Helpful

Ever since cancer showed up over a year and a half ago, I noticed that people really struggle with how to handle it. It’s been curious to watch, but I really don’t have time to help people go through whatever it is they need to go through. I’ve been busy.

Not to be gruff, but there are two kinds of people. Those who show up and help and those who show up to process their own stuff. Guess which we like.

We like lattes, help with sprinklers, food, good company who bring their own lunches and drinks, good chats, short visits, help when Shannon can’t take me to appointments/procedures (thanks sister), spontaneous help with moving or something unique that we just need then and there. Life is moving fast. We also need downtime.

I’ve enjoyed seeing people I haven’t seen in a while. They have been for the most part awesome and respectful of energy and the conversations and fun times have been just what was needed. My childhood friends and my Seattle friends – I can’t wait to see the rest. It’s been wonderful.  My terrific work wives and boss. Amazing.

But wow, there has been maintenance. We decided to have a no-text weekend this weekend. We aren’t responding to those who want updates and info that we just don’t have the time to share after last week. We will for the most part respond eventually, but I just can’t believe the people (with good intentions) who have come out of the woodwork and who expect us to interact. Where have they been this whole time? How have they ever helped? How are they actually in my life in a way that is healthy? Some are great and of course I want to keep interacting with, but not really in a timely or detailed manner. Some are not great and are a drain. Again, it’s clear to see it’s about their own feelings on this illness that they are reflecting on, it’s not actually about sharing a latte and a brief fun conversation.

I am so glad there is a thing on the iphone that shuts off any correspondence between certain times. Most of the ones that are out of the woodwork text me before 9 am or after 10 pm. I am terminal and have had nothing but procedures. I’m tired. Our sleep is sacred. It is jaw dropping how many people text us (both if they don’t hear from one!) even during cancer bedtime hours. This is a big clue on who does not really know who we are or what we go through each day. I’m still paralyzed, and homebound, and can’t drive, and can’t host you, and things will get worse, and Shannon works full-time and takes care of everything cuz that’s how she is, and she’s my partner and I’m becoming protective of her energy and output. And I’m dying. Deal with it, we’re dealing with it. Take a look at us and get your clues so you know how to interact. We don’t dwell or dredge up past stuff that is heavy, we are looking right at it and are here and now dealing with the present moment. On the patio. You’re missing the point!

People have been great. But they have also been a buzzkiller. We won’t let that drain us anymore.

Purposeful Torture & Fun Friends

I’m back in the hospital for another round of chemo. I didn’t really want to do chemo again because who does? Nobody does. But, my body did some stuff to say, “hey. probably another round, bitchface.” I got very pukey last weekend and am starting to lose feeling in a couple fingers, and my ankle swelled up on my gimp/paralyzed side (which turned out to be a blood clot, hello blood thinners). And it was time to do chemo again according to how the timing is for this special kind that goes into the spine/brain barrier. Really, I’m mostly doing it for my partner and because my elfkin Oncologist want me to.

So I’m waiting for my blood counts to be up enough for me to get out of the hospital so I can go home and feel like crap for a week. We are hoping this will slow the progression of the cancer a smidge while I can still have a “quality of life,” like I have been with mostly taking care of basic stuff and able to enjoy being home on the patio visiting with people and watching thunderstorms and having the occasional mimosa.

My childhood friends came to visit and it was wonderful. We had so much to share and it was easy to pick up how we communicate and close some gaps on stories and memories. We were together for so many years and it was so interesting to see how our lives impacted each other’s in little ways even now. It was perfect timing and perfect company to have over during the days and Shannon was such a wonderful hostess to us. I even made burgers for them. Because my burgers rock so hard. I’m so glad to have been raised with them in such a unique Chico, California environment.

RIP

Charlie had been struggling for a while. We took him into different vets and nobody could figure it out. Last night he went downhill. I figure he waited until I was home. This morning Shannon took him in and they couldn’t save him. 

He is gone. 

I’m so sad. He was the best dog. He was absolutely the best dog for me. I will find him when I go. He’s waiting for me. 

  

Out

I’m outta the hospital, but it’s been rough. I’m at Shannon’s with everything I need. What a fantastic person to be with. She opened up her home and life to the end of mine. She is beyond helpful. 

My Ghettoplex II is gone, and my fur posse is hiding in the back bedrooms. 

I cannot walk or fix my own food yet. The spinal fluid headache is still there so easily. There is a lot of time spent laying on the couch and bed or clumsily getting up with a walker or wheelchair. My legs are numb. I am handicapped. I cannot believe it. I am on disability at work. Giving up my position, my job, is very difficult. But I’m so grateful to have those benefits last a while. Giving up everything is beyond my comprehension, yet here it is. Paying rent for ramps and a medical bed…inconceivable. 

Having everything changed is shocking. 

p.s. Direct TV and Century Link both suck. I can’t stand to watch TV anyway.

On My Back

I’m still in the hospital a week later. Probably until this weekend. Radiation done, pain pump surgery done (hated very much), chemo is going. I am a complete wreck. I can’t move without help. There’s a bedside camode. I’m flat on my back because the surgery punctured a hole in my spinal fluid and it’s not closing up so I have migraines. I’m totally doped up. I have to wait for the antidote to the chemo so my blood counts are up and I have to be over this spinal migraine. There’s a lot of work to do to get out of here. I’ve never been so useless in my life. I haven’t seen daylight in a week and a half.

Shannon has been doing a lot of work getting everything set. I don’t know how she does it. We’ll have all the equipment installed necessary for a 90 year old. We’ll have a transition company helping with PT and making sure we have what we need for day to day care. Family is helping with setting up moving some things and my parents are going to look for a funeral plot tomorrow. This is getting real. Things are happening so fast. I’ve lost control over my body and my things and my entire life. I have turned into a completely dependent paraplegic with massive complications.

What a way to go – why do I always have to win first price for MOST. This time it’s the most painful cancer kind to go through and die from. What the hell did I do. I just wanted to hang out this summer and have some beer.

Body Invasion

Turns out the cancer was waiting in silence EVEN MOAR. This time all over my spine and lower nerve bundles. I have Leptomenigeal Carcinomatosis, which is terminal. It comes from the original Triple Negative Breast Cancer.

Docs and all thought it showed as a herniated or bulging discs. But persistence from my partner, and more tests showed ominous cancer in places it shouldn’t be. The excruciating pain was also a ginormous factor and kept me up for weeks and persistence to find out what was happening. I’ve been in hospital since last Monday or Tuesday – I can’t remember, and they’ve done all of the things – spinal tap, doing radiation, going to get an intrathecal pain pump tomorrow directly into my spine, chemo and antidote to chemo this week. This stay has been to control pain (hello Dilaudid PCA) and also to buy me some quality time and maybe the ability walk with a walker a little longer before being rendered totally dependent.

We are getting Shannon’s house set up with all the equipment needed for hospice. I’ll “oversee” moving and organizing stuff although I will probably have to let go of that. My work has been wonderful about working with us on disability and benefits and all the things that go with that. The hospital has been great – being in palliative care is a lot more relaxed than regular rules. Charlie gets to come visit me, and they don’t say a word when people bring booze for a nightcap.

But it’s all been so fast. And difficult. I’m sad because I’ve watched my body change so quickly. I can’t bear any weight on my right leg/foot. It’s creeping to my buns and my other leg and lower nerve endings just everywhere. I’m drugged. I’m shocked. There are so many unknowns on how this is going to go out. But it’s going to go out. Which is such a trip. They say the average timeframe will be 7 months. And it won’t be pretty. This type of spinal/nerve kind is one of the most painful ways to go.

We’ll look into trials and such. However, for this kind and my age and all that there isn’t much. We’ll see. But for now it’s about getting this hospital stay done and the set up for me to go home to be with Shannon and the entire fur posse.

What an effing deal.

Brain Invasion

So then time has gone by, wherein I was engaged with work more than I’ve been for a while, got through holidays alone, worked on Charlie getting better, got new tires, started having seizures, went in for a brain MRI and there it was – a tumor. Then I had brain surgery, then SRS radiation.

Ta-da!

The Triple Negative Breast Cancer likely set up shop in my brain from the beginning. A few cancer cells slipped through the blood stream and landed in one of its favorite other places besides the boobs. Then because the brain protects itself, the chemo didn’t touch it. It was probably undetectably small, and I rocked through treatment, checked all the checkmarks and was a textbook example of my small percentage of under-40-no-genetic-markers-etc demographic. So “the met” has been growing since into a bing-sized cherry. What a total asshole.

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2 IMG_4972There was understated panic (“this is getting serious”), and there were visitors and wonderful helpers and good beer and making sure paperwork and details were done and organized (much thanks to SK and DD and The Ex), and many appointments, and more scans. Mostly, I was hoping I wouldn’t be developmentally slowed after the surgery. Or dead. But mostly I was hoping to not be retarded.

The surgery turned out to be more difficult than the cocky excellent neurosurgeon expected, because he had to both cut through my lobes and separate brain matter (he was hoping for one way or the other), then the tumor was not differentiated from the other tissue. So they had to shovel out 5 (five) tissue samples (brains!) for real-time pathology before they found it, then they took a backhoe and dug out where they found it, plus margins. It was near the brain stem and motor skills part so waking up and being all there and getting through the first 48 hours without incident was the true test.

3 IMG_4989I woke up and started bossing people around in ICU. Everything was fine. Walking was tough for a few days, and my memory was hazy, but those things came back relatively quickly. There were a few other weird things like faces were slightly different as if everyone was suddenly in unflattering high-definition, and I also couldn’t compute things fast enough to drive for a while or watch “complicated” shows or movies or follow detailed conversations. Stress would result in a meltdown or pain. There are a couple lasting things like my left hand is weak and shaky, and sharp sounds and flashy or bright lights hurt like a bad hangover. Sometimes I watch TV with sunglasses on or wear earplugs when I’m taken to a restaurant. Head trauma is very different from other surgeries. In most ways it’s worse than simply healing the body from a wound. It’s an internal silent creepy sensory-mind-soul trip.

4 IMG_4995Things were rapidly getting better overall, then I had Stereotactic RadioSurgery. What an awful day from hell, only beat by the first day of chemo and port installation on November 1st, 2013. It happened a week ago, which was a month after brain surgery. I don’t really want to go into much detail other than they screwed the halo into my skull live and there were delays in the radiation department which meant I had the thing on much longer than expected and when they took it out there was much pain. I’m tired of pain. I’m done with it. Mostly that day I focused on if the Radiation Oncologist and Neurosurgeon felt good about the mapping. They did, so that helped me narrow my field of terribleness to that imaginary pinpoint of strength to draw from.

5 IMG_50486 IMG_5069It was the equivalent of getting many doses of radiation at once, and so I am now very fatigued. I’m also set back a couple weeks as far as overall recovery. There will be damage to my hearing on my right side, and the weakness in my left hand is also set back. Radiation to the brain is also an internal silent creepy trip.

It’s scary that a chunk of my brain is missing, a chunk of my skull has been removed and riveted back in, screw holes are in my head and skin, and that the surrounding brain matter has been killed. It’s sucks that I was bumped to stage 4 and that my odds of it coming back jumped to 30-40%. The overall trauma my body has been through has taken years off and I will have to work hard to feel good. I’m tired. I don’t want to have to keep working hard. I want to be on autopilot for a while.

But whatever. It is what it is. Brain healing is amazing. People have been helpful. And this nightmare has been a steaming pile of shit I need send down a canyon to walk away from forever. Once I’m healed more.

Wherein Charlie was Dying

This year, Sir Charles the Gentlemen has been struggling with itchiness and general reduced energy. At first I thought it was the Dyno-Vit that set it off (a supplement that people love or hate for their dogs). Which maybe it was, who knows. Then I thought maybe it was the stress he was repressing from my terrible cancer treatment. Vet visits, allergy specialist visits, various medications, food changes, and environmental changes galore didn’t help. Suddenly, before Thanksgiving he turned a bad corner. He couldn’t breathe very well, lost more energy, and choked, foamed and puked when he ate or changed activity. The stress his body was under also made him chew the bottoms of his front pads off.

Further X-Rays and blood tests and research by my vet and her radiologist revealed an auto-immune disease called Laryngeal Myositis. It’s degeneration focused in his larynx and esophagus, where it breaks down his muscles and he gets things in his lungs and can’t swallow or stick his tongue out for drinking/eating. It suddenly got far enough that my vet admitted she didn’t think he was going to make it. We put him on very high dose prednisone and a thyroid pill, and after a week, he is doing okay. He doesn’t choke nearly as much, his energy has mostly come back, and he doesn’t itch constantly.

So I will monitor, see if we can pull the prednisone back a bit, and for now the disease has delayed its degeneration of his throat muscles. Time with him has been bought. When it does attack him again, though…maybe weeks, months, or maybe years. I had a long talk with him that he couldn’t die this year because that would cement it as the worst year ever. He really didn’t want to contribute to that, so he moved out of the shadow of death for me.

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While we were visiting the vet this week and she said she was surprised he pulled out of this episode of degeneration, he got up and walked over to her and leaned against her and nuzzled, and she got emotional. It was obvious he was thanking and reassuring her. I really don’t want him to die for many more good years please.

Cancer Trip UK, Part 2: London

Ah, yes. The words. Pulling them from vague emotions and half thoughts and putting them to this thing in order to complete the UK vacay story. Including having to sift through pictures. It’s been bothering me that it isn’t finished here. Because it is finished. Here.

We got back to London after trying to work out how to ride the train facing frontwards – this is not an easy task. It would take too much to explain, so let me just say there is a class system in the first world, the end. All the countryside and towns in which I’ve seen 582 British series filmed were still there and next time I’m renting a car and getting lost. (and will continue to search for good beer, in the name of Beer, amen)

We stayed in the neighborhood that was advertised as Fulham, but it was really Sands End, which translates to walking 3 miles total round trip to any sort of station (mis-advertised and maps were all lies). That Airbnb place itself was the first bad luck out of a handful different Airbnb stays. It was basically like a nice hostel. Guess what I did not want? Walking miles to get to and from a place we were staying and also a hostel. Unfortunately, this added to my already exhausted and negatron state of a thundercloud only above me.

Some good times were had. We did that one touristy thing where we rode on the open double-decker bus with a guide and saw all of the places. Pictures mostly looked like this – either artsy? or crooked.

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I took my tiny elderly parent’s advice and made us go to the British Museum where we whizzed through the entire history of civilization of the world in an afternoon.

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We rented the barklay bicycles after much terrible gnashing of teeth and debates by me, but it turned out swell. I’m the only person wearing a flannel in London.

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One of the raddest things that we stumbled upon was the actual bank of the Thames. We found treasures. I mean, for reals, like stuff that washed up to shore from I don’t know when and they’re in a jar by my sink. Here’s me picking my nose while looking for the treasures.

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Of course, the reason for landing in London was the Kate Bush concert. I’ll brief it then: We took the tube to Shepherd’s Bush early because I was jumping out of my skin – What if we can’t find it? What if they don’t feed us real dinner and I’m hungry? What if we have to get the tickets somewhere else after all? Shannon pulled a rabbit out of a hat and somehow coordinated elusive promised tickets while we were on that tourist double-decker bus earlier that day – she somehow got a signal! from random wifi place! And we had to pick them up from the venue that night. We got there easily and she waltzed right past the line and came out with our tickets, and everyone cheered! The first ticket sighting of the day. We were early, obviously, so we went to a pub where we met a couple of different people also going to the concert. One lady started crying while she was talking about how much she loved Kate Bush. It was not me.

The special tickets included a dinner at a cathedral. Because they’re everywhere, cathedrals, why not have Jesus host a Kate Bush party, naturally. It was indeed like a pilgrimage only better: we got a fancy dinner and then a life-altering concert. When we walked in, my hand was suddenly full of a ginormous glass of champagne. Everyone surrounding us at the table were from different parts of the world and had their own stories of how much She impacted their lives. The air was filled with so much anticipation and joy it was like there were rainbows and sparkles and unicorns everywhere.

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Then the concert. We were in the eighth row. She was right there. First, she rocked our sox with a handful of awesome songs. Her band, her voice, her bare feet, the sound, the lights, the everything was AMAZING. Then it suddenly changed and the stage turned into an epic live movie about life and death with my favorite songs and nobody could move or breathe because it was so much and I died.

And then she came out and kindly said there would be a second act and I’ve never been so stunned by someone ever because, more? Best Present Ever. Basically, there were three parts: the rocking songs, then the Ninth Wave, and the Sky of Honey, which were both ginormous pieces of multi-media right there on stage. She was magical. Even if you had no idea who she was, had you seen it, you would have been EXTREMELY IMPRESSED. The audience was not allowed to take pics so we didn’t, because she asked. Here is my favorite review, so you should read it: http://thequietus.com/articles/16098-kate-bush-live-review

Then we came back to real life.

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Felling

It’s been a week and a half since being cut wide open and having all the parts removed. It went well, and healing is normal. The endometriosis was on the backside and top of my ute, and there were patches on the nerves/ligaments nearby (“This is why you’ve had so much pain”), and the tube from the kidney to the bladder. The recovery room was a 5-hour mess, and I was so drugged for the next 2-3 days I don’t remember much. The scar is 5.5 inches long, and blends into one of the scars from the first surgery that removed the endometriosis mass in the intestines – so it will be 8 inches total. Totally hot.
During surgery week was also the 1 year mark of boob cancer news.

I’ve never liked the fall season.
It’s pretty and all, and there are some nice warm days. But it’s the time of shutting down and going to sleep, and of cold and darkness coming. It’s difficult to know the Earth is doing that around me, and I want to get lulled into hibernating with it. Although, I virtually hibernate often. The Ghettoplex II is a sanctuary, the parent’s cabin is a sanctuary, going out for a craft beer is sanctuary, walking/hiking Charlie is, and there’s not much else than that. I can’t do any of those things but putter around the Ghettoplex for a few more weeks. What I need now is external warm sun and rejuvenation and mental stimulation, not a shut down sequence.

This living alone through the health stuff is driving me insane. Chi Chi the goblin cat is driving me insane. I wander around here like a floating ghost. (Yet I have to pick up things off the floor. I cannot believe how many times I have to bend down and pick something up after the hysterectomy. It’s like a conspiracy.) I’m totally okay being alone, but for the last couple years it’s been pretty extreme, suspended in the middle of the ocean by myself, pretending to interact with the world at work and such – it’s a mask. I am isolated.

There is a lot of physical healing to do. And a lot of healing to do. I’m daunted going into winter with a beat up body again. Also, I will be quickly dealing with full menopause without hormone support – I cannot use hormones for the rest of my life (hormones can keep the microscopic endometriosis growing, and could contribute to another breast cancer occurrence). And I’ve still got cancer treatment healing to do.

I won’t go much into the whole thang-a-thang thang, other than this long-term cyclic relationship-ish has been added stress because of being so hit and miss, mad-off and tense-on, through all this. Though there was a partnership during the dire times, such as chemo weekends and first night home from hospital. Other than getting tasks done and a little bit of hanging out as confusing friends, there has been no support on the emotional or spiritual side. From either of us apparently. The horror of cancer treatment, mental preparation for procedures, and the long painful nights and floating days have been just me. And the Fur Posse. That’s okay though, that’s all we could do. I appreciated her support how she could give it. We are incapable of figuring out some sort of middle ground.

So I walk Charlie slowly, take breaks during doing dishes, and make myself eat something. Maybe in a week or so I’ll have a fresh pint. I’m so effing tired of myself.

Winter is coming.

Again. Again. Again…

So tomorrow is Ginormous Surgery Day, where they’ll take my ute, cervix, and remaining ovary the hell out. And any remaining endometriosis attached to whatever random organ or tissue. I’m super dreading it, but realize in a couple months I’ll be so glad. This monster, Endometriosis, has been ruining my life.

It was supposed to be taken out last year, after it was found the year before, inhabiting my small intestine and appendix, like a giant wad of satan spew. But then last year I got sidetracked by breast cancer. Because my body is trying to kill me, OBVIOUSLY.

There are a couple of wildcards going into this. 1) So close to cancer treatment – 4 months out from radiation, before that was a lumpectomy with nodes, and before that was full-on chemo. Not expected to bounce back like a normal otherwise healthy person. 2) Opiates don’t seem to work for me, so I’m dreading the pain. Walking right into pain on purpose, after the last two years of all this. I’m worn out.

But, first thing’s first. Back to the bowel cleanse.

p.s. I had a Goodbye Uterus Party this weekend, and it was a super fun time. There was an interpretive drawing contest, I made a uterus themed cake, there was a red velvet uterus grab back, and people humored me and showed up in flesh toned clothes.

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Cancer Trip UK, Part 1: Edinburgh

Cancer Trip UK Intro: I was worn out each day. I was grumpy at being tired and physically sore and slow. Which made my attitude terrible about the pound being 66% higher than the dollar, and the crappy CRAPPY beer, and the millions of people in my way. I could barely physically and then emotionally get through each day. Poor Shannon, who was especially supposed to be rewarded by the trip had to nearly physically carry me through it, being a caretaker again. We cut out a lot but getting from point A to point B and back again was a commute, and so much walking, and stairs, and logistics and brainpower, and decisions, and preparations, and wow. I severely overestimated what I could do. It was not white sands and blue warm water; it was a resolve I made to go forth to a different experience instead, thinking it would still be a reward. It was work.

But the concert. The reason for going. The Kate Bush magical once in a lifetime show. She made up for it. More on that another time.

I did not make up for my own attitude or reduced abilities with a modified outlook or letting go of what I thought I should be able to do. I was not capable because guess what… I was exhausted. There was no reserve of strength to draw from. My body and emotional fortitude had nothing to give. blah blah.

Let’s get to the fun times, because indeed, there were some of those.

Edinburgh:

We took the train from London to Edinburgh – which was really neat. I highly recommend staying awake (ahem, Shannon), buying tall cans, and occasionally standing in the space between the trains so you get to see both sides clearly. The countryside was everything I’ve imagined, and yes I’m a PBS and BBC America television whore with expectations. My favorite were the lone ginormous oak trees standing in the rolling fields with low stone fences. Which I have no pictures of. Small towns, cathedrals, castles, deer, clouds, sun, sheep, shoreline, yes all that. By the way, I’d like to discuss the tall cans: Nothing comes in 12 ounce bottles or cans. Because they AREN’T PINTS. This logic is beautiful. The beer, however, was shit. All of it. Terrible. Everywhere.

We used AirBnb the whole trip, which was an experience in itself. We spent 3 nights in Edinburgh, and walked from our apartment to the harbour and promptly found the best pub in the world. There was a group of wonderful guys we’ll never forget, and a local folk band, and a lot of single malt scotch and fresh guinness. A lot. There exists a 4 minute long video of me dancing with one of the gentlemen (!!!!!!!!!!!). Which I will show if you hand me a scotch. But not here.

Just across the street from said pub, there was the sunset and a view into the highlands.

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We hit a world music festival (Mela) that was happening all weekend, and the Indian food made me want to make love to it with my face. However, I crashed at the festival and had no energy to walk or stand, and so we left and got on a public bus for a pound fifty each and rode it the whole route. Out to the country and small towns we went, and the driver befriended us and stopped at the one market that existed for miles so we could get tall cans. This is a theme apparently.

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I summoned strength from the annals of Scotland, and was able to walk from the castle to the queen’s estate, which was a handful of miles. We had quite the adventure on the way. I threw a fit about the prices of touring the castle, so we walked around it instead, where nobody else goes. And did illegal things like climb up the backside and poked around gathering specimens of castle wall. If we’d had a joint, we totally would have smoked it too.

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Other adventures on this day along the path included stopping in a shady part of Old Town for an outdoor televised football game at The Three Sisters, odd art work, a really odd “brewery” where I think there were pigs living in there, an old lady who suddenly disappeared, cemetery blaspheme, and walking on grass we shouldn’t have at the backside of the queen’s estate.

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The now infamous pic of me at the cemetery – I can only visualize it with a goatee.

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We happened upon the biggest fireworks show of the year, which were set off from the castle with the Scottish Chamber Orchestra playing live. There were tens of thousands of people there. It was the best show I’ll probably ever see.

Edinburgh was probably my favorite part of the trip.

Upcoming: London sucked a little and nobody cares.