Recovery from Acute Myeloid Leukemia
Donation protected
Hello everyone, my name is Debbie and I was diagnosed with Acute Myeloid Leukemia in February 2021. This is one of the most deadly forms of cancer with only 1 in every 4 people surviving. I hope to be the 1 in every 4. I hope to be the 25%. I am writing this post on November 7 which means I am now surviving 9 months and 7 days since my diagnosis.
Before I go into the details of the medical part of my journey, I want to share the most important lesson that cancer has taught me.
It is that we must act out of love, not out of fear. It is that life is too short to be anything other than entirely real, entirely transparent, and entirely brave.
Another thing I would like to say is that it’s important to let minor things go, because once faced with any life threatening situation, the people and the things that are of utmost importance will become perfectly clear.
I promise you that when facing the inevitability of our mortality, the minor inconveniences or stresses will no longer matter. All that will remain is love. So please live your best life in honor of everyone who does not always get another chance at life. Please live with honor and integrity, cherishing the value of life itself.
I used to worry about the littlest things. I did not realized how blessed I was or how easy my life was compared to now. I used to take situations for granted. But now, I try to appreciate every moment to the utmost. Even the heartbreaking moments, I try to honor those for the lessons contained within them. Above all, the first thought that has entered my head each morning that I’ve woken up ever since my diagnosis is “I’m alive. Thank you” and I hope to continue never losing that gratitude.
A basic list of things this fundraiser would be used towards include:
Returning back to my medical story, I was taken by ambulance from the emergency room at Carle hospital on February 1 to Chicago, and was told that I would likely not live more than a few weeks due to the aggressive nature of AML, unless I began immediate treatment and unless that treatment was successful. Suddenly at 30 years old I was hearing from multiple doctors, chaplains, counselors, etc, that I would soon be losing my hair, might soon become infertile and unable to have children, and might soon be losing my life.
My entire focus became trying to make it through one hour to the next of getting better. I experienced respiratory failure in February 2021, a few days after my diagnosis , as the cancer spread to my lungs and they began filling with fluid. The pain I felt in my lungs and chest just from standing upright for a few steps to move from chair to hospital bed became too much to bear, it was the feeling of drowning as my lungs filled within fluid. Within a few days, I became to weak to roll over in bed and could no longer walk. I was transported from my hospital bed into Ct machines on an inflatable raft since I could no longer walk due to the respiratory failure. Until my real chemo began, I was given 12 chemo pills a day, which is about 7 times higher than the average dose.
Then, the first round of actual chemo began on February 11, 2021 for 5 nights. The intensity of the nausea I experienced is hard to describe. I went a week and a half without being able to keep any food or drink down and within a few weeks, about 75% of my hair was gone.
Those nights alone in the hospital were the truest test of my strength, integrity, and character that I’ve ever endured. I didn’t even know that amount of fear was possible. I didn’t know it was humanly possible to experience so much discomfort, so much fear, so much stress, so much “what if’s”, and to still be alive.
Through the next few months, I went through 7 rounds of that chemotherapy, a regime of chemotherapy that is considered one of the most aggressive and intense that a person can endure. This type of chemo regime had not been done in 14 years at Carle hospital in Urbana, and so I had my chemo admissions at Northwestern hospital in Chicago.
I was eventually released from that first admission on March 9, 2021 but had to go through all 7 rounds of chemo in order for the best chance of survival. Unfortunately during those next few months I experienced many complications during the way including pulmonary embolisms and meningitis (the meningitis was caused from the brain swelling a few days after I had chemo injected into my spine to try to prevent the spread of the cancer to my central nervous system and brain) and eventually saw signs of the effect of my immune system being wiped out including bacterial folliculitis and I now currently have the shingles.
Additionally this year I found out I have swollen optic nerves and was warned that I may experienced partial or full vision loss at some point in my life. I have been on a drug twice a day to try to reduce the amount of fluid around my brain to try to reduce the swelling on the optic nerves, with an overall intent to preserve my vision. Additionally this year I've unfortunately had to have been put into a state of menopause, to try to preserve my fertility during the chemo treatments. It is hard to describe what going through menopause at age 30 feels like. My gynecologist won’t check any hormone labs until approximately May 2022 because she knows that everything is out of control right now hormonally in my body due to the menopause caused by Lupron shots. Some people who go through chemo can have their eggs extracted and preserved before chemo. But unfortunately, that was not an option for me because it takes several weeks to undergo the egg extraction process and I was advised that if I did this, then I may die in the meantime when waiting for chemo. So, sadly, one of the hardest choices I made this year was to try to preserve my own life instead of trying the most secure route of preserving chances of having a baby. The amount of grief I experienced about that throughout the cancer treatment is profound. Please pray for cancer patients especially young adults because we go through more than can be put into words.
While the amount of physical pain I have experienced this year has been intense, and there are no words to describe what the intensity of chemotherapy feels like or does to the body, there were unfortunately a few events that were even more painful emotionally. some of you may know I went through a highly traumatic event this summer of my car being stolen and vandalized in Chicago. The vehicle was thankfully located but the car experienced over $6,000 of damage, but not enough to be totaled. I am still dealing with trying to recover from the expenses I paid out of pocket during the 3 months it took for the car to be repaired (part manufacturing delays due to covid) for rental cars, bus fare, Lyft fare, etc during the 3 months that I was without a car, and unfortunately my car is still having issues and so I’m paying for the gas to take it back and forth to the service center in Chicago to have it evaluated. (Car insurance will only consider paying for supplemental repairs if car goes to the original service center which is in Chicago).
Having my car vandalized in such a personal way (so many personal items were taken from the vehicle, and the entire wiring system and engine system of the car was cut apart and stolen), took a major toll on me. My independence was taken away, and that was one of the only things I still had control over, because a cancer diagnosis makes someone feel like their control is gone.
However no matter how much I went through physically, nothing was harder this year than the emotional pain of losing my home. My lease on my apartment ended on July 29, 2021 and everything was moved out into a storage unit where it still is. I have been staying with my sister who has graciously welcomed me into her home, however human nature kicks in at times where I can’t help but wish to have my own home again to start over and have a safe, clean environment in which to recover and even begin to process what all I’ve been through.
I only have 4 main wishes now.
1 is that I remain in remission from the leukemia. 2 is that I can please receive help financially so that I can move into an apartment again and try to reestablish a whole new start in life. (Costs of hiring movers to move my furniture etc out of storage unit into apartment, cost of uhaul, cost of security deposit and first month’s rent, cost of continuing to pay for storage unit until I move). 3 is that I can please receive help financially so I can catch up on bill payments (phone payments, car insurance, credit card bills etc) that became out of control when I was on unpaid sick leave.
My other main wish cannot be classified by a number. It’s a wish that contains all my hopes and dreams, but it is overall that I can live. That I stay alive. That I heal. That I recover. That I can feel like myself again. That I can have even just one more day, to start over and to live entirely based on love, to be the best human possible, to never be mean, rude, selfish, spiteful, hurtful, or wrong to anyone for all the days of my life.
Some people never reach a state of remission from cancer.
Those that do, like me, live with the constant awareness that tomorrow isn’t promised, we are constantly aware that our cancer could come back at any time, so we must live for today and try to enjoy life to the best of our abilities.
However, the reality is, that a lot of things require money in order to do them.
it all requires finances, and unfortunately our medical system and society is not set up to help people financially when they undergo cancer treatment. I chose to face the consequences of having no income during active treatment, because I knew saving my life was more important than money. To those who wonder, I was unable to work even remotely because I spent almost all day, every week, in hospitals having blood and platelet transfusions, in between admissions, and was not permitted to utilize public wifi to work or to work while actively receiving transfusions due to the constant interruptions of having my vitals checked, etc during the transfusions. Also, if I had worked even one hour officially on the clock, it would have pushed back my disability application qualifications by months and months because they require you to be unpaid and off work for months before you can even qualify for disability.
In this fundraiser, am asking for any financial donations possible as I try to recover from the financial strain of how I went 7 months without a job based income as I battled to save my life.
No donation is too small, it all is very helpful, as the expenses of having a cancer diagnosis are different from what one would initially expect.
It’s not just medical bills that patients go through with cancer.
It’s prescription drugs (not all copays are covered), it’s the cost of parking in the parking decks of hospitals, it’s the cost of hotels when sleeping after being released from admissions and being too tired to safely drive 3 hours back to my sister’s house.
Even the cost of obtaining medical records to apply for disability through university of Illinois is my out of pocket responsibility.
The sad reality is, it is very expensive to be sick.
I am currently waiting the results of my most recent bone marrow biopsy to find out if I still remain in remission. During an appointment in a few weeks I am going to find out the results and if I am in remission then they will remove the PICC line from my arm which goes into my heart, the PICC line through which I received chemo, blood and platelet transfusions, and countless intravenous medications. Therefore, in a few weeks, the “training wheels” might come off, and I might be truly set free by my doctors to begin living my life as a normal person again, who can hopefully heal and recover in every way, physically, emotionally, financially, etc.
However, even though active treatment will hopefully be over, I’ll still be facing the estimated 12 month recovery time to regain muscle mass and to go through physical therapy from the effect that chemo has on the body. I’ll also unfortunately be facing the fact that chemotherapy can cause long term problems such as heart failure or problems with the lungs, liver, kidney, nerves, and all systems of the body. One of the chemo drugs I received is a neurotoxin and I will be seeing a neurologist and cardiologist to watch for impacts on the body long term.
There is much more I could say here in my story. I don’t even remember all of what I’ve gone through this year, I just know it has been so traumatic and so hard. Some of you know how deeply I battled with depression and anxiety this year as I grieved and fought so many silent battles. Being able to start over is all I want in life now
Every donation will mean so much to me. You will truly be saving my life as you help to further lift the burdens and pain that I’ve been carrying all year.
If you do not wish to donate online, please feel free to message me or contact me directly.
For anyone unable to make a donation, thank you so much for your time spent reading this message.
And to everyone, Thank you with all my heart for your generosity.
~Debbie
Before I go into the details of the medical part of my journey, I want to share the most important lesson that cancer has taught me.
It is that we must act out of love, not out of fear. It is that life is too short to be anything other than entirely real, entirely transparent, and entirely brave.
Another thing I would like to say is that it’s important to let minor things go, because once faced with any life threatening situation, the people and the things that are of utmost importance will become perfectly clear.
I promise you that when facing the inevitability of our mortality, the minor inconveniences or stresses will no longer matter. All that will remain is love. So please live your best life in honor of everyone who does not always get another chance at life. Please live with honor and integrity, cherishing the value of life itself.
I used to worry about the littlest things. I did not realized how blessed I was or how easy my life was compared to now. I used to take situations for granted. But now, I try to appreciate every moment to the utmost. Even the heartbreaking moments, I try to honor those for the lessons contained within them. Above all, the first thought that has entered my head each morning that I’ve woken up ever since my diagnosis is “I’m alive. Thank you” and I hope to continue never losing that gratitude.
A basic list of things this fundraiser would be used towards include:
- Medical records costs that I still owe for the medical records I had to obtain from multiple hospitals to send it for my disability application process
- Prescription medicine costs for medicines that aren’t totally covered by insurance or by leukemia co pay assistance, including Acetazolamide for my swollen optic nerves and for antivirals, antifungals, and antibiotics that I will need to be on for at least 6 months post-chemo as my immune system recovers.
- Parking deck costs at hospital at Northwestern hospital (patient rate recently raised to $13 for less than 8 hours or for $28 for 8 to 24 hours)
- Medical supplies such as pain relieving patches, lidocaine pain relieving over the counter creams, etc.
- Catching up on bills accrued during active cancer treatment such as: storage unit costs from losing home, cell phone bill, car insurance bill, dental insurance bill, etc.
- Medical co-pays not covered by insurance. Examples: I currently owe $766 to one hospital and $375 to another hospital
- Getting a home again: Such as Security deposit and first month’s rent
- Costs associated with moving: Uhaul and hiring movers since I am not allowed to lift over 10 pounds
- Miscellaneous expenses: including getting my car back in proper working order after the vandalism from Chicago (see further on in this post for details)
- Miscellaneous expenses: including staying in a patient discounted rate of $79.99 plus tax hotel in Chicago on nights that I am up there for appointments. Unfortunately due to the COVID pandemic, the American Cancer Society no longer has free stays at any hotels for cancer patients.
My entire focus became trying to make it through one hour to the next of getting better. I experienced respiratory failure in February 2021, a few days after my diagnosis , as the cancer spread to my lungs and they began filling with fluid. The pain I felt in my lungs and chest just from standing upright for a few steps to move from chair to hospital bed became too much to bear, it was the feeling of drowning as my lungs filled within fluid. Within a few days, I became to weak to roll over in bed and could no longer walk. I was transported from my hospital bed into Ct machines on an inflatable raft since I could no longer walk due to the respiratory failure. Until my real chemo began, I was given 12 chemo pills a day, which is about 7 times higher than the average dose.
Then, the first round of actual chemo began on February 11, 2021 for 5 nights. The intensity of the nausea I experienced is hard to describe. I went a week and a half without being able to keep any food or drink down and within a few weeks, about 75% of my hair was gone.
Those nights alone in the hospital were the truest test of my strength, integrity, and character that I’ve ever endured. I didn’t even know that amount of fear was possible. I didn’t know it was humanly possible to experience so much discomfort, so much fear, so much stress, so much “what if’s”, and to still be alive.
Through the next few months, I went through 7 rounds of that chemotherapy, a regime of chemotherapy that is considered one of the most aggressive and intense that a person can endure. This type of chemo regime had not been done in 14 years at Carle hospital in Urbana, and so I had my chemo admissions at Northwestern hospital in Chicago.
I was eventually released from that first admission on March 9, 2021 but had to go through all 7 rounds of chemo in order for the best chance of survival. Unfortunately during those next few months I experienced many complications during the way including pulmonary embolisms and meningitis (the meningitis was caused from the brain swelling a few days after I had chemo injected into my spine to try to prevent the spread of the cancer to my central nervous system and brain) and eventually saw signs of the effect of my immune system being wiped out including bacterial folliculitis and I now currently have the shingles.
Additionally this year I found out I have swollen optic nerves and was warned that I may experienced partial or full vision loss at some point in my life. I have been on a drug twice a day to try to reduce the amount of fluid around my brain to try to reduce the swelling on the optic nerves, with an overall intent to preserve my vision. Additionally this year I've unfortunately had to have been put into a state of menopause, to try to preserve my fertility during the chemo treatments. It is hard to describe what going through menopause at age 30 feels like. My gynecologist won’t check any hormone labs until approximately May 2022 because she knows that everything is out of control right now hormonally in my body due to the menopause caused by Lupron shots. Some people who go through chemo can have their eggs extracted and preserved before chemo. But unfortunately, that was not an option for me because it takes several weeks to undergo the egg extraction process and I was advised that if I did this, then I may die in the meantime when waiting for chemo. So, sadly, one of the hardest choices I made this year was to try to preserve my own life instead of trying the most secure route of preserving chances of having a baby. The amount of grief I experienced about that throughout the cancer treatment is profound. Please pray for cancer patients especially young adults because we go through more than can be put into words.
While the amount of physical pain I have experienced this year has been intense, and there are no words to describe what the intensity of chemotherapy feels like or does to the body, there were unfortunately a few events that were even more painful emotionally. some of you may know I went through a highly traumatic event this summer of my car being stolen and vandalized in Chicago. The vehicle was thankfully located but the car experienced over $6,000 of damage, but not enough to be totaled. I am still dealing with trying to recover from the expenses I paid out of pocket during the 3 months it took for the car to be repaired (part manufacturing delays due to covid) for rental cars, bus fare, Lyft fare, etc during the 3 months that I was without a car, and unfortunately my car is still having issues and so I’m paying for the gas to take it back and forth to the service center in Chicago to have it evaluated. (Car insurance will only consider paying for supplemental repairs if car goes to the original service center which is in Chicago).
Having my car vandalized in such a personal way (so many personal items were taken from the vehicle, and the entire wiring system and engine system of the car was cut apart and stolen), took a major toll on me. My independence was taken away, and that was one of the only things I still had control over, because a cancer diagnosis makes someone feel like their control is gone.
However no matter how much I went through physically, nothing was harder this year than the emotional pain of losing my home. My lease on my apartment ended on July 29, 2021 and everything was moved out into a storage unit where it still is. I have been staying with my sister who has graciously welcomed me into her home, however human nature kicks in at times where I can’t help but wish to have my own home again to start over and have a safe, clean environment in which to recover and even begin to process what all I’ve been through.
I only have 4 main wishes now.
1 is that I remain in remission from the leukemia. 2 is that I can please receive help financially so that I can move into an apartment again and try to reestablish a whole new start in life. (Costs of hiring movers to move my furniture etc out of storage unit into apartment, cost of uhaul, cost of security deposit and first month’s rent, cost of continuing to pay for storage unit until I move). 3 is that I can please receive help financially so I can catch up on bill payments (phone payments, car insurance, credit card bills etc) that became out of control when I was on unpaid sick leave.
My other main wish cannot be classified by a number. It’s a wish that contains all my hopes and dreams, but it is overall that I can live. That I stay alive. That I heal. That I recover. That I can feel like myself again. That I can have even just one more day, to start over and to live entirely based on love, to be the best human possible, to never be mean, rude, selfish, spiteful, hurtful, or wrong to anyone for all the days of my life.
Some people never reach a state of remission from cancer.
Those that do, like me, live with the constant awareness that tomorrow isn’t promised, we are constantly aware that our cancer could come back at any time, so we must live for today and try to enjoy life to the best of our abilities.
However, the reality is, that a lot of things require money in order to do them.
it all requires finances, and unfortunately our medical system and society is not set up to help people financially when they undergo cancer treatment. I chose to face the consequences of having no income during active treatment, because I knew saving my life was more important than money. To those who wonder, I was unable to work even remotely because I spent almost all day, every week, in hospitals having blood and platelet transfusions, in between admissions, and was not permitted to utilize public wifi to work or to work while actively receiving transfusions due to the constant interruptions of having my vitals checked, etc during the transfusions. Also, if I had worked even one hour officially on the clock, it would have pushed back my disability application qualifications by months and months because they require you to be unpaid and off work for months before you can even qualify for disability.
In this fundraiser, am asking for any financial donations possible as I try to recover from the financial strain of how I went 7 months without a job based income as I battled to save my life.
No donation is too small, it all is very helpful, as the expenses of having a cancer diagnosis are different from what one would initially expect.
It’s not just medical bills that patients go through with cancer.
It’s prescription drugs (not all copays are covered), it’s the cost of parking in the parking decks of hospitals, it’s the cost of hotels when sleeping after being released from admissions and being too tired to safely drive 3 hours back to my sister’s house.
Even the cost of obtaining medical records to apply for disability through university of Illinois is my out of pocket responsibility.
The sad reality is, it is very expensive to be sick.
I am currently waiting the results of my most recent bone marrow biopsy to find out if I still remain in remission. During an appointment in a few weeks I am going to find out the results and if I am in remission then they will remove the PICC line from my arm which goes into my heart, the PICC line through which I received chemo, blood and platelet transfusions, and countless intravenous medications. Therefore, in a few weeks, the “training wheels” might come off, and I might be truly set free by my doctors to begin living my life as a normal person again, who can hopefully heal and recover in every way, physically, emotionally, financially, etc.
However, even though active treatment will hopefully be over, I’ll still be facing the estimated 12 month recovery time to regain muscle mass and to go through physical therapy from the effect that chemo has on the body. I’ll also unfortunately be facing the fact that chemotherapy can cause long term problems such as heart failure or problems with the lungs, liver, kidney, nerves, and all systems of the body. One of the chemo drugs I received is a neurotoxin and I will be seeing a neurologist and cardiologist to watch for impacts on the body long term.
There is much more I could say here in my story. I don’t even remember all of what I’ve gone through this year, I just know it has been so traumatic and so hard. Some of you know how deeply I battled with depression and anxiety this year as I grieved and fought so many silent battles. Being able to start over is all I want in life now
Every donation will mean so much to me. You will truly be saving my life as you help to further lift the burdens and pain that I’ve been carrying all year.
If you do not wish to donate online, please feel free to message me or contact me directly.
For anyone unable to make a donation, thank you so much for your time spent reading this message.
And to everyone, Thank you with all my heart for your generosity.
~Debbie
Organizer
Debbie Skinner
Organizer
Champaign, IL