Michelle's Story - AML Cancer - How you can HELP.

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Organizer: Michelle & Brian Lytsell Beneficiary: Michelle Lytsell (Lyons)

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My name is Michelle and here is my story. I’ll give you the long and short of it.

 

...Here’s the Short

 

Cancer sucks and is very EXPENSIVE... even with insurance.

 

Medically I am doing well. Financially we are not. We like most households were a two income family. I was diagnosed and hospitalized in December 2012 with AML Leukemia, and have been out of work since. With me not being able to work, and being down to only one income in our home the bills are building up. My husband makes enough money with cutbacks and careful budgeting for us to make on our household bills, But we do not have enough money to pay for all the medical expenses / bills (they have and/are turning us into collections), I am hoping to collect about $10,000 dollars to help pay for some of our medical expenses. We have been able to sell off some items to cover things so far but we have come up very short of our goal. I would greatly appreciate any help you can give us, even if it’s just a few dollars.

 

...Here’s the Long

 

I was not feeling well at all in the fall of 2012. I was having stomach pain, shortness of breath and was having problems losing weight. I finally decided enough was enough and I went to my family doctor. Several tests later no answer, on to my OBGYN, more tests… no answers, on to an Endocrinologist, lots of tests and you guessed it no answers. By now it’s just after thanksgiving and I’m still feeling fatigued, stomach issues and just not like myself. I remember calling my family doctor on a Friday (Dec 7th) and getting yet another appointment for the same issue and feeling very desperate for an answer as to what was wrong with me. I go see him at 2:00; he is still at a loss as to what is causing my symptoms. Due to the length of time and the issues I was having he sends me to the local ER for a CAT scan & testing. After months of testing we have an answer (I think) they find my left ovary and several limp nodes are enlarged and I have a large amount of fluid causing the pressure in my abdomen, which was causing the pain and shortness of breath.

 

I know what you are thinking… I thought she said she had Leukemia, stay with me I’m getting there. So after my emergency room visit and they refer me to an OBGYN Oncologist (lady parts cancer doc). After several more Doctor visits we decide the best course of action is to remove the offending ovary and/or a complete hysterectomy. Keep in mind I’m 33 years old with no children. My husband and I come to grips with what this means for us and surgery is scheduled for Wednesday, December the 19th. We go in on Monday the 17th for pre-op blood work, no problem we are in and out quickly. So Tuesday I start the prep required for Wednesday’s surgery (yeah that great gallon of liquid to flush you out) and the phone rings about three in the afternoon and it’s the Surgeons office saying they cannot do my surgery on Wednesday as scheduled. The nurse then proceeds to tells me I have an appointment to see a hematologist on Thursday for blood work. I’m a little upset about surgery being canceled but figure no biggie, we have the time off already so we’ll see this guy on Thursday morning then have a nice lunch out to celebrate my husband’s birthday and we’ll get rescheduled, thinking the lab messed up the blood work and just have to have it redone. Boy was I WRONG….  We go to the appointment and they draw blood and wait for the Doctor to come in. He arrives and begins to advise/discuss the fact that I have leukemia. (I remember thinking wait just a darn second here. I don’t have leukemia I have a bad ovary.) The Doctor leaves the room for a few minutes then comes back in and instructs us to go DIRECTLY to Northside Hospital and proceeds to ask if he should call for an ambulance, or if we can make the 50 mile drive to the hospital as they have a room ready for me, and will be waiting for us to arrive.

 

I checked into the hospital on December 20, 2012.  They place a picc line and started more testing.  I received my first round of chemo on Christmas day. Fast forward, the first round of chemo was able to get me into remission (yay great news), but the doctor comes back with the genetics on my Acute Myeloid Leukemia and I find out that I have a nasty genetic mutation which means It is highly likely the AML will come back and be much harder to get rid of next time. He offered us the option to just try a few more rounds of chemo and wait and see if/when it comes back, or try a bone marrow transplant. I choice the bone marrow transplant. I had to go through another round of chemo while trying to find a donor.

We received news that they found a donor. THANK YOU whoever you are. You saved my life!

I started yet another round of chemo (yep that three if you are counting) in preparation for transplant and I received my bone marrow transplant on April 11th. As of today my bone marrow transplant is working.  I still have a long road till I’m “normal” but I am alive.

All that said I still need frequent visits to the clinic/hospital for testing, fluids and blood. As for some reason my system is not producing its own red blood cells. My doctor assures me its all just part of the process, and to hang in there. It just needs time…

 

Thank you for taking to time to read my story, I will post updates as often as I’m able. I thank you in advance for your support.

 

Sincerely,

 

Michelle

Updates

Updates

01/17/2014
by Michelle & Brian Lytsell
port placement went well, sore and tender but I know it will heal, and I will no longer be a human pincushion. my counts also showed a little improvement. baby steps :)
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01/11/2014
by Michelle & Brian Lytsell

Update time...

 

Had nice quiet Christmas and New Year’s here at home much better than last year where I was in the hospital..  Not much else has changed on the day to day routine. Still receiving blood on a regular basis, my veins are not being very corporative as of lately so it become necessary for me to have another port put in (that happens on Thursday). It will help me not be a human pin cushion which is a plus, and should make clinic days go smoother.  

 

I’m working on trying to build my strength and endurance back up. So once I get the green light from the doctors I can get back to work and life as I once knew it (gonna be a while yet though)….  With it being cold and flu season I’m on serious lock down (Doctors & Brian’s orders)… so I find myself getting a little stir crazy, trying my best to keep my mind and hands occupied. I have to be extra vigilant on the rarity that I do venture out, cannot wait till I don’t cringe when I hear someone sneeze or cough.


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12/13/2013
by Michelle & Brian Lytsell
today was a good day. I was able to do something "normal", went and had lunch today with a friend... granted we picked it up from the drive thru and ate back at the office but it was nice to have a little time with a friend. medically nothing much has changed, still one day at a time.
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12/04/2013
by Michelle & Brian Lytsell

Sorry for the delay in updates…  I had my port removed, and was placed on thinners as a precaution, added a few other meds just for giggles...   Other than that it has been the same old same old… I’ve still needed a transfusion every week as my counts are still low. So you know I’m in a lather, rinse and repeat cycle… but in a good way :)  hope everyone had a great Thanksgiving we had a nice quiet dinner here at home.  I’ll do my best to keep things updated.


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10/29/2013
by Michelle & Brian Lytsell
clot update: things are progressing and medicine is working the way they hoped. The Swelling and pain has gone down to a bearable level. I'm on the books for it to be removed on Thursday after my bone marrow biopsy. I’ll post a longer update after I'm all done on Thursday... sleepy time is calling my name again.

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10/22/2013
by Michelle & Brian Lytsell
ugg...... lots of excitement this week. Thursdays clinic visit was normal (as normal as my clinc days get - unit of blood and a shot of procrit)  Saturday I attempted to flush my port and it gave me a few issues but was able to flush all three sections of my port. Saturday night we had a benefit fundraiser paint night at Out of The Blue Debut (thank you Lydia for hosting such a fun evening)  Sunday was an average day, but Monday was a doozie, it was time to flush my port again and this time I’m unable to get feedback out of the three lines, called the doctor on call and explained the issue. Doc said this is common and wants me to come in the next morning. I knew I have been on borrowed time with this port as they are normally pulled around day 100 and I just past day 190. sure enough after 190 days I developed a clot in my port. so the good news is I will have my port remove next week, the bad news is I still need it. so for a few weeks while we weigh our options I will be having the blood work done the old fashion way....  with needles (Ouchy)  and on top of all that I now have to starts of a cold too :( guess I'm in for a tough few days. will post again soon.

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10/10/2013
by Michelle & Brian Lytsell
Today’s update...  This week has been full of excitement, I'm going to leave out the negatives and just highlight the positive steps forward. Started off the week with the first two shots in a long series of immunizations(Ouchy!!! but I did get a lolly pop.... lol) Todays counts were low so needed a unit of blood. I received my schedule for tapering off my antirejection med, fingers crossed this will fix the blood issues but will take a few months to know for sure. I also received my schedule for my next bone marrow biopsy. Still no word on when I can have my port removed. I’m still just taking thing one day at a time.

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10/03/2013
by Michelle & Brian Lytsell

Counts a little better this week but still needed a unit of blood. Still not sure why my nausea has come back, but thankfully I can keep it tolerable if I take additional medication... yippie another pill


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09/26/2013
by Michelle & Brian Lytsell
Today’s test results explained a little why I was feeling so icky over the weekend. My counts dropped again…. Was hopping for additional improvement but atlas it’s two steps forward and one step back. So after more blood tests, a shot of Procrit and a unit of blood I was free…

Brian was busy today making a deposit in the karma bank. He donated two units of platelets. I’m so proud of him and thankful for all the people that donate blood and blood products. I encourage everyone to please take a little bit of time out of their day and donate today. Join the fight against cancer and donate platelets or blood now:

Click here to schedule an appointment now at Atlanta Blood Services’ appointment page: http://www.atlantabloodservices.com/appointment.php
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09/24/2013
by Michelle & Brian Lytsell
Feeling a little better after having a tough few days (nausea & queasiness) strong smells affecting me again.  Not sure what brought it on but glad I’m getting back to normal. Head back to clinic again on Thursday, with any luck I’ll just need the one unit of blood this week.
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09/20/2013
by Michelle & Brian Lytsell
Another day another unit of blood...  starting to show some slight signs of improvement, my counts were just a little better on Thursday. We have been busy putting the donations to good use this week. THANK YOU.... with what we were able to raise and the little savings we had left we were able to pay off three medical bills  (out of collections for now) WooHoo... still have several left but they are a little bit more manageable now. Thank you all the prayers and donations every little bit helps
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09/14/2013
by Michelle & Brian Lytsell
Today was a great day. We had a wonderful turn out for the benefit lunch at Mother’s Kitchen.  I would like to personally thank all of you (Especially Lucille & Jody) for coming and making it such a great success. I’m happy that we were able to introduce mothers cooking to so many of you that had not had a chance to experience it previously.  I’m feeling worn out after today but so very blessed. The money we raised today will go a long way, and relieves a ton of stress. THANK YOU.
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09/09/2013
by Michelle & Brian Lytsell
Stopped and talked to Lucille of Mother’s Kitchen today. We went over all the details for fundraiser on Saturday the 14th. Think we are all geared up and ready to go.... lets just keep our fingers crossed for nice weather. See you all soon!!
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09/05/2013
by Michelle & Brian Lytsell
Hurray!!! A little good news for the week. Received the results of my CT scan. All the chemo has shrank the ovarian mass back to almost normal so no surgery is required for now. Will still have to closely monitor the situation to make sure it behaves, but for now I’m ok. On the blood issue... no better no worse. Received another transfusion today... just need to stay the course.  On another positive note the Times Herald did a write up on the benefit that Mother’s Kitchen is doing for me next weekend. Yea publicity, I really hope this event goes well
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08/29/2013
by Michelle & Brian Lytsell

Update time again: I’m sorry if I sound like a broken record but unfortunately it is a slow process. My system is still fighting the blood its trying to make, requiring me to still get weekly transfusions. Being anemic is kinda my new norm but I’m doing ok with it.


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08/15/2013
by Michelle & Brian Lytsell
Hurray for Progress... (All be it slow) My blood issue showed a little improvement today. Still anemic but, my counts were a little better, still required a unit of blood. Which made for a long day in clinic (about 7 hours) I’ve been feeling a little stronger lately I’m pleased with that. I even made a simple dinner last night.
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08/01/2013
by Michelle & Brian Lytsell
Another day another unit of blood...  but good news they are finaly starting to see a little bit of positive movement in my blood... a few more weeks and i should be over this hump.
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07/29/2013
by Michelle & Brian Lytsell
Another day another unit of blood...  sorry the updates have been the same old same old.. but that is my life as i know it for now. just need to allow my body time to try and process the donor system.

Thank you all the prayers and donations every little bit helps.
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07/25/2013
by Michelle & Brian Lytsell

Spoke with the doctor today, nothing tangible to pass along. Just need to stay the course, one day at a time, but overall he is pleased.

It seems like lately I take one step forward and one to the side... been battling a fever for a few days, making me feel even crummier on top of still being anemic..  Started on yet another new medication today to help bolster my red blood cells (fingers crossed it works).

Did find out I’ll need to keep my port for several more weeks. As much as I would love to have it removed now, the thought of being a human pin cushion several times a week makes me love my port again… but that enough rambling from me.  if anyone has any questions for me don’t hesitate to ask.


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07/18/2013
by Michelle & Brian Lytsell

So today is officially day #98 after transplant. So far so good, the doctors are still pleased with my progress. Some days are much better than others. Today was an another clinic day (long day) needed my new med, bag of fluid and a bag of blood. My system is still fighting the transition to my donor’s blood system causing me to be anemic and need blood often…

All in all though it has been a good week, ready for a little R&R tonight. Tomorrow is another day…

 

P.S. I wanted to thank all of you who have donated to help us with my medical expenses, we have cans out at several area locations. I know most people think 25 cents will not make much of a dent but I can tell you first hand your “change” is a blessing to us. Today we checked on several of the cans we have out and we gathered enough to pay a medical bill payment for this month.  Thank You.


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07/08/2013
by Michelle & Brian Lytsell
Update since last week... we spent the 4th at clinic where I had to get yet another unit of blood.  hubby was sweet since we could not go out to see any fireworks this year he recorded the New York 4th of July special, it was neat to watch fireworks on television but not as nice as is in person.
 
Went back to clinic today... same old hurry up and wait few changes to my meds restart one and change the dose on the other... no blood today though :)  still looking into the new med to help with the blood issue – maybe later this week, in the meantime I'm fighting a little bug lets hope my system is strong enough so I don’t end up back in the hospital.

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07/01/2013
by Michelle & Brian Lytsell
Happy Anniversary to us... no real surprise we spent it in clinic... but today was a good day only needed two bags of fluid (kidney levels were still high), but no Blood needed today... now all we need to do is wait and see what trick my body does next...

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06/26/2013
by Michelle & Brian Lytsell
sorry for the delay in updating... it’s been a ruff couple of days, most likely going to be a ruff few more, but we’ll get through it.
 
Monday was a long clinic day – ran lots of different tests, ended up adjusted my meds gave me a unit of blood (still not sure why I cannot hold onto the blood)
 
today was more of the same – they did the bone marrow biopsy, ran the normal tests.  blood was low again...... so another O- cocktail for me,  with any luck I should have the results next week with a plan of attack. till then its just day to day.

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06/20/2013
by Michelle & Brian Lytsell
Another looooooonnngg day at clinic today. We still do not know why I'm having such issues maintaining red blood cells. Had a meeting with my doctor hoping to have some of my restrictions lifted... No such luck they told me because of the blood issue, still no driving and I still have to maintain a 24 hour caregiver for at least another 30 days. I don’t think hubby’s boss liked this much, but we knew it was 100 days from transplant....I was hopeful but it’s understandable as today is only day 70. They have scheduled me for a bone marrow biopsy on Wednesday to hopefully shed some light on the problem. Until then it’s just a matter keeping my fluids up, via units of blood and by drinking lots of water. 

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06/17/2013
by Michelle & Brian Lytsell
clinic went ok today. had to get blood again.... (starting to feel like a vampire)...  still trying to figure that little glich out. on the plus side my one test came back 100% on the myeloids and 93% on the lymphatic so i'm closer to being all donor
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06/15/2013
by Michelle & Brian Lytsell
enjoying a nice quiet day today at home... YEA...  have to enjoy the little things when we can.
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06/13/2013
by Michelle & Brian Lytsell
Another long clinic day today. I needed a unit of blood and some magnesium, then I had to head down a floor for a phenomena preventive breathing treatment. Thank goodness I only need it once a month because boy it was nasty!!! but once again the blood has me feeling better. I’ll update again soon but for now the storm is rolling in and I need to shut down the pc. 

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06/10/2013
by Michelle & Brian Lytsell
another day at clinic, feeling better. they changed a few meds and topped me off with fluid. sent me home told me to come back and do it again. my life sounds a bit like shampoo instructions, which is ironic considering i dont use any...
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06/07/2013
by Michelle & Brian Lytsell
Last few days have been pretty ruff, felling a little better after clinic today. I needed another pint of blood...cannot believe its been almost 60 days since transplant and I still need units of blood. Fingers crossed tomorrow will be a better day.

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06/04/2013
by Michelle & Brian Lytsell
Today was a good day at clinic, for the first time since transplant (some 50ish days) I finally did not need magnesium. Granted it has taken me taking 15 magnesium pills a day and drinking my green goo every day, but I did it YEA ME!!!

I also wanted to take a moment and thank all of you who have donated so far, your generosity is humbling. THANK YOU!!

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