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Journey of Lymphona
Apr 7, 2018 Latest post:
Jul 2, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Here is the beginning of Allison's story, read her updates for more of her journey! We started this page on April 7th, but the first few journal entries are a back log of her first 4 chemo treatments.
Like every 27 year old, you never know what life will bring you. Allison had a dream to go on to the LPGA and pursue a career in modeling with Locke Management, along with being a Pilates instructor with her Master's Degree. Over the past year she was noticing she was tired more than normal and having chest pains. On Friday January 12 she was nauseous most of the day and decided to take a nap after golfing with Daniel. when she woke up her chest pains were worse to the point that she couldn't breathe, which is what triggered her trip to Urgent Care and then the Emergency Room.
The teams there did multiple tests to see what could be wrong with Allison including blood work. Her D-dimer was elevated which led them to suspecting a blood clot. The next step was a chest scan, which revealed a mass in her chest. The doctor came in and asked Daniel to sit down to explain that Allison had a cancerous tumor the size of a heart. Allison immediately thought the worse, that she was going to die. She hugged Daniel tightly, and tried to figure out how she was going to tell her buddies in Charlotte and her friends in Cincinnati. She didn't know who to tell first, or how to tell people what was going on. There was no easy way to give this news. She called her parents first and began reaching out to friends, asking them to spread the news of what was happening. Thinking that she was going to die was a hard state of mind for Allison to overcome, because there were no answers from the doctors to prove her right or wrong for two weeks.
The Diagnosis & Treatment Plan
After a 5 day hospital stay in Charlotte with no answers, Allison was able to get permission to move to Cincinnati with Daniel to receive care at Cincinnati Children's in their Cancer & Blood Disease Institute. Her biopsy in Charlotte was useless for a definitive diagnosis because the cells were necrotic, which means that they were dead. Her stay at Cincinnati started with a retest for every possible scenario, this included a bone marrow aspirate, a spinal tap, an Echo, along with numerous scans and Xrays. They also did a PET scan which, thankfully, showed that the cancer did not metastasize and spread to other areas of her body. This was a huge relief! Ultimately, the doctors ended up pulling a microscopic piece of the tumor out and was able to get an accurate biopsy to reveal B Cell Lymphoma.
Finally, after two weeks of waiting for answers, there is a plan of action to help Allison get rid of this tumor! They predicted 6-8 months of treatment with 6 days of 24 hour continuous chemo which includes doxorubicin, etoposide, rituximab, vincristine, prednisone and cyclophosphamide. And then two weeks off. The chemo plan will kill her good cells and her bad cells, so on Day 6 she gets filgrastim (GCSF) to help her bone marrow produce good cells to come back and rebuild her blood counts. There are many side effects of all of these drugs but the prednisone steroid makes her blow up like a Pillsbury dough boy, which is incredibly uncomfortable for her.
When she goes home from chemo she continues GCSF until her counts are up which is just about a week. The GCSF is an injection in her belly or her arm, given once a day. This process causes a lot of pain in Allison's back, thighs, shoulders, pelvic bone and jaw, anywhere there is big bones. They have her on oxycodone to relieve this pain. Which causes nausea, so then she is on a few nausea suppressants, too. Her pain relievers and nausea suppressant basically knock her out. Essentially, she feels like shit every almost day.
After all of this, she is left with about 5-7 days of feeling normal before she goes back in for her next cycle of chemo. Even though she has some good days, those good days aren't in comparison to a healthy person's good day. A "good day" basically involves no headaches and no throwing up.
Before getting admitted for the next cycle, they check up on her heart with an echo to make sure the chemo isn't causing negative effects on her heart. They do an Xray to check on her port.
Typically, every other cycle they do a CT scan to check on the size of the tumor.
Leading in to the next cycle of chemo Allison's anxiety heightens to the point where she is sick to her stomach, anticipating what she will be going through again for the next cycle.
Chemo's overall effects on "normalcy"
- "Chemo fog": During this whole process, Allison experiences "Chemo fog". Chemo has been effecting her short term memory - she said she feels like Dory in Finding Nemo. She has a hard time remembering who she has told what to, who stays with her, what she had to eat recently, what happened on a daily basis, etc. These are things that healthy people take for granted and has been a frustration for Allison. She also has been experiencing blurry vision and trouble focusing on seeing things clearly. She says this comes and goes, though.
- Fertility: The chemo is killing her good cells and bad cells including her eggs needed to have babies. This was another shocking moment and a valley for Allison as she has always wanted to be a mom. After learning this, she thought that she would never be able to have kids. They couldn't freeze any eggs because the process takes 4-6 weeks to complete and she did not have time to put chemo off this much longer. Thankfully, there is new developments in research on ovarian preservation. This was a good route for Allison to take but they had to shrink the tumor first, so this would have to wait until after her a few cycles of chemo.
- Immune System: When Allison is in chemo and the first week home after chemo, her blood counts are low which causes her immune system to be suppressed. This means that she isn't able to fight off bad bacteria and therefore shouldn't be around many people who may be carrying bad bacteria. She isn't allowed to have visitors during this time, but if they do come both her and they have to sanitize and wear a mask. She also isn't allowed to go to public places or be around crowds. During this time of isolation, she tries to stay busy in her house with coloring, painting, puzzles and reading poems when her vision is cooperating.
- Diet: Allison's diet regimen has been changed. She's not allowed to eat her superfoods that she likes to eat, and unpasteurized foods. She can't have her goji berries, maca powder, turmeric, etc. She has to eat processed foods, but tried to avoid pasteurized foods. She has been trying to make her own bread and sauces, but doesn't have the energy to do so most of the time. Home cooked meals are great to meet her needs.
- Exercise: Anyone who knows Allison knows that she loves to work out and stay active. She is learning that with chemo, she isn’t able to have her workout routine because the chemo depletes her physical ability to work out. If she isn't careful, she can ruin her joints in the long run. She also has trouble keeping her balance as a side effect of one of the drugs. She has tried to do some light weight workouts in her house but was really sore the next day and it wasn't worth it. She tried to go rollerblading and ended up turning around, realizing she couldn't keep her balance. She has been able to take walks in the park when her counts are high enough. Thankfully, she also has found someone who is able to teach Pilates in their home and this has been really therapeutic for her. Though she can only go over there if her counts are high enough. She is looking forward to the days when she is able to rebuild her muscles!
- Her future: There is a constant worry for Allison that something is going to happen to her during all of this treatment. While she knows that she is going to fight this cancer, she is scared that something else will come up during her treatments that will impede her living a normal life again. She continues to pray and ask for strength to relieve these anxieties because she knows that God has a plan for her.