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Central Nervous System Lymphoma

I’ve been meaning to do an update for quite awhile now, but just haven’t managed to get around to it. I’ve got crafts to show—finished baby blanket, baby hats, a vest in progress (nearly done), a couple of scrapbook pages and a stocking in the works.

Today, however, I wanted to do a more detailed update about my mom. My mom was diagnosed with Primary Central Nervous System Lymphoma at the end of September. When she was first diagnosed, it was beyond devastating. Of course the first thing I did was look online to find out more information about this cancer. I looked for statistics (wow is that a mistake), I looked for info about remission and info from people living with this disease or even surviving this disease. The medical information is all there. What was really missing was any personal info about this cancer. I couldn’t find any info about people living with this, surviving it, or even just a journal of someone’s experience of going through treatment. So I thought I would document my mom’s experience in the hopes that the info may be available for someone who needs it in the future. I should preface this by saying that I am not a doctor, nor do I play one on TV. The following is my version/understanding of my mom’s experiences, which may not be 100% accurate as I am only human.  I know its really long, but hopefully it will help someone if they are in a similar situation.

My mom’s CNS lymphoma is only located in her brain. And it is primary because she does not have cancer anywhere else, and it originated in her brain (rather then traveling to her brain from somewhere else in her body). She actually had 6 brain tumors, but only one was really big (5 cms). Her symptoms began with lack of appetite, loss of coordination, mental confusion, shaking hands, physical weakness, loss of personality/personality change, her handwriting changed and more. It was a decline over several months that completed baffled her doctors. First the doctors said it was Parkinson’s disease, essential tremors, stress. She had appointments with neurologists, psychiatrists, she had MRIs and acupuncture. It seemed that the doctor did just not understand how much my mom had actually changed. It was only after my dad wrote a letter to the doctor that included all the little events that had happened (like the fact that mom would dress herself in her clothes backwards and inside out and not notice) and included a sample of the handwriting change, that finally another MRI was ordered.

September 17, Mom went in for the MRI and was immediately admitted to the hospital. The doctors were very very concerned. At first the doctors did not definitively say that she had cancer. They tried to beat around the bush and say that it could be this or that. Then finally one doctor admitted that it was cancer. Mom was subject to a variety of different tests to find the cancer elsewhere in her body, but nothing was found. The doctors said they needed to do a biopsy to figure out the type of cancer. Mom was started on steroids to deal with the swelling in her brain and to help shrink the tumors.

Mom then was admitted to a specialist hospital (CINN), for the tumor biopsy. This was a hellish day for the family. We arrived at the hospital at 6 in the morning, as mom was supposed to go down to surgery at 6:30. She eventually was taken to surgery at like 8:30 as the time of the surgery had been changed and no one had bothered to inform the family (thanks a lot!). The surgery took about 5 hours (?), and then we had to wait a few days for the results of the biopsy to come in. The doctors also removed as much of the large tumor as they could safely do. During the interim days, mom was still in CINN and undergoing tests to determine what kind of therapy she would need. Mom was also really coming around in her personality. She was getting rather feisty and unhappy to be in the hospital. The doctors said with this kind of surgery/location of the tumor (not sure which one), that impulse control can be affected. Mom demonstrated this by ripping out all of her IVs and Dad came into the room to find her bleeding all over the place and ready to escape. Mom tried to escape the hospital several times during her stay. The therapists determined that mom would need physical and occupational therapy to regain the coordination and motor skills she had lost.

On the final day of mom’s stay in CINN, the biopsy results came back, Central Nervous System Lymphoma. The surgeon recommended mom stay on the steroid treatment and get gamma knife radiation on the tumors. This type of radiation specifically targets the tumors and does not radiate the rest of the brain. This is a huge bonus as whole brain radiation can cause dementia and other problems. The negative of this is that only the current tumors are targeted, so if there is an undetected spot of lymphoma, it will not be treated. So mom got this done. She then went home and started physical and occupational therapy 3-4 times per week. The doctors we talked with at CINN made it sound like this was all the treatment mom would need to fight her cancer: just steroids and gamma knife radiation. In fact, they didn’t even recommend seeing an oncologist. Sounds like a dream right? Yeah, total bullshit.

At a follow up to mom’s regular doctor, it was like “Oh shit! You haven’t been to an oncologist yet?!” So then began the oncologist visits. Several different ones were visited because their opinions/recommendations were so different then the people at CINN. The oncologists stressed that CNS Lymphoma is a very aggressive cancer, if the radiation did not kill the cancer it would spread very quickly in mom’s body. They stressed all the negatives of this cancer. They gave mom about a 45% chance. It was pounded into our heads how mom needed an immediate start with chemotherapy and that the cancer could have already spread (it had been about a month since mom went into the hospital for the first time). So another MRI, another spinal tap, and a bone marrow biopsy were preformed. Amazingly enough, the cancer had not spread! A course of therapy was then laid out.

Mom went in for her first round of chemo on Halloween. With the type of chemo (Methotrexate) mom is receiving she has to be admitted to the hospital during treatment. The chemo is given for a certain amount of time, then an anti-dote (Leucovorin) is given to flush the chemo out. The level of chemo in the blood is then monitored until it gets down to the “safe” level. After that, then mom can be released. This whole process is supposed to take about 3 days in the hospital. Mom’s first round took 5 days to get to a safe level as her body was just not metabolizing the chemo/anti-dote fast enough. Mom’s second round took her a whole week to get to a safe level. And that’s as far as I can say because mom is in the hospital starting round 3 today.

After the biopsy/tumor reduction, steroids, and radiation, mom really started to come back to herself. She became more aware of her surroundings and regained her personality. I will not lie and say she is 100% her old self, but she is close enough. Mom still has some memory problems at times, mostly short term stuff. She has remained physically weakened and her balance is off a bit. She was falling quite a bit during the months of October through the middle of November, so she couldn’t really be alone. The therapy helped her to regain some balance and strength, but therapy had to stop when chemo began. Mom’s regained enough use of her fingers that she begun knitting a bit!

Mom has been lucky so far with the chemo side effects (some of these might be caused by the steroids too), although mom has only had 2 rounds of chemo as of this writing. The worst thing so far has been that mom’s feet swelled up a whole bunch and she developed a rash. She got really dry skin and mouth. She hasn’t started losing her hair yet (half her head was shaved for the brain surgery, so she cut it all real short so it could grow in even). The main problem mom has with chemo is that she is incredibly bored being at the hospital! Mom does have really low levels of hemoglobin, so she may be receiving a blood transfusion today before they actually start the chemo.

I know the hardest part of this ordeal has been getting used to the idea that mom will not be around forever. I am realistic with myself. I know that this type of cancer is really bad to have, and life expectancy after diagnosis is pretty short even with treatment. I know that I may have a limited amount of time with mom, so I need to appreciate every moment I do have. I know time is limited, so I’m going to get as much time with her as I can now. Part of me is still going to hope and pray that mom will be cured and live to be a hundred, but the other part of me knows it’s not going to happen.

One Response

  1. Thank you for sharing your story! I’ve followed your craft blog and had read the earlier posts about your mom. My thoughts are with you and your family!

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