Wednesday, January 7, 2009

no news is no news

Just a quick update on the tests this week. Really, they weren't that big a deal. I got a new hole in my butt (can I say "butt" here?), but it didn't hurt because the guy used enough numbing stuff to desensitize a cow. And I have been introduced to neat drugs like the fentanyl lollipop. I won't know the results of the tests right away - but I should know something no later than next Wednesday. Friday I'll have a port put in so that they won't have to stick me at every chemo session. One friend pictured this procedure as though I were a giant Capri Sun (don't squeeze Adam!). We'll see.

3 comments:

  1. Adam, you are such a beautiful person who has blessed SO many people's lives. It's our turn. God knows He can use you through this journey to glorify Him, and I know you will absolutely point back to Him. I don't know if you know that I worked at They Leukemia & Lymphoma Society for 3 years, but I would love to direct you to some resources that are beneficial to you and your beautiful family. You are not alone, God will never forsake you.. And you have so many people wanting to support you in any way possible - prayers being the most powerful! Please keep me updated on how you're doing!

    Amy Keener

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  2. Adam & Casey, Gary and I are praying for you constantly. We hope you know that. Sorry we have been missing you at church but after I saw you that day at the hospital I got a cold and was quarantined for a while. The port is wonderful. Mine is in my right upper arm and don't even know it's there anymore. The only time it even hurt was the 1st time they did the chemo and that was because it was still sore from just putting it in.

    You may know all this but what will happen is you'll check in at that desk right there by your Dr's office next Wednesday and set down and wait. Then you'll be called to the lab which is where I was coming out of when you saw me by the elevator. They will call you in, say "ready, 123" and punch a needle into the port. It's kind of like punching a stick pin into a wall for lack of a better explanation. I promise it does not hurt at all after the 1st time if you're even sore like I was. I got my port on a Monday and my 1st chemo that following Friday so I just wanted to let you know it might hurt just a little the 1st time so you would be prepared but after that it's a piece of cake.

    Next you will go to Dr. Cruz's office and wait because they can't do the chemo until they get your blood work back. That takes about an hour so don't think they have forgotten you.

    Then you see your Dr., he orders the chemo (if you can have it remember it depends on your blood work & there was 2 times I had to wait until my liver count went down) then you wait on the orders and go back to the check in desk and give them the orders. Then wait again.

    Then you will be called into the chemo room. Adam, it is not a sad place. Everyone sits around like in the orthodonist office.They take you in there and hook you up and then you might have to wait a bit longer until the pharmacy gets your medicine delivered. Then you get your chemo. The 1st time a nurse advocate will come in there and give you a bunch of information and spend about an hour of the time talking to you and telling you about the effects of the chemo, what to do, etc. It goes pretty fast but Casey you'll want to be there to hear it all because Adam they will give you benadryl in case there is an allergic reaction, pepsid for your stomach and probably 2 other tummy drugs so you may or may not remember a word they tell you.

    Then you get the chemo. Depending on what they give you the first time took me about 4-5 hours because they push it in slow in case there is a reaction. They tell you every single thing they are putting in your port and how long it will take to get it every single time. After the 1st time it took about 3 1/2 hours total but I was there all day between the wait to go to the lab, dr's office, wait on the blood work, see the dr, wait on the orders, wait to be called to the chemo room, wait on the medicine, etc. They bring around snacks and drinks all the time and serve sandwiches, chips & a snack at lunch time. Casey, some people bring in food but really I just always gave Gary half my sandwich and we were fine. Needless to say neither one of us was ever that hungry and after the 1st time we would go by and get breakfast of some kind and eat it while we were waiting to see the Doctor.

    Anyways, sorry such a long post. I can't tell you I know what your going through because mine was totally different and my tests were all back and they knew the whole treatment plan before I ever had my 1st chemo. I can tell you though what will happen when if you have the same things done (IE: Port, chemo, radiation, etc) as a current patient and maybe help to ease some of the anxiety. It's all so scarry and until you have the 1st round it's pretty overwhelming.

    We love you guys and are right there with you. I see the doctor on the 13th and then have Herceptin (it's a chemo drug but not like real chemo in that it doesn't take but 30 minutes to put in and something I have to have for 6 months so my port will stay in that long) then will see the radiologist to find out about starting my radiation. I was tempted to ask if I could come on the 14th instead so we would be there at the same time but I'm afraid I would miss you because I won't be there very long and probably gone before you get to the chemo room.

    Just one more thing about the chemo. After you have it, either right after or the same day, you'll have to have a shot (not in your port) that makes your bone marrow produce more white blood cells. It makes you hurt, like the flu, so take whatever they tell you to for pain & it will go away. Also, take the nausea medicine the 1st 3 days even if you don't feel sick because if it gets out of hand and you start getting sick (stomach bug kind of sick) you can wind up in a mess like I did that 1st time. Also, they gave me a different medicine after that 1st time that kept me from actually throwing up (I know that is gross but I want you to know) and I got nauseous after that but never as sick again so ask about it if you do get sick.

    The only other thing I can think of right now is after the chemo you may have to go back weekly for blood work. If your blood count drops below a certain level they will give you another shot to build it back up.

    Basically this is probably more then you even cared to know about my port and chemo but I want you both to be more prepared then Gary and I were. Leslie had told me a lot and helped me a lot but every bit of information anyone can give you will make you be so much better prepared. I have a very weak stomach, so you may just breeze through this and never get sick which is exactly what we are praying for.

    We love you guys so much and God is going to get you through this. You guys have so much love for the Lord and each other and so much support just like us and I know together we can all do this. It totally puts a whole new meaning on our "do life together". It'll just give us such great testimonies to be able to help others like us just like Leslie, Renea, Rosanna and everyone helped me.

    Know we are there for you and if either of you have any questions please don't hesitate 1 second to call.

    Sheila and Gary Kirby

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  3. I hope it's not like a Capri Sun ... I can never get the dang straw in those.

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