I totally forgot to write about last week’s doctors visits…
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#1. Dr. R…radiology oncologist…I talked to her about the pros and cons of consenting to the radiation treatments…cons; it is EVERYDAY, a couple of weeks into it my throat will feel like food is sticking, my neck and chest may get red (which will result in stopping treatments for a while), there is an increased chance of getting breast cancer, fatigue, and aches in the neck…pros; killing what (if any) cancer that is still hanging around…
most (if not all) of these are no more severe than the effects of chemotherapy…actually most of them are much less severe…so in the interest in being practical I will start radiation treatments next Tuesday (November 30th)…
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#2. Dr. M…oncologist…we just discussed my bloodwork…it seems to be getting somewhat better…he decreased my steroids by half (which is exciting)…but he was very clear to say that he does not thing we are done with this whole hemolysis thing…so we wait…I continue to get regular bloodwork, and have appointments with him every other week…
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I’m nervous about starting radiation…I think that is why I have been a little jittery, anxious all week…yesterday after work it took me FOREVER to get tired and get to sleep…it is catching up with me right now, and I am sure I will sleep well tonight…
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I have noticed a marked difference in my energy level the past couple of weeks…it has been SO NICE…I feel the healthiest I’ve felt in over a year…I know this will not become ‘normal’ for me until after the radiation treatments are over, but it is nice to have a taste of the future…
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I hope everyone had a great Thanksgiving…have you put your Christmas decorations up yet? I think mom is getting the decorations down this afternoon, hopefully this energy will stay until next week so I can decorate the house…
This year,
I think,
I am really only allowed,
to be thankful for one thing…
because this is who I now am…
forever changed…
emotionally…
physically…
mentally…
and
spiritually…
better than I was before…
emotionally…
physically…
mentally…
and
spiritually…
Happy Thanksgiving!
Robin said...Happy Thanksgiving to you and your family!
Told to the nurse taking my blood: I’m in remission
To my new co-workers: I’m in remission
Announced, by the pastor, to the church: She is in remission
To my Sunday School class: I’m in remission
In an e-mail to my aunt: I’m in remission
In a card to my uncle: I’m in remission
To myself, over, and over, and over, again: I’m in remission…I’m in remission…I AM in remission…I am IN remission…I am in REMISSION…remission…remission…remission…remission…
no matter how many ways I try it on…the phrase ’I am in remission’ fits like a pair of gloves that doesn’t keep out the cold…you wear them because they are cute…you wear them because you are in a hurry and they are the first pair you see…they are not the gloves you go to when it is –10 degrees, and the ice is 1/4 of an inch deep on your windshield…they are not the gloves you wear when you shovel the front walk, or use to keep your hands dry when wiping the snow off your car (because your trunk is frozen shut and you can’t get to the snow removal brush…)
remission sounds great…it is pink and versatile (converting from finger gloves to mittens)…you show it off (“see my new gloves?”)…you might even get a matching scarf (“the doctor says my cancer has shrunk so completely there is NO scar tissue”)…it is something you buy on sale…the expense doesn’t do much to the budget…but they do a lot for your attitude…
it is not the waterproof pair…the pair that keeps your hands warm when the wind is biting…the pair that does not let the snow and cold in…that word would be CURED and that won’t come for 5 years and a lot of tests from now…
the word remission does not erase the emotion of the last year…I mean the cancer was aggressive…it TOOK OVER my face, neck, chest, and abdomen…it stopped me from being able to breathe or swallow…and caused me to cough up blood for days…having something so completely take control of your life, WITH OUT YOUR PERMISSION…messes with your head…
as I continue to get comfortable with this new word…remission…I can feel the stress of the last year start to slowly melt away…with each opportunity I get to share with someone the good news…it becomes less fake and more real…and one day soon…I will tell someone, or myself that ‘I am in remission’…and I will FEEL the excitement that I see on others faces…I will allow the thick skin that has built-up to thin out…I will cry, I will…but this time not because I am scared…not because I can’t breathe…and not because I am coughing up blood…but because I am relieved…the kind of relief that I think a parent feels when they find their child after having lost them in a crowd…
I will allow myself to exchange the pretty pink gloves for the practical waterproof pair…because I want to be warm again…
and in being warm…I will allow myself to expect more out of life…I will allow myself to start implementing all the lessons I have learned (and there are MANY)…and I will find purpose in the process…
4smartmonkeys said...I'm super happy for you!!!
November 10, 2010 at 7:47 AM Rachel said...I am so thrilled to hear that you are in remission. You have walked a journey -- with bravery, faith, hope and joy. I am really, really proud of you.
November 11, 2010 at 1:21 AM elena said...Such wonderful news! :)
November 11, 2010 at 10:06 AM Lynnette Kraft said...PRAISE GOD!!!! What wonderful news April! So so glad I stopped by and read that. Just keep on rejoicing and hollering out - I'm in REMISSION! :)
Love,
Lynnette
“I have nothing but good things to report” ~Dr. M
today I am OFFICIALLY in…
REMISSION
now, what does that mean?
good question…
it means that there is no sign of cancer anywhere…the PET scan was clean…Dr. M said that the masses have shrank so completely that there is not even residual scar tissue…
it means my hair will get a chance to grow back…
it means that for the next two to three years I will be scanned, every three months, to make sure there is not a reoccurrence…then we will move to once every six months until the five year mark…at five years I can proclaim that I am CURED…I am sure after that there is a yearly check-up for the rest of my life…these scans will settle my heart I am sure…
it means, never again will my face look like this…
it means that lymphoma will never again get a chance to grow un-yielded, because WE ARE WATCHING…
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Next week, I have an appointment with the radiologist…She wants to see and treat me on the same day…so next week should start my month of radiation treatments…Dr. M hinted that he thought I may not need radiation butalas it looks as though I will…
what does that mean?
it means that side-effects are not done…the radiation will make me very tired…
it means that I have to lay there without a shirt on while people zap me with…well, I know that it is radiation but I don’t really understand what it is…I think I need to do a little research…
it means that we will be making sure that any traces…seen or unseen…of lymphoma will be killed/buried/and stomped on…
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my blood counts are still not normal and will continue to be monitored…I will remain on the one pill of prednisone and one pill of folic acid a day to keep it under control…and come in for blood work once a week…
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Dr. M. said that the tiredness and lightheadness I am experiencing is not because of the abnormal blood counts…he attributes it to my body adjusting to being without chemo…it can apparently take months to really get back to feeling like you are healthy again…
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Emotionally, I am kind of numb…happy, but numb…I’m sure a feelings post will come soon…
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I don’t know if I covered everything or not…if you have a question feel free to ask...I am tired and sure that I forgot something…I can always come back and edit right?
here I am on remission day! see the beautiful tree behind me? almost all the leaves have fallen…so we will enjoy the bright colors while we can!
Pretty Little Paper Love said...YAY! Congrats! I'll continue to keep you in my prayers for sure! My dad battled hodgkin's lymphoma at our age, so I'm always worried for myself too. Keep strong!
Anonymous said...YAY YAY YAY! I would have called you back, but didn't have your new number with me when i turned my phone on after work. By the way, I laughed that you typed 'shit' instead of 'shirt'. HA HA
I validate your remission!!!!!!
Robin said...Yay!! So happy! I sent you a text, but I must not have your new number. Maybe next time!
Amy @ Finer Things said...Remission! You win "finest" news of the week. :)
Robynn's Ravings said...Honey, I'm so happy for you (though you still have some yucky things to go through). What GREAT news! Thanks for contacting me and I'm still not able to sit and battling 8-12 hrs of pain a day. But when I see your struggle I count my blessings and try to learn the lessons God is teaching. Thank you for sharing answered prayer!!!!
P
Amy said...Woooooohoooooooo! I'm so happy to read this post. Love ya!
CindyC said...Hooray! Praise God! :)
JoyAnne said...Yay! Giving God the glory!
heather said...YAY!!!!!!!!!!!!!!!!!!!!
Still praying :)
Share said...CONGRATS!!!! I am so happy for you!!!
Nothing but good things ahead!!!
Lily Lestrange said...Wow, I am SO happy for you! I've followed your blog for a while now and to see that you won't have to suffer this for much longer makes me so happy, I'm glad you're getting better and I hope everything goes well for you!
Lily x
Rachel said...Congrats again!!!!
When Todd went through radiation he told our kids that he was secretly being made a super hero -- think spider man. :) He was very tired from it. The scatter radiation made it difficult to eat. His radiation doctor recommended blackberries to combat the nausea. And they worked.
Praying for nothing but good. :)
most of what I have been doing is this…
SLEEPING LIKE A
BABY!
Seriously, I’m not even trying…I went to bed around 12 last night and didn’t wake up until 4:30 this afternoon…I’m not even sure I got up to go to the bathroom in that time…and I used to always get up to use the bathroom when I sleep…
The biggest things I’ve accomplished is changing my sheets, washing all my clothes (just one load) and doing the dishes a couple of times…I am certainly not trying to win any awards this week am I?
Tomorrow is my appointment to discuss the PET scan results…
Hair…my hair is still falling out…I don’t understand why…I haven’t had chemo in over a month…ok well I just checked and it has been three weeks…so maybe this is how it should be…either way I don’t like it! and remember when I said the best thing about being bald was NO bed head…well now that it has grown back a bit, I have constant bed head…I didn’t see that coming…
SIX…
it took six tries and a hour to get a vein yesterday before my scan…and FIVE veins on my left arm blew…that is a total of SIX blown veins in a week…the only explanation has to be that the anemia is doing something to my veins…cause this has never happened before…
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This might sound weird but I think God prepared me for it…on Thursday I decided I was going to have a ‘Good Attitude Day’ Saturday…I was not going to be annoyed if I had to wait…I was going to be nice to and patient with everyone…and I was…I wasn’t bubbly by any means…but I did not have an attitude…it isn’t their fault I had to get this test on a week I work…it isn’t their fault if I have to wait a while…and they don’t deserve my frustration…things need to be done right, I’m not at a store, I’m in a hospital, people matter, and I am not always the first or the most important…I am thankful for the preparation…God knows me…knows how I work…and is teaching me…everyday…
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I like nothing more than to be a human pincushion, and having a snake of bruises up my arm…they are not as bad as the first bruise but I definitely look like I’ve been abused…I have to go Monday morning for more blood work…here’s hoping that they can find a vein that will give blood!
Anonymous said...All the stuff you're going through BITES! I'm proud of you for working on a good attitude. Sooooo not easy under the circumstances. I have a package to mail you, hopefully tomorrow. Jana
JoyAnne said...Oh your poor arm! Keep running straight ahead! You're a survivor!
Share said...Oh. My. Goodness. I praise you for your patience! There is no way that could have enduredthat and not had attitude with everyone!!! Well Done!
Got my first blown vein Tuesday…
can we say ‘April gets her blood taken too much’? I know it is not an unusual thing to have happen but…it was weird…you get a big bubble of blood under your skin and then it is bruised for a while…isn’t it pretty?
the doctors appointment was…interesting, I guess…Dr. M discussed with Dr. R (the hematologist/oncologist from IU) my blood test results…they decided that the higher numbers are probably due to the hemolytic anemia and not the lymphoma…Dr. M said that what is happening is not something typically associated with remission…that this anemia stuff isn’t related…
so, from what I understand (which isn’t much) this may or may not have happened whether I had gotten cancer or not…he is going to keep an eye on my numbers (ie; blood work every other day) and most likely start me on the crazy high dose of steroids again early next week…LUCKY ME! side-effects heaven on my week off…
He said that it would be a few weeks of keeping an eye on my blood counts to see if getting my spleen removed is what is required…IF they can do it laparoscopically I would be in the hospital for two days and then the recovery time…because of my weight they may have to take it out by opening me up…that would require longer in the hospital a week of rest and then being careful for a while…
My recent CT scan came back clean…no signs of lymphnodes…but it did show an enlarged spleen…
I get my PET scan Saturday morning at 7:45…I am NOT going to get much sleep that day…I have to kill an hour and a half between getting off work at 6 and my appointment then it will probably be 11 before I get done…then I get the privilege of going home and trying to sleep…before going back to work at 6…but I’m not complaining…nope, not me…I’m pleasant…heck…I’m even cheerful when I don’t get enough sleep…
this is Wednesday, and it feels like the week is going so very slowly…I had three people at the cancer center tell me I looked really tired…I guess it is showing…I guess I am not trying hard enough to hide it…
the house I am in right now is more physically demanding than I am used to…I have to get the client up every two hours to use the restroom (she is in a wheelchair, but is able with a little help move herself from place to place)…and the entire house is linoleum, which is a bear to sweep/mop…my back and neck ache for the first time in over a year…and tonight she did not want to sleep....
I also asked the doctor if I was still going to get a month of radiation and he said it was on hold for a while...but I will probably still be getting it after the anemia stuff is figured out...
hey! did you catch how casually I threw the word REMISSION in there? Yeah, that is how the doctor said it...just in the middle of conversation, like I already knew this information…I didn’t know I WAS in remission…you would think that is something that would be more formally discussed…not so sure how I feel about it…I am going to see him next Thursday to discuss my blood counts and the results of the PET scan so I will be sure to more pointedly discuss this Rword he just so casually threw around…and if it is a concrete thing or not…
Amy said...Wow, April, thanks for the update! I had been wondering about your PET scan. I had an earlier date written in my prayer journal. I guess they ended up pushing it back. I have been wondering how you are doing this week and continue to lift you up in prayer daily.
JoyAnne said...Wow, Remission. That's fab! You're near the top of the mountain, keep climbing lady!
Blood work and appointments…
I have been getting blood work twice a week to keep an eye on the anemia…apparently the results from Thursday were concerning…because today we got a call from the cancer center stating I had to start steroids (again) TODAY (they said it was important I start them today) at least this time it is not such a crazy high dose…they also said that the doctor wants me to get more blood work on Monday and then to see me for an appointment on Wednesday…
I’m a little freaked out by this…I was not supposed to see the doctor again until after my PET scan on the 30th (to discuss the results)…what does he want to talk to me about? he never does anything in the appointments other than press on my stomach asking if it hurts…
so we begin another time of waiting…
waiting to see what the doctor has to say, what specifically his concerns are with the blood work…
waiting to see what the next step will be…
waiting for life to get back to some kind of rhythm…
also, what sucks about this impromptu appointment is that I start my new hours next week…I will now be working 7pm to 5am…and it is stressful for me to figure out a good time to have an appointment…BLAH! and since he isfitting me in on Wednesday I will most likely be waiting a while no matter what time I schedule the appointment…
Amy said...April, looks like my laundry pile!!!! As always, enjoyed your post.
Here are a few shots from yesterday…
our beautiful trees…
leaves changing color daily…
blustery seems to describe the weather,
and how I felt mentally and physically…
it was a chili kind of day so I went to the store to pick up some beans, sauce, and ground beef…between getting to the store, and carrying the groceries in I could not breath…I also had a bit of a breakdown when I wanted to change my sheets and didn’t have the energy…
it is so frustrating, day after day, the feelings of inadequacy this cancer brings…
inadequacy in not being able to work regularly thus, inadequacy in not being paid regularly
inadequacy in regularly not being able to do ‘normal’ things around the house
make my bed (ie; change the sheets)
wash the dishes
walk the dog
clean the bathroom
cook
inadequacy in not being able to be emotionally genuine to myself or others
inadequacy in not being able to support others in my life (ie; be the friend I know myself to be)
inadequacy in not being the support to my mom I wish to be
inadequacy in not always wanting to always get out of bed
inadequacy in not having the energy to help in the running of errands or shopping
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. -2nd Corinthians 12:9
GothBarbie said...Hello~
i wish you didn't have to feel inadequate - but i am sure no one is looking at you and thinking you are inadequate right now!
We are all always our own most harsh critics, so think if someone else was going through what you are - what would you expect FROM THEM? then maybe try to only expect that from yourself!
Try to treat yourself like you would treat your best friend! It might help!
Best Wishes - ALWAYS!
Sara
JoyAnne said...Yes, His grace is enough. My, aren't we blessed!
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