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On Saturday November 24, Claudia Ruoff woke up with a severe headache. Within a couple of hours she started vomiting. After a visit to the doctor's office, he sent us the Emergency Room for a CAT scan. 15 minutes after arriving at the ER, the scan results came back and the ER doc told me of a large tumor in Claudia's brain. This is one of the moments in life you never forget. Two days later Claudia was in surgery for six hours to remove the 4 x 6 cm tumor out of her left temperal lobe. The surgery went well and Claudia is sporting a cool scar. Now we had to wait for the lab results to come back to let us know what type of cancer Claudia was dealing with.
On Friday Nov. 30, 2018 Claudia's Surgeon, Dr. Kristine Dziurzynski had Claudia, her parents and myself into her office for a consult. This is where we learned that Claudia has Glioblastoma, the most deadly form of brain cancer. This is another moment in life you never forget. We then came home to tell our three sons that their mother has this terrible disease. This is the hardest conversation we have ever had with our children,
Since that time, Claudia is recovering well from the surgery. When she first went to the ER she was losing memory and speaking ability as well as sight in her right eye. The tumor had ruptured and was full of blood and the immense pressure on her brain caused these symptoms. Thankfully, since the surgery Claudia has improved in all areas. Her sight has improved back to normal, her memory and speech are improving daily. This is a good sign and we are hopeful that trend continues. Confidence is high that she can regain close to 100% of these functions.
There are lot of doctors and medical professionals you work with when you have Glioblastoma. Obviously we saw the first doctor who sent us to the Emergency Room where we met the ER doc. Then a Neurologist saw Claudia and he recommended the Surgeon. Of course in surgery there is the Anesthesiologist and the assisting surgeon. After that you work with Physical and Occupational Therapists who gave Claudia a passing bill of health in those areas even before she left the hospital. She also now sees a Speech Therapist 3 days a week to help her with speaking and reading and memory. Claudia has been studying hard on her i-pad speech therapy programs. It is satisfying to watch the improvements come so rapidly.
We have met with a Neuro-Psychologist who also works on memory and many other aspects of brain function. This week we will meet with a Neuro-Optometrist who specializes in sight issues related to all sorts of brain trauma and related diseases like Glioblastoma. Last week we met with Claudia's Radiation Oncologist who sets and monitors her upcoming 5-days a week for six weeks stint of radiation treatments. (This begins the first day after Christmas.) On Tuesday we will meet the Chemotherapy Oncologist who manages her Chemo treatments.
All of these Doctors work as a team to treat the patient. Every case of cancer is different. When you hear about someone who is cured or at least in long-term remission, their success does not necessarily translate to other cases. You and I can have the same type of cancer and be treated the same way and we can have entirely different outcomes. It comes down to good treatment but also your genetic makeup.
There are literally thousands of clinical trials going on around the world at one time all focused on particular types of cancer. All are trying to improve the outcomes of the treatments. A good outcome can range from a total removal of the cancer, to a long-term remission of the cancer or to at least extending length and quality life for the cancer patient. A total cure for cancer is still very far away though they are making progress with many types of cancer in regards to outcomes. When you learn more about it, it is easy to understand why it is so insidious and difficult to treat successfully.
Claudia's treatment began with surgery and removal of the tumor. This went well and most of it was removed. It is too dangerous to cut every last bit out because we are talking about the brain here. Her next course of treatment is the radiation followed by chemotherapy with a drug called Temodar. In a perfect world these will kill off the remaining cancer cells in her brain. Due to the nature of Glioblastoma (GBM for short.) and how it likes to hide in corners all over the brain at a cellular level, total success with these treatments has proven to be elusive.
Claudia will then start wearing a a cap called an Optune. This will apply low frequency electric fields to the scalp that inhibit cancer cell growth. Clinical trials have proven successful and have extended patients lives by significant percentages. This is cutting edge technology but really the only significant leap forward in GBM treatments in a dozen years.
So this is the path we have chosen to go forward with. We have confidence in Claudia's treatment team. We are paying attention to what other cancer research hospitals are doing around the country and if we see anyone having a particular and consistent improvement in outcomes we may follow up with it. But for now, rather than chase an elusive goal Claudia prefers to stay home to spend time with our children. I concur with her on this. We are going with the best treatment for GBM that we currently know of.
I wrote this on Sunday Dec. 16, 2018. It has been 23 days since the CAT scan found the tumor in Claudia's brain. This has quite obviously turned our lives upside down. We can only go forward one step at a time. Claudia has been remarkably strong through this. She has chosen to proceed with style. I am here to support her on this journey. We have been literally overwhelmed (In a good way.) with thousands of prayers, well wishes and offers of support from family, friends and even strangers. For that, Claudia, the boys- Alex, Pierce and Brandon and I are truly grateful.
I am just learning how to use this site. I will be enlisting one of Claudia's best friends, (Since freshman year at Millersville.) Becky Anderson, to help edit this page. Between the two of us, we will try to keep you updated on significant and maybe not so significant items of interest during Claudia's journey. I understand I should be able to create a schedule that will allow people to sign up for bringing us the occasional meal. Some people have inquired if they can do this. I hope to have that figured out and working in the next few days. Update: We have set up the Calendar for meal donations. see the first post journal update below for details or just click on "Ways to Help"
Feel free to let people who know Claudia to follow this page. It is bit more personal than the ocean that is Facebook.