I found out a couple of days ago that my husband has not yet read my blog. "I think that I read most of the first post", he said. I am going to use this opportunity to let him know a few of the many things that I love about him, and also some things that make me laugh. I wonder how long it will be before he sees it.
He always manages to muster a little energy after work for "Daddy Monster". This involves chasing the children around the house roaring like a monster, catching and tickling or wrestling Astrid and Alexander.
Inspite of me teeling him that life must go on he is reluctant to schedule his own physical at the docs. in case it clashes with one of appointments that I have't even made yet. Although frankly his memory is worse than mine at this point and he never remembers the things that the doc tells me:)
He is always asking me if I have remembered to take my pils while invariably forgeting his own.
He takes Alexander out after dark and like the brave warriers they are they valiently protect the family by eliminating as many scorpions as they can catch. This is one of Alexander's favorite things to do.
He prefers chemical baths (jumping in the pool) to an actual shower.
He is trying hard to get fitter as he knows that he will have to step up a bit where running the house, children's activities and business is concerned. He has been on the running machine twice now I think:)
He holds me when I get scared and then I begin to feel safe again.
He will always make sure that we have planned for the future whatever that may be.
He carries Astrid (5) to bed "like a baby" each night and looks under her bed and in the closet so that she feels safe and loved.
He will microwave those revolting smelling chicken nuggets for Astrid as he knows that the smell makes me want to vomit. (I have a very sensitive nose and a lot of smells make me want to vomit, I hope this does not get worse when I start the chemo)
I love you Karl, the last thirteen years of my life have been the best ever. We have built a wonderful life together and acheived so much, long may it continue.
Saturday, August 27, 2011
Wednesday, August 24, 2011
Children and Nightmares
Maybe I am giving this more thought than it needs but both children are having nightmares on a regular basis. Astrid has them most nights and they break my heart. They are often about the family getting attacked by a variety of monsters. She has wings so can fly away. Once she told me that she ripped off one of her wings to give to me so that I could escape too. It did not stick so I still couldn't escape. It took all of my strength not to break down and cry with her. I told her to keep her wings and escape.
Alexander has also been having the same type of dreams of monsters attacking the family.
Maybe this is normal for this age group but I cannot help thinking that they are worried about me. I think that at some stage in the future we will have to consider counseling, but I don't want to give this tumor more visibility in their lives than it deserves right now. They have no idea (I think), how serious this is.
Alexander has also been having the same type of dreams of monsters attacking the family.
Maybe this is normal for this age group but I cannot help thinking that they are worried about me. I think that at some stage in the future we will have to consider counseling, but I don't want to give this tumor more visibility in their lives than it deserves right now. They have no idea (I think), how serious this is.
BBC Investigative Journalism on stalled Brain Tumor Research
http://www.bbc.co.uk/programmes/b013xsm1
"Treating Tumours: Old Drug, New Tricks"
The BBC Radio 4 on chlorimipramine is now available as a pod cast (thanks Mum). The use of this drug seems a very long way off, but anecdotal and lab work seems promising.
"Treating Tumours: Old Drug, New Tricks"
The BBC Radio 4 on chlorimipramine is now available as a pod cast (thanks Mum). The use of this drug seems a very long way off, but anecdotal and lab work seems promising.
Tuesday, August 23, 2011
On weight loss
For the record, I have lost approximately 30lb since February. This has been due to hard work and strength of will after the LPR diagnosis. This coupled with a large dose of fear about waking up choking made my "no eating or drinking after 7pm" diet a success. The weight loss is not due to the Tumor (not sure why it deserves capitalization, I think the next reference will diminish it with a lower case t.). This is my ideal weight and still a little over my pre-children weight when I was skinny.
That is not to say that once I start the chemo that my weight will not drop. If it does you can blame the tumor then and bring on the cookies:)
But currently, I deserve the credit, NOT the tumor:)
That is not to say that once I start the chemo that my weight will not drop. If it does you can blame the tumor then and bring on the cookies:)
But currently, I deserve the credit, NOT the tumor:)
Monday, August 22, 2011
My Perspective on the Tumor
It will not beat me. Thanks to the early diagnosis of LPR in March 2011 (silent reflux) I am lean and fit and strong. I ride horses hard 3 or 4 times a week, take vitamins, drink no alcohol, eat little junk and try to eat healthy food. Mostly, although I do have a gummi bear habit (again not a secret "My Mummy is going to get really sugared up if she eats all of those"). I have a lot to live for. I love my two children and husband fiercely. I have an amazing circle of friends who will help me through this. Maybe I am wrong but I view this a a phase in my life that I will work through and come out of the other end. It does disturb me that nothing really has changed prognosis wise for brain tumor patients in the last 40 something years. But I am hopeful that this will change. The hard part at the moment is that as well as never physically leaving my head, it inhabits my thoughts constantly. The only time that I don't think think about it is when I am riding a horse. All my thoughts, feelings, body and soul have to be focused on the horse. It is incredible therapy.
Aug 22nd - Reality
I have had no nocturnal seizures since June 5th. I feel great, fit and strong. No other symptoms. How can I possibly have a brain tumor? Reality hits again when I have a phone call from the neuro-oncologist office to schedule an appointment. I know that I have to start this right away but I feel so good right now and I have a feeling that will stop pretty quickly once I start on the Temador.
Aug 21st: - chlorimipramine?
Email from my Mum in England about a program airing on radio 4. It is basically an investigative journalist piece about why am old drug (chlomipramine) that has been proven to be beneficial in shrinking / and or stopping glioma progression is not being used due to lack of funding for clinical trials. I will have to follow this closely. In Karl's words "patent expiration".
August 19-21 - Romance Weekend
An incredible thoughtful and special gift from our San Diego beach holiday friends. They insisted on adding our two children to their three and looking after them all weekend while Karl and I have a weekend to regroup and connect. We decided to go back to Enchantment Resort in Sedona the place where we had a "romance weekend" in 1998 when we were first dating. The weekend was lovely. Friday evening we had fantastic electrical storms plus beautiful rainbows over the red rocks while we had dinner. Saturday we just lazed around the spa pool. Karl had a massage and I had a facial. Oddly there was a group of friends there that Karl got talking to also having a weekend of relaxation before one of the group started chemo. I loved the weekend although missed my two sweet children. They of course wanted to know when they could do it again, they had so much fun.
My husband's perspective
"I don't even know how to make "Mummy Mac and Cheese" This is our son's all time favorite meal. "Tell me everything you do at work now before your biopsy". We have a very strong partnership both at work and personally, but well differentiated in terms of who does what. I have been the one to leave work early and do the homework, play dates etc. While Karl is a slave to code and nurturing the eye tracker, and will miss meals if I don't call. I don't blame him for panicking right now.
Tumor Perspective from the children
Of course being 8 and 5, the children know something is up with Mummy but to them I am invincible. I explained to them that the doctor took pictures of my brain (which I showed them), and found something that should not be there which he needed to take out and look at to see what it is. Of course they wanted to know how he did it. I showed them the stitch ("cool"), and the hole with bruise ("wow how did they bolt your head to the table?"). Being the engineer that he is destined to be my 8 year old son wanted to know how they got my brain out from such a small hole. I told him they sucked it out with a needle. He then looked concerned and asked if they put it back in. When I said no, he thought for a moment and asked what they did with it. "Is the doctor a zombie? Did he eat it?". I said that I was pretty sure that he was not a zombie doctor and that he did not eat it. That seemed to satisfy him. Too much Scooby Doo I think.Of course nothing is a secret to them so the cub house lady at the local grocery store knows all about it, Astrid wanted me to tell all of her friends about "what happened to your brain Mummy". This is when I realized that it would probably be easier to tell people rather than not.
August 18th - Well Differentiated Astrocytoma. WHO Grade II
August 18th
Appointment with neurosurgeon to hear the diagnosis from the biopsy. Well differentiated astrocytoma. WHO Grade II. Not operable. Start chemo now and save radiation for later. There is a lot of debate over whether to start radiation immediately with the chemo or to delay it for when (not if) it progresses. I have had two tumor boards review my stuff and both came up with the same indecision. Not sure if that makes be feel better or not. Of course Karl wanted to know worst case for that the doc had seen with somebody in my condition. The answer was grim.. Progression in 6 months and dead in 12 months. He then went on to tell me of 17 and 22 year survivors.
Appointment with neurosurgeon to hear the diagnosis from the biopsy. Well differentiated astrocytoma. WHO Grade II. Not operable. Start chemo now and save radiation for later. There is a lot of debate over whether to start radiation immediately with the chemo or to delay it for when (not if) it progresses. I have had two tumor boards review my stuff and both came up with the same indecision. Not sure if that makes be feel better or not. Of course Karl wanted to know worst case for that the doc had seen with somebody in my condition. The answer was grim.. Progression in 6 months and dead in 12 months. He then went on to tell me of 17 and 22 year survivors.
Aug 8th - Needle Biopsy
Dropped off the children at a good friends so that we could check in at the hospital 7am. Surgery planned for 9:30, delayed an hour and got in at 10:30. The resident came in to test my neurological responses prior to surgery. After asking me to follow his finger with my eyes, etc. then he said pull his hands and I heard my horse trainer's voice telling me to pull back with both hands. When he says that he means to pull hard. I pulled the resident on top of me on the bed. His face was a picture. I still giggle now when I think about that. The anesthesiologist couldnt help pulling a face when I mentioned laryngospams. Quick visit from neurosurgeon and then off we went.
And then I woke up with the nurse talking nicely to me and wiping the blood of my face before she got my husband and good friend in. The blood was not from the actual biopsy incision, but from "where they bolted my head to the frame". I felt fine except my throat hurt like hell. The nurse asked me if I wanted to go home and I said YES!! The incision from the biopsy hardly deserves the title incision. It is so small with one tiny little stitch and no hair cut or shaved. I literally have to look hard to find it. Great surgeon. I asked for water and drank it too quickly so then felt sick. Got the zofran and started to feel better.
While Karl went to get the car (he misses all the good bits) the neurosurgeon came in and said that all went well. Initial pathology showed low grade glioma. Not operable as it had already spread and was in a too sensitive spot. Chemo was the next step.I asked him prognosis (not sure why I did that as I was half out of it from the anesthetic).
He said "Good. Not excellent." I asked him "Why not excellent?" He said "Because you have a brain tumor".
And then I woke up with the nurse talking nicely to me and wiping the blood of my face before she got my husband and good friend in. The blood was not from the actual biopsy incision, but from "where they bolted my head to the frame". I felt fine except my throat hurt like hell. The nurse asked me if I wanted to go home and I said YES!! The incision from the biopsy hardly deserves the title incision. It is so small with one tiny little stitch and no hair cut or shaved. I literally have to look hard to find it. Great surgeon. I asked for water and drank it too quickly so then felt sick. Got the zofran and started to feel better.
While Karl went to get the car (he misses all the good bits) the neurosurgeon came in and said that all went well. Initial pathology showed low grade glioma. Not operable as it had already spread and was in a too sensitive spot. Chemo was the next step.I asked him prognosis (not sure why I did that as I was half out of it from the anesthetic).
He said "Good. Not excellent." I asked him "Why not excellent?" He said "Because you have a brain tumor".
Aug 5th - Functional MRI and Pre-Op Testing
Friday 5th August
Pre-op blood work etc. Passed with flying colors. Of course. Then spent almost 2 hours in the magnet. The first part was the functional MRI. Not too bad and karl got to sit with the doc and watch parts of my brain light up as I went through the tests. He thought that was pretty cool. Then without being allowed out of that loud tube I had the anatomical part of the MRI with and without contrast. Almost two hours in all. Crazy. The good thing about it though is that they couldn't remove the fancy display goggles that I was looking at for the functional MRI so I got to look at a slide show of pretty landscapes. Much better than the inside if the magnet.
Pre-op blood work etc. Passed with flying colors. Of course. Then spent almost 2 hours in the magnet. The first part was the functional MRI. Not too bad and karl got to sit with the doc and watch parts of my brain light up as I went through the tests. He thought that was pretty cool. Then without being allowed out of that loud tube I had the anatomical part of the MRI with and without contrast. Almost two hours in all. Crazy. The good thing about it though is that they couldn't remove the fancy display goggles that I was looking at for the functional MRI so I got to look at a slide show of pretty landscapes. Much better than the inside if the magnet.
July 11th - Repeat MRI
July 18th
I had a repeat MRI scheduled for July 11th and follow up with the neurologist on the 18th. Karl could not come with me that day. I fully believed that I would be sent to the MS specialist and would start MS treatment. I was not afraid of this, it seemed that treatments for MS had progressed so much that I could manage it and not become too effected by it until maybe in old age.
That was not how the appointment went. My neurologist was amazing. He had read the report from the radiologist and found it to be wishy-washy and just follow-uppy that he met with the radiologist and went over some of my history. The addendum to the MRI that they wrote together and that he read to me said that there were changes to the lesions and that "they" were looking less like MS and more like a tumor. These words washed over me and I really felt no emotion as he referred me to a neuro-surgeon at Barrows for a consult. He increased clonazepam to 1mg per night and gave me a trial pack of Lamictal XR to control what are now described as nocturnal seizures.
26th July
Met with neurosurgeon today and he went through scans etc. He tells me that I have a primary glioma in the speach / throat area of the brain. (brain tumor). The area is too large to remove surgically without damaging me more so surgery will be a last resort.Next week I will have a functional MRI which is where they look at my brain while I am doing things like swallowing, wiggling my fingers, thinking etc so that they can tell if the tumor is actually in the speach / throat area or next to it causing pressure. i.e. what areas to avoid when they suck out the tissue for biopsy.
After that I have a brain biopsy to determine what type of tumor it is and if it would respond to chemotherapy. How rapidly it is growing etc. Will continue anti seizure medication to hopefully control the seizures.
I walked out of his office with tears running down my face. They did not stop until we picked up the children.
The good news is it appears to be slow growing. I am trying to remain positive for Karl and the children but right now I am in shock. Will know more information about prognosis after the biopsy.
Cannot stop thinking and googling. All of the questions that that I should have asked of course I did not. Will my head be shaved? Will I die this year? The only question I asked was "If this is somehow related to chromosomes, is it genetic and will my children get it?"It all hit me suddenly one afternoon this week and I started to cry uncontrollably. I have heard the expression "keening sound of grief" but never really knew what it sounded like. I know now. I cried not for me but for my two young children. Too young to lose their Mummy. I do not want to die.
I had a repeat MRI scheduled for July 11th and follow up with the neurologist on the 18th. Karl could not come with me that day. I fully believed that I would be sent to the MS specialist and would start MS treatment. I was not afraid of this, it seemed that treatments for MS had progressed so much that I could manage it and not become too effected by it until maybe in old age.
That was not how the appointment went. My neurologist was amazing. He had read the report from the radiologist and found it to be wishy-washy and just follow-uppy that he met with the radiologist and went over some of my history. The addendum to the MRI that they wrote together and that he read to me said that there were changes to the lesions and that "they" were looking less like MS and more like a tumor. These words washed over me and I really felt no emotion as he referred me to a neuro-surgeon at Barrows for a consult. He increased clonazepam to 1mg per night and gave me a trial pack of Lamictal XR to control what are now described as nocturnal seizures.
26th July
Met with neurosurgeon today and he went through scans etc. He tells me that I have a primary glioma in the speach / throat area of the brain. (brain tumor). The area is too large to remove surgically without damaging me more so surgery will be a last resort.Next week I will have a functional MRI which is where they look at my brain while I am doing things like swallowing, wiggling my fingers, thinking etc so that they can tell if the tumor is actually in the speach / throat area or next to it causing pressure. i.e. what areas to avoid when they suck out the tissue for biopsy.
After that I have a brain biopsy to determine what type of tumor it is and if it would respond to chemotherapy. How rapidly it is growing etc. Will continue anti seizure medication to hopefully control the seizures.
I walked out of his office with tears running down my face. They did not stop until we picked up the children.
The good news is it appears to be slow growing. I am trying to remain positive for Karl and the children but right now I am in shock. Will know more information about prognosis after the biopsy.
Cannot stop thinking and googling. All of the questions that that I should have asked of course I did not. Will my head be shaved? Will I die this year? The only question I asked was "If this is somehow related to chromosomes, is it genetic and will my children get it?"It all hit me suddenly one afternoon this week and I started to cry uncontrollably. I have heard the expression "keening sound of grief" but never really knew what it sounded like. I know now. I cried not for me but for my two young children. Too young to lose their Mummy. I do not want to die.
Feb - June 2011 History leading up to diagnosis
2011
Feb 6th:
When I went to bed I knew that I had drank a few too many glasses of wine and would suffer in the morning. Not sure why I did it especially as it was a Sunday and I had work and school to think of. I didn't think, just drank. Not sure exactly what time it happened by I woke suddenly with a huge cramp in my leg and what I thought at the time as my tongue stuck down the back of my throat choking me. I got out of bed unable to breathe and starting hitting myself on the back to get my tongue out. I have no idea how long I did this for until the black closed in on me. It was literally as if dark was closing in on me to a point. As it happened I thought, this is it. I am dying.
Some time later, again I have no idea of the time that passed, I came to and went back to bed. Too scared to sleep I sat up. Being an avid googler even then, I read up about people having too much to drink, falling asleep on their back and choking on their tongue. I vowed never to drink again and thought not much more about it. The next few nights were pretty uncomfortable as I tried to sleep with my tongue sticking out.
I have never been so scared. I really though that I was dying as everything faded to black.
March 10th
It happened again. No alcohol. This time the sensation was more as if my throat was literally locking shut. How could this happen? Googled more stuff, read about sleep apnea etc. I then spoke with a good friend and she suggested going to an ENT and recommended one. Very nice Doc. I described my symptoms to him and he listened and then told me that he didn't believe it was sleep apnea (cannot believe now the relief I felt to hear that). He looked in the back of my throat and said he saw that my larynx looked as if somebody had poured battery acid on it. It was so red and my lingual tonsils were inflamed. Diagnosis: LPR causing laryngospasm as the acid splashed against my larynx. The evidence was there. Started regimen of PPIs and no eating after 7pm, I was happy to have found a solution so easily and quickly.
April 17th
It happened again. Really scared. So scared in fact that I asked my husband Karl to take me to the hospital in the middle of the night. The bad thing is that Karl and I have always been on different schedules as far as sleep goes. I am an early to bed early to rise and he is exactly the opposite. At this point he had never seen this happen but could tell I was really scared, so he was worried and we bundled the children in the car went to the local hospital.
We parked outside the ER entrance and the security guard watched the sleeping children while a wheel chair was found. I told Karl to go home and put the children back to bed. ENT told them to admit me for which I was so grateful. I was so scared and felt that being in the hospital was going to keep me safe. I was transferred to a larger hospital and admitted to the cardiac ward. Strapped up to heart monitors, oxygen etc. Given steroids to reduce inflammation and IV antibiotics. I had done everything the doc advised, my throat had cleared up. Why was this still happening? The ENT doctor was also concerned and ordered MRI of brain and throat, plus barium swallow. The next day he told me that their were "small white matter lesions" found on the MRI images of my brain and he was referring me to a neurologist. Didn't have a clue what that meant. The neurologist then ordered a series of other tests including a spinal tap. Nothing came up in the spinal tap and other blood work. By this time I had spent 4 nights in the hospital and the neurologist said other tests such as EEGs and sleep studies should be done as an out patient.
Passed EEG day time test, plus night time EEG and full sleep study with flying colors. Nobody really knew what to do with me. Could be multiple sclerosis but this was not really a symptom of MS. Was advised to continue PPIs etc, given .5mg of clonazepam to help me sleep as the fear was getting high by this point. Arranged follow up MRI for July, 3 months away.
June 5th
It happened again. We were on vacation in beautiful San Diego with good friends. Had spent a beautiful relaxing day on the beach watching the children enjoy their friends and the freedom of a quiet Mission Beach in early June. It was a magical day. Then I woke up again with my larynx closed shut unable to breathe. Luckily this time Karl was sleeping next to me and I managed to wake him somehow. Obviously with my larynx slammed shut I cannot call out so it involved punching his arm or something. This time Karl shared the experience. He could see my fear and that I could not breathe. He held me in his arms trying to keep me awake but of course it all faded to black. He called 911 and dashed to the beach house next door to wake our friends. Our children were in safe hands as Karl rode in the front of the ambulance. The staff were nice but couldn't see what to do with me so I was discharged the next afternoon. The beach vacation continued as normal for the children but for Karl and I it was tinged with fear. He later said that he thought I was dying in his arms.
June and July ish: went down some rabbit holes with endoscopy and talk of fundoplication surgery but my gut (ha ha) told me that this was not it.
Feb 6th:
When I went to bed I knew that I had drank a few too many glasses of wine and would suffer in the morning. Not sure why I did it especially as it was a Sunday and I had work and school to think of. I didn't think, just drank. Not sure exactly what time it happened by I woke suddenly with a huge cramp in my leg and what I thought at the time as my tongue stuck down the back of my throat choking me. I got out of bed unable to breathe and starting hitting myself on the back to get my tongue out. I have no idea how long I did this for until the black closed in on me. It was literally as if dark was closing in on me to a point. As it happened I thought, this is it. I am dying.
Some time later, again I have no idea of the time that passed, I came to and went back to bed. Too scared to sleep I sat up. Being an avid googler even then, I read up about people having too much to drink, falling asleep on their back and choking on their tongue. I vowed never to drink again and thought not much more about it. The next few nights were pretty uncomfortable as I tried to sleep with my tongue sticking out.
I have never been so scared. I really though that I was dying as everything faded to black.
March 10th
It happened again. No alcohol. This time the sensation was more as if my throat was literally locking shut. How could this happen? Googled more stuff, read about sleep apnea etc. I then spoke with a good friend and she suggested going to an ENT and recommended one. Very nice Doc. I described my symptoms to him and he listened and then told me that he didn't believe it was sleep apnea (cannot believe now the relief I felt to hear that). He looked in the back of my throat and said he saw that my larynx looked as if somebody had poured battery acid on it. It was so red and my lingual tonsils were inflamed. Diagnosis: LPR causing laryngospasm as the acid splashed against my larynx. The evidence was there. Started regimen of PPIs and no eating after 7pm, I was happy to have found a solution so easily and quickly.
April 17th
It happened again. Really scared. So scared in fact that I asked my husband Karl to take me to the hospital in the middle of the night. The bad thing is that Karl and I have always been on different schedules as far as sleep goes. I am an early to bed early to rise and he is exactly the opposite. At this point he had never seen this happen but could tell I was really scared, so he was worried and we bundled the children in the car went to the local hospital.
We parked outside the ER entrance and the security guard watched the sleeping children while a wheel chair was found. I told Karl to go home and put the children back to bed. ENT told them to admit me for which I was so grateful. I was so scared and felt that being in the hospital was going to keep me safe. I was transferred to a larger hospital and admitted to the cardiac ward. Strapped up to heart monitors, oxygen etc. Given steroids to reduce inflammation and IV antibiotics. I had done everything the doc advised, my throat had cleared up. Why was this still happening? The ENT doctor was also concerned and ordered MRI of brain and throat, plus barium swallow. The next day he told me that their were "small white matter lesions" found on the MRI images of my brain and he was referring me to a neurologist. Didn't have a clue what that meant. The neurologist then ordered a series of other tests including a spinal tap. Nothing came up in the spinal tap and other blood work. By this time I had spent 4 nights in the hospital and the neurologist said other tests such as EEGs and sleep studies should be done as an out patient.
Passed EEG day time test, plus night time EEG and full sleep study with flying colors. Nobody really knew what to do with me. Could be multiple sclerosis but this was not really a symptom of MS. Was advised to continue PPIs etc, given .5mg of clonazepam to help me sleep as the fear was getting high by this point. Arranged follow up MRI for July, 3 months away.
June 5th
June and July ish: went down some rabbit holes with endoscopy and talk of fundoplication surgery but my gut (ha ha) told me that this was not it.
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