an overachiever. I make everything in excess. :)
This cancer is a very RARE cancer and usually seen in patients over the age of 50.. so, either my parents aren't telling us something, or this is a surprising case in someone my age. Dr. D. even said that he was surprised. It's uncommon in general but REALLY uncommon in my age group... I like to think of myself as a trend setter, but this one you guys can just ignore... no need to join this group. :)
With that, the only known CURE, is a bone marrow transplant. Otherwise, they can only treat symptoms and once it starts moving right along, things get worse and the life expectancy isn't all that long (keep in mind most studies are done with "the older crowd"), but in any case, with the speed things can get bad, the "recorded" average of life expectancy once your symptoms present themselves is 5 years. That didn't work for me, so I opted for the transplant... I like to think of myself as wise as well. :)
So, here we are on our path to a transplant.... Don't go away, I'll be back tomorrow. :)
The Continuation......
And so.... we continue. :) The day after the ultrasound I got a call from the VERY confused Dr. Dan. Seriously, he was quite surprised by the results. So, since there were definite abnormalities in my blood and I had a fat spleen, he wanted to go forward and figure out what this was by doing a bone marrow biopsy. Um..... the ONLY thing that I knew about bone marrow biopsies was that they HURT.... that's all anyone told me. Pain pain, and oh, a little more pain. yippers... to say the least, I was STOKED! :) But, I asked my amazing docca and he said that it was a short 10-15 minute procedure that he does right in the regular exam room and I should be up and limping and able to go back to my day. So, the trusting person that I am.. December 10, I went to MSTI and had a hole drilled into my hip. Actually, it wasn't too bad... I even laughed a couple times because the nurse was quite the crack-up. Dr. D had to keep pausing while I giggled because of course, my amazing flabs, whenever I laugh and I'm laying on my stomach, my whole body moves... it's quite hilarious really. :) At this same appointment he did chat with me about what he was seeing in my blood and his thoughts on the matter.. just non-chalantly throwing out words like Lymphoma, Leukemia.... no biggie :) But he DID tell me that he THOUGHT it was CML.. a certain type of Leukemia that is actually quite treatable with a pill. So, I left that appointment with all different kinds of thoughts in my brain, but honestly still feeling very positive and upbeat.
Now, post biopsy came the roughest and toughest part.... the "hurry-up and wait" part. Dr. D told me that I would probably have my results back within the next week. However, that was so NOT what happened... I had an appointment scheduled for December 17th to meet with him and chat about the results, but me being the ever so patient that I am, called them on the 15th to see if they knew anything yet.... I'm SO NOT good at waiting.
Well, when I called, I found out that Dr. D had found some "interesting" things in my marrow and needed to send it off to Stanford to be tested further. (Oh good :/) Then I was informed that it was more than likely that they wouldn't have my results back for another week (hopefully). So, we rescheduled the appointment for December 23 in the afternoon, crossing our fingers that the results would be back by then.
Now, post biopsy came the roughest and toughest part.... the "hurry-up and wait" part. Dr. D told me that I would probably have my results back within the next week. However, that was so NOT what happened... I had an appointment scheduled for December 17th to meet with him and chat about the results, but me being the ever so patient that I am, called them on the 15th to see if they knew anything yet.... I'm SO NOT good at waiting.
Well, when I called, I found out that Dr. D had found some "interesting" things in my marrow and needed to send it off to Stanford to be tested further. (Oh good :/) Then I was informed that it was more than likely that they wouldn't have my results back for another week (hopefully). So, we rescheduled the appointment for December 23 in the afternoon, crossing our fingers that the results would be back by then.
Tuesday 1 February 2011
The beginning......
Ok, well, we can't be 100% sure when the beginning of all this really was, but I will start at the beginning of THIS story.... :) Ahem.....I was born at a very young age.. just kidding. It began when I went to my Doctor for my yearly physical. (just as a side note... I want to encourage ALL of you to get a physical done EVERY year! It's amazing how many people I have come across since this all started that have been diagnosed with intense life-threatening diseases, but they caught them way early because they were found during a yearly physical.) Ok, done with the soap box. :)
October 27, 2010 I had blood labs done in anticipation for my physical on November 2. When I went to my actual physical a week later on the 2nd, my doctor mentioned that there were some abnormalities with my White Blood Cells. Other than that I was as healthy as a horse (whatever that means). So, she wasn't TOO concerned, thinking it was probably just an infection or a cold or what not... I let her know that I had NOT been feeling sick, but hey, with my schedule at that time, I didn't have a moment of time to notice if I was sick or NOT, so I went with it. :)
She just wanted to be sure, so we waited a couple weeks and I had another set of blood tests. November 25th, the day after I had this second set of labs, my doctor called and told me that my White Blood Cells were still a little hinky so she wanted to refer me to an hematologist/oncologist. She still said she wasn't too worried, but being the AMAZING docca that she is, she just wanted to make sure.... I need to send her a muffin basket... :)
Now, my mind was kinda weirded out by this... I hadn't ever had hinky blood before.. what the who? I was thinking that what she meant by abnormal White Blood Cells was an abnormally high Cell Count.. So, Google here I come... what did I find? Everything in the world can cause I high white blood cell count. So NOT helpful. :) And then I thought, well what does a Hemato. hetamoph... hephamo... hematologicalisistal even do??? I CERTAINLY knew what Oncologist meant and that didn't comfort me AT ALL... but hey, I rolled with it.
So, December 7, 2010 I go to meet my Hematologist/Oncologist.. the AMAZING Dr. Dan. :) Dunh Dunh Dunh............ no really, he's pretty fanulous. :) Well, when I first sat down with Dr. Dan he kinda looked confused and asked me why I thought I was there.... um..... my doctor told me to come? (make sure you read that in a very childish nervous voice. Most important) He said that he had looked at my blood and he wasn't too concerned about anything. Worst case scenario, I MIGHT be SLIGHTLY anemic... :) But, because my personal doctor wanted a follow-up he decided that I should have MORE blood drawn (and when I say more, I mean like 103 viles of my blood/at least it seemed like that) and have an ultrasound to look at my spleen. So, after I had been completely drained of all blood, I left, thinking, no biggie.... anemia.. meh. The next day I had my ultrasound.... First, weird squishy gel on my belly and ribs is SO NOT the most comfortable thing, let alone, from all the poking and prodding from the day before my flabs (as I call my abs) were really sore. So, I let the nurse know where it hurt the most and she proceeded to poke harder ONLY in those spots, but hey... whaddya gonna do? So, long story, but in the end, the nurse had to go get the radiologist (bad sign) and they came and informed me, with those morose faces you see on Grey's Anatomy and House, that my spleen was "quite enlarged" oh, and by the way, you have Gallstones and should probably have your gallbladder out..... (side note).... So, fat spleen, belly stones, and hinky blood.... this is turning out to be some "healthy horse"............To be continued.........
October 27, 2010 I had blood labs done in anticipation for my physical on November 2. When I went to my actual physical a week later on the 2nd, my doctor mentioned that there were some abnormalities with my White Blood Cells. Other than that I was as healthy as a horse (whatever that means). So, she wasn't TOO concerned, thinking it was probably just an infection or a cold or what not... I let her know that I had NOT been feeling sick, but hey, with my schedule at that time, I didn't have a moment of time to notice if I was sick or NOT, so I went with it. :)
She just wanted to be sure, so we waited a couple weeks and I had another set of blood tests. November 25th, the day after I had this second set of labs, my doctor called and told me that my White Blood Cells were still a little hinky so she wanted to refer me to an hematologist/oncologist. She still said she wasn't too worried, but being the AMAZING docca that she is, she just wanted to make sure.... I need to send her a muffin basket... :)
Now, my mind was kinda weirded out by this... I hadn't ever had hinky blood before.. what the who? I was thinking that what she meant by abnormal White Blood Cells was an abnormally high Cell Count.. So, Google here I come... what did I find? Everything in the world can cause I high white blood cell count. So NOT helpful. :) And then I thought, well what does a Hemato. hetamoph... hephamo... hematologicalisistal even do??? I CERTAINLY knew what Oncologist meant and that didn't comfort me AT ALL... but hey, I rolled with it.
So, December 7, 2010 I go to meet my Hematologist/Oncologist.. the AMAZING Dr. Dan. :) Dunh Dunh Dunh............ no really, he's pretty fanulous. :) Well, when I first sat down with Dr. Dan he kinda looked confused and asked me why I thought I was there.... um..... my doctor told me to come? (make sure you read that in a very childish nervous voice. Most important) He said that he had looked at my blood and he wasn't too concerned about anything. Worst case scenario, I MIGHT be SLIGHTLY anemic... :) But, because my personal doctor wanted a follow-up he decided that I should have MORE blood drawn (and when I say more, I mean like 103 viles of my blood/at least it seemed like that) and have an ultrasound to look at my spleen. So, after I had been completely drained of all blood, I left, thinking, no biggie.... anemia.. meh. The next day I had my ultrasound.... First, weird squishy gel on my belly and ribs is SO NOT the most comfortable thing, let alone, from all the poking and prodding from the day before my flabs (as I call my abs) were really sore. So, I let the nurse know where it hurt the most and she proceeded to poke harder ONLY in those spots, but hey... whaddya gonna do? So, long story, but in the end, the nurse had to go get the radiologist (bad sign) and they came and informed me, with those morose faces you see on Grey's Anatomy and House, that my spleen was "quite enlarged" oh, and by the way, you have Gallstones and should probably have your gallbladder out..... (side note).... So, fat spleen, belly stones, and hinky blood.... this is turning out to be some "healthy horse"............To be continued.........
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