Grateful

The long, never ending highway of grief continues.  My husband's maternal grandmother passed away two days before Thanksgiving.  As if remembering this last holiday without my son wasn't hard enough to get through, this wonderful woman leaves us.  We won't be going to Morocco at this time but we were dreaming about going in April and still might, inshallah.  My husband calls his mother every night.  She paid a few thousand dollars to create a tent outside the house on the plaza and is feeding all who come by to pay their respects.  Relatives are still arriving from all over the country and the house is full of guests.  I wish we were there to help.  There is so much that goes with grief I wish we were there for, those that come to comfort you and those that just cause more pain.  His aunt was telling my husband how there are people there wanting to be waited on hand and foot while all this wailing goes on around them.  It was so horrible to hear about his grandmother's condition at the end.  

I think back of being with her in her bedroom in 2002 and her showing me photos of herself in her twenties.  She was so proud of being a "hottie".  I am also thankful that I remember better times with her - when the disease was just starting and her arms just starting to shake.  She was still able to get around great, so filled with life and able to let me know how much I meant to her.  One time she came fully dressed into the hammam (the baths) to give me shwika for my teeth - this horrible tasting stuff that cleans and makes them white - going past everyone and yelling in Arabic to them things that made them howl with laughter until she found me naked and being washed in the back hottest room with the girls covered in henna and babies playing in buckets of cool water.  I remember going off with my husband/then fiance to Agadir and when the cab came to get us it was dawn and I clearly remember his mom and grandmother in the front window of the house staring down at me, waving and blowing kisses.  What were they thinking about this American girl in an Adidas track suit and baseball cap that had come to take their golden boy away?  So many great memories I hold on to with fondness.  Anyway, we're doing better today. 

To take our minds off things we went and saw the movie Life of Pi yesterday.  It was in 3D and visually stunning like the reports say.  Such a spiritual and colorful story, it would be hard to believe if you heard it from someone.  Impossible and amazing things happen all the time to people and yet they come through them still internalizing and processing, asking the age old question, "Why did this happen to me, why was I chosen for this, and what am I to do with it after this experience is over?  Wait for some journalist to come along and put it into eloquent words and make it into a movie?"   

As for my health, I would just like to wake up one morning and not be afraid of what might be happening next.  Got up Friday morning at 5:30am, drank my barium and made it to my CAT scan on time.  Almost forgot about the horrors of diarrhea for a moment until it came rushing back.  Been trying to flush the stuff out of my system now.  I have the results on CD and may try to look at it later.  Last time I had the film and looked at it I could see I needed more medical training to notice anything.  Hope nothing is visible for me on it this time.  There is still the colonoscopy appointment to do on Tuesday.  Saw the oncologist last week and she reports that she sees nothing in the vagina but ordered the CAT scan with and w/o contrast to be sure.  Almost cried in her office when she told me.  The feeling of having the mass there has subsided but I know something is still there, it just may have shrunk and I'm grateful for that.  It's a beautiful day and people are in a shopping mood.  Not me, just thankful I'm still here to shop another day.  

Still trying to get my bedroom dark, putting in foam board in that upper window today.  Can't sleep unless it's a cave in there.  I hope to get to the Post Office to mail out more family photographs I found and call my drummer friend today.  His home was recently robbed twice and he is an older gentleman that doesn't need this kind of stress.  I can hear his silky voice shaken by it.  I'm so sorry he got displaced during my latest sad news.  I was hoping to have him here for Thanksgiving dinner it just didn't turn out to be a good time for company.  Anyway, that's my news.   Hope all is well with you and you are getting your Christmas decorating done.   So grateful to be able to think of you, toast to you, and wish you well this holiday.  Here's to good health - Your health is your Wealth!

I am Radiant

I realize I have allowed some time to lapse since my last post.  I recently received about a dozen inquiries wondering if I am still blogging since there hasn't been any update.  I was surprised more than 3 people out there were even reading these rambling messages.  I'm very touched you are still interested and that I haven't completely grossed you out.

My last radiation treatment was October 12th.  I was back to work on the 15th.  On that day, I found that my dance friend John Compton passed away of AIDS, the night before at 10pm.  I had met John when I first started taking Jamila Salimpour's classes at the old Poultry Factory on Sansome Street in San Francisco.  Mark Bell, Europa, myself, and John used to hang out on the shipping dock in front of the building between classes.  We darted in and out of each other's lives over the next 40 years and his death just marked another blow of loss for me.  Seems this trend of bad luck and trouble just won't quit.

I made it through the move although most things are in still in boxes, I have what I need to maneouver around the house and it's functional.  I've also emptied the storage I've kept for over a decade and moved that into the house as well.  I came to Vegas with my car, a boombox to teach with, a few dance costumes and teaching togs, my computer and a small suitcase of clothes.  Since that time, I have either had things I owned in California come here in the trunks and carloads of others or replaced the things I had before.  I now own so much I am on the verge of becoming a hoarder!  It overwhelms me how much there is.  I've tried my best to be ruthless and toss out much of what is old, unused, unloved, broken, once trendy, or things just taking up space, but there is still so much everywhere.  If I had this in storage for 10 years and didn't miss it, I certainly won't miss it if I toss it now.  Cancer changes your view of material things as well.  These things aren't the items that are of importance to me any longer.  The relationships I have forged with very lovely and talented people are.  Losing John just made me want to gather all of them up in a bunch at once, hold them tight once more and remind them how very much I love each and every one of them and how they have greatly contributed to the richness of my life with so many wonderful experiences.  So, every chance I get I try to go through more of these boxes and sort through, tossing, donating and gathering into one place for others to own and love as I have.  I've started to place all of my dance things as well as Marliza Pons' into one room and plan to make it into a "store" to sell off my costumes, props and wonderful lifelong collection of all things Orientale.    It's a task that's a job all by itself.  It's also a marvel I have the energy to do this.

Once they told me they could no longer see my tumors, I no longer needed treatment, to go get a second opinion from my oncologist, I was cut loose.  Got a mug and a certificate for bravery that I made it through radiation.  Saw my oncologist and she also confirmed that she did not see any evidence of a tumor but did that mean that the cancer was gone?  She could only test with epithelial cell scrapings and I was too raw from radiation to do that testing right now.  She will keep me in surveillance mode and test again in the next three months.

I feel kind of spun out into limbo, no support group, no advice, just the strong urge to get back to healing and a normal life again.  The problem is, that cancer returned once before when I didn't expect it to, how can I be sure it won't happen again?  I can't.  Yet if I cycle on it, perhaps I'll manifest it.  So I've tried to distance myself from the thought of the ordeal and carry on as if it was all a bad dream.  Haven't wanted to talk about it let alone blog about it.  The symptoms persists and although I am a 1,000 times better every day I am further away from a day of radiation, I know what I am feeling and it is definitely a result of the radiation.  They can tell me all they want that I was only radiated in the pelvic area yet I still feel it in my joints, feel it in my skin, still smell it.  The most alarming new trouble spot is the pressure I feel in the bladder and rectum that has me going back to the doctor this Tuesday.  Please Doc, just check me out and assure me that nothing is there and nothing to worry about.  Tell me I have an over reactive imagination and I will get back to carrying on with a vengeance and renewed energy.

Thanksgiving is coming up in four days.  It has been one year since this nightmare began.  I have a LOT to be thankful for.  I have made it through to the other side of treatment as difficult as it was unscathed, tempered from the experience, and filled with renewed interest in all of the people that are connected to me in this life.  Thank you for helping me make it through with your love and encouragement.  So I urge you:  Gather your loved ones this holiday, hold them like it's the last time, and say I love you with all sincerity.   I know I will.

Upheaval

If things weren't completely out of my comfort zone enough, I have moved.  The movers came last week and moved all of the furniture to the new house, thankfully only about a mile away.  So glad it's a one story and no more stairs to deal with.  I did not have the energy to pack a lot of things by the time moving day arrived so they also packed for me.  I was lucky to have already made up labels for each room so I tagged the boxes as they filled them but as for the contents, I have no idea.

We hired a group of guys, displaced construction workers from Hawaii who own their own business now.  They came prepared with shrink wrap, moving blankets, and dollies.  We just had to rent the truck.  We were fortunate not to have an option to get a smaller one, we made the move in one trip.  I like giving work to deserving people.  I sing the praises of Big Boys Moving Labor.  Message me and I will give you their number if you are local to Las Vegas.   You also get what you pay for.  They worked for almost 6 hours like slave labor, always laughing, never complaining or judgmental.  And yes, we bought them lunch, tipped them big and bought them beer at the end of the day.  Only one drank anyway and that is only during Monday night Football so he was really stoked.  So what am I in such upheaval about?  They moved the boxes and just put them anywhere in the house.  Not in the rooms they were labeled for mind you, just in the house.  There are heavy boxes I will never be able to lift all over the place.  What didn't fit in the garage or in the den, just went anywhere - and they are everywhere.  If I didn't have the energy to pack, I certainly don't have it to lift boxes to find other boxes, move furniture or unpack.  Fortunately, we moved things by carloads prior to them coming for the furniture so I am able to shower and know where my clothes are.  I was able to do all of this around my radiation schedule.  There's nothing like being in total chaos and not able to get off the couch to do a thing about it.  At least the couch was empty so I could use it and I had cable so I could watch my beloved Masterpiece Theatre or HGTV and drool over the Property Brothers.  (Counting each and every blessing here!)

Going through radiation is difficult to say the least but being without internet is just like enduring another symptom.  I must have moved to a location where the cell tower has a weak signal and my phone would either not connect or have horrible service.  I was talking to people where entire parts of conversations were missing.  I had received a new phone and an iPad for my birthday last month and found I could connect sporadically but was not able to reply to anyone.  The house is just about a minute from closing so they are asking us to sign and return every document we ever signed previously but I have no way to scan and send it back.  Had to drive over to locations all over town to do that, meet their demands and get back to that empty couch in the middle of chaos.

I've heard from a few people who are warriors with me that their internal treatments went far worse than mine.  They have endured horrific repercussions from the radiation that fried their insides, outsides, and still suffer symptoms long after the ordeal.  They assure me that I will get through this, I have no doubt, I made it through the death of my son.  Sadly, that experience will leave me with symptoms and scars the rest of my life also that doesn't even compare.  I feel lucky as I count my blessings that I have endured so much, the worst is almost behind me and that I have the time off to heal albeit not without stress.  Today is my husband's birthday.  I want to treat him like a king to let him know how much I appreciate him quietly enduring all of my misfortune but I have missed the mark.  The sale of the house, timing of my paycheck, the hectic schedule of the move in between radiation appointments have left him in second, possibly third or fourth place.  I am filled with emotion and want to cry as I feel my efforts are inadequate to show him how much he means to me at this time and my last minute plans are not enough.  I always read articles that mention the caregivers who are constantly and continuously there for the ones who fight.  They are the ones closest to you going through it, feeling it blow by blow.  Cancer affects everyone who loves you and cares for you.  I got mad love for all of you who continually pray and send me healing thoughts.  I have huge gratitude for you rallying around me in another difficult time in my life and will forever be in your debt.

The Internal Treatments

I'm not just a little scared, I'm terrified.  I know it's out of my control so I can't worry about it.  I've already committed myself to go.  I saw the radiologist last Friday.  He said he could see both tumors.  One is already gone and the original one is now flat.  That just means that if it had 9 billion cancer cells when it was protruding, it now has only a billion.  I feel much better, thanks.

My alarm didn't go off.  It's after 8am and I have to be in the middle of town by 9:30.  I go in to the bathroom and look at myself in the mirror.  I look weird.  My husband is awake and walks past me.  I tell him I look weird and that I'm getting in the shower.  It's a beautiful morning.  I'm running around the house trying to remember what they told me about what to bring.  I have to see the finance officer, grab a couple videos - funny ones?  Should I be laughing?  Can I shake?  What if they don't have Blue Ray?  I'm just wasting time now.  I plug in my iPhone to charge, grab a Town Called Panic and The Fountain, a plum and head for the car.  I don't really want to go.  I told you this already, didn't I?  I get to the hospital, check in and within 5 minutes we are back in the original CT scan room this all started in two months ago.  The nurse/tech, Jose, tells me to get undressed, put this stretchy belt around my waist with a tail hanging down in back and have a seat on the table.   He comes in with a clipboard with a waiver for me to sign.  I am reading every word and start asking questions.  "What unusual complications did you tell me about?"  Jose gets a nervous look on his face and says he'll get the doctor to explain.  The radiologist comes in and tells me that this is the standard form to cover them from all the things that could or may happen, that we've discussed everything - basically sign the damn thing and let's get on with it. He tells me he'll be back in with his nurse in a moment.

They come in and my husband leaves.  I have forgotten the FMLA paperwork for them to sign so I can get approval to be off the next two weeks.  He's going to head back home and get them.  They tell me that this will take 2 hours while a team of people map exactly where the radiation should go.  They have to be sure it doesn't come near my colon or bladder and just reach this tiny little area.  I ripped the X's off that were on the tape that have marked my hips for weeks while I did external radiation on the day I finished.  Turns out they don't need those marks anymore.  They will scan me with the cylinder inside and do the measurements.  He announces that he is inserting the cylinder, I feel a pressure and I my voice goes really high for a moment and then it's in.   He teases me that I yelped.  They leave the room discussing another child patient and I'm alone.  I'm in the Stargate ring once again.  I hear a voice telling me they are about to start, not to move.  I close my eyes and visualize a perfect treatment, it's painless, no symptoms, the cancer will be eradicated from my body..... I can feel I am moving back through the ring and moving in and out while they scan the pelvis.  It's over in a few minutes.  They tell me they will have a team move me onto a gurney, into a waiting room and this is where I can watch a DVD, listen to my iPod, play with my iPad or read a magazine.  This may take up to an hour or longer.  The team comes in and I apologize for being so fat.  One guy tells me that you wouldn't believe how light a person becomes when there are 6 people lifting all at once.  They take the edges of the sheet, align the gurney and quickly transfer me to it.  I can still feel someone shaking like they are struggling to lift.  Gotta head to a gym when this is over.

I'm wheeled down the hall.  As many times as they must do this, they still bang the walls when they go through the doorways and they apologize for all the bumps we have to go over.  I can see rooms as I pass by, technicians looking at xrays and adjusting machines.  It's like some intense ward in a hospital except this is the medical building across from the hospital.  I had no idea what was behind these doors.  I'm in this small waiting room with a TV, a chair and a table filled with magazines and DVDs.  I ask the tech to put in the DVD I brought.  She puts in Town called Panic and places my things on the chair.  It's in French but subtitled but I wonder what they must think as they pass by the room I'm in.  If you haven't seen the movie, it's kinda like claymation.  It's just silly but I need it to help me pass the time and not think about what is coming next. 

Not sure how long I am in the room.  The radiologist comes by and pokes his head in, asks how I am doing and says that we will be going in soon.  I let him know I am fine.  I doubt it's even been an hour, maybe twenty minutes and Jose is back.  He says we are ready to go for treatment.  He grabs all of my things, puts them below the gurney and wheels me down another hallway and into a room.  A large machine is in there.  It almost looks like a storage room.  There is a boom box playing some rock station.  The lights are rudely on and I am just left there.  I realize how my external radiation technicians, Kevin and Karen, at my other treatment location, treated me like a Princess.  They made sure the lights were low, had my ring ready for my hands, asked me if the volume was good or if I wanted it louder, came by me and touched my hands to let me know they were ready to start and were leaving the room.  None of that here.  Cattle Call.  Jose comes in to tell me he will be hooking up the catheter to the cylinder.  This is how the radiation is fed to the tube.  He says we will start soon.  Another guy comes in with what looks like a Geiger counter and sweeps a wand over my body.  He never says a word, looks at the machine and leaves.  Brave man.  The room falls silent.  I focus in on the music.  I know this song.  I start singing along in my head.  Wish I had asked them to play my mediation CD or to pump up the volume on this song.  I can hear or maybe I feel this sound as the radiation fills the cylinder.  The lights are so bright. I wish they had arranged for Kevin to come and be with me today, I am so scared as to how my body is going to react to this phase of treatment.  I'm sure they weren't going to pull him out of his location just to soothe a frightened patient but it would have been really nice.   I miss being the Princess.  They announce two minutes more.  I'm a bit taken back.  Has 10 minutes really gone by?  I've only sang one song and it wasn't Innagaddadavida by Iron Butterfly.  I'm back in the waiting room, the radiologist nurse comes in to remove the cylinder, tells me my next appointment is set up and to stop by and see the finance officer before I go.  The guy comes back with the Geiger counter and waves the wand over me.  Maybe it's magic and he is taking all the cancer away. 

I hope my husband is back but I don't see him.  I head to the lobby where the finance office is.  I call my husband and he is shocked that I am done.  He's found the paperwork and is headed back to get me.  I make a payment and we are chit-chatting and wow, he's there!  Okay!  What a morning, everything moving much faster that I expected.  We stop for some breakfast even though it's noon and head home.  I feel a heaviness in my body, I have to lay down a while.  Watching TV, I'm checking in on my body and how I am feeling.  I can sense the radiation traveling up my body.  That feeling of it in my throat is back again.  They can tell me all they want that I don't experience these things but I do.  Think it's time to take a nap and stop being suspicious of what's going on in my body.

Devil Claw Marks

I wanted to share what happened to me last Tuesday.  I go to get a check up every other week from a doctor who resides at the location of my treatment.  I see the nurse first, she takes some vitals then the doctor comes in to discuss.  She was asking about how my skin was.  I told her that it's very dry to begin with but that I noticed that there were patches I've found that don't even feel like my skin anymore, very dry, like it's burnt.  She tells me it's from the radiation and that she is going to get me some samples to try.  She brings in a large tube of some gel and several sample packages of this cream called XClair.  She explains it's for the dryness, I can use it anywhere and I can even combine them.  I see the doctor, we discuss the drying skin patches and the rest of my ailments and I'm done.

That evening, my husband and I go out to dinner.  We go to Carraba's for an Italian dinner, I have soup, salad and the main entree, it even comes with a small sample size dessert in a little shot glass.  Delicious, except that I feel like I've just had Thanksgiving dinner and we are both stuffed to the gills.  I have that food intoxication come over me and I have to go right upstairs to bed.  I pass out for a few hours and wake up sometime past 11pm.  I'm lying there in a sleepy stupor and notice my lower back is on fire.  I grab the gel and rub some on, struggle with getting the little sample pack open and rub that in too.  The nurse said I could use them together.  I'm laying on my back watching the tv, hoping it will bore me back to sleep but the fire on my back keeps heating up.  My husband comes up to the bedroom and as he enters I ask him to flip on the light and take a look at my back.  I explain I just put the lotion on they gave me today but it's still burning.  I turn over and he immediately asks, "Were you scratching this area?"  I told him no, I was sleeping on my back, just rolled over and put the lotions on.  He asks me if I want to go to emergency hospital.  Now I am feeling a bit alarmed and I ask him why.  He says it looks like those paranormal shows when the entity scratches you.  I yell, "WHAT?!"  and jump up to check it out in the bathroom mirror.  As I rush past him, he tells me the scratch marks are climbing up my back.  I have no idea why I didn't ask him to take a photo of it.  I know I didn't scratch it but there are welts all over my lower back that looks just like the devil's claw. 

When I go into radiation the next day, they all want me to drop my trousers in the lobby so they can look at it (like it's still there or something) but it's gone and I look like a grouchy, whiny old lady complaining about every ache and pain.  I had no intention of taking off my pants at their request in the lobby no matter how excited they were to look at my bum.  They don't see a thing, it's not even red, and I am still in that category of "Patient with weird side effects no one has ever had before but her".  Needless to say, I am now terrified of the lotions and refuse to use them.  Must have had an allergic reaction.  Ahhh, the joy of having cancer.  Never know what's going to happen next.

Sadistic Chemists!

Here is my pelvic radiation tip for the day:  Tuck's Medicated Wipes!  You can get a box or the handy travel packs.  Who knew they weren't just for hemorrhoids, I certainly didn't.  Just like having an ice cream after a fiery hot dinner, these cooling little wipes do the trick instantly.

So, I mentioned in one of my last posts that I finally got the doctor to listen to me and prescribe something for the diarrhea, right?  Well, I finally go and get that prescription filled.  When I pick it up, you have to have this consultation with the pharmacist so that you understand how to take it and what symptoms to expect for allergic reactions.  I head over to the consultation window and meet with the pharmacist.  I know him well so I feel comfortable.  Don't expect him to say much but take as needed with plenty of water and it will do the trick.  NO.  He tells me that it will make me drowsy, so not to take it if I am going to work, drive, or use heavy machinery.  Certainly won't be using that chain saw I just bought.....  I say, "Daniel, what kind of a sick chemist makes up a batch of pills to take for diarrhea that make you drowsy?  What if I fall asleep on the toilet or something?  I don't usually have diarrhea at night, I have it during the day.  But now I have to figure out a time I'd like to nap and take them?"  He replies, "Obviously a very sadistic chemist created these pills but it's my job to let you know the side effects."  I now take them at night and still have to deal with the diarrhea during the day.  So we are back to the Imodium and pray for relief.

On Friday, my husband and I go and give the deposits on the new ranch style house we will be moving into on the 21st of September.  In the blink of an eye, we give them 6 weeks of rent and a huge security deposit.  We'll do the walk-in inspection 10 days later and have two weeks to move in leisurely.  Gotta get myself in gear and start packing.  Been dug in this house like a tick for the last 6 years and there sure is a lot to go through.  Don't want to be taking junk to the new house I don't need or want.  There are boxes in the garage I have never unpacked from the original move here.  I still have the internal radiation treatments to go through and they will be the roughest.  I looked on the Internet for more testimony from others that have gone through it and their descriptions frightened the hell out of me.  I am still on the fence about doing them at all.  Although I do not want the cancer to come back, I do not want to do these treatments at all.  I already feel over-radiated and I am done with any more.  If the tumors are gone, I'm doing these for preventative measures.   Don't want to do them.

Later that night, I have tickets to a Bellydance Concert at the Jewel Box Theatre at the Flamingo Library.  It's the big local bellydance convention here and the first night of the headliner's dancing.  I have another bout of diarrhea and I don't think I am going to be able to make it.  I fight it for over an hour and when I realize I am at the final minutes of backing out or going, I decide to go ahead and get ready.  I have to hope the medication will finally kick in  -- or I just turn around and come back.  I throw on the cute little black dress and put on some make-up and I'm off.  I get to will call, get my ticket and easily find my friends waiting for me.  I'm sitting smack dab in the center seat in the middle section of the  theatre.  Excellent view, but a long way to go if I have to use the restroom.  Everything goes well and I am able to enjoy the show without worry.  Was such a joy to be a spectator and not have that nagging feeling I am missing out by not being on the stage. 

I get home and my husband is all over me, telling me how sexy I look and how great it is to see me dressed up and in full dance make-up again.  So nice to feel desirable, too bad he's leaving for the gym.

Radical Hope

It's Labor Day today, September 3rd.  I've had an alright weekend not the most productive but at least I have got some packing done.  My husband mentioned we might be jumping the gun packing; the new house hasn't been approved and worst yet, I'm not even sure my short sale is complete.  I was sent a letter from my agent but it has never actually come from the bank.  I put it on my list of things to do on Tuesday. 

I keep checking in with myself and how my body is doing without radiation for 4 days and I am sorry to report that it isn't enough of a break.  Maybe a week would make a difference.  I have been really tired this weekend and just needed to sleep.  At least I am not feeling as physically bad as I did that second week.  So as I am contemplating my progress, I check my emails.  There is one from a friend who studied dance with me at UNLV.  She is in the middle of filming Liberace at the LV Hilton this week and took the time to forward this newsletter from the Jung Center in Asheville, NC to send me positive thoughts.  She didn't point out which article to read but I noticed this one that piqued my interest called "Radical Hope:  The Healing Power of Illness".  It's for a lecture I cannot attend and it will not be streamed live but what I did glean out of the ad for the lecture validates my thoughts about how something good is going to come out of all of this for me. My feeling is that I will discover some non-profit to start like my angel did or some other work will grab me and spin me into high gear with it's purpose.  I'm going to put those words here since I know many of you may not want to follow the link to the Center.

How can illness be the healing path?
"This path opens us to possess the courage we need to accept reality, leave the role of victim behind, and step forward as a seeker.  It can facilitate our medical treatment, sometimes being a cure, and help us to realize that healing isn't about staying alive.  Rather, healing is about becoming who we are meant to be, living our potentials and moving closer to our authentic selves.  Finding meaning in our darkest moments so that new life and creativity can emerge.

For what then counts and matters to bear witness to the uniquely human potential at its best, which is to turn one's predicament into a human achievement...... suffering can have meaning if it changes us for the better."   Vicktor Frankl, Man's Search for Meaning

This is what I hope for myself and the others who may be reading this searching for answers.  It validates and gives a loud answer to my cry to the heavens:  Why me?