Christine's Cancer Recovery
2013: In June, I started having nerve pain in my mouth and jaw due to a tooth. I took a lot of Advil Liqui Gels until I was able to get a root canal in July. The Advil damaged my gallbladder. After having the tooth taken care of, everything I ate made me very sick and I lost about 25 pounds. In August, I went on short term disability leave from my employer. Next I got a sinus infection due to allergies, which turned into a very bad chest cold. In September, I had my gallbladder removed, then developed pneumonia. After finishing several different antibiotics, I continued to get worse. I was admitted to the hospital In October, and diagnosed with Acute Myeloid Leukemia (AML) the day after being admitted. I spent the rest of the year in the hospital. I received 3 rounds of chemotherapy, and several transfusions. I also had several complications during my hospital stay, which made things much more difficult.
2014: I had a port surgically placed in my chest and was released from the hospital in January. My follow up treatment was 4 rounds of outpatient chemotherapy. I was referred to a different local hospital (UNMC) to see if I was a candidate for a Bone Marrow Transplant . Normally it takes 1, maybe 2 rounds of chemotherapy to achieve remission with my type of AML - it took me 3. UNMC confirmed that without a transplant, my survival chances were very low. Due to health insurance complications, transplant was put on hold. Outpatient chemotherapy began in February, and continued all year. I spent many days in the hospital for chemotherapy, blood transfusions, and platelet transfusions. I had a total of 4 rounds of chemotherapy that year, and it took me about 1 to 2 months to recover from each one. I began having a lot of dental problems due to lack of saliva and not being able to use a toothbrush due to bleeding gums from chemotherapy.
2015: My cancer came back in January - I relapsed. I started on a new type of chemotherapy drug that month, which made me very sick. This is when I stopped driving, which was the last of my independence. In April I had bleeding in my right eye, and lost vision in it. This was due to having no platelets from chemotherapy. Vision is my left eye is very poor. Some dental work was able to be done in May prior to my transplant. I had my allogeneic Bone Marrow Transplant in June, and spent over one month in the hospital. I could barely eat, walk, or do anything at all. I began having problems swallowing my food, and started choking a lot. My entire body dried out. My cancer returned within 90 days of my transplant, and I received more chemotherapy. I had surgery on my eye in September to remove the blood. My vision is now much worse in that eye. The last chemotherapy I had was in November, and thankfully I have been cancer free since. In December, I was diagnosed with Chronic Graft Versus Host Disease (GVHD) , where my donor's cells attack mine. My eyes became extremely dry, itchy and sensitive to light. I also started feeling like there was sand in my eyes all the time. Additionally my mucous membranes stopped functioning properly.
2016: In January I began coughing a lot. The cough turned into pneumonia, and in February I was admitted to the hospital after having a large chest tube inserted into my side to drain fluid from my chest wall. My eyes got significantly worse in March. I was told I will eventually need surgery on both eyes to remove cataracts. Despite all the treatments I tried, nothing provided much relief for the eyes. I got pneumonia again in April. In May I was diagnosed with a bladder infection. I had a bad reaction to the antibiotics, which caused severe swelling in my legs and feet. I was also diagnosed with Osteoporosis. In July, I began experiencing severe pain in my joints and muscles. These are symptoms of GVHD and Rheumatoid Arthritis, which I was also diagnosed with. The leg swelling finally got better in September. That month I was diagnosed with lung disease, and it was recommended that I begin Photopheresis treatment. This treatment required that I have my port removed from my chest, and have 2 larger ports put in. I had surgery for the port removal/installation in October, and began Photopheresis in November. This required me to be at the hospital 2 days in a row each week for several hours. My cough came back in December. I had several dental fillings fall out this year, and developed many other problems with my teeth.
2017: I continued Photopheresis treatment weekly until February, when I began with every other week. So far the only thing it’s helped is my joint pain, by about 30%. After taking several medications, my cough went away in February. In March I had some tests done due to me choking when I eat. It was confirmed that I am at risk for things going into my airway when I swallow, especially pills. It was recommended that I crush all pills going forward. April brought me a Urinary Tract Infection and Salmonella. I dropped a lot of weight and started on Prednisone in May. This caused incontinence problems, tremors, water retention and when tapering down caused GVH of the skin (swelling, thickening, hardening of the skin, and lumpiness). I began physical therapy and occupational therapy (for the hands and arms) twice a week in June. July brought a new anti-rejection medication, which caused extreme abdominal bloating and water retention. I stopped Photopheresis sometime in October. I began to gain some weight back and had begun to move around more when I fell on Halloween. I fractured my right wrist in 2 places, 2 bones in my face, and damaged my left knee. I began moving around more in December when my right knee began hurting. The femur and tibia are dying due to lack of blood flow, and the pain is excruciating. I am unable to put any weight on the knee, and must be in a wheelchair when out of the house.
2018: On January 5 my beloved kitty Leet passed away due to kidney failure. My lung function was rated at 28% in February. Much of this is caused by the swelling in my torso. I am trying to get a breathing machine to expand my lungs while I sleep. I began Photopheresis again in March after having a port replaced due to an area that wouldn't heal. The metal of the port could be seen through my skin!. My cancer also came back in March, and therefore I only had 3 Photopheresis treatments. So far we know that it is a recurrence of AML (Acute Myeloid Leukemia), and there is about 61% of it in my bone marrow. Most likely, I will begin chemo again ASAP. Update: The percentage of "bad cells" in my blood got up to 88% and is currently at 0%. I've had 3 rounds of chemo, was on a chemo pill for awhile, and I have a 4th round of chemo the week of June 18th. I see a life of regular chemo treatments. On Sunday the 24th, we will be moving back to PA to be with my family and get more help than we are able to in Omaha. If you are able to donate to help out with the move, we would really appreciate it & desperately need it!
Summary: At this point, I am so deconditioned that I can barely walk. I normally only leave the house to go to my medical appointments, and need assistance to do so. It’s been difficult to do physical therapy because it’s so painful and I am so weak, and because I have been quite ill most of the last 5 years. The experiences that I have had with health, dental, and eye insurance are enough to write a book about, so I will just say that my insurance is pretty bad and I have to pay a lot of out of pocket expenses. My husband’s ability to work is limited due to the amount of care that I need. I simply don’t have the ability to get better with the resources that I have. Thanks to the donations I have received so far, I have been able to get some dental work done. I also got the contact lenses, which have been life changing. Thank you!
What I need financial assistance for: I estimate that I need about $35,000 to pay medical bills, get dental work done, and get about 12 months of the medications that I should be taking on a regular basis:
$7,000 dental work
$2,000 monthly prescription drugs
$300 monthly over-the-counter drugs
$800 yearly prosthetic eye lenses for chronic dry eye
$15,000 medical bills
$45 copay per specialist office visit (countless)
I am happy to provide any additional details, please let me know if you have any questions. Over three years of history is difficult to summarize and I had to leave a lot of things out! Feel free to check out my blog for more information on my illness: Christine's Cancer Blog . You can also contact me on Facebook .
Thanks for "listening", and thanks for any help you can send my way. If you're unable to donate, please help by sharing my story.
Thanks for helping me on this insane journey!
Im not sure you remember me, but we used to work together. I just want to tell you that I am so so sorry for everything that you have and are going through! Although I am unable to donate at this time I will surely share your story and I hope and pray for a well deserved recovery! You are a good soul and I'm not sure why God chose you as his guinea pig, but I truly hope that you can overcome this! Prayers to you and your hubby! Kristi
Allergic to cats! Oh no.... that is very sad news... I am sorry to hear this.