I asked myself this question as a mom and clinician thinking on my feet the morning of June 13th in the ER after my son suffered his second tonic-clonic seizure of this year and the ER doctor was quick to turn to the CATSCAN as the first choice. This is an example of how life just happens regardless of whether or not one has cancer or is fighting cancer -- it's one heart-wrenched dilemma we faced during this cancer trail.
My husband said that he heard an NPR report on the recent studies of CATSCANS on children -- and how these have contributed to cancer in children. Of course I'm super sensitive about this topic being that I'm a cancer fighter -- the thought of my child developing a cancer makes me ill.
In neuroanatomy classes, as clinicians, we learned that when a patient goes into the ER and has a stroke then the choice of brain imaging is CATSCAN. Though it is the equivalent of roughly 300 x-rays, in the few minutes it takes to do it can reveal so much about a person's type of stroke or brain insult. You want to rule out a bleed, like a hemorrhage, because that determines the type of medication you give the patient. Imagine giving a blood thinning medication to a person who is already bleeding -- that person could bleed to death. In this instance you'd want a blood clotting medication. It's the doctor's call -- but we all can contribute to the discussion by providing clear details of the event and by careful observation.
In the ER my head was pounding 'think think think think think'.... why is she ordering the CATSCAN over the MRI? Is it a time sensitive thing she's doing because if he's behaving like there is a bleed then we need to go down the CATSAN route. Or, is it a convenience thing -- is it easier to schedule or cheaper to do?
In our son's case, there are so many things to weigh into the decision making process: his duplicate chromosome two has wreaked some havoc on his system -- making it more susceptible to things, everything from GI to lungs up through neuro stuff; but, he's also overcome things all along the way and we are super hopeful that one day, as an adult, these things will all be a distant memory buried in so many positive experiences filled with love. One day his body will be so strong that he'll be the case example of complete breakthrough -- like the athlete who makes an Olympics after being told that he or she would never run again prior to even qualifying for an Olympics due to an ugly injury. The other things to weigh in to the decision of CATSCAN or MRI is that he has a history of motor challenges in his brain. For instance, in apraxia, he knows what to say -- the formation of his words and ideas are fully functional in his brain -- but the connection to the mouth is off. Apraxia is motor related. He also has dysarthria -- another motor related thing stemming from the brain -- and this causes muscle weakness. In our case, the motor part causing the motor weakness is in the tongue and cheeks. The chromosome 2, the apraxia, the dysarthria are obstacles he's had to overcome obstacles -- he's worked so hard to get where he is today but these are always on the back burner in decision making processes when some big event takes place, like an ER trip.
This time the new thing that entered into the weigh in process was that after the seizure his tongue was paralyzed and so was his left arm. The first thing I thought was that he was having a stroke. So if this were true, a CATSCAN would be the first imaging you'd turn to because it could save one's life. Like I mentioned above, it is done within a few minutes and can image broken vessels causing bleeds in the brain if it's the type of stroke that is a bleed which calls for a clotting medication; if it's not a bleed type of stroke then one gets a blood thinner. If you give the blood thinner when someone is having a bleed then one can bleed to death which is why the CATSCAN and timing is important.
In our case, the paralysis came after the seizure. If no seizure happened, then it's safer to say it was a stroke especially if the tongue and arm stayed paralyzed. In our case, after about an 45 minutes (the time it happened plus the time it took to get to the ER, registered, and seen by the doctor) his tongue and arm slowly started to function again. Since the paralysis came with a seizure there is something called Todd's Paresis which mimics a stroke but isn't. In this case, the MRI is the best call since, though it takes about 45 minutes vs the few minutes of the CATSCAN, it does not expose the body to the 300 times radiation that the CATSCAN exposes one to. In fact, the MRI does not use radiation at all and therefore does not contribute to cancer.
Today we are recovering from a what was a cold; it's now a week since we had started a fever. He has an MRI appointment to rule out certain causes of the seizure. In our case, we are praying it was febrile and nothing else. We also have appointments set with his neurologist, GI, ENT, and pediatrician.
Like I also mentioned above, fighting cancer does not mean life stops. Life happens with all its easy and hard experiences and all these experiences have to be met face on. What did help the doctor in our case is learning how sensitive we are to cancer since I'm fighting (and it was obvious with my bald head); if I did not have cancer or concerns of radiation exposure then the CATSCAN would have been his only option -- which would have been ok if he was indeed having a stroke -- but he was having Todd's paresis instead.
blogging my journey with breast cancer
Wednesday, June 19, 2013
Wednesday, June 12, 2013
Last Week of Chemo
I have now reached the final week of my chemo infusions of taxotere and cytoxan. My reading and research have now shifted in focus: how will I plan my recovery from chemotherapy, how will I address menopause which is a side effect of chemotherapy, and what traditional, complimentary and alternative approaches will I use for hormone replacement, bone loss prevention and cancer reoccurrence prevention. If I knew the answers to all of these things I would be one darn lucky woman; the science field is trying to figure this one out, too. So, since I'm in the thick of it all plus my number one goal is long-term survival, then I have nothing to lose but to be informed and go the healthiest route possible.
This past week when my mommy-hat came off each night, I dove into some of the cancer books I bought in the beginning of this process. Three of the books in particular that I dove into are:
1. Dr. Susan Love's Breast Book
2. Breast Cancer for Dummies
3. Gershom Therapy for Cancer
4. Premenopause and What Doctors Won't Tell You
5. Menopause and What Doctors Won't Tell You
Each of these books offer a perspective that I think is worth the read. In particular, the idea of healthy eating, supplementing, exercise, and some form of positive thinking (whether it's from prayer, yoga, or other activities which includes laughter) contributes to healing. So far I've seen that all of these things have been super helpful in getting through the mastectomy healing process and getting through chemotherapy. I'll have to talk more about these in future posts as individual topics. In fact, I'll have to post my ABC's of what I've learned throughout this experience and what I'm continuously learning in this next stage -- all in the spirit of sharing information. I think that's what I'll do....
Thank you again for thoughts and prayers my way and my family's way!
This past week when my mommy-hat came off each night, I dove into some of the cancer books I bought in the beginning of this process. Three of the books in particular that I dove into are:
1. Dr. Susan Love's Breast Book
2. Breast Cancer for Dummies
3. Gershom Therapy for Cancer
4. Premenopause and What Doctors Won't Tell You
5. Menopause and What Doctors Won't Tell You
Each of these books offer a perspective that I think is worth the read. In particular, the idea of healthy eating, supplementing, exercise, and some form of positive thinking (whether it's from prayer, yoga, or other activities which includes laughter) contributes to healing. So far I've seen that all of these things have been super helpful in getting through the mastectomy healing process and getting through chemotherapy. I'll have to talk more about these in future posts as individual topics. In fact, I'll have to post my ABC's of what I've learned throughout this experience and what I'm continuously learning in this next stage -- all in the spirit of sharing information. I think that's what I'll do....
Thank you again for thoughts and prayers my way and my family's way!
Wednesday, June 5, 2013
Dad's Dream
Dad Dream June 5, 2013
I haven’t had an emotional type cry in a long time -- in fact, the last was when I found out I had cancer. Once there was some kind of game plan I had been in game mode, tackling the hurdles in front of me with purpose, with strength of people behind me, with calm. Ok, so chemo brain is making more forgetful. There are other moments like when I passed the license exam in between mastectomy and chemo, seeing my hubby graduate, watching my son dance to a Peruvian song that I used to see in my dad and my step-mom’s house (It’s a drum and flute one that is a happy song that makes you feel the beat of the earth and make you want to dance).
This morning I woke up with tears and crying -- a happy cry filled with such vividness and realness that I felt like I was waking up and going to go talk with the people in my dream. The people in my dream were my dad and my step-mom. I woke right after hugging my dad so warmly and tightly. I woke up forgetting my dad died 11 years ago.
My hubby asked how I slept and I told him. He wanted to know about the dream, but I was scared I’d forget so I told him I’m going to write it down first:
In my dream my siblings and I were at my dad’s house. He was calm. He was peaceful. He was filled with purpose. He and my step mom were clearing out the house in a calm fashion. They told us that they decided they were going to sell the house, so we all jumped in and started helping them clean up the house. Most of the dream was about cleaning up the house and ridding it of clutter -- just keeping things that they wanted in a lighter style of life that would give them quality of life. I remember one of the last items was some sort of outside television unit that seemed ahead of its time. We wondered if it worked. It worked and I asked if I could keep it, so we all brought it out to the front of the house together. My dad seemed so happy.
Then randomly some of his friends that I did not know showed up. They were all sitting in the living room together on two adjacent sofas, talking. I started to ask where he and my step mom wanted to move to (they lived in San Mateo, CA) and my step-mom came in and said ‘San Francisco’. They found a place not too far from shopping, the concerts in the park, the zoo, the beach. They wanted to enjoy these things by walking to these places. My dad had this big smile. You can tell he felt this was right and he was looking forward to simple pleasures. This was huge. See, we had spent the last decade of his life trying to convince him into just enjoying simple pleasures -- but back then he reverted to the bottle and most of the time for a while he was not alert, asleep with a different type of dream and us waiting til that wave passed so that we could talk about why he chose that path. But in the dream, he looked like he gave up drinking, he was proud that he could make this decision, he was truly happy. I walked over to him and gave him a big, long hug in which I can feel the rise and fall of his breathing, the warmth of his skin, the calmness in his way. I said to everyone “THIS is my father” meaning this is the father I know, love, and believe. Then I woke up. Smiling. Happy. Though I had an OMG moment, forgetting for that split second that he was not on this earth, I felt at peace knowing he’s at peace.
NOTE: my son’s music class has been dancing to one of Peruvian songs I remember dancing to in my dad’s house with my step-mom. I’m filled with such happiness when I see him dance and have this song in his experience. Each time I want to also jump out of my seat and dance (I stay cool, but I’m dancing inside:). After I wrote this, I posted these links below and I was so happy to share it, and it was also a great opportunity to talk about Peruvian music, and the pictures in the last link
Here’s one I found on youtube of El Condor Pasa...thinking of my step-mom :)
Friday, May 31, 2013
Hubby's Graduation
Another very special event took place last week -- the week I graduated from a graduate program in Communication Sciences/Speech Language Pathology: my husband's graduation from his graduate program in Computer Science. This, too, was a super challenge and a very exciting event for our family.
A bit of background: my hubby and I met as post collegiate athletes training for an Olympic Development team 16 years ago. I was doing a graduate program in education at the time and he took an interest in both my academics and running. A friendship developed and the rest is history.
When I got a college teaching job both my hubby and I enrolled in HTML and C++ classes in the computer sciences department. This was during rhe dotcom era. He was much better at it than me. But then again, despite the fact that we both did language undergrad programs (him in English lit and me in Spanish lit) he rocked the gaming world. I remember saying "hey, you are so good at programming those games you do -- have you ever thought about going back and doing computer science?"
When the fall enrollment came up, we both went and had coffee and signed up for classes in this department together. That was enough to get him hooked. So, when we moved for another college position for me, he officially enrolled at that college as a computer science major, graduated with a second degree, this time a Bachelor of Science.
He was considering a high school teaching job until he met my co-worker's husband. This is a person we are forever grateful for. He asked my husband if he ever thought of the aerospace industry. We both were clueless. He got my husband an internship. Soon afterward he was offered a permanent job but then needed to enroll into a graduate program for job security. This was at a time when our son was born, our son had several medical complications along the way, then 4 years later we lost our daughter at delivery, I entered a graduate program to help our son 6 years ago, then his wife got cancer (me). He's had a full plate and reached the point where no more extensions for the graduate thesis was possible. He had a two week window of cranking out that thesis or the entire 8 years of sacrifice would expire without a degree.
So, he took a full two week vacation to crank that puppy out and did it with flying colors!
He originally didn't want to do the ceremonies since he's pretty low key -- but I convinced him that it is a family affair -- our son deserves to see BOTH his Mommy and Daddy walk at commencement since he's seen us as students pretty much his whole life. Thankfully he agreed after a few months of convincing. To see his happy face at graduation was amazing. He seemed so happy, proud, excited. Our son got to see both of us in this special event (his ceremony was a week ago today; mine was Tuesday of that same week). Our 8 year old son now talks about wanting to graduate from college. I'm just so so joyful of this experience. I feel grateful and blessed beyond words.
A bit of background: my hubby and I met as post collegiate athletes training for an Olympic Development team 16 years ago. I was doing a graduate program in education at the time and he took an interest in both my academics and running. A friendship developed and the rest is history.
When I got a college teaching job both my hubby and I enrolled in HTML and C++ classes in the computer sciences department. This was during rhe dotcom era. He was much better at it than me. But then again, despite the fact that we both did language undergrad programs (him in English lit and me in Spanish lit) he rocked the gaming world. I remember saying "hey, you are so good at programming those games you do -- have you ever thought about going back and doing computer science?"
When the fall enrollment came up, we both went and had coffee and signed up for classes in this department together. That was enough to get him hooked. So, when we moved for another college position for me, he officially enrolled at that college as a computer science major, graduated with a second degree, this time a Bachelor of Science.
He was considering a high school teaching job until he met my co-worker's husband. This is a person we are forever grateful for. He asked my husband if he ever thought of the aerospace industry. We both were clueless. He got my husband an internship. Soon afterward he was offered a permanent job but then needed to enroll into a graduate program for job security. This was at a time when our son was born, our son had several medical complications along the way, then 4 years later we lost our daughter at delivery, I entered a graduate program to help our son 6 years ago, then his wife got cancer (me). He's had a full plate and reached the point where no more extensions for the graduate thesis was possible. He had a two week window of cranking out that thesis or the entire 8 years of sacrifice would expire without a degree.
So, he took a full two week vacation to crank that puppy out and did it with flying colors!
He originally didn't want to do the ceremonies since he's pretty low key -- but I convinced him that it is a family affair -- our son deserves to see BOTH his Mommy and Daddy walk at commencement since he's seen us as students pretty much his whole life. Thankfully he agreed after a few months of convincing. To see his happy face at graduation was amazing. He seemed so happy, proud, excited. Our son got to see both of us in this special event (his ceremony was a week ago today; mine was Tuesday of that same week). Our 8 year old son now talks about wanting to graduate from college. I'm just so so joyful of this experience. I feel grateful and blessed beyond words.
Thursday, May 30, 2013
Last Chemo Cycle and White Blood Cell Treatment
Can't believe we've made it to this day that once seemed so far away!!! At today's white blood cell treatment of neulasta, my son, the nurse and I were singing the song from the Sound of Music as I got my shot "These are a few of my favorite things....". Giddy. Excited. We see the finish line!
Yesterday's chemo went well. I was there from 930-4pm. I went in alone this time since we needed our son to be with one of us and this worked out. I chatted with other cancer fighters, read A lot, relaxed. No burning feeling this time. But super hyper from the three days of steroids they give. I slept 3 hours the night going in. Since I don't sleep well during the three days of steroid treatment, I nested by cleaning house while watching reruns of Grey's Anatomy on Netflix. Amazing show! I've never seen this and got addicted right away by watching 7 episodes last night.
Today my neck was stiff but this has been typical throughout chemo. It's like there is no fluid in my neck joints so I use my body to turn in the direction I need to see. Hoping this returns to normal after chemo leaves my body. I should be good in 20 days from this infusion. Hoping the good parts of my body recover well over this next year. Overall, super hopeful and excited that this chemo chapter is coming to a close.
As for what's next? Hormone treatment called Tamoxifen for 5 years --- but I'm doing some serious research into opting out since one of my markers of cancer was estrogen positive, I run daily to create bone density, white blood cells, red blood cells, platelets, I eat healthy, and having a baby is now no longer an option (adoption sounding really good. Our son keeps saying he wants a sister ... One that he can see and play with everyday. Still need to convince hubby ;) once I'm recovered ;).
As for surgery, I'm killing two birds with one stone: I developed a hernia in my abdomen so I'll get that fixed with the final reconstruction phase of exchanging the current balloon spacer for an actual implant. That will take coordinating two surgeons so hoping for a first week in August now. So far I've been healing fast so I'm optimistic that will be ok.
Thank you again for love sent my way!
Xoxoxo
Yesterday's chemo went well. I was there from 930-4pm. I went in alone this time since we needed our son to be with one of us and this worked out. I chatted with other cancer fighters, read A lot, relaxed. No burning feeling this time. But super hyper from the three days of steroids they give. I slept 3 hours the night going in. Since I don't sleep well during the three days of steroid treatment, I nested by cleaning house while watching reruns of Grey's Anatomy on Netflix. Amazing show! I've never seen this and got addicted right away by watching 7 episodes last night.
Today my neck was stiff but this has been typical throughout chemo. It's like there is no fluid in my neck joints so I use my body to turn in the direction I need to see. Hoping this returns to normal after chemo leaves my body. I should be good in 20 days from this infusion. Hoping the good parts of my body recover well over this next year. Overall, super hopeful and excited that this chemo chapter is coming to a close.
As for what's next? Hormone treatment called Tamoxifen for 5 years --- but I'm doing some serious research into opting out since one of my markers of cancer was estrogen positive, I run daily to create bone density, white blood cells, red blood cells, platelets, I eat healthy, and having a baby is now no longer an option (adoption sounding really good. Our son keeps saying he wants a sister ... One that he can see and play with everyday. Still need to convince hubby ;) once I'm recovered ;).
As for surgery, I'm killing two birds with one stone: I developed a hernia in my abdomen so I'll get that fixed with the final reconstruction phase of exchanging the current balloon spacer for an actual implant. That will take coordinating two surgeons so hoping for a first week in August now. So far I've been healing fast so I'm optimistic that will be ok.
Thank you again for love sent my way!
Xoxoxo
Tuesday, May 28, 2013
Cancer Vein Burns: Chemo Cycle 3 Update
One of the side effects I've experienced throughout chemo is burn at the site of infusion. I'm told it is rare -- at my clinic I'm one of 6 experiencing this burn.
I learned from online breast cancer chat/forum posts that taxaotere -- one of my chemo drugs -- can have a nasty reputation of burn when an IV is not properly placed in the vein. Any spillage will burn the skin. So far this is all I've found and it's a mystery with doctors. All they can do is document brand, lot number, batch and hope in the future no repercussions emerge.
In my case, the scars appear ten days later. On this latest chemo cycle the veins did a funny connection of one burn scar to the next (new). Overall this previous cycle did its thing -- it is cumulative so I've been more fatigued and grumpier when I get grumpy. I sleep longer at naps.
The other thing Ive done which I count as treatment or therapy is run 5 miles as soon as I wake in the morning which Ive now completed 23 days of doing this (takes 20 days to form a habit?). On some days I cruise 8 to 9 minutes per mile; my worst was running 19 minute miles. That is how big the range of fatigue can be. Again, it's therapy. The running is pounding. Pounding bones creates red blood cells, white blood cells, platelets. Bone Marrow, bone density is created - it is the exact thing chemo robs you off. So, I fight the bone marrow robber by pounding the @$#*! out of it. And it's helped. Today's labwork is the best I've had ever. Normal white blood cells ranges 4.1 to 10; typical chemo white blood cells is less than 4 and even lower than 1-2 in many; mine was 5.1 today!! Red Blood cells were slightly lower than normal but higher than I've had throughout chemo. Super silver lining! I'm going in strong into my last chemo cycle tomorrow!!!! I get one more graduation this month and I'm on path to upcoming surgery, next phase treatment --- and recovery. The worst is soon over and I see the humongous light ;)
Thank you thank you thank you for positive vibes, thoughts, prayers....you've made a difference in my life and in the life of my family!
I learned from online breast cancer chat/forum posts that taxaotere -- one of my chemo drugs -- can have a nasty reputation of burn when an IV is not properly placed in the vein. Any spillage will burn the skin. So far this is all I've found and it's a mystery with doctors. All they can do is document brand, lot number, batch and hope in the future no repercussions emerge.
In my case, the scars appear ten days later. On this latest chemo cycle the veins did a funny connection of one burn scar to the next (new). Overall this previous cycle did its thing -- it is cumulative so I've been more fatigued and grumpier when I get grumpy. I sleep longer at naps.
The other thing Ive done which I count as treatment or therapy is run 5 miles as soon as I wake in the morning which Ive now completed 23 days of doing this (takes 20 days to form a habit?). On some days I cruise 8 to 9 minutes per mile; my worst was running 19 minute miles. That is how big the range of fatigue can be. Again, it's therapy. The running is pounding. Pounding bones creates red blood cells, white blood cells, platelets. Bone Marrow, bone density is created - it is the exact thing chemo robs you off. So, I fight the bone marrow robber by pounding the @$#*! out of it. And it's helped. Today's labwork is the best I've had ever. Normal white blood cells ranges 4.1 to 10; typical chemo white blood cells is less than 4 and even lower than 1-2 in many; mine was 5.1 today!! Red Blood cells were slightly lower than normal but higher than I've had throughout chemo. Super silver lining! I'm going in strong into my last chemo cycle tomorrow!!!! I get one more graduation this month and I'm on path to upcoming surgery, next phase treatment --- and recovery. The worst is soon over and I see the humongous light ;)
Thank you thank you thank you for positive vibes, thoughts, prayers....you've made a difference in my life and in the life of my family!
Graduation From Academic Program
Earlier this year I blogged about finding out I had cancer in January -- after a January 2nd, 2013 mammogram needing more imaging and testing -- while I was also in a graduate program for communication sciences. It was my third full time year, final semester after three years of prerequisites for a total of six years of our family's life which I did online, in the wee hours of the night when everyone was asleep so as to not use valuable homeschool and home therapy time.
The news of cancer not only initially brought fears of death, but it brought about great great fear as to who would continue my son's education and therapy. Our son is very bright, talented, skilled, warm, loving -- and he also lives with a duplicate chromosome 2 which has caused things like apraxia, dysarthria, hearing loss, GI challenges, and Autism Spectrum Disorder (ASD) in which he is high functioning. I entered the field 6 years ago with 4 other degrees which actually gave us a lot of insight into our son's needs. Therapists told us back then we might never talk or communicate and if so it would be like other clients they saw whose skills got stronger at maybe age ten or later. We were told reading would be the hardest area for us - suggesting we stay at two and three syllable word books until he could say them then move on. They said we would have trouble in other areas of academics and needs and so Special Day classes were our only option. Today, our son is reading 8th grade level as a second grader, he's bilingual in sign and English, he's learning Spanish and Japanese, loves math and science, he plays musical instrument, has reached 5 belts in karate, runs, sing, dances like no other -- he's done the exact opposite of what expectations were made of him. Sure we have challenges still, but our glass is never half empty.
Six years ago we also had to fight specialists in honoring sign language as a language deserving equal status as all languages. In our case, he has a moderate hearing loss and sensory challenges. A moderate hearing loss means he hears but it's like sticking your fingers in your ear then turning away from the person talking. In our case, due to strengths in his peripheral vision (also common in ASD), he picks up side vision movements in both sign and verbal language. But he also fatigues; gradually less over time but we still need supports and naps for instance. Without this, many areas of the brain start to deteriorate --- like the areas housing attention, hearing, brain coordinating and brain planning. Initially when much younger it was all this plus the fact that his mouth was weak (dysarthria) and it wouldn't do what his brain was thinking and wanted to do (apraxia). We had multiple areas of need which have gradually and steadily increased over the years with intervention. Signing is one way that allows access to information and therefore knowledge and access to an education in which one can continue with peers.
We spent years of advocating for our son and of showing them that there are alternative paths to the brain that not only included signing, but music, math, kinesthetic activities and so much more. The neuro field is showing this in its literature with proof of neuroplasticity -- the idea of getting to the same place a different way.
When it comes to signing, for instance, our field of speech language pathology on one end has come a long way in its acceptance of ASL or any mix of sign; and yet divisions occur in which the opposite is true where they say sign hinders language development (this I've never understood since ASL is a language), and is a crutch -- saying all of this with no scientific proof and yet the neuro field shows plenty of brainscans showing benefits. Ironically the negativism and exclusion comes from people who have never been bilingual. Fortunately, as a clinician, I've worked with awesome SLPs and professors. Multimodal and client choices are important. I'm also supportive of people's choices in bilingualism, of inclusion of all languages.
Alternative pathways to the brain means using the visual cortex (if not blind), the temporal, parietal, frontal lobes, the cerebellum, the midbrain through activities like music, math, kinesthetic movements, breathing and core activities -- using all possible ways. It is like if you are driving on the 101 and end up in a traffic jam on the way to downtown San Francisco, one has a couple of options: one could sit in traffic doing the same thing and never move at all OR one could actively take the streets or frontage roads. One could get there period by taking these alternate paths -- and in many cases, can get there even faster. In talking about brain injuries, for example, It's classic Aesop in the end -- I'd pick the constantly moving Tortoise on the frontage road over the non-progressing Hare stuck on the freeway any day (tortoise, by the way, doesn't imply slow -- have you ever seen one jump off a dock into water and seen it pass a fish? They are fast! And unlike the hare -- they have bi features of land and water). That's how the brain and neuroplasticity works and there's plenty of science behind this. It's the path we chose. It's the same path I chose years (hmm. I guess decades now ;)) when doctors told me my running career was over after injuries including a pulled achilles. And yet cross training proved otherwise, ultimately leading me to tasting a wonderful professional career as an elite athlete and later Olympian. And yet in January after learning about my cancer, the thought of continuing with the last items of this particular graduate program prior to this graduation -- the state license and the three year cumulative exam known as 'comps' -- was far from my mind. I was in survival mode fighting my way through mountains of information regarding upcoming tests, imaging, surgeries, chemotherapy, cancer causes, foods cancer likes, my plan to deprive cancer and much more. I had almost given up on my latest academic career in which all these degrees or areas of study are interdisciplinary, informing one another in a full circle of useful application.
I did a lot of soul searching, praying, bargaining, asking for positive energy around me... I wanted a window, not necessarily a big one but just any glimmer of a window that would allow me the opportunity to take my license and comps exams this semester. It was a long shot -- especially in coordinating the schedules of two surgeons and one oncologist AND beating the time they believed my cancer cells would continue aggressively and invasively doing It's thing. The four week window between mastectomy and chemo miraculously, it seemed, to appear. I took it as a sign -- I had to at least try. The worst that can happen is that I wouldn't pass this time around. But there really was no time thinking such thoughts since last moment studying and actual test taking was enough in itself.
Earlier when I blogged about passing that first exam -- the license -- I mentioned I cried like a baby. I was grateful, relieved, filled with purpose.
When we drove to graduation on
May 21st, 2013, I was excited--but, for me, putting that cap and gown on once we parked on campus was like actually getting on a plane to a much wanted trip; it's realness sent chills up my spine. I was literally flying! I loved meeting my flight companions, too, (my classmates of the past three years which I've had the privilege of getting to know and studying with over three full time years without a break; the ones who couldn't make it were there in spirit). The program was far from easy. In fact, for me, it was the hardest degree to get through for many reasons. It's a science field which demands a command of human anatomy, physiology, assessment, treatment while also working on fast paced teams of doctors, physical therapists, occupational therapists, nurses, administrators, families and caregivers (I typically read daily from 4am-8am and worked with clients on Fridays). For me and my family, we also buried our daughter, survived septic shock post delivery, experienced a tumor which appeared two years ago in my pelvis which required surgery, advocated for our son through various diagnosis assessments and treatments, and now fought an aggressive and invasive cancer that I only read about in others until this January. It is the most meaningful of degrees I've ever experienced.
Surviving for me has always meant a chance in life. I hope this chance, with this latest degree, gives me a chance to work with severe cases in which an alternative and yet evidence based scientific path can make a difference. I've seen it already in everyone I've worked with over these past three years, past 8 years with our son, and I am grateful that this path is open to me. None of this was on my own; I've had so much support in so many ways. I'm so grateful.
I'm grateful that my son has fueled this passion -- and I'm so so grateful I am getting to live, I am still getting to be the main driver of his education and therapy AND most importantly, I am getting to be his main advocate and mom.
The news of cancer not only initially brought fears of death, but it brought about great great fear as to who would continue my son's education and therapy. Our son is very bright, talented, skilled, warm, loving -- and he also lives with a duplicate chromosome 2 which has caused things like apraxia, dysarthria, hearing loss, GI challenges, and Autism Spectrum Disorder (ASD) in which he is high functioning. I entered the field 6 years ago with 4 other degrees which actually gave us a lot of insight into our son's needs. Therapists told us back then we might never talk or communicate and if so it would be like other clients they saw whose skills got stronger at maybe age ten or later. We were told reading would be the hardest area for us - suggesting we stay at two and three syllable word books until he could say them then move on. They said we would have trouble in other areas of academics and needs and so Special Day classes were our only option. Today, our son is reading 8th grade level as a second grader, he's bilingual in sign and English, he's learning Spanish and Japanese, loves math and science, he plays musical instrument, has reached 5 belts in karate, runs, sing, dances like no other -- he's done the exact opposite of what expectations were made of him. Sure we have challenges still, but our glass is never half empty.
Six years ago we also had to fight specialists in honoring sign language as a language deserving equal status as all languages. In our case, he has a moderate hearing loss and sensory challenges. A moderate hearing loss means he hears but it's like sticking your fingers in your ear then turning away from the person talking. In our case, due to strengths in his peripheral vision (also common in ASD), he picks up side vision movements in both sign and verbal language. But he also fatigues; gradually less over time but we still need supports and naps for instance. Without this, many areas of the brain start to deteriorate --- like the areas housing attention, hearing, brain coordinating and brain planning. Initially when much younger it was all this plus the fact that his mouth was weak (dysarthria) and it wouldn't do what his brain was thinking and wanted to do (apraxia). We had multiple areas of need which have gradually and steadily increased over the years with intervention. Signing is one way that allows access to information and therefore knowledge and access to an education in which one can continue with peers.
We spent years of advocating for our son and of showing them that there are alternative paths to the brain that not only included signing, but music, math, kinesthetic activities and so much more. The neuro field is showing this in its literature with proof of neuroplasticity -- the idea of getting to the same place a different way.
When it comes to signing, for instance, our field of speech language pathology on one end has come a long way in its acceptance of ASL or any mix of sign; and yet divisions occur in which the opposite is true where they say sign hinders language development (this I've never understood since ASL is a language), and is a crutch -- saying all of this with no scientific proof and yet the neuro field shows plenty of brainscans showing benefits. Ironically the negativism and exclusion comes from people who have never been bilingual. Fortunately, as a clinician, I've worked with awesome SLPs and professors. Multimodal and client choices are important. I'm also supportive of people's choices in bilingualism, of inclusion of all languages.
Alternative pathways to the brain means using the visual cortex (if not blind), the temporal, parietal, frontal lobes, the cerebellum, the midbrain through activities like music, math, kinesthetic movements, breathing and core activities -- using all possible ways. It is like if you are driving on the 101 and end up in a traffic jam on the way to downtown San Francisco, one has a couple of options: one could sit in traffic doing the same thing and never move at all OR one could actively take the streets or frontage roads. One could get there period by taking these alternate paths -- and in many cases, can get there even faster. In talking about brain injuries, for example, It's classic Aesop in the end -- I'd pick the constantly moving Tortoise on the frontage road over the non-progressing Hare stuck on the freeway any day (tortoise, by the way, doesn't imply slow -- have you ever seen one jump off a dock into water and seen it pass a fish? They are fast! And unlike the hare -- they have bi features of land and water). That's how the brain and neuroplasticity works and there's plenty of science behind this. It's the path we chose. It's the same path I chose years (hmm. I guess decades now ;)) when doctors told me my running career was over after injuries including a pulled achilles. And yet cross training proved otherwise, ultimately leading me to tasting a wonderful professional career as an elite athlete and later Olympian. And yet in January after learning about my cancer, the thought of continuing with the last items of this particular graduate program prior to this graduation -- the state license and the three year cumulative exam known as 'comps' -- was far from my mind. I was in survival mode fighting my way through mountains of information regarding upcoming tests, imaging, surgeries, chemotherapy, cancer causes, foods cancer likes, my plan to deprive cancer and much more. I had almost given up on my latest academic career in which all these degrees or areas of study are interdisciplinary, informing one another in a full circle of useful application.
I did a lot of soul searching, praying, bargaining, asking for positive energy around me... I wanted a window, not necessarily a big one but just any glimmer of a window that would allow me the opportunity to take my license and comps exams this semester. It was a long shot -- especially in coordinating the schedules of two surgeons and one oncologist AND beating the time they believed my cancer cells would continue aggressively and invasively doing It's thing. The four week window between mastectomy and chemo miraculously, it seemed, to appear. I took it as a sign -- I had to at least try. The worst that can happen is that I wouldn't pass this time around. But there really was no time thinking such thoughts since last moment studying and actual test taking was enough in itself.
Earlier when I blogged about passing that first exam -- the license -- I mentioned I cried like a baby. I was grateful, relieved, filled with purpose.
When we drove to graduation on
May 21st, 2013, I was excited--but, for me, putting that cap and gown on once we parked on campus was like actually getting on a plane to a much wanted trip; it's realness sent chills up my spine. I was literally flying! I loved meeting my flight companions, too, (my classmates of the past three years which I've had the privilege of getting to know and studying with over three full time years without a break; the ones who couldn't make it were there in spirit). The program was far from easy. In fact, for me, it was the hardest degree to get through for many reasons. It's a science field which demands a command of human anatomy, physiology, assessment, treatment while also working on fast paced teams of doctors, physical therapists, occupational therapists, nurses, administrators, families and caregivers (I typically read daily from 4am-8am and worked with clients on Fridays). For me and my family, we also buried our daughter, survived septic shock post delivery, experienced a tumor which appeared two years ago in my pelvis which required surgery, advocated for our son through various diagnosis assessments and treatments, and now fought an aggressive and invasive cancer that I only read about in others until this January. It is the most meaningful of degrees I've ever experienced.
Surviving for me has always meant a chance in life. I hope this chance, with this latest degree, gives me a chance to work with severe cases in which an alternative and yet evidence based scientific path can make a difference. I've seen it already in everyone I've worked with over these past three years, past 8 years with our son, and I am grateful that this path is open to me. None of this was on my own; I've had so much support in so many ways. I'm so grateful.
I'm grateful that my son has fueled this passion -- and I'm so so grateful I am getting to live, I am still getting to be the main driver of his education and therapy AND most importantly, I am getting to be his main advocate and mom.
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