What is hospice for $2000, Alex?

What even is hospice care?

After I announced I was moving to hospice care I received many texts. Some read: 

“Are they treating you nice there?"

"How's the view?"

"How's the food?"

Yes, hospice can be a place. Supposedly here in Charlotte it's like checking into a 5 star lodge. If I get minimally sicker I might go there to repair. 

But most people choose to stay home. The day I left the oncologist office a case worker came to see me. Yes, same day! The next day a social worker came (she will also be coming to play/talk with Brycen) and by Friday a nurse was there. I also have a nurse's aide twice a week, and a cleaning lady once a week. I eventually will see a doctor, but my vitals are close to normal so they don't seem too rushed about that. 

By the next day I had a hospital bed with a bedside table here at home. Also, a brand new wheel chair - one I could recline in. By now I also have oxygen tanks and a special air mattress I could use if interested.

Their goal is to make dying as comfortable as possible. 

I have been out into the world maybe 5 times since moving to hospice care. So finding comfort here at home has been key. Another question I constantly receive: Are the people who come out to my house good to me? Yes. I think they have to be screened for niceness. They also will give me, or find a way to get me, pretty much anything I want or need. You have to be a good strong person to work in hospice care.

**********

So what do I do all day?

At first, I lived in a big old fog of meds and the shock of not fighting cancer anymore. But my days are starting to become routine. I wake up early to take my meds. Sometimes as early as 4m. Then I usually go back to sleep. Sometimes there is a small window for me to write or draw without falling asleep. When I do get too sleepy, its back to bed for me. Sometimes I sleep all morning. Somewhere around noon I have the hospice visitor of the day, and then I try to eat a tiny lunch. In the past 3 weeks my lunch sizes have gone from a pizza slice with fruit and a dessert to just 3 sips of ginger ale. It depends on how my back and stomach are feeling. Later my mom picks up Brycen from daycare or his other grandma drops him off. Brycen is disappointed I can’t get out of bed, but we usually make the most of it – suddenly my bed is the next best outlook patrol tower for his Paw Patrol dogs. Or we play a few rounds of Gold Fish. Brycen leaves after dinner and I have another brief window to write or scroll the internet or play online games. I am becoming less tired in the evening, but only if I slept well during the day and my meds haven’t sent me into a fog. My mom and have been watching seasons of Will and Grace on DVDs. I am usually asleep between 9 and 10. And that is my day, basically. Weekends are the same except I have more visitors.

I know a lot of people think since I am in hospice care, it means I could die any day now. I am sure that is true, but I have been trying to look at it based on how I feel. And today, at the moment anyway, I don’t feeling like dying.

So, what am I dealing with?

• Jaundice. The bilirubin in my blood is going up as my liver function goes down. As it goes up, I look more and more like Big Bird.
• Swollen organs in my abdomen. Not only is my liver engorged, so are my spleen, kidneys, gall bladder, whatever else is down there. It puts pressure on my bladder, stomach, on my stoma and on my back. I feel like I am 8 and a half months pregnant.
• Severe back pain. What is going on with my right side of my back? Referred pain? Has cancer spread to my bones? Dealing with back pain and cramps is probably my biggest complaint.
• I have started to have a few issues breathing too. This is not a daily issue but I now have oxygen tanks to help me make the air more comfortable to breath in.
• Dehydration and cotton mouth. Bad. My cotton mouth has cotton mouth. 

So where do I go from here? I'm not sobbing every time I bleed anymore. (Yes, I am still bleeding, but like I said before, the gauze that has been sent to me has been wonderful.

What an experience that was. It was like I was a boat filled with holes. Every time we plugged a hole and had it perfect, another plug would pop. It got to the point where I was naming each rupture after the things I am missing because of them: 

• a walk on the beach with my son. The kind where we dance in the waves and chase each other on sand. 
• building that extra wow sand castle 
• hiking and camping in the mountains with my son
• driving . Oh how I do love to drive
• being at the beach but not being able to take good pictures of the experience. 
• t-ball games
• start of pre-kindergarten 
• smell of fresh cut grass, fall leaves, that snow smell
• my independence
• And finding that moment where I am completely at piece outdoors

(Warning, I am about to start writing a little about me here, not about hospice. If you get bored with my tangent, I totally understand. But when you’re in hospice and you still have the ability to use your brain, you have a lot of time to think).

People ask me where my favorite place is, and I've been thinking hard. Somewhere in Alaska? Max Patch Mountain? A beach on Emerald Isle? Asheville? The cottage on the St Lawrence River my family spent going to every year? No, but please go to these places and think of me. I have done a lot of thinking about these places because I will have my ashes scattered outdoors.  

I finally realized for me it's not a place, it's a moment. And it can happen anywhere. It happened in Charlotte less than 2 weeks ago. It's the moment when all the heat and humidity drop out of the air, and the air feels as fresh as fall apples. Temperatures that were hitting 80 might drop to the 40s like it did here, or even the thirties. One time in Montana the temps dropped from 101 degrees to 63 during one of the most electrical storms I had ever been through.

I say: "I want to go camping!! This weather makes me want to be outside!" Ugh, my friend says, it's cold. And it is, but it's a fresh cold, and it's better than any high or drunk feeling ever. I want to gather my friends and dance in the woods and swim in the St. Lawrence River again until I'm purple from cold and wrinkled from exposure. It is my purest moment. This is what life should have been about. Yes, I believe in hard work, but not at the expense of stressing out the body so badly it catches diseases. 

A moment I could not wait to pass on to my son. I was hoping, (before the last week of March), to take him camping this summer. I was heart broken to have very few moments with him on the beach. I just hope he figures it out on his own. Get outside. Get into nature and get into it deep.

What does this all have to do with hospice and my death? Maybe I'm writing part of my eulogy?

Thanks for constantly checking in on me. I wish I could tell you how long I will be in hospice – people have straight up asked me. Obviously I am not on the 2 week plan.

Please share this update and give if you can (medical bills for ER visits and ambulance rides just kinda suck. Also, this new way of billing? Confusing.

I hope to have a major announcement this week! So excited.

How I got Here

How I got here, Part 1

I am going to start on March 28th. After October 2014 I had cancer, but after the week of March 28th? Cancer had me. Sure, I had some horrid days in between, but nothing like what I am going through now. I wish I had the super power of looking into the future.

Monday, March 28th was a normal chemotherapy day. The Friday before I had spent walking and wheel-chairing the zoo. Over the weekend I went to my brother’s house, where he had hid a million eggs for Brycen and some other friends to find. So when I walked into the infusion room for treatment that day, I felt really good.

Tuesday, March 29th was also normal. I was bored. We went for a small car ride. I hated on my chemo pump.

Wednesday, March 30th was busy. I was detached from my pump. I had acupuncture at Levine, and then we hurried to pick up Brycen at daycare. We might have taken him to the park. I am sure I had an ice pack with me to try to keep my stoma from engorging and bleeding.

Thursday, March 31st started out early, I had to have something checked out at the dentist office. My mom and I talked about going shopping afterwards. I had woken up with a little blood in my pouch, which was irritating, but I wanted to get this appointment done. On the way I had a feeling my bleeding wasn’t finished. At the dentist I ran to the restroom, and my suspicions were true – I was bleeding hardcore. The dentist was very kind, his father had a colostomy bag for years, and he was not going to panic, especially when I said I didn’t yet want 911 called. And even though I bled all over his bathroom. I layed down on a dental chair and we easily got the bleeding to stop – probably with a woman’s maxi pad. He even check my concerning tooth while I layed there. (It was nothing). Back at home I relaxed on my back and most of the bleeding stopped.

Until the next day. I never would have thought a drive to the dentist office in South Charlotte would be my last drive (my mom drove home). I woke up early that Friday – about 5am and blood started racing out. There is bleeding we can control, and there is bleeding we can’t – and this was one for a trip to the ER. We called an ambulance. At the hospital I was introduced to “silver nitrate” to cut off bleeding. We assumed the drug Avastan had built up so high in my blood that it was stopping my blood to clot. I was taking Avastan to help “direct” the chemo to my liver. Without it, the chemo is basically useless.

The silver nitrate, which causes a temporary chemical burn, worked through the weekend. But as it sloughed off, new bleeding occurred. Monday night I was rushed to the ER via ambulance again. I was introduced to a wonderful gauze called surgicel. I was given a stitch. I was sent home with new hope.

On Wednesday afternoon I walked into the ER. On, Friday April 8th I was rushed to ER. I was basically told the same thing: Use the silver nitrate and the special gauze and hopefully the bleeding will slow as Avastan left the body. The hard thing was the gauze and the nitrate both ripped up skin from the stoma. Remember, the stoma is soft skin, a lot like gums. At the time we still thought this was the only cause of my bleeding.

On Monday, April 11th I was sick and tired of being in bed. I went to the surgeon who put in my stoma and ostomy in the first place. His belief was my wafers were too small. A wafer is an appliance that sticks to my skin, and then the pouches stick to it like a rubbermaid container. The too small wafer was causing blood to pool around my stoma. He helped us order larger pouches, and a nurse to come to my house to check my stoma a couple times a week.

Meanwhile it had been 2 weeks without Avastan, and the blood flow wasn’t slowing down. No way could I ever take that drug again. But then my chemo would be ineffective. I started to talk to people closest with me: What if I chose to end treatment?

After the surgeon’s office visit I once again I left with hope. For about 48 hours I had no bleeding. We were counting down the days to a beach trip. And I was going on that trip no matter what.

Then on Thursday my damn stoma erupted again. I was laying on my back when it happened. This was the first time it bled literally like a geyser without my moving around or using the bathroom. Damn. Every time I had a setback, I sobbed and sobbed.

Still, we made it to the beach. With Brycen.

 taken by my cousin

 taken by my cousin (that's my mom with Brycen)

 I won’t go into all the details. The trip was not what I wanted or expected, but looking back everyone had fun. I am endlessly grateful to my cousin Diane, who came with us, and helped us not only with Brycen, but with me too. There were 5 ER visits that week. The 5th one, the night before we were suppose to leave, left me admitted to the hospital for 5 days. I needed 3 blood transfusions. Then they started to tell me I needed my gall bladder removed (thank goodness that didn’t happen). We were all worried about my ride back to Charlotte, but it actually turned out pleasant.

But we learned a few things from my hospital visit on the coast:

1. I most likely was NOT bleeding because of Avastan, although it wasn’t helping matters at all.
2. I am bleeding because of condition called Portal Hypertension. Basically blood isn’t flowing back through my liver, it’s being rejected and needs a place to escape. Google it if you want more info. It is rare. I don’t know why I have it.
3. Combat Gauze is the best way to end my bleeding. THANK YOU EVERYONE WHO SENT ME Combat Gauze or something like it!! My mom, my AWESOME mom, packs the wound with the gauze, puts a pad over it and we keep it all together with an abdominal binder (think: spanx. Or a girdle.)

I returned to Charlotte Tuesday the 26th.

On Wednesday I had my final appointment at the oncologist office. I already knew I couldn’t go on with treatments, like I said before. But I was expecting, truth be told, to run through some options, like we had before. But the problem was those other options are quite new, not showing a lot of promise, and have a lot of negative side effects. So BAM, just like that we discontinued treatments. I said goodbye to my infusion nurses who have been with me for 18 months.

And I moved to hospice care.

Wait, what?

Thank you to everyone who read this far! I know, a lot of boring technical details. Covering a whole month is HARD. Probably the most important part is what I learned at the coastal hospital. I will be back soon with part 2. 

A Quick Update

Just a very quick update because I am actually alert and NOT surrounded by 70 people.

I have decided to end treatments and I am now in hospice care.

Let me re-phrase slightly: I am not giving up. There are no longer effective treatments for me, so I am discontinuing ineffective treatments.

More soon.

Pictures are by my friend Dave. Last Saturday, as I settled into my new life, I said fuck cancer and we took B to a strawberry farm out in the country. The fresh air was wonderful for my soul. 

Holding on

I've had a very long and rough 2 days. I just want to look at pretty beachy stuff, so I have something to look forward to, and to hold onto.

ER trip number 6

The other night I was bored so I decided to take a trip to the Emergency Room. Before being diagnosed with cancer I had only been a patient at an ER once for some stitches, when I was ten, and I hardly remember any of it. Since my diagnosis I have been 6 times, once by ambulance and once rushed from the oncologist office through a maze of doorways and elevators and halls in a wheelchair.

But this time it was just because I didn't have anything better to do*. I arrived at 7:40 and tried to put on a show, hoping it would get me seen faster.

"Hi. I have cancer and I am currently receiving chemo treatments. This afternoon I have felt dizziness, severe back pain, neck pain and sometimes my left arm feels numb."

Receptionist looks me up and down. "Uh-huh. Do you use palm scan?"

Darn. So I settled in the waiting room. The biggest drama was a lady p.oed when she missed her name being called because she was in the bathroom. She fell to the bottom of the wait list. Also a toddler named Beverly really just wanted to touch a plant, which caused her caregiver to go into a tizzy of colorful words for us all to hear.

After 40 minutes my name was called and the nurse checked my vitals. I joked they can't be that vital, since I have been waiting so long. She did not find this humorous, and instead apologized for my wait. I think I hurt her feelings. After I again told my symptoms, I was given a mask and was ushered into the "sub-waiting room" where there were at least 3 kids under the age of 7 watching The Walking Dead on the TV.

I was then escorted to my little ER room. There was a heavy police presence in the hall and I wanted to know all the details. Instead my vitals were taken again and I was told the Dr. would get to me when she got around to me. Sigh. At least leave the door open so I have something to watch! The man next door wants to go home even though he has 2 blood clots in his lungs? I want to know more!!

I waited for about 4 days for the Dr. to come around with her scribe. She was very sweet but when she pressed on my left kidney I screamed and almost scratched her eyes out.

Now things were moving along. I had no issues doing a urine test. I had an EKG test (auto correct keeps changing ekg to keg) and blood taken at the same time!! Just as they were leaving I was picked up in a wheel chair to have chest and back X-rays done. As I was being wheeled around, I got to see the police escorting some people out. Other than that, the nurses all looked as bored as I was. After my return a new nurse came in and took my blood pressure while laying down, sitting up and standing up. I passed on all 3 and didn't have to be hooked up to an IV drip.

By the way, after nearly 18 months of being poked and prodded I can say there are 2 kinds of nurses. I don't care what else you do, if you can stick a needle in me with little to no pain, then you are the BEST kind of nurse. All other nurses are horrible, no matter what else they can do otherwise.

After the whirlwind of fun activity - this is why I had come to the ER - things stalled out again as I had to wait my test results. Another 18 weeks pass, and my Doc pops in to say - my potassium is very low. Which is a little odd because I take supplements daily, but it explained my dizziness and muscle aches. Might have even explained my mood swings and the fact my socks will NEVER stay up.

That was the end of my ER journey #6.

*Please know the above is all sarcasm. I would never go to a hospital just to waste the valuable time of people in the medical field - who are all awesome. Unless you hurt me when sticking a needle in my arm - then I hate you. I had symptoms that correlated with a heart attack and we decided we would rather be reassured then to worry about it, especially since symptoms are often different in women. The Dr gave me great advice on what to look for in the case of a real heart attack. Actually, my heart looks great, one thing I actually have going for me, health wise!!

Welcoming Spring

I am not religious, so I have often wondered "do I have the right to celebrate Easter?" I grew up thinking Easter meant egg hunts, the Easter bunny, and of course, the homemade baskets my mom made, filled with candy and small toys. And most of all, Easter meant the beginning of spring, which is great news when you live in upstate NY.

Down here in the south, spring like weather started 3 weeks ago, although we have had a couple of chillier days. Easter day itself was only in the 50s, and it rained almost the entire day. Brycen had his Easter with me on Saturday, which might be fitting because with me, it was definitely about the eggs and the candy.

First, we did a little clue hunt at my house. He LOVED this.

There were clues that I read to him, like "where do we keep the ice trays?" Easy stuff.

I don't have any pictures but he found his basket in the dishwasher. It was filled with a little bit of candy (what is an Easter basket without a chocolate bunny?) and some small toys.

Then we went to my brother and sister in law's house for the hunt. On the 30 minute drive there, the sun disappeared, the temperatures fell and the sky got dark. So much for spring!

But there was enough time for the hunt. My sister in law invited over a friend who was watching her two grandchildren for a week.

My brother The Easter Bunny hid 63 eggs in the yard! The 3 kids did a pretty good job of getting an even amount, although Brycen and big sister might have picked up a slightly larger number than little sister.

The basket from his aunt and uncle the Easter Bunny. Notice I am wearing flip flops!

And some randoms pictures:

My personal basket had ice cream choices:

Happy Easter to those who celebrate, and happy spring to all!!

Saying Yes

B: "Mommy, can I have hot chips?" (Dorritos)

Me: "Not today, honey."

B: "Mommy, can I buy Kisha (daddy's fiancee) a chocolate bar? Pleeeeeease. This is her favorite!!!"

Me: "Nope, another time."

B: "Can we go to the park?"

Me: "No, mommy is tired."

B: "Can we play hide and seek?" (asked about 5 times a day).

Me: "No, granny is busy and mommy is tired."

B: "Can I help make dinner?"

Me: "Not this time, we are in a hurry."

B: "I NEED this Paw Patrol character!"

Me: "You have a zillion Paw Patrol things."

Brycen is really very good at accepting no. I never have had to deal with a tantrum in public due to him not getting what he wants. There are a few times where he asks again and again, just to make sure I said no, and maybe a small pout here and there.

My "nos" are not usualy straightforward. I give him choices. We can't go to the park, but you can play outside when we get home. Or, you can get the Dorritos, but then you are not getting the cookies. Which would you rather have? This has worked great for Brycen, just as it worked for the most part in my classroom for 13 years.

This was always my favorite. Me to student: "CONGRATS! You can pick one thing out of the treasure box!" Student: "Could I pick 2?" Me in a cheery voice: "Nope, but you can have zero!!"

(side note: Brycen more than makes up with his tolerance of hearing no by being the world's biggest whiner in the car. We could be going to the local pizza joint less than a mile away and I would hear 36 times: "Are we there YET!!?" My ears bleed on car trips.)

Do people still call places that make pizza 'pizza joints'?

Anyway, I don't feel guilty saying no to him, it is absolutely logical to make sure he knows he can't have everything in life. This kid has 2 homes and 2 families who love him very much, and is about to gain a third as his daddy gets married. So he can live without an icee or the latest Matchbox car.

But once in a while, it is fun to just say yes. And it doesn't have to be monetary items. Saying yes to time well spent is way more memorable. But on this particular day, I threw in a couple more yeses, because you never know if you'll have another day like this.

"Mommy, can we go to the zoo?"

Hell yeah!! So we packed up our snacks, our meds, and my sister in-law and headed south.

At the gas station in South Carolina, land of deep accents and cheap gas, Brycen asked for "hot chips" which is what he calls Dorritos, because there was a picture of Batman on them. Well-played, Dorritos. I don't think Brycen ate 5 chips. It was really all about Batman. Meanwhile the cashier politely asked if the Eeeeaster buuunny would be viiiiiiis -i - tin' to which Brycen just stared blankly at her.

Thank goodness for portable DVD players on long trips. Brycen happily watched something with headphones on, although he did pause about 5 times to ask if we were there yet. 5 times in 90 minutes is not a bad ratio though. No bleeding from my ears.

I tried to take a fair amount of pictures and videos at the zoo, but I still missed out on some things. For example, the popcorn. We waited 15 minutes in line for a bag of popcorn (another YES) because the lady in front of us had decided to bring seven junior high age boys to the zoo and they all had to pay for their icees separately. Did she lose a bet? Finally, the popcorn was neatly tied to my wheelchair and requested often throughout the day - but I must be off my game - no pictures.

The first 30 minutes were really about popcorn, riding in mommy's wheelchair and riding the merry-go-round. (yes, yes, and yes). Can somebody tell me why I can't just give the attendant at the carousal the $2? Why do I have to go wait in a different line to load money onto a card? Is someone hoping I will put extra money on the card, since I waited in line anyway? Shenanigans. Luckily Brycen was patient, and totally enthralled watching kids on a rock climbing wall.

Yes, I promise we were actually at a zoo. A zoo with animals. But when you let a 4 year old lead the day, you get a variety show.

Finally, after the merry-go-round, we started to see the main show. Brycen loves the lions, tigers and bears. The lions and tigers were actually out moving - not just sleeping. I feel bad though, these animals deserve more than these tiny enclosure.

The turtles were happy though.

Brycen loved following the map. He could tell by the pictures what animal was next. The map was the other star of the trip, second to only the popcorn. My wheelchair was a close third. He had no problem giving it up when mommy needed it!

Brycen is NOT a huge animal lover. Still, he was intrigued by the elephants, and the gorillas. The small mammals made him nervous. I also made the mistake of teasing him about monkeys throwing their poo at him. if you saw how scared he became after that, you would have signed me up for world's worst mother award.

Another star of the day? The photo booth. I know, the zoo is not a likely place to visit a photo booth, but where is? When will I get this chance again!? I knew the second I saw it Brycen and I would have to get our pictures done. That might have been my favorite non-animal event.

We then moved on to the sleeping kangaroos and wallabies, and visited the penguins in the bird house.

I am glad I got the above shot. You would think Brycen knew exactly where to go on that map. Lead the way, young sir!!

He wouldn't feed the parakeets or the giraffes, but he had no problem throwing fish food over the fence and into the pond.

That wrapped up our trip to the zoo. We had said we would be there 2-3 hours and three hours flew by, and we didn't even see the aquarium, reptile exhibit or the barn yard animals. We had a horrible restaurant experience on the way home (never again, Applebees!) and Brycen watched Monster Inc. and slept.

I did well at the zoo, although if it was any farther away I would have needed to stay overnight. Driving home, especially in holiday weekend traffic, was tough. I did more walking than sitting in the wheel chair, mostly because I HATE when I can't control where I am going. And although I brought my colostomy supplies in the car, I failed to bring them into the park. Oops.

Overall, I would give the day 4.5 out of 5 stars. I think Brycen would have given it a 10 out of 5, telling by his smiles when I handed him off to his dad.

"Brycen, what was your favorite animal at the zoo?"

"You, mommy."

I don't know if I should be offended or deeply flattered.

There is the popcorn!! It did make an appearance!!

More adventures to come in the next few months!