Before I get into the Hodgies rifraf I first want to take a minute to say how blessed and lucky I feel to have such amazing friends, family and coworkers. My parents told their closest friends this week and I told those of mine that I had not already told and I have received so many emails, phone calls, texts, and face book messages of encouragement, love, prayers and support. I cant stress enough how lucky I feel to have such great friends and family supporting me through all of this. It really does not feel like I have cancer or am about to walk down a very hard path because I have such an amazing support system walking with me. Lately when I've been getting Chemotional (a word Crares came up with that I love) it hasnt been because Ive been scared or sad its because I feel so blessed and lucky to have such great friends. So thank you all very much for all of your support and kind words!!
Now to the blah stuff. Yesterday was a doozy of a day for sure, it kind of threw me for a loop as far as what I thought my treatment plan was going to be. We went to Massey for the first time which was a major difference in atmosphere compared to the VA Cancer Institute. VA Cancer is pretty small, very nice, and usually there were maybe 10 other people in the waiting room every time I was there. I never waited longer than 10 minutes or so after the time of my appointment. Massey on the other hand is a liiitttlleee bit different. I felt like I walked into the ER waiting area for Cancer patients ha. It was nice but there were just tonnnsss of people at all health levels. Of course Massey is in a big hospital so one should expect this but I guess after going to VA Cancer and being used to that atmosphere this was just a little daunting. Not to mention we had to wait forever, first to register/check in and then for a room to become available to see the doctor. We finally saw the doctor a little after 11 (my appt. was at 9:40) and I liked her very much. Her name is Dr. Wiedl and she specializes in oncology for young adults (and pediatrics) and in leukemia and lymphoma.
She went through everything in great detail, every drug I would be taking through chemo and what their purposes are and all of their possible side effects. It was very nice. She also brought up fertility which with my other doctor I had to bring up and even then he was kind of nonchalant about it and said I could check out stuff if I wanted to and to let him know. *Chemo has a 10-15% chance of affecting your fertility so some women harvest their eggs and some go on a drug that puts them through menopause for the chemo period.* If I choose to do neither Dr. Wiedl suggests to stay on birth control throughout chemo without taking the placebo. She explained that harvesting eggs is a long process that would delay chemo, it is also said that it works best when the eggs are fertilized meaning they would suggest I pick out a random baby daddy now. Obviously I said no to that haha, no baby daddy yet please. The menopause option will mean that I would get the affects of menopause which I am not so sure I want on top of the affects of chemo so we'll see. I think I will probably just chance it and just stick with staying on birth control. On the slim chance it does produce issues with fertility in the future oh well, there are tons of kids out there that need good homes.
Unfortunately she was not able to give me my exact diagnosis because they did not have the findings of the PETscan yet and I need to get a surgical biopsy. Soooo nothing really came from the meeting as far as my diagnosis. She is going to call me with the results of my PETscan as soon as she has them. We also made appointments for a bone marrow biopsy which will be tomorrow, Jan 10th. It will be very nice though because one my mom's good friends, Yvonne, who has been helping us through this whole process (she works in the bone marrow area at MCV) will be working with me during my biopsy tomorrow and I just found out that one of my best friends growing up, Genneh, also works there and I'll get to see her too. So that makes me happy!! We also set up a meeting with a surgeon for my surgical biopsy and port placement for tomorrow. At that appointment we will set when the surgery will actually be, hopefully sometime early next week. On Friday, Jan 11th, I will have an Echo Cardiogram to check my heart and make sure it is okay for chemo and next Tuesday, the 15th, I will meet with Dr. Wiedl again. Hopefully by that point I will have either had all of my tests done or at least had them scheduled. So hoooopeeefullly, fingers crossed, we will have an exact diagnosis and staging by the end of next week.
After explaining all of that stuff she went into more detail about the treatments depending on what my diagnosis would be. This is where things kind of threw me for a loop. In my mind I had set that chemo would be every other Friday for 4 or 6 months weeellll that is not how they do it at Massey. She explained how Hodgkins is very accepting of chemo and due to this it is a lot of doctors initial thought to blast patients with an intense round of chemo followed by radiation, which does work. However, now they are finding people are coming back 15 years later with other cancers and health issues due to the intense chemo. She explained this method is not bad for older people with the disease because they are trying to buy them 10 -15 more healthy years where as with young adults and kids they are trying to provide us with a lifetime of healthy living. As dad says, they want you to "live long and prosper," haha Oooo dad :). They have done studies with young people and have found that our bodies take it better to receive treatment by getting chemo in intervals, a little each day, vs. getting it all at once. She also said they like to treat each case individually, instead of treating all the hodkins patients the same she is addressing my hodgkins. So they monitor the drugs carefully and if one kind is affecting me too much they'll alter things for how they need to be. Therefor I would go into treatment day 1,2, and 3, then come back day 8 to check my vitals. We would then see how my body is handling everything and I would start again after 14 days or possibly 21 days, it just depends on how my body is.
Now this all makes a lot of sense and the more time I have spent talking it out and thinking about it I feel more comfortable with this method but yesterday I was not thrilled with the idea. It is very hard for me to think long term vs. short term. For me I heard possibly three days out of work every other week vs. the one day I was thinking it was going to be and that is all I could think about. * Side note: My work is extremely supportive, I honestly can not imagine working with more supportive people and they want me to do whatever will keep me healthiest regardless of the time it takes, its just me that gets the crazies about being gone.* I also had never heard of anyone doing treatment this way so I thought that was odd, cause you know in my 2 months of stalking everything about Hodgkins I have become an expert haha. However last night Carrie and I did some research about this type of treatment and we found articles from this spring and summer talking about this type of thing working well with Hodgkins. That just shows the benefits of going to a research hospital. So anywho I will definitely be going to Massey and doing the 3 day treatment, it will just take some time to get used to it but who knows, maybe this way will make me less affected by the different drugs. Time will tell!!!
We also found out that MCV has a building that does treatments out by Stony Point. Mom is looking in to see if I could possibly go there for treatments but still see Dr. Wiedl and just come down to the Massey building when I get my vitals tested and for appointments with her. Hopefully that will work out!
So that is my long update from yesterday! I feel like its all one long rambling session so I hope you were able to make some sense of it all. I will post again tomorrow after the bone marrow biopsy and hopefully after hearing the results of the PETscan.
She went through everything in great detail, every drug I would be taking through chemo and what their purposes are and all of their possible side effects. It was very nice. She also brought up fertility which with my other doctor I had to bring up and even then he was kind of nonchalant about it and said I could check out stuff if I wanted to and to let him know. *Chemo has a 10-15% chance of affecting your fertility so some women harvest their eggs and some go on a drug that puts them through menopause for the chemo period.* If I choose to do neither Dr. Wiedl suggests to stay on birth control throughout chemo without taking the placebo. She explained that harvesting eggs is a long process that would delay chemo, it is also said that it works best when the eggs are fertilized meaning they would suggest I pick out a random baby daddy now. Obviously I said no to that haha, no baby daddy yet please. The menopause option will mean that I would get the affects of menopause which I am not so sure I want on top of the affects of chemo so we'll see. I think I will probably just chance it and just stick with staying on birth control. On the slim chance it does produce issues with fertility in the future oh well, there are tons of kids out there that need good homes.
Unfortunately she was not able to give me my exact diagnosis because they did not have the findings of the PETscan yet and I need to get a surgical biopsy. Soooo nothing really came from the meeting as far as my diagnosis. She is going to call me with the results of my PETscan as soon as she has them. We also made appointments for a bone marrow biopsy which will be tomorrow, Jan 10th. It will be very nice though because one my mom's good friends, Yvonne, who has been helping us through this whole process (she works in the bone marrow area at MCV) will be working with me during my biopsy tomorrow and I just found out that one of my best friends growing up, Genneh, also works there and I'll get to see her too. So that makes me happy!! We also set up a meeting with a surgeon for my surgical biopsy and port placement for tomorrow. At that appointment we will set when the surgery will actually be, hopefully sometime early next week. On Friday, Jan 11th, I will have an Echo Cardiogram to check my heart and make sure it is okay for chemo and next Tuesday, the 15th, I will meet with Dr. Wiedl again. Hopefully by that point I will have either had all of my tests done or at least had them scheduled. So hoooopeeefullly, fingers crossed, we will have an exact diagnosis and staging by the end of next week.
After explaining all of that stuff she went into more detail about the treatments depending on what my diagnosis would be. This is where things kind of threw me for a loop. In my mind I had set that chemo would be every other Friday for 4 or 6 months weeellll that is not how they do it at Massey. She explained how Hodgkins is very accepting of chemo and due to this it is a lot of doctors initial thought to blast patients with an intense round of chemo followed by radiation, which does work. However, now they are finding people are coming back 15 years later with other cancers and health issues due to the intense chemo. She explained this method is not bad for older people with the disease because they are trying to buy them 10 -15 more healthy years where as with young adults and kids they are trying to provide us with a lifetime of healthy living. As dad says, they want you to "live long and prosper," haha Oooo dad :). They have done studies with young people and have found that our bodies take it better to receive treatment by getting chemo in intervals, a little each day, vs. getting it all at once. She also said they like to treat each case individually, instead of treating all the hodkins patients the same she is addressing my hodgkins. So they monitor the drugs carefully and if one kind is affecting me too much they'll alter things for how they need to be. Therefor I would go into treatment day 1,2, and 3, then come back day 8 to check my vitals. We would then see how my body is handling everything and I would start again after 14 days or possibly 21 days, it just depends on how my body is.
Now this all makes a lot of sense and the more time I have spent talking it out and thinking about it I feel more comfortable with this method but yesterday I was not thrilled with the idea. It is very hard for me to think long term vs. short term. For me I heard possibly three days out of work every other week vs. the one day I was thinking it was going to be and that is all I could think about. * Side note: My work is extremely supportive, I honestly can not imagine working with more supportive people and they want me to do whatever will keep me healthiest regardless of the time it takes, its just me that gets the crazies about being gone.* I also had never heard of anyone doing treatment this way so I thought that was odd, cause you know in my 2 months of stalking everything about Hodgkins I have become an expert haha. However last night Carrie and I did some research about this type of treatment and we found articles from this spring and summer talking about this type of thing working well with Hodgkins. That just shows the benefits of going to a research hospital. So anywho I will definitely be going to Massey and doing the 3 day treatment, it will just take some time to get used to it but who knows, maybe this way will make me less affected by the different drugs. Time will tell!!!
We also found out that MCV has a building that does treatments out by Stony Point. Mom is looking in to see if I could possibly go there for treatments but still see Dr. Wiedl and just come down to the Massey building when I get my vitals tested and for appointments with her. Hopefully that will work out!
So that is my long update from yesterday! I feel like its all one long rambling session so I hope you were able to make some sense of it all. I will post again tomorrow after the bone marrow biopsy and hopefully after hearing the results of the PETscan.
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