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. 

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!!

Around Here . . .

I guess when I am not talking about hiking, I have nothing to blog about!

Around here, things have been roller-coastery for me. Last week, I was feeling a tad depressed. We were suppose to take Brycen to Asheville, but my stoma was showing signs of light bleeding. I want to travel so bad, but even a place 2-3 hours away seems too far.

So Friday I MADE myself get out of the house for something other than playing with Brycen outside. My mom and I went to Cheesecake Factory with a gift card I received from my birthday, and then to one of my favorite independent stores, Paper Skyscraper.

Outside, spring had sprung a little early:

On Saturday, Brycen started T-ball. What a difference between playing a sport at 3 years of age versus 4. The three year olds were adorable, but also provided the comedy! One little guy ran straight to second and kept going until he reached another field, where soccer practice was taking place. Brycen was much more content and relaxed with T-ball than he ever was with indoor soccer. In fact, I think he might have even been bored at times waiting for all the kids to have a chance to bat!

We celebrated his and his cousin's first practice by taking them to breakfast, where I had my first chicken and waffle experience. So good.

After we all went home and had a nap, it was off to my brother's house for a cookout, and for lego fun. I was doing great! So much energy.

On Sunday we decided to to do a little giving. We brought flowers to a close friend of mine who was recently diagnosed with cancer. We then crossed Charlotte's midsection, getting every single red light. I hardly recognized my old neighborhood! Brycen whined the whole time. There needs to be a faster way to get from East Charlotte to West, but B loved handing out a birthday present for another dear friend. And peeing on her sidewalk. Boys.

Random sky picture, because I LOVE hazy skies. I often can't stand hot days without a cloud in the sky to provide relief. 

I was still going strong Monday. I had CT scans done at a new place, not the hospital - and they offered CHOICES in contrast beverages. So instead of 32 ounces of odd tasting water, I got 2 16 ounce cups of Cran-Raspberry juice. Yummmm. I had never been to an office where people were so pleasant on a Monday morning, even though I was 15 minutes late for my appointment. (Again, Charlotte traffic).

We stopped for donuts on the way home, and then I got to work on another drawing. I had been completing a drawing every day or two . . .

. . . but it all ended on Tuesday. Chemo day. My CT scans from Monday morning showed growth in some areas but stability in my liver, which prompted my oncologist to continue my current every other week schedule - which is basically keeping me alive these days. On top of that, my stoma was enlarged and sore. Luckily a good friend of mine sat with me, and kept me entertained for the 2 or so hours. I rarely get to see her, so I was basically "throwing up" news after news about me and questions as to catch up. You know the stream of conversation when you have no idea how you got onto the topic? That was us! After I was hooked up to my 46 hour pump, she drove me home.

Tuesday night my stoma was still greatly enlarged, and I could see veins were ready to pop. I quickly put a cold compress on it, and it shrunk to normal size. All day Wednesday I slept or worked on a puzzle, and things seemed to be quiet in the ostomy bag.

t wasn't until after 9pm when I checked my stoma I realized it was heavily bleeding. Fortunately we got the bleeding under control, so no ER trip. But it means I will need a few days of laying as still as possible to not agitate it. This afternoon (Thursday) I went downstairs, propped myself on the couch as to not disturb the site, and realized I was bleeding AGAIN. Just from walking down the stairs! This time it was just lightly, but it sent me into a tizzy of a bad mood. Why do I have to deal with this damn thing when I feel so good otherwise? It is really scary because 99% of the time I don't know it's bleeding. It doesn't hurt. I'm scared I will bleed out while sleeping. I am scared I will pass out during a baseball game. And the worst part, is doctors really are baffled by it, except to say "just take it as easy as possible -it only bleeds when irritated." So I have to spend 3-4 days on my back playing games on my phone until I am cross eyed? Because it is really hard to sit up to draw, eat, even type this right now, without pissing off Ornery Mona the Stoma.

Guess who is more irritated?

But let's end on some happy pictures, from TWO weeks ago, when spring was just started to drift in. You can see by our hats it was still chilly:

I hope all is better with you!!

One more thing: Next month I am renting a place on the beach. Ocean front. I don't care the weather, people who know me know I love a rainy day as much as a sunny one. Brycen will be with us for at least half the trip, if not all (except I don't want him to miss T-ball). A friend from NYC might be here, she might not. All I know is, this damn stoma will NOT ruin this trip. Will. NOT.

Around Here . . .

I don't like to swear on my blog, but last week (the last week of February) was just plain shitty. A close friend/co-teacher of many years, found out she too has cancer. My cancer was exhausting me, and I had a deep pain in my side. The pain could be tumors, or it could just have been something simple, like a pulled muscle, and because of cancer the pain is 10 times what it normally would have been. And it seemed like every plan I made fell through, sometimes at the last minute.

And who on earth keeps driving through our neighborhood at all different hours with no muffler on the car?!

I am happy to say that this past week was much better, even though it was a chemo week and I spent 46 hours attached to a pump . . .

. . . The side effects of chemotherapy are never the same for two people. For me, on my current cocktail of drugs, it causes constant sweating the first few hours. And it I am not sweating the liquids out, I am using the bathroom. On top of that, my nose and eyes run. It's like I am being squeezed through a juicer! Luckily if I keep drinking water the effects of the effects are minimal, except extreme eye irritation. Anyone who has seen me lately probably thinks I am stoned, or have been crying, or both. But I've been thinking, there are way worse things I have been through. There is way worse others have been through.

In other words, I am extremely thankful to be feeling this good lately!! If I didn't fall asleep every time I sat or laid down, I might actually feel normal!

So, to keep my mind off the craziness . . . and the chemotherapy . . . and the cancer . . . I have been doodling:

The one with the croc and gator is for Brycen, as this is a favorite new saying. 

Work in progress. 

And it takes a little preparation, but I love involving Brycen in art too:

We had a couple really nice days to bring March in as a lamb, not a lion this year:

Picnic on a park bench!! It's almost that time of year again. 

A trip to Ikea with a 4 year old is always delightful. We brought my wheelchair in case the long warehouse walk exhausted me. B and I ended taking turns pushing each other.

This day was NOT warm. It was a chilly, windy dry day. When Brycen removed his hat inside Ikea it looked like he had taken scissors and hacked his hair:

It was hard to not laugh as he talked to us, his hair was too much!

We also have been enjoying board games. I am going to do a post reviewing some games for kids under 4. I had no idea there were so many games though, and there a few I wish I had found when he was 18 months or 2!

Go Fish has been a crowd favorite around here, and since it is the (ADORABLE) alphabet version, it is really reinforcing letters for him! Although we read everyday, I haven't been teaching him reading skills as much as I was in January. Luckily he moved up to the 4 year old room at his school, and the teacher is very enthusiastic about reading skills!! This is the first time he's really learned academics, not just social skills.

And some completely random pictures:

Cancer awareness bracelets for every type of cancer that exists. I sadly need 2 melanomas, 2 lymphomas, 1 lung cancer, 1 uterine cancer and for myself, 1 colon cancer. That is too many bracelets, and it doesn't even count friends who have someone in THEIR life affected. It really puts things in perspective. Listen to your body, friends. 

Making tickets for a train ride. I just love him in a hat. 

Writing a thank you note (someone gave him a tub of legos after we attended Lego KidsFest). It might look like complete rubbish, but his one to one word correspondence is on point.

I am trying my best to take things day by day, but I do look forward to slightly warmer weather, trying out new playgrounds, friends visiting, and a lot more drawing!

What have you been up to lately? What are you looking forward to?

Around Here . . .

Around here we are learning to cook, and to read: 

Completing a lot of jigsaw puzzles, which takes over the dining room table, and means we have to have "picnic dinners" in the living room, which B LOVES.

Lots of playing, and some home repair work:

More cooking:

Why did we make this frozen treat on the coldest day of the year?  So cold B had his Spider Man slippers on without being asked! 

More playing:

I put this pictures on here because while the three of us were contently building, Brycen sighed and stated "I just love when the whole family does the same thing."

Very, very little reading:

I am on MAYBE page 5 of both and keep falling asleep. I am not sure if it is the exhaustion of cancer and chemo or if the books are boring (which I doubt).

Around here, I have been doodling when I am not putting puzzles together. I have learned that upstairs is exactly 600 degrees warmer than down, so if I don't want to fall asleep while drawing, I best do it downstairs.

I spied at B's daycare:

Brycen reports that he does need Tiny to listen to his woes. Great teaching strategy. I had a teddy bear when I taught kindergarten. 

And the best for last. (No, I am not suddenly cured of cancer). Yesterday my new oncologist asked me, basically, if I was enjoying life. I said, I don't get too bored but I miss working. And I miss traveling. But everything makes me so tired. I take a 2-3 hour nap almost every afternoon. For the second time in a week (I see a doctor at palliative care, which is basically end of life care, they manage my pain meds once a month) I was offered Ritalin. Thanks, but no thanks.  

We went on to talk about traveling, because this might be a really good time to start planning and going. We discussed what went wrong before on failed trips. He said I had to face it, camping and roughing it is NOT in the cards for me. He's right, it can be exhausting for healthy people! He was not as opposed to renting a camper van or RV - sort of a more glamping experience - IF i stay on the east coast. As for farther trips he would get me some meds to help me fly, because driving or taking a train out west would be too long and far from treatment. Also, get trip insurance for any flight because obviously, at the last minute I might not be able to go. And he recommended me taking a steroid everyday I'm gone to give me that boost I might need. In other words, so I don't sleep through my entire trip. 

There is a lot of ifs that I won't get into here, but if somehow I could have a dream trip, here are my thoughts:

-Fly to Albuquerque, rent an RV and camp near Santa Fe and Taos, maybe even Mesa Verde. Or maybe rent a car for Santa Fe and Taos, return to Albuquerque, rent an RV for Mesa Verde. Look, I am planning already.

-Fly to San Francisco, stay with a friend, and visit Yosemite - either by renting a camper van or staying in a lodge there. 

-Drive (with help) to Washington DC and take the Vermonter - a 10 hour train ride to Vermont, where I have friends in a tiny but lovely New England village called Weston. So tiny it doesn't even have schools - students are bussed 11 miles away. 

-all of the above!!

-for now, we might just stick to taking Brycen to my parent's house closer to the coast. I will need my steroids for keeping up with his energy!