I hope this information helps others interested in Hemangiopericytoma (gonna be a lot of those, lol)...it may be heavy, it will have cuss words, but it is MY experience and I haven't seen a lot about this type of cancer on the web so if my experience can educate someone who may be going through the same thing….
The Diagnosis - May of 2002 - I am a 36 year-old, 18 years married, mother of two who was diagnosed with hemangiopericytoma this past spring (2002). Three days before Easter, I was shopping when I felt my leg start to go numb and my foot became paralyzed on my way out of the shop. (This had happened to me 2 weeks prior when I was at home, but I blew it off, since I was at home, and it got better in about 15 minutes. If this were any member of my family, they would have been in the ER right away, but since it’s me, I didn’t want to waste anyone’s time.) This time, I was out in the world and as my leg got progressively worse, I needed to use a shopping cart to make it back to my car. I got in the car, called JC, and started to cry. Luckily, it was my left leg and I could drive home so JC could meet me and take me into the ER in our city. I had no idea what it was, since I am relatively healthy and I had quit smoking 6 weeks before (why do we think that current good behavior will save us from bad things?). My greatest fear was that it was MS, which is the only thing I could find in the Merck Manual about parts of you going numb. In the ER, after the usual dance, the initial prognosis was a stroke (when I mentioned that I had quit smoking, the neurologist said "and how long did you smoke before this?") so they sent me in for a CT scan and JC left to pick up our son from his friend's house. (I made him do it, he didn’t want to leave me).
Very shortly after my CT scan, the Emergency Room Doctor comes into my cubicle and asks “Where is your husband?”. Ok, this is not a good sign, the doctor is afraid of the “hysterical” woman response, it must really be bad…I resolve to handle it coolly so as not to freak the poor man out. He sits down and tells me that they have found a tumor in my right frontal lobe which is pressing on my brain and causing the leg problems and that he will be referring me to a neurosurgeon. A WHAT??! A brain tumor? You have GOT to be kidding… I had a father with bone cancer, a husband with kidney cancer…perhaps I have covered this territory enough for one life? I ask him to arrange for me and JC to see the CT scan (I believed the diagnosis, I just like to see everything, after all, I am paying, I get to see). He leaves the cubicle and I sit numb for a few minutes as the fact that this is my actual life sinks in and I begin to cry…a lot…quietly, but a lot. The ER nurse (one of a long line of wonderful people who took care of me throughout this adventure) comes in and holds me (you have to have a certain ability to hold someone you don’t even know without it being weird and Pram is gifted that way). She also arranges for me to call JC so he comes back right away (hospital complaint #1: have some way for the patient to call long distance without being in the middle of a room full of people. The ER patients didn’t need to hear me telling my husband I have a brain tumor, nor did they need to hear me cry when I told him. You won’t let us use our own cell phones…so provide something for us, it’s not like I’m trying to order pizza). While waiting for JC to come back, I am admitted into the hospital (that list of questions…I learned what an “eye opener” is (drink in the morning the day after) and laughed at “do you think you drink too much?” (if I did, would I tell you?) as well as the ones skirting around whether or not you are crazy…let’s find entertainment where we can is my life motto), cry some more and fall sort of asleep.
The next thing I know, this gentle hand is on my shoulder (“I told them no clergy!” No offense to the clergy, but I prefer to be comforted by those who know me.) and it is my first introduction to my neurosurgeon. Gentle, kind and in the business for the past 30 years. In the gentlest way possible, he lets me know what I am in for…here are the notes I made:
is in back of head
looks “angry” and “aggressive”
tennis ball sized
mottled appearance (bad)
may not be able to take out all, too near the Superior Saggital Sinus, potential for too much bleeding
Have to remove bone invaded by tumor -
titanium mesh to close
Dilantin for the next 2 years (anti-seizure meds)
Brain transducer for 4 days (wire running from brain to outside to monitor seizures)
Blood clots can occur
reduced motor skill (high probability)
walking with a limp
I’ll be in the IC unit for 4-5 days…if I make it out, I’ll be ok
After Surgery -
Have to go to nursing facility to relearn to walk
7 days hospital stay, 6 months recuperation
Tumor can be both benign and malignant, it will take 5 days for biopsy
It’s to his credit that he gave me all this information without making me hysterical (which is not my personality type, but, hey give a girl a break, it’s a brain tumor). At this point, we were thinking it was a meningioma (which is benign and does not come back).
JC comes back with my brother (who lived with us at the time) and my son (11) and FOOD, God bless him. My daughter (9) was spending the night at her friend’s house and I figured, why ruin her night? I explain everything and they all cuddle around me. I believe in letting children know what is really going on. How else can they understand the undercurrents around them, feel like they can make a difference and learn how to handle adversity? It’s not like I shared ALL my fears, but reality is reality and it’s my job, as parent, to teach them something new with everything that comes up in our lives. At this point, the neurologist comes in and shows us the CT scan (“are you sure you want your son here?”) which is obvious, even to us (ironic note: the person who read this film is the same one who read and diagnosed JC’s kidney cancer, 2 years ago…very nice guy, went out of his way to show us every film he took). At this point, they give me a room in the hospital, (Washington Hospital, in Fremont, CA…an amazingly wonderful place…I won Doctor pot-luck (it’s not like you get to choose, when everything is happening so fast) every time, not to mention nursing, PT and OT pot-luck.) a gown and all that other thrilling stuff (the little kit with the throw-up bin, the pitcher, the bad toothbrush, the all natural toothpaste (hospital gripe #2, come on people, taste that stuff before you give it out, you know what I mean.). By this time it was very late and so JC went home and I went to sleep.
The next morning was MRI morning…well by the time they fit me in it was afternoon MRI…JC came back and I began calling people to let them know what was going on. After my father died, I became the kind of person who doesn’t want to leave words hanging, just in case, so I told everyone that I loved them and to pray. The amount of people praying for me is phenomenal…I think I have every religion represented due to friends, family, nurses, the guy who parks the car at the hospital…which is something I am thankful for on a daily basis.
I was finally MRI-ed, a thrilling experience, involving sticking you in a claustrophobic tube, not letting you move and having to listen to loud, strange banging noises…I have learned that you can ask for a sedative (take it if you are the least bit claustrophobic, it doesn’t make you feel drugged and it really helps) and you can bring your own music, which may not thrill the techs who have to listen to it to, but soothing is soothing and you have a definite right to be as happy as you can in the tube, ultimately it makes their job easier as well. The diagnosis was now complete, the tumor definitely needed immediate attention and was definitely huge (hold a tennis ball up to your head… strange thought to imagine that being inside me). The neurosurgeon then visited with us, showed us the MRI and began to lay out his plan for my operation: April 1st (April Fool’s Day, there I go, amusing myself again) I would have a craniotomy (open up your brain, remove bad stuff) and he would remove as much as possible of the tumor, as much as was not too close to the Superior Sagital Sinus (big blood vessel), close me up, add a titanium screen to the parts of my skull where bone was removed and leave a brain transducer (a device to monitor seizure activity, it doesn’t hurt to wear, but you do have a wire running from the inside of your head to the outside…not painful, but just WRONG somehow…like a lot of other medical stuff) inside my skull to monitor what is going on inside. The tumor would be biopsied to check for what kind of tumor (remember, we are still thinking it’s just a meningioma, a benign type tumor that just “peels off” the surface of the brain). This left me two more days in hospital before the surgery…to do…what, exactly? When questioned, the doctor told me that I would be monitored and given medication (Dilantin (anti-seizure med), Dexamethazone (anti-inflammatory steroid to reduce swelling) and Pepcid (because the Dexamethazone bothers your stomach). I asked why I had to be staying at the hospital if all they would be doing is giving me drugs I could remember to take at home. (Patient rule #2: don’t go with the flow, if something makes sense to you, ask about it until they convince you…if they can’t convince you, remember Patient Rule #1: the doctor works for YOU. You have hired him/her for their expertise…not to make you do what is easiest for the hospital.) At first this idea was greeted with some skepticism, but as I explained that it was two days to Easter and this could very well be the last two days I was going to live…why couldn’t I spend it doing what would give me the most joy (which is definitely not to be in the hospital)? After some discussion, it was suggested that I could be out for a day…after more discussion, it was decided that I have a brain in my head (Until April 1st), will take my medicine and that if anything weird happened, I would come back (I want to escape, not die) . Thus I was allowed to go home for the two days before surgery.
THE WAKE: Ok, that sounds dramatic as all hell, but it is how I think of it. If you were told you could have two more days to live (or be your own, un-brain damaged self…no snarky comments from my friends who know me and read this) how would you spend your time? For me, it is to be with the people I love…playing cards, drinking (some), laughing and talking shit. This is exactly what I did. JC, two kids, brother (Vincent) who lives with us, brother (Jim) who lives in MI (who called to tell me his arrival time, without telling me he was even planning it), our best friend Jim from up here and JC’s best friend Jon, from Southern California who I asked to come up and sit with jc during the surgery. (My woman friends showed up when I was in hospital to help out and make me laugh when I was stuck paralyzed in bed). The rules were that 1. I could tell them how much I love them without them getting all weird and guy-ey. 2. There were to be jokes about the situation, not tears. 3. They had to stay up as late as I wanted to, playing cards (I am nocturnal). 4. No being nice to me just because I’m sick and 4. JC was allowed to take as many pictures as he wanted to of me (something I hate…but realized is stupid…the kids are going to want memories when they grow up, and they could care less how I look).
It was fantastic! Jokes consisted of “Jeanne can’t remember…Brain Tumor!”, “You know, if you lose your mind, you will be the only one who doesn’t care, cause you won’t know”, bald jokes (I had been growing my hair at the request of my husband and son for the past 2 years, bitching the entire time…voila! no hair!) and the fear I had that when I woke up I would have become Martha Stewart. I hugged everyone all the time, laughed until I couldn’t breathe and spent time feeling normal and being normal with my kids.
I think it was this start to the whole thing that enabled me to find that place in myself that kept me happy during this ordeal (not every moment, mind you, I am not crazy). I am the kind of person who tries to find the joy in every day life. I believe that this keeps me happy and helps me to appreciate the miracle and gift that life is…shit happens all the time and if that’s all you focus on, how joyous is your life? How are you appreciating the gift of that life? JC was being my perfect husband, letting me do what I had to, despite the feelings he was having about the whole situation…he even listened to me explain what I wanted if I died (bury me in something comfortable, etc..) without anything but support…and I KNOW he was feeling his life fall apart, since I had gone through the exact same thing 2 years ago with him…
THE SURGERY: April Fool’s Day, we got up early (JC, Jon and I) and went to the hospital. They re-admit me (by the time I went to the rehabilitation hospital, I could fill this form out by myself), gave me a gown and made me go take a shower and wash all over with some horrible anti-bacterial soap. JC was by my side and helped me out with everything they requested and then sat with me until they came to take me to the operating room. I was very glad that Jon came up to sit with him…I didn’t like the idea of him sitting by himself during this surgery, which was suppose to take 6 or so hours.
They wheeled me into the OR and the surgical nurse introduced herself to me as everyone around me bustled and got things ready. The OR is not what I have seen on TV. It was bright yellow, with a lot of machinery and it was hard to imagine that everything in there was sterile. They moved me over to the OR table (skinny little thing) and strapped me down (which would have felt horrible, except the table was so thin, that I felt better knowing that I would not fall off) and there I was, waiting. They don’t knock you out right away, which was not what I expected at all. Finally, the anesthesiologist injected something into my IV (none of that “stick-something-in-your-face-count-back-from-100” crap, which I feared. I don’t think they really do that anymore.) and I was OUT.
The next thing I remembered is waking up, with JC by my side and this THING in my throat…and… I WAS ME! The tube in my throat panicked me and I wanted to tell JC I was ok so I started to try to pull the thing out (not very bright, but I have drugs as my excuse) and made frantic noises (even remembering this, I feel panicked)…I heard one nurse say “She’s having a seizure!” and immediately calmed down and pointed to the tube…JC told them (rather loudly; it’s nice to have someone know you so well he can speak for you when you can’t) that I just wanted the tube out. They didn’t really want to remove it (I think it was suppose to be there for a couple more days) but we didn’t give them a choice, so they found a doctor who did. The first thing I said was “I’m me, tell them I’m ME. Motherf*****g-son-of-a-d****d-a**-b***h, I am still ME!” ok, it’s not ladylike, but it was the kind of proof MY friends would need to know that I didn’t wake up Martha Stewart. JC went to tell Jon who called the others.
Apparently, I woke up hours before they expected me to and with much more mental function than was expected, either. JC told me that the surgery was only 3.5 hours because, during the operation, the Superior Sagital Sinus (SSS) was nicked and my surgeon had to save my life on the table. I am grateful for his experience, which saved my life. I needed two pints of blood (if you have a chance to donate for yourself, do so, due to the speed at which everything happened to me, I had no chance for this option.) The tumor itself was very vascular (lots of blood vessels running through it) which made it very difficult to remove and there was definitely some left, which was un-removable due to its adherence to the SSS…although not for lack of trying. I also woke up paralyzed on my left side, from shoulder to foot.
My stay in the ICU was for a couple of days, during which time I was allowed ice chips (wheee!!!) and they placed pillows around my leg endlessly to try to make me comfortable (like a newborn baby). Happily for me, each day that passed gave me more motion in my left arm…one joint for each day until my hand worked. My left leg, however, was another story altogether…I was going to need serious rehabilitation to get it going again. I was told that my brain needed to burn new pathways to create movement and that recovery always started from the top down (husband says my foot recovery is hindered by my long legs, lol). I was bald, with a horrible “C” shaped incision on the top of my head and wires running from all over…but no real headache, just grogginess and frustration at being paralyzed.
December 3, 2004: Just a small update...since the surgery and the gamma knife afterwards, i have been cancer free for the past year...i go for an MRI next month to make sure i am STILL cancer free...life is GOOD and all i am left with is a half paralyzed left leg. I can't run, walk funny and look REALLY interesting when i dance, but...considering the alternative...i am DAMN lucky!