deppoholic's Journey with Acute Lymphocytic Leukemia (ALL)
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Clinical Trial Icon Clinical Trial
- 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 5 Side Effects Icon Side Effects
- 6 Celebration Icon Celebration
- 7 Side Effects Icon Side Effects
- 8 Celebration Icon Celebration
- 9 Side Effects Icon Side Effects
- 10 Side Effects Icon Side Effects
- 11 Side Effects Icon Side Effects
- 12 Side Effects Icon Side Effects
- 13 Side Effects Icon Side Effects
- 14 Side Effects Icon Side Effects
- 15 Celebration Icon Celebration
- 16 Celebration Icon Celebration
- 17 Side Effects Icon Side Effects
- 18 Side Effects Icon Side Effects
- 19 Side Effects Icon Side Effects
- 20 Celebration Icon Celebration
- 21 Celebration Icon Celebration
- 22 Procedure or Surgery Icon Procedure or Surgery
- 23 Loss Icon Loss
- 24 Celebration Icon Celebration
Survivor: Leukemia > Acute Lymphocytic Leukemia (ALL)
Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 13 years ago, Female, Age: 30
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Diagnosed
Oh No
I had been feeling cruddy for a month, but thought I was over doing it at school. I went to the doctor thinking I had mono, and was told the next morning I had leukemia.
Implant chemotherapy port
Procedure or Surgery
I had never had surgery before, and when I heard about this I was scared. I also still had not comprehended that I had cancer. I was a bit overwhelmed at the time. The procedure did not go badly, I was just out of it after the big news.
Other
Clinical Trial
When asked if I wanted to be a part of a clinical trial, I was hesitant because I did not want to get a drug that did not work. When I was told I had a 50% chance of getting the same medicine that I would have gotten anyway, I said yes. I also always had the option to back out of it. I looked at it like this: as long as I was being treated by a method they had faith in, if I could eventually help someone else, then it would be worth it.
Chemotherapy
Drug or Chemo Therapy
I had to take the year off from school and had to put my life as I knew it on hold. I did not get too nauseous, which I was very lucky. It took awhile for my hair to all fall out, which was difficult for me to watch. I would shave my head if I had to go back in time. Basically, chemo meant a lot of time in the hospital: whether inpatient or waiting in the clinic for results/infusions. It could have been much worse.
Blood sugar, high (diabetes)
Side Effects
A medicine that was saving my life gave me temporary high blood sugar. The doctors took away the thing I love to eat most: sweets.
Remission
Celebration
In half the expected time, I hit remission. Only 2 years and 4.5 months to go of treatment.
Nerve damage (peripheral neuropathy)
Side Effects
One of my shots severed a nerve in my leg. For about 3 years it hurt. Now it is nearly back to normal, which is great since nerves are tricky things.
Granted a Make-A-Wish
Celebration
I was told I qualified for a Make-A-Wish, and I would eventually meet Johnny Depp! He became my inspiration to live at that moment.
Hair loss (alopecia)
Side Effects
Really? I want to know who does not lose their hair on chemo!
Rash
Side Effects
My legs got welts all over them that were swollen and hot to the touch. They hurt a lot, and started off red. My legs also filled with fluid, and I was almost removed from the clinical trial since not even a specialist knew what was wrong with me. I have one lasting scar from the first rash I got. It truned black and cracked over time, now just looks like a huge bruise.
Anemia (low red blood cell counts)
Side Effects
How can this NOT be a side-effect when all of your chemo is killing your blood cells? The most annoying about this, was I had to wait to see if I needed a transfusion before they would ever let me go home, and if I needed one they were four-eight hours each. Boring!
Foot Drop
Side Effects
I had trouble walking during treatment, and it has gotten much better. My heel doesn't move my foot the way it should, and my feet "flap" as I walk. I still have trouble running, but in the beginning I was unable to even walk up stairs.
Hot flashes
Side Effects
Yeah steroids!
Depression/Anxiety
Side Effects
Never diagnosed as such, but I gave up for awhile. There was a time I was stuck in the hospital, saw my friends living normal lives, and saw how drastically different my life was. Then I found my thing that kept me fighting: Johnnt Depp. And I got over it.
Birthday
Celebration
My 17th birthday was the same day as the hospital's birthday, and the date Sweeney Todd came to DVD. My friends came up to visit me, and we had a good time. I was in for chemo, but it was still a good day.
Junior Prom
Celebration
I was in the hospital and told if I left, I would come back in an ambulance. My immune system (ANC) was at 5. I went, and had a good time, but could not eat, smile, or talk, on account of mouth sores. And my mom was sick, so I could not even go anywhere near her in my beautiful gown. Everyone at the hospital (I left on a 4 hour pass) was so supportive and awesome.
Chemo brain
Side Effects
This looks terrible I am dwelling on the side-effects, but they happen. I'm alive to complain, so I'm not complaining! The chemo really slowed down my process for learning, and gave me short-term memory loss. As a straight-A student, I had to drop my honors classes, and was having difficulties with the normal level. It was depressing.
Mood changes
Side Effects
I had mood swings, many of which I was not aware of until I got better. People would turn on me, and I did not realize how I was treating them. I could have handled everything with more grace, but some of it was influenced by the chemo.
Stool leakage
Side Effects
I don't want to talk about this. I had constipation and this, as well as a rash in a bad location for everyone to have to examine. I've moved on.
Hair is back
Celebration
My hair started to come back in! Not at all how it was before, but it was nice to see it again!
Finished treatment
Celebration
To be done with a treatment that took 2.5 years felt wonderful. I am so happy everything turned out for the best, and am thankful to everyone who helped.
port removal
Procedure or Surgery
They knocked me out and ripped the port out of me. Later that day, I went and set up the survivor dinner for the Relay For Life the following day, and stayed the whole weekend. It was a nice way to part with the last ties to my cancer treatment.
Lost loved one
Loss
Loss is a part of life, and you get too many lessons when you're close to someone with cancer. I lost one friend I made in the hospital, an inspirational girl with the same disease as me from my town, and the most wonderful woman I have ever known, who was like a second mother to me within two years of each other.
Make-A-Wish
Celebration
4 years later, Make-A-Wish called, and my family was off to meet Johnny Depp in LONDON! It was so amazing, and more than I had ever dreamed it would be. It was a wonderful experience to share with the people that were there with me through it all.