May 25

Woo hoo! Last you heard, I was stuck in the damned hospital again losing prep time for my cruise and feeling like crap from the pneumonia I managed to catch. I have so much to catch you up on it's not even funny!

So, Sammy rocks. I just want to put that out there. She had her meeting with the lawyer and got me all sorts of good information. I've been worried about the whole deal with giving Jamie my house/mortgage. I couldn't figure out how to word it in the will, wasn't sure it was even allowed, blah, blah, blah. Sam asked the lawyer about it and here's what was said:


3.  You CAN bequeath a home with a mortgage to someone... no problem!  They get the house AND the mortgage.  The title gets transferred:  As long as Jaime keeps paying, there will likely be no worries, at least for a while or until tax time (for him).  More on that for you/him if you want it, but not necessary now.

She also asked a funeral home about vessels for my ashes. Turns out there are no specifications or requirements for the vessel or where it is purchased so Pottery Barn, here I come. I wonder if I can have my ashes put in a piggy bank.....heck I wonder what size container you need for the ashes of a human body. Going to have to Google that one......

JBB has kindly offered to spread some of me in Hawaii and some of me on Mt. Kiliminjaro. Baby doll said he would spread some of me on a cruise. There's going to be a little bit of me all over the place!

So, I was finally sprung from that infernal hospital and started the job of cruise prep. Baby doll made the mistake of telling me he was really in need of a new shirt to go with his suit that he wears on the "elegant" nights on the cruise. He knows how I get when I start shopping for him. $150 later, I'm not sure how I feel that I'm spiffing him up for the next chickie he dates! Ha! So, I bought him a plain, white shirt since that was what he had requested but I also bought him a lavender shirt just to shake things up. Tell me how hot this man is!! YUM!

He was trying stuff on when we were packing and he showed me the choice of shoes that I had to pick from for the suit outfit. I was not a happy camper. 

 

 

What's up with all the shoes and loafers with ties?? Back to the store and another $150 later I got him set up with appropriate footwear as well. Steve Madden! One of my fave shoe brands! Money well spent to have such delicious arm candy to show off!

 

 

As far as my own prep, I wasn't in need of purchasing much, it was just a matter of packing. I almost bought myself some sunglasses because I couldn't find mine anywhere but I finally stumbled across my stash and found that I own five pairs already so I was good with those. I know that somewhere I also have a stash of 4-5 sets of headphones ranging from really cheap $5 ones to some really nice $30 ones with microphones and whatnot. Do you think I could find these ANYwhere?? Nope. So, I did have to go buy myself a new cheap pair of those for my nano which I never ended up using, of course. I also decided to buy myself a little one cup blender to make my milkshakes in my room instead of packing my handheld immersion blender. I found a super cute blender for $24 at Walmart. It was perfect!

 

So in between all of this running around prep, baby doll and I had another couples date. Best date yet! We had Toby and Pamela over for dinner and some Euchre. Great conversation, fun couple, we're definitely having them over again, and soon. Wish we had found them last summer when we were looking for a cool couple to hang with but hey, we found them now so we're going to take advantage of it while we can!

 

Speaking of couple dates, baby doll and I had signed up to do the City Solve again this year, way back last fall. Kunkel and Joe had actually signed up with us this year but then quite suddenly moved to Florida, so we had dig up a couple of new suckers to join us. Luckily, Sam was a pretty easy sale. She and Mark are going to drive over from Liverpool that day to do it with us. I just ordered their Team Simpatico t-shirts last night. I can't wait! It is going to be so much fun doing it with four people instead of just two!! We're going to see if we can beat our time from last year since we'll have four brains working on puzzles.

 

I've been hearing from a lot of unknown relatives recently. Incredibly sweet and thoughtful e-mails, and friending on Facebook. When it first started I was like WTH? Turns out my Aunt Dora sent out a super sweet note to my extended family. 

      

Hi Family,

 

Aunt Paralee's daughter Cathy Quinn has been fighting cancer for over 2 years.  She has kept a blog about her fight and you are welcome to read about her plight at  www.owmytongue.blogspot.com

 

She hasn't spoken in 2 years, or been able to eat, taste etc by mouth, due to having two major surgeries of her tongue.  Read her blog to see what a courageous, positive attitude she has maintained throughout her ordeal.

 

I think she would appreciate hearing from family members in an email, or card to show her the family cares. or email her at birdybbq@yahoo.com    put Mighty Quinnster in the subject line or friend her on facebook.

 

If you never met her just introduce yourself as it has been many years since she attended the family reunion, but let her know the family cares.

 

Thank You All

Love Dora

How awesome is that?? Aunt Dora rocks. :-)

 

I'm still hearing stories about the playdate I had with my friend Addison about a month ago. I was told that the day after our playdate she decided that she couldn't talk and was communicating by all hand gestures. What a hoot! And she was telling her 'Yaya' (grandma) about all the games I brought her and Yaya asked if we played the games and Addison's response was that we played A LOT. I have to agree. Not that we played the games I brought but I think I handled just about every toy that child owns. LOL! I'm hoping to continue having some energy in the short term and get one last play date set up with her. She and I both had such a good time together. I want a do-over.

 

Okay, I'm getting distracted over here, back to the cruise. Baby doll and I were up at the crack of dawn Saturday morning, excited to get to the airport and get things moving. Turns out a lot of luggage is needed when you're ill. We checked 5 bags. Yes, 5. Yeesh. My hope was that since one of them was filled with food, it would be empty by the end of the trip and we would only need to pay to check 4 bags because let me tell you, that last bag is like $125 all by itself! I ended up having to check 5 bags again for the trip home but that's later in the story.

 

The day of travel went okay. Things seemed to go pretty smoothly at the airports. They didn't like my PEG at Rochester and had me step to the side and get my hands sprayed after running them over the PEG site. Weird. I had ponied up some extra money for our flights the night before to upgrade us to "Economy Comfort". These are the bigger seats right behind first class. I was glad I spent that extra dough because for once I didn't feel like a sardine on the planes. I had a little breathing room and no strangers leaning against me like my flights to visit JBB in NYC and back a couple of years ago.

 

We arrived at the ship and set off to find our balcony room. Woo hoo! Some of our luggage had already arrived so we started to unpack but soon we were interrupted to go do the safety muster which lasted a little over an hour I think! Man, what a pain in the butt that thing is. We got back to the room and more of our luggage had appeared. The only bag I was missing was the one with all my meds and medical supplies. Uh oh. AND I discovered one of my bags partially empty. They confiscated my cute little $24 Walmart blender. Huh? So now it's off to Guest Services to find out what's going on. This is where we met Mario. Or as baby doll refers to him, Super Mario. He was by far the best customer service person I have ever met in my life. Such a doll! He saved my life! Or at least my cruise happiness. Here's a pic of us with Super Mario:

 

 

We told him about my most important piece of luggage being MIA and about the reason for me needing a blender and could I please have it back. He immediately started looking for my luggage. He took us down to where the last few pieces were staged for delivery. It wasn't there. Then he took us over to the medical bay to see if we could talk to a doctor but he was unsuccessful rousting one. At this point he sat us down in a lounge and said he would go do some footwork for us and report back in. And I started crying. What can I say, it had been a long day and I was fed up. I was so screwed if they couldn't find that bag. Mario ended up sending us off to dinner and said he would work on the problems and get back to us.

At dinner we discussed my special needs with the serving crew. They went and got the manager, Irena, she was a total sweetheart. She worked it out so that I got to see a preview of the next night's dinner menu and could pick out which foods I wanted them to "blenderize" for me. That way my food could be done up ahead of time and I could eat with everyone else without a hitch. It worked out really well and I got to eat all sorts of cool bisques including an escargot bisque!

Not that I can taste any of this but it's a mental thing. I like imagining what it tastes like based on the description on the menu. Meanwhile, I was really worried about the food sitch in regards to my mental state. I seriously miss eating. Knowing that I will never eat again is an absolute torture. Watching other people eat is both fascinating and painful. In the end, it ended up being one of those good thing/bad thing situations. I was jealous of very few items that baby doll got to eat because in all honesty, most of the food looked like crap. I think it was the very first night that baby doll played it safe and ordered some herbed chicken. Pretty much the most boring thing on the entire menu and when it came out it looked greasy, chewy, and tough.
 

 So, good for me that most of the food looked tasteless and not of a stellar quality. Bummer for baby doll. He was joking that he was going to be fasting from 'good' food for a week while on the cruise. Most people look forward to the food, he was bummed that he wouldn't be dining at Chez Quinny. And sure enough, upon getting home last night I nuked him some of my lasagna and the moans of pleasure coming from the kitchen table as he scarfed it down were some of the most heartening sounds ever. Have I mentioned lately how much I love to cook?!?

After dinner we discovered that my medical bag had arrived in our room but I still didn't have my blender and now they had left a note saying they confiscated my hammer that I brought to crush my meds. Say what?? 

Back down to see Mario. So, security was being a dick about the hammer. They felt it could be used as a weapon and refused to let me have it. This led to baby doll and I struggling to crush my meds half the trip. We tried shoes, we bought a pill crusher, we bought a mortar and pestle. Which by the way, made for a hilariously dirty looking picture when I snapped one of baby doll grinding some pills for me. Mr. Price is sure to get a kick out of this:

 Anyway, the blender it turns out is a fire hazard so legally they could not let me have that in the room. They said that I could stop down to Guest Services any hour of the day and use it though which is what I did. There were some really cool things on the lunch menus that I had fun blenderizing and eating such as pear cobbler and bacon/bean soup. I also did a ton of yogurt and fruit smoothies. And after trying all sorts of different ways to crush pills, I started visiting my hammer over in security to crush pills ahead of time. This annoyed them so they handed the hammer over to Guest Services as well and I got visitation rights to both my pieces of equipment. And when all was said and done, Mario was telling me he used to do nothing but drink smoothies back at home but he hadn't had one since coming aboard the ship. So, I gifted him the blender at the end of the cruise. Saved me room in my luggage and made him happy so all ended well.

So that was boarding day of the cruise. Other little tidbits. Right before baby doll brought our luggage downstairs to load into the car, I decided that I should toss in a couple of pairs of jeans, a couple of sweaters, and a couple of hoodies. Just to be safe because all I had packed were cute little short sets, tankinis, and summery dresses. Yeah, thank god I threw those in there. I froze almost the whole time on the ship. They kept that tin can way too cold for my little 103 pound body. I even bought two more hoodies as souvenirs while I was there! And I was so proud of myself for realizing that I couldn't syringe drinks if I was wearing a one piece bathing suit but then dummy that I am, I packed dresses for dinner every night. I can't syringe in a dress either! Doh! Although I did wear a dress for the first elegant night and I just hooked my syringe up ahead of time and taped it to my body so that it came out of the arm hole of the dress a little. Looked kind of stupid when I ate but I made it work.

Day 2 of the cruise was our day at Carnival's private island called Half Moon Cay. On my last cruise, the private island stop in the Bahamas was my fave stop so I was really looking forward to this one as well. And it would have been wonderful because it looked EXACTLY like the other private island but it rained off and on, all day long. We were lying on the beach and it was overcast but at least we were on the beach, and then it would start to rain, and it was freezing. Then it would stop 10 minutes later and you'd start to warm up, and then it would start again. Forget that. After a couple of hours we gave it up and went back to the ship. Seemed like a good day to see what was happening at the casino (I lost $75 overall). At one point I noticed my PEG was leaking and I didn't feel like going back to the room so I thought it fitting to use a casino napkin around my PEG while I was belly up to the bar. Ha!

 Baby doll and I also played a ton of cards. We're getting so that we know each others' strategies so the games are getting very cutthroat. And he's starting to kick my ass more and more often!!

This was the night that I met Emma who was selling the drinks that come in the coconut monkey. I don't know how we ended up talking/connecting but we did and she ended up telling me her mother passed away from cancer when Emma was 13 years old. But if anyone asks about her mom she tells them that her mom is great. She says she tends to get too emotional talking about her mom's death. I told her that didn't seem right. It's okay to cry in front of people (yeah, never thought I'd be saying that!) and that she should celebrate the joy her mom actually did bring into her life as well as how much love she has for her. So, Emma and I 'clicked'. She watched out for me the rest of the cruise. She was walking past one of those quarter machines and a bunch of quarters fell and nobody was around so she came over and got me and brought me to the machine so that I could score the quarters. SWEEEEET! Here's Emma and I:

 
Baby doll and I also discovered on Day 2 that we were seated with another couple for dinner. I was wondering why they had put just the two of us at a 6 seater, guess I found out. Harold and Wandy were great. They're both pastors too which we all got a kick out of, like it was meant for them to win that cruise and be seated with us. I liked them.

Not too much else to note for Day #2. I discovered there was a launderette right across the hall from our room. Which was a really good thing because I'm kind of a messy marvin and ended up doing three loads of laundry on the cruise. Yeah, go figure. I also pulled a 'Karen Barraco Little'. I had taken a shower and washed my hair and couldn't figure out why an hour later I looked like a total grease ball. Turns out I packed conditioner, not shampoo. Yeah, I blame Karen. She just did this exact same thing a week or two ago so it got imprinted into my brain and carried out. I'm gonna be giving her a good talking to the next time I see her!

Okay, we're now up to Day 3 which was a day at sea but I'm blogged out at this point. I've been working on this thing off an on all day today. It was way too nice to stay inside for any length of time so a lot of yardwork got done today. I should take pictures tomorrow and show you what's going on around the homestead. Meanwhile, I will continue with cruise stories tomorrow. 

Hope everyone has a fantastic Memorial Day!

May 13

So, I'm back in the hospital again. Stupid pneumonia. Been here since Sunday night. Getting sprung tomorrow. Hopefully they've loaded me up with enough antibiotics to make it through the cruise. Unfortunately, I've lost a lot of prep time for the cruise. I've been making lists like you wouldn't believe of everything I need to do, buy, pack, and whatever. Hopefully I have the energy to accomplish it all! That seems to be my biggest deterrent in life as of late. Simply finding energy. And kind of hand in hand with that is my strength. It's starting to be an effort to lift a laundry basket or to open a juice bottle. I've become the wussy girl who needs to be taken care of. Oh the horror! ;-)

Luckily, I have just the man for the job. Baby doll asked me if I needed anything while I'm here in the hospital. I'm always asking for practical stuff. More bandages, extra socks, whatever. On a whim, I told him what I REALLY needed was a big, fat teddy bear. I just want something to hug when he's not here.

 
How cute is he?? The bear too, of course. I named him Charlie Brown.

It turns out my PEG just needed a day to settle in and seal. I haven't had any problem with it leaking since I last blogged. That was a relief. They prescribed me the tummy medicine anyway, just in case. Supposedly it helps your tummy to empty out faster. I just started taking it on Monday and I've had some nausea since then. I'm going to stop taking it tomorrow and see what happens. Hopefully it's what's causing the nausea and it stops.

There's been a lot of different conversations about my death. Which makes sense since it's fairly imminent. So here's a review of things that have been talked about:

I had a convo with Sam about arrangements. I don't want anything religious going on but I think it would be nice to have some sort of gathering for people to come and admire my pretty urn before I get strewn someplace. I still haven't figured out where I want to be dumped. I might let baby doll choose for me. Meanwhile Sam said that she set up a meeting with a lawyer to discuss some details. I'm her practice run for being the executor of an estate. I feel bad that she's spending money on me before I've even kicked it though so a check will be in the mail tomorrow when I get out of this place to help her cover any weirdo expenses that she incurs.

Meanwhile I talked to baby doll today. We're going to go to Pottery Barn and pick out the urn that I want my ashes to be put in. I asked him if legally it needs to be hermetically sealable or something. He said he doesn't think so. I might stop at a funeral parlor and ask some questions when I get back from the cruise. Seems like there should be some health regulations involved with ashes. Same thing with spreading them someplace. Of course if you don't tell anyone you're spreading ashes, then it doesn't really matter. Maybe baby doll will save my ashes for a bit and then when he goes on his next cruise, he'll discreetly spread me on a tropical beach. How cool would that be??

Dr, Kim is still campaigning for me to continue the chemo treatments. Every time he sees me he verifies that I don't want to start them up again. He told me that the tumor on my neck is totally gone. He said it shriveled up and scabbed right over. He's very proud that he chose a treatment that was so very effective. He keeps bringing it up again and again. He really wants me to agree to continue that treatment once a month to prolong things. I think he's nuts. I was absolutely miserable with nausea for over two weeks after that first (and last) treatment. He made sure when he was in here today that he mentioned to Scott how successful the treatment was. I think he's hoping that Scott will convince me to continue on with those treatments. Little does he know that Scott was there for all of the after effects and totally agrees that that level of misery was intolerable.

Dr. Rob (the shrink/palliative care doc) stopped in to see us last night. It was THE best conversation that Scott and I have had with a doctor yet. He told us all about Hospice and about the different paths that are available to me as I move towards the end. I've heard of Hospice, I knew it had to do with people who are dying, but other than that, I didn't really know anything about it. Now I'm informed and I am muchly relieved. I've been wondering how things come to an end, now I know what the choices are and how things are handled. He then sent a Hospice rep,  Marcia, to talk to Scott and I today and she filled us in even further. Then Dr. Rob stopped back again this afternoon and he has agreed to be my palliative care doctor. It's like a 3 ton weight was lifted from my shoulders. So I really want to start out with the in home Hospice care but the caveat to that is that someone has to be with me 24/7. Obviously baby doll works so he can't be my only "person". I'm going to talk to Jamie to see if he wants to up his move in date by a month or two. Scott and I will be moving our bedroom to the main floor to make things easier on me. That gives Jamie the entire upstairs just like the first time he lived with me. I just gotta sweet talk him into it. Of course even if he can work from home for the next two months, having two "people" might not be enough. I might have to call in some friends to come spend a few nights with me here or there to make it work. If I can't make this work then I'm going to have to be put in a Comfort Care home. Which would be a bummer but I want to die as painlessly as possible so I'll do whatever it takes.  I guess there's one or two large Comfort Care facilities here in Rochester. One of them with 14 beds, I remember Marcia saying. There's also (9) private homes run by volunteers that have two beds each in them for people who are dying. On top of that I guess some nursing homes also sometimes have a Comfort Care section. So, lots of options other than staying in my own home. 

Dr. Rob and I also discussed the other aspects of dying. He asked me if I had any fears about dying. I told him the dead part is fine, it's the mechanics that are niggling at me. Am I going to suddenly just start choking on my own blood and drown? Will I wake up in the middle of the night to find a tumor cropped up and blocked off my airway and I slowly suffocate to death? Is the cancer going to creep up to my brain and simply start shutting down the areas that keep my organs working? Dr. Rob said those are all good questions and definite possibilities. But, he said luckily, there's lots of drugs out there. He said if I choose, when things start getting really bad, they can simply keep me largely sedated until I pass. He said not unconscious, there are laws and things that they have to follow but they can certainly make sure that I don't go out in a flame of pain and agony. He also said that if I want to end things on my own terms, some patients choose to stop taking "life supporting measures". Which translates into the fact that they starve themselves to death. Again, he said they can keep me medicated throughout whatever path I choose to take with the last days of my life. That whole conversation was such a relief. I'm madly in love with that man. He's the one that keeps complimenting my "speaking" skills. He calls me a poet. It's funny because his counterpart, I think her name was Barb, said just about the same thing. She said that I am so articulate when I speak that it blows her away. And she had only talked to me twice but she sat there and said that she can tell that I'm a 'fixer' and that I like to take control of situations. That I don't play games and I'm not a drama queen. I like to cut to the chase and just get the job done. I was kind of blown away that she knew all that about me after only two brief convos. Maybe baby doll was talking to her and giving her the low down when I wasn't looking. Either that or she's a seriously stellar shrink!

Another part of the convo I had with Dr. Rob about my death dealt with regrets. He asked if I had a lot of nightmares. If there was anything unresolved in my life. Stuff like that. Other than those night terrors when I ran out of the anti-depressant, I rarely have bad dreams. I can't even tell you when the last time was that I had a bad dream. And no, I don't feel I have anything unresolved or anything to regret. As my FaceBook friends know, every couple of months I would simply post a status that would say "My life rocks!". Because really, my life truly has rocked. I've made some wonderful, loving friends over the years, accomplished a lot of what I wanted to, finally met a man worthy of giving my entire heart to. I knew if I looked hard enough and long enough that he was out there. I just wish it hadn't taken so gosh darned long to find him.

The last part of my convo with Dr. Rob was about what comes next. He told me that he would love to put me in touch with some of the chaplains that he's friends with. He said they range in age from 30 to 80+, and their beliefs range from atheism to Buddhism, to Catholicism, to whatever. He asked me if I had any thoughts about what came next. I think it would be cool if you ended up in a man-cave on a big, comfy couch with an 60" flat screen and surround sound where you could view your entire life minute by minute. See how things really were, how you changed, what you did right, what you did wrong. There should be plenty of popcorn and hot cocoa available for this viewing too. Or even better, an artisan cheese tray with some exotic fruits and breads and chocolates and some good quality wines to choose from. Or maybe you end up in a pod and you get to pick what you get reincarnated as. And it doesn't even have to be something alive. You can be reincarnated as a really nice wooden rocking chair if that's what your heart so desired. Or maybe you get dumped into the middle of an ice hockey game at whatever age you were in the best shape of your life. Fun! 

I had one of the shoemaker's elves visit my house recently. They did all sorts of chores around the house much to my delight. My gutters are cleaned, all of my edging is done, and the platform for my garden was built. Turns out baby doll and I were short one board for the decking. Gotta go back and buy one more to finish it. Meanwhile, instead of buying assorted pots and things, I decided to build some wooden steps to use as planters, and yes, I built those all by myself. It all still needs to be painted but here's what it looks like so far.

Okay, I think that's it for the night. I need to go finish my pedicure and then get some sleep. Big day tomorrow!

May 7

Rough week. 

I went back to the hospital on Wednesday to let them hydrate me again. They don't just give me fluid, they add electrolytes and stuff to it as well. Whatever my body happens to be running low on due to the Cisplatin (chemo drug). Usually potassium, magnesium, and sodium. They also give me an extra strong dose of anti-nausea meds, sometimes they give me steroids. Whatever my body tells them I need based on the gallons of blood they take out of me every week. When they hydrated me on what I and Dr. Kim refer to as Meltdown Monday, I felt loads better afterwards so I was very agreeable about popping in and doing it again on Wednesday. Unfortunately, it didn't seem to have any effect on me on Wednesday other than making me have to go to the bathroom every 30 minutes all day long. Bleah. Meanwhile the non-stop nausea from the chemo treatment was continuing on.

On Thursday my TEP fell out so I contacted Jo Ann and I went and saw Dr. Miller about it right away. I was surprised that I didn't have saliva running down the inside of my stoma and choking me, which was their concern too and why they got me in so quickly. It turns out that the puncture for the TEP had closed up on the other side so it was sitting in a dead end cavity. This was good news because it meant I didn't have to get the TEP reinserted to plug the hole and stop saliva. On the flip side of the coin though, I'm pretty sure that would be the reason the TEP stopped working thus not allowing me to "speak". You need some kind of air flow to produce noise with a TEP and it wasn't getting it. Sheesh.

Thursday night baby doll and I went over to his brother's house. I had a revision of my will witnessed and notarized. So that is once again set.

Friday I let them hydrate me one last time. Once again, I didn't feel any better or worse due to it so I decided I'm done with those. Going to the hospital for 4 hours every other day just to get fluids in you is kind of ridiculous.

Friday night I had tickets to the Odd Couple at GEVA. It was a really good show! I managed to stay awake through at least half of it. Okay, okay, some of it anyway. I enjoyed what I saw. Baby doll said it was good. :-)

That night I was up every single hour using the facilities again due to the hydration. So, I had no sleep. Plus, since that 4 day chemo pack, my body has been doing weird things and I was still trying to get a handle on what was going on and how to deal with stuff. Needless to say, we were supposed to take off for Atlantic City on Saturday morning and it didn't happen. I had another mini meltdown. I told baby doll that I simply wasn't feeling well (I had started running a low grade fever the night before) and that instead of being excited to go on our trip, I was this little ball of dread. I didn't want to be in some strange place trying to figure out what was going on with my body. And no matter how well I pack, there is so much involved in my care now that I know I would miss something. Being the incredibly fantastic man that he is, he had no problem canceling the trip. The tickets to the Wayne Brady show were not refundable. We e-mailed them to my friend T who was also going to be there that weekend but I'm not sure if she ended up getting to use them or not. Baby doll is working on trying to get at least a partial refund for the hotel room.

Once my mind was relieved of the stress of the trip, I ended up having a truly great day! When baby doll first got there I was out puttering in the yard. He went and got some gloves and we puttered together for a few hours. He ended up edging the small side garden and the entire front of the house. He did a fantastic job! It looks awesome! Not to mention his labor is free of charge. I had requested a quote from a local company to come do three things in my front yard. 1. Edge all walkways and flower beds. 2. Fix the torn up sod from the snow plow. 3. Power rake. The quote came back at $550. Yeah, I don't think so, thanks anyway. While he was edging I dismantled my little stone walkway, pulled up every weed in sight. Got smart and laid down a weed barrier this year, then had baby doll come over and "build" the stone walkway again. It looks fantastic!

Next on the list was a little retail therapy. We went to the pet store and stocked up on dog food and flea drops. Then we stopped off at Clover Furniture because I've been wanting a patio set. Nice stuff but when I think of a patio table and chairs, I DON'T think of price tags ranging from $1200 and higher. Holy cow! Then we buzzed down to Walmart where I stocked up on kitty litter and some other sundry items that I needed. Their patio furniture, at least the price tags, were much more in line with what my brain would have guessed. I found a set that I really liked but when we looked to see if they had it in stock, they had the chairs but not the table. It was one of their "Mix and Match" styles so I can imagine that happens now and then. I wanted to look around a little more anyway before making an actual purchase. Next up was Home Depot where I bought a dishwasher. Baby doll said the experience was a little surreal. I walked in, saw one I liked, bee lined over to it. Did a quick loop to look at the rest. Went back to the first one and said "I'll take it!". So, that will be installed tomorrow afternoon. Thank goodness because I've been having to re-wash about half the dishes by hand that come out of my current dishwasher. That certainly isn't doing me any good! Then it was off to Wegman's to grab the ingredients for baby doll's din-din and home to unload and refuel.

I grilled up a couple of burgers and got my handy little deep fryer out to do up some french fries in the way they were meant to be done. Burgers are one of baby doll's faves. When we go out to eat, if he doesn't order something with a Mexican flair to it then he often orders a burger. Based on this I've collected a number of Mexican recipes over the past year and four months to feed him but for some reason, it never occurred to me to make him a burger. How weird is that? Well, he finally got to eat a Quinny burger. Hell, I finally got to try making a burger. I'm assuming that I've made them before but it's obviously been more than a year and a half since I last made them since he hadn't eaten one. It turns out spraying your grill with a little non-stick spray ahead of time might be a good idea. I had trouble with stickage. Also, I bought a pound of meat and made two burgers out of it. I used the 80% beef so I thought there would be quite a bit of shrinkage. Yeah, no. I think if I had been serving them on a kaiser roll or something a little on the stiff and hearty side, I would have been okay. But I had soft, white floppy burger buns. Personally, I think the burger to bun ratio was way off. Other than that I thought they came out okay. Luckily, baby doll thought they came out fantastic. And he then proceeded to prove that to me by eating both burgers. Yeah, over a pound of beef went into his tummy. I don't know where he puts this stuff half the time!

So we were now refueled and ready to continue our adventures. Baby doll said that Big Lots often has nice furniture at discount prices. We checked it out. I found a table that I fell in love with but I didn't like any of the chairs they had. It went on my list of maybes. Nothing struck me at Lowe's. At this point in time we're on the other side of the city near what most people consider a "nicer" Walmart so we decided to pop in there to buy the set that I had liked at MY Walmart. Yeah, didn't happen. They didn't carry that set. WTH?? Now I'm getting tired, I'm starting to feel sick again, my low grade fever came back and all I want out of life is to buy a damn patio set. It was at this point in time that I realized that I had not been nauseous all day long. It was the first time since the damn chemo treatment that I did not have nausea going on. I did a little dance. Anyway, while at this bullshit Walmart, I DID find chairs that I liked. So we decided to buy chairs and cushions at Walmart and go back to Big Lots for the table I had fallen in love with. The chairs were marked with "rollback" pricing. They ended up being $15 a piece. CHEAP! The cushions were another story. Almost. I picked out the cushion that I liked and of course, that's the one cushion where there's not a price in sight. I checked all of the shelf tags and the only one that I could find that seemed to match said they were $38 a piece. OUCH! But. I liked them. Thankfully, when we got to the register, they rang up for $18 each. That was much more in line with what I wanted. On top of that, I was looking at the receipt as we were loading up the car and for some reason the cashier had discounted one of the cushions back off of the receipt. Happy birthday to me.

Back at Big Lots we measured the table. Turns out it would fit in the back seat but not the trunk. The chairs were already taking up the backseat. It is now 8:20. They close at 9:00 and as mentioned previously, we're kind of on the other side of the city. Can we do it? Can we make it in time??

Why yes, yes we did. Ladies and gentlemen, I would like to introduce you to my new patio set:

I

Isn't it pretty? In the sunlight the next day it turns out the table is more orange with gold/mustard mottling than red. I kind of wish I had gotten the gold/mustard chairs instead of the red ones. Baby doll disagrees. He thinks it "pops". He's been watching way too much HGTV with me. LOL!

One of the things we were going to do in Atlantic City was go to the arcade on the steel pier and play games and win prizes. I decided that just because we stayed at home doesn't mean I shouldn't get prizes anyway. So there's a crane machine in the lobby of Walmart. It only took baby doll three tries to win me Lucky Sunrise. How bleeping cute is he??

So it was a big day on Saturday even without taking our trip. We finally fell into bed. Forty five minutes later I woke up not being able to breathe. Scary shit. I went into the downstairs bathroom and started an unbelievable coughing fit. I coughed so hard I threw up. And the gunk coming out of my lungs was simply never ending. It was ridiculous. This happened off and on all night. I ended up staying down on the couch so as not to disturb baby doll. By Sunday morning I had thrown up twice and a few times I was coughing so hard I started passing out. I felt like my own lungs were trying to drown me with phlegm!

Sunday sucked. I felt like death. I couldn't breathe. As the day progressed though I started feeling a bit better so I decided to have baby doll take me to the Garden Factory so that we could start figuring out the plan for my vegetable garden. 

I should add here that a decision has been made to change the scope of the garden project. The large, elevated, horseshoe shaped garden I had planned was likely going to be a permanent fixture and since I'm only going to be around to use it this one summer, it didn't really make sense. Jamie sure as hell isn't going to want to mess with that thing in the backyard. So I decided I wanted to do something smaller and that could be taken down at the end of the summer. The new plan is to first, build a platform to cover the unsightly concrete slab in the backyard. When I first moved in there was half of a brick oven built up on this thing. I dismantled and ditched the brick oven but have been unsuccessful in removing the slab it was on. My friend Luke came over with a sledge hammer a few years ago to try and break it up. Turns out I will need a professional for removal and I have yet to find one. The dimensions are 60" x 30":

Since I can't seem to locate anyone to remove this thing, I figured the next best thing would be to cover it up. So we're going to build a platform to place over it. I am then going to buy an assortment of cool and classy containers to plant some select veggies in and will decorate the platform with them. That way at the end of the season Jamie can simply dump the containers and store them in the garage to be used at a future date or not. Totally his call. 

The Garden Factory was fun but honestly, I like the selection of garden stuff at my Walmart better. Then it was off to Home Depot to figure out what we needed for our platform. After poking around by ourselves for a bit I decided that we needed the advice of a professional. We described what we were looking to do to some hot, young kid that was working back in the lumber department. He walked us through the entire project and took us around the store to buy everything we needed. Including a circular saw! So I now have a pile of lumber in the family room awaiting assembly.

As night came I started to feel worse again. This made me wonder if the problem was related to my allergic asthma at all. I used to have asthma attacks during May and June at night if I slept with the windows open and it was damp out. I have not had an actual asthma attack since like 1997 though so it was a stretch trying to link the two things.

So, no sleep that night either.

Which, by the way, it turns out if you get sleep deprived enough you start.....hallucinating? Sleep walking? I'm not sure what the hell happened. All I know is that I was at the counter crushing up some Excedrin. I closed my eyes for a second and Chelsea Handler told me that I should crush and take (8) Excedrin instead of just (4). She told me to go ahead and be a rebel. When I opened my eyes I was bringing the hammer down on a baggie that had (8) Excedrin in it. GAH! I hurried up and took four pills back out. The next time I closed my eyes she was laughing at me. She told me that the next time I saw Jose that I needed to tell him that he smelled like jaguar urine and run away from him. 

Huh?

Yeah, I need to get more sleep. 

Anyway, another night hacking my lungs out, waking up every 45 minutes. It was truly awful. Come Monday morning I had had enough. I asked baby doll to call Nurse Mary, let her know what was going on, and ask her if I should come in. 11:00 saw us at the Emergency Room with me being admitted for the night. <sigh>

According to the exrays they took, there's a new large spot of opacity? in my left lung that wasn't there just a week or two ago. Unfortunately they can't tell what it is. It's either the tumors spreading far and fast or it's pneumonia. They decided it's pneumonia and started running IV antibiotics through me. They once again had to pump me full of all sorts of electrolytes. Turns out there was some new stuff that came back at lower levels than it should so they replenished a whole bunch of stuff. On top of that, the nurse administrator said that I was "over watered". I didn't even know that could happen! She said I needed to cut back on drinking water. Dear lord, there's just always something new to learn.

So I spent the night in the hospital. My breathing was much improved and I finally got a little actual sleep. I found out the next morning, as luck would have it, my doctor, Dr. Kim, just got pulled in for floor duty in the cancer ward for the next two weeks. Talk about convenient! So he and his team stopped in to see me Tuesday morning. On a side note, I have no idea what ward I was in when I had my surgeries back in August and September but this time I was in the actual cancer ward and it's gorgeous! Baby doll thinks my hospital room was even nicer than the room he had booked for us in Atlantic City! You could easily fit three hospital beds into those rooms but every room in that ward is private. How nice is that?? Okay, back on track. Dr. Kim wanted me to stay another night. I said no effing way. We argued for a bit. I tried to explain to him that when you only have ~90 days left to your life, the last thing you want to do is spend them in the hospital. He argued back that we needed to make sure the antibiotics were going to fix things and if not, we needed to try something else. I argued, he argued, I eventually won. 

My floor nurse, Samantha, told me afterwards that she eavesdropped on the team when they were in the hall discussing my case afterwards. I guess the nurse administrator was pissed that the doc was going to let me go home after just one night. She felt that it had been a huge waste of their time doing all those labs and bloodwork if I was just going to throw it all out the window by walking out of there. She was coming down on Dr. Kim pretty hard I guess. He finally told her that I had been his patient for many months, that he and I understood each other, and that he respects that I am responsible enough to bring myself back to the hospital if things seem to go downhill again, and that she just needed to accept the fact that that was our decision as doctor and patient. Yay Dr. Kim! He so rocks!

So Monday night in the hospital I kept feeling like I had stuff in my lungs but coughing was making absolutely nothing move. Meanwhile my breath was getting more and more shallow and I was sounding like Darth Vader. I kind of felt like I was dried out but the previous two nights I felt like I was drowning so it seemed weird that I would totally swing the other way in one day flat. I waited until baby doll got back from checking on the furballs and eating some dinner. I then tried dumping some saline bullets into my stoma and hoped I wasn't about to really drown myself. Well, it took four whole saline bullets but gunk finally loosened up and I was able to hack up all sorts of phlegm plugs that were blocking my breathing. I was like WTF? At home I'm too wet, at the hospital I'm too dry. What's going on with my body??

So they sprung me yesterday afternoon and sent me home on antibiotics. My fever is gone and has stayed gone but my breathing woes continue. Last night I started having trouble again but now I know what to do, right? So I dumped in some saline, hacked up a bunch of shit and was good to go. Actually managed to get a few hours of sleep last night even. 

Today Sammy drove out from Liverpool to see me. She was kind enough to make a few phone calls for me to deal with the morons that seem to be a permanent part of my life. She got one set taken care of. The other set she will be working on first thing in the morning. For lunch I made her chicken and cheese quesadillas. I put the plate in front of her and she was like wow, I probably won't be able to finish this. Not too long later I look over and the second half of the quesadilla has just about disappeared. She was like OH! I swore I wasn't going to be able to eat it all but it was SO good I couldn't stop! This made me huff. It's pretty much word for word what Scott says about every other meal that I make for him. LOL! Maybe I should have him copy his P90X DVDs for her so that she doesn't start getting his shape as well as his appetite!

And Ethan was his usual friendly self. Sam sat down at the kitchen table and he was immediately in her lap, flopping over and simply lounging on her. She was like WTH? She said Does he even know that I don't like cats?? I told her that he really doesn't care. He kept following her around the house and talking to her. Which she encouraged because she kept talking back to him! Then she was grumbling at me that she had better not make it halfway home and find a stowaway. Then as she was leaving she asked if I had put her cat in her car for her. Ha! Baby doll would kill me if I gave away his mid-life crisis child. That cat really is something else. 

Sammy also took me to my PEG appointment. I was so excited to finally be getting it replaced. Every time I syringe food into it, it immediately starts leaking back out. But not leaking out of the PEG, leaking out of the hole that the PEG sits in. Which effing hurts. Unfortunately the new PEG has not fixed this problem. It's still happening. Lilo thought it might be happening because the balloon in my old PEG was down to holding only 4 cc's of water. They recommend 5-10 cc's. She always puts in 8 cc's. She said the fuller balloon creates a seal that plugs the hole for the PEG so she was hoping the new PEG with the nice full balloon would stop it from happening. She even put 9 cc's in instead of 8 cc's. Well, that didn't work. When she took the old PEG out and went to put the new PEG in, a whole bunch of liquid started coming out. She asked me if I had eaten anything in the last 4 hours. I told her I hadn't eaten since the night before! She said that might also be the problem. For some reason my stomach is suddenly not digesting my food very quickly so it's building up pressure from the food sitting in it. Too much pressure for the balloon to be able to keep the food in my tummy. She said there are meds we can try to fix this. She told me to let her know how things progress so I will be sending her an e-mail tonight to let her know there is still a problem.

Other than that, Sammy and I gabbed about a bunch of my end of life stuff. She hates talking about it but once I'm gone it will be too late to ask me so she's trying to boot and rally since she's the one of the mighty trio who is truly in charge of all my crap.

As the day progressed, I was having a harder and harder time breathing. When we were making our way back to her vehicle after the PEG appointment I had to stop and wait a few seconds to catch my breath before I could make it all the way to the car. She left about 45 minutes after we got back home at which point I decided that I needed to do a cleanout with saline bullets again even though I had done one in the morning. Well, it didn't help. Now what? I thought I had found the new fix for when things were getting bad. So I decided that maybe I needed to start wearing the humidifier mask again. I brought the machine down from the bedroom, got it cleaned/filled up, curled up on the chaise, and put it on. 45 minutes later baby doll came home from work and woke me up. I couldn't breathe at all! I went back in the bathroom, did more saline squirts. Nothing. And I dry hacked, and I dry hacked, and I dry hacked. Hopefully heart problems don't run in my family because my heart gets beating so fast during these coughing fits, it's downright scary! So I'm in the bathroom, sitting on the edge of the tub, crying my eyes out, and wondering what my next steps were. The only thing that came to mind was having baby doll take me to emergency again so they could put me on an oxygen machine or something. Then I decide to try one more thing. The suction machine they sent me home with has no power to it whatsoever. But ramming a twelve inch catheter down into your lungs has to do something doesn't it? Provide some kind of info on what could be preventing you from breathing.

OH MY GOD.

Best idea ever. 

I used one of the stiffer white plastic catheters and rammed that baby as deep as I could and then just started reaming things out like a rusty pipe. Well. That finally did the trick as far as breaking up the rock-like phlegm plugs that were gumming up my works. I started hacking up hunks of hardened gunk like you wouldn't believe. It was a beautiful sight to behold. Then as an added bonus, once all of the hardened crap was up, I started hacking up a gallon of liquid phlegm that was being blocked by all the hardened stuff. I spent a good 10-15 minutes simply coughing my lungs out. When I finally finished I went upstairs and did a happy dance for baby doll. For the first time since this morning I could once again breathe.

So now I have a new regimen for keeping my lungs clear. I hope this one lasts longer than 2 days! I just want to find my groove again and fall back into it already.

And now I'm heading to bed. I started this blog at like 8:00 this morning. What? I had a lot of stuff to catch you peeps up on! And tonight I've fallen asleep about 3 times while trying to finish it up. I haven't had a lot of happy thoughts lately so I decided to try and find one. Cuz I know there has to be at least one. And there is. Whenever I think of cancer I think of rapid weight loss and hair loss. I would like to say that my hair has faired pretty damn well through this whole ordeal. Here's' a selfie I took today to show you. :-)

May 1

Back on Monday, in response to my complaint about not being able to sleep, Mary once again prescribed me my best friend, Ativan. Since it's an anti-anxiety med, she thought it would be the best bet to help me with the muscle thing I was describing when I try to go to sleep.


I tried picking up the Ativan on Monday but forgot about the necessary pre-authorization for my scripts that is now needed by Medicaid. Mary had convinced me to come back Wednesday for another hydration session so I figured I would just grab the Ativan then.

Monday night around 8:00 PM the dry heaving started back up again. I sent Mary a note letting her know, just to keep her in the loop. Here's our correspondence for your viewing pleasure with her partner in crime, Deb, thrown into the loop too. Easier for me to copy and paste my week than try to sum it up. Just call me lazy girl. :-)


Hi Mary,

You would think with all that we pumped into me today that I would be good to go but I started dry heaving again about an hour ago. That Cisplatin is nasty stuff! I'll try to ride it out without any more meltdowns like today. Dr. Kim has high hopes that I'll be up to snuff by Wednesday.

I went to pick up the Atavan after I saw you. Forgot about Medicaid needing pre-authorizations on scripts. I'm going to pick it up when I'm there on Wednesday instead. I might try extra morphine right before bed tonight to see if that helps in the sleep department at all.

Thanks for being there for me today. < hug>

Cathy
________________

Good morning Cathy,

I am sorry to hear that "it" started back up again.
I think its very important to use the compazine and the ondansetron alternately.
I also think that the ativan will help A LOT!!
Is there someone that can pick this up for you????
Using the ativan for nausea control is very effective especially with the delayed nausea which happens with cisplatin.
Yes, it does have a sedative effect, but I think that sleeping is better than vomiting.
Please let me know how you are today.

Mary
_________________



Hi Mary,

I used the last of the zofran last night. I took the compazine this morning though. I don't feel like the nausea meds are effective at all but I'll keep taking the compazine every 6 hours anyway. Better safe than sorry.

I don't know what to say about the Ativan. I wish we had thought of it sooner. I'd try to go get it today but I realized part way through my drive to the hospital yesterday that driving is not a good idea for me until this nausea goes away. I'm hoping I'm okay for the 11:00 tomorrow morning! Even more importantly, Scott's teenage daughter has art being highlighted in an art show tomorrow night that she wants me to attend. And I paid $60 for unlimited tanning for the month and haven't been able to go for a week now. I look like a ghost in my two new tankinis that arrived yesterday! UGH! :-)

Okay, me and my nausea are headed back to the couch for the day. Taking it one day at a time..........

Cathy
_________________


Cathy,

I think that driving is not a good option.
Is there someone on your list of friends and family that can bring you tomorrow?
As far as managing the nausea today: please refill the ondansetron and have someone pick up the ativan.
I think the ativan will make a big difference on how you feel from today to tomorrow.
Continue to push the fluids; if you think that you are taking a step back from yesterday, please have one of your reliable circle of friends and family call the triage line so that we can give you IV fluids.
Do you want to come in today?

Mary
_________________


Hi Mary,

I could find a ride for tomorrow but Dr. Kim said by tomorrow I should start to be feeling good. I'm kind of holding him to that. Especially since he said yesterday (day 8) is the worst day of treatment and I found that to be truer than true.

Okay, not to be a pain but, the ativan thing isn't making logical sense to me. You didn't even think to prescribe it until I mentioned my trouble sleeping but now it's going to cure everything? That just doesn't add up in the sequencing of my brain.

No, no need to come in today as far as I can tell. Thankfully, I'm not dry heaving today. Just nauseous when I start moving around too much. I think doing tomorrow, what we did yesterday, is the best plan of action. You have my full buy-in for it.

Have a good rest of the day, just don't look out the window, Mother Nature seems to be really working on May flowers today. ;-P

Cathy
_________________

Hi Mary,

I felt like I should check in for the day. The hydration treatment today didn't make me feel nearly as better as it did on Monday. It is 9:00 PM on Wedneday night and I am once again severely nauseous. I took the ativan at 6:00 PM. Not because I was feeling sick but because it had been ~6 hours and I wanted to stay on top of it, if it was helping. Now it's been 3 hours and I'm sick again so I would assume it's not helping. One of the nurses mentioned something called Marinol. She said I might want to ask if I can try it. Another nurse mentioned some kind of patch that you put below your ear that she heard can help with this type of nausea. I'm ready to try anything. I'm supposed to be driving to Atlantic City on Saturday morning and it's not looking good right now. :-(

Cathy
_________________

Cathy - I think you need to come in again today for more fluids and anti nausea meds. Marinol is mostly used for an appetite stimulant. I want to continue with with the Ativan, but I think we should try another med today with the fluids to see if that works better. I have made an Infusion appt for you at 2:30 and I will come back and see you there! If we need to bring you in for fluids for a few days to get you feeling better - that's what we will do! Please let me know that you got this message. Thanks.

Deb Paul NP

_________________

Hi Deb,
1. I'm feeling incrementally better today. I've had a few waves of nausea but they have come and gone and I ate an entire blender of orange juice smoothie this morning so I think we're on the upswing.
2. I have bigger problems to deal with today than nausea. My TEP fell out. I'm seeing Dr. Miller at 2:40 today to see what can be done about it. If it's not one thing, it's another. I still plan on seeing you tomorrow though!

Cathy
 _________________

Hi Cathy,

I am glad that you have the appointment with Dr. Miller and feeling incrementally better.
We do have the infusion slot and a couple of your electrolytes are low: your magnesium and potassium.
Spoke with Deb and we are encouraging you to keep the infusion appointment today and in addition keep your appointment tomorrow for hydration. Our goal is to get you feeling better and better! We will work around Dr. Miller's schedule.
Thanks~

Mary
Let us know
 _________________

Cathy! Glad that you are feeling better and glad that you will be seen today by Dr. Miller. We will plan on seeing you tomorrow for fluids and some electrolytes (potassium and magnesium low). If you change your mind about today - please let us know - your appt is at 2:30 - let me know one way or another so I can either cancel or keep that appt. Thanks so much! 

Deb
_________________

Hi Deb,

I'm torn about the Dr. Miller appointment. I'm freaking out that my TEP fell out and glad he can see me so quick to find a solution but man, it's gorgeous out today, who the heck wants to be stuck in a gloomy hospital?? That being said, no, I'm not getting fluids today. :-)

I'll see you at 10:30 tomorrow!

Cathy
_________________

So, I did NOT get fluids today. I had a conversation with Mary a few weeks back that my new goal in life is to spend as little time at Strong Hospital as physically possible. I have cancer. I'm dying. I'll likely be dead before the end of the summer. Who the hell wants to spend their last remaining days getting hydration treatments on a daily basis?? I said I was actually feeling better today. That's great that she claims she wants to help me feel better and better but I don't think she's a big picture type of girl. Plus, I had already agreed to have one more hydration session done on Wed and then also agreed to have one tomorrow which is yet another "extra" two days in the hospital that was unplanned for. You give people an inch, they want to take a mile!

Anyway, I popped in to see Dr. Miller today about my TEP flying out of my throat. I told him I was surprised that I'm not choking on spit now that the TEP is no longer plugging the huge hole that leads to my mouth inside of my stoma. He took a scope and checked things out. For once, there was good news. It turns out whatever little pocket of flesh they had tapped into to insert the TEP had healed into a dead end so there's nothing to leak. Yay! That means I can just leave the TEP out and get on with things. Of course this also kind of irritated me because it would also explain why my TEP stopped working and I never managed to "speak". But whatever, it's all moot (mute) (Ha!) now.

Last night baby doll got home from Jessica's art show, which I was unable to attend because I was feeling so lowly still, and I was crying my eyes out. He held me for a while until I was sniffled out and then listened to me gripe. I told him that according to the internet, the severe nausea shouldn't last more than a week and I was on like day 9 and was still dry heaving like crazy and what the hell was wrong with me that I wasn't getting better?!? He was like whoa, whoa, whoa. What do you mean day 9? You just had the treatment end on Saturday. Today is Wednesday. You're on day 4.

Oh. Right. Why am I counting from when treatment started? Well, talk about a hefty dose of perspective. It didn't make the dry heaving stop but mentally, I think baby doll just about cured me! 

So that's been my week. Other sundry stuff: one of the secondary chemo drugs I was given caused a rash to break out on my face. Dr. Kim had warned me that they would look like zits and I'd be revisiting my teenage years. Although he said they were definitely not zits. Well, he was right. The blisters came up within a day, they're all over my face and head and what he failed to mention is that they HURT. They're all over my scalp so brushing my hair is SO not fun. Grrrrr. Did I mention I have a new rash around my feeding tube too? Yep. Itches like crazy but if I barely touch it, it starts bleeding all over the place. I have two e-mails in to LiLo. I need to get the darned thing replaced before the cruise anyway. She hasn't read either of my e-mails yet though. I might need baby doll to call her office tomorrow and find out what's going on. She might be on vacay. 

<sigh> I think that about wraps up the health crap for now. 

Today, I'm going to leave you with a crazy cat lady story.

I like kids. I did not have kids. There are about 3,608 reasons I did not procreate in this lifetime but that's another story (or two). One of the things I have always envied moms is the way that kids simply know that mom will make it better. A kid falls down and skins their knee. They don't want dad, they don't want the babysitter, they don't want the teacher, or a doctor, or a fireman.....they want mom. Period. And it always warms my heart to see a kid fall on their butt, start to cry, and run to their mom, throwing themselves into her arms wholeheartedly. And I've always wondered how good that must feel. Well, I would like to announce that I got to find out. And the actual moms out there will probably pooh-pooh me but I don't care.

I came home the other day, threw open the back door to let the dogs out and continued on to the kitchen. Within seconds I heard a cat screaming. Yes, screaming. Gave me a heart attack. I went flying through the family room and out the back door. Somehow, Ethan had tried to jump the fence in the back of the yard and got his leg stuck at what I can only assume was a very painful angle. As I'm running across the back yard to save him, some strange guy doing yardwork at his mom's house walked over to try to get Ethan unstuck at which point Ethan panicked and immediately got himself unstuck. He leapt off that fence came belting over to me as fast as he could and literally jumped into my arms. It felt so good. I am his mom. I am there to save him, protect him, and kiss whatever boo-boos he has. As it turns out, he was fine. Not a scratch on him. No limp. I'm still not sure exactly what happened but I glow with the knowledge that he sees me as his Mom, the cure all for everything, the safe haven in the storm. :-)

April 28

Well, mark down another no good, very bad, truly awful day in the book of Q. I thought I had started to feel better last night but felt worse again this morning. Non-stop dry heaving is seriously not fun. On top of that my stoma seems to be kind of slimy and it looks like it's enlarging. Kind of like someone  poured acid into it and the skin is melting, sloughing off in hunks. A very disturbing effect, let me tell you.

I still can't sleep either. I lay down, I think I fall asleep, but 20 minutes later I find myself staring at the clock thinking crap, only 20 minutes has gone by. And my whole body has tightened up like a bow string. I lay there and force myself to relax everything, I sink down into the mattress......20 minutes later I wake up and I'm a pretzel again. This has been going on all week now. No idea what's causing it. 

Sent numerous e-mails to Mary over the weekend about how miserable I was. Made it very clear that I would not be keeping any appointments today. She had a heart attack. She sent the visiting nurse, Erika, over to see me. Erika convinced me to put my big girl pants on and at least go in to get hydrated. She said dehydration could be causing the continued nausea and dry heaving.

Took myself to the hospital. Figured out pretty quickly that I should have called my personal chauffeur today. It was bad. I took it slow and made sure not to kill anyone. 

By the time I got there and got called into a back room I had had enough. I had told Erika earlier that not only was I feeling physically crappy but I wasn't holding up all that well mentally either. Well, I lost it at the hospital. Had myself a little meltdown. Ended up on a gurney with an IV stuck in me. 

Turns out I was NOT dehydrated. Even though I hadn't been eating, I HAD been making sure to drink all weekend long and it turns out I did a good job at it. It was simply the meds that were making me feel so bad. They affect some patients more harshly than others. 

Had a nice long conversation with Dr. Kim while I was laying there. It turns out that even though the average patient survives 10 months on these drugs, he's simply keeping his fingers crossed that he can get me through my cruise, motoring under my own power. Yikes! He said that I had pointed it out myself that the cancer is back to growing on my neck already. It's VERY aggressive. I agreed. He said that on my scan Dr. Miller had noted that you can't really tell if there's a recurrence of cancer in the head and neck or if it's surgical feedback as I had mentioned in a previous blog. Dr. Kim said that in one area you actually can tell that the cancer is back. He said there's a very clear tumor wrapped around the front of the inside of my stoma. Obviously if it gets big enough, it's going to block off my airway pretty darned quick and suffocate my ass. He's hoping that this one blast of Cisplatin was at least enough to shrink the hell out of that tumor for now so that I can go lay on a beach and soak up some sun. He said once I'm back from the cruise, it's just a crapshoot from there on out. I told him that was fine. I revamped my will. I'm happy with what I've accomplished as far as bucket list items. Now it's just a matter of one last visit with peeps I love to say goodbye, where it makes sense, anyway. Phew.

While I was at the hospital today I changed the bandage on my neck and one of the stitches let loose on the Allerderm. Yeah, doesn't look like any healing was going on down there. Still a big gaping wound in my neck. At least it's a healthy looking wound, if that makes any sense. It's not green or gray or black. It's healthy looking pink fleshy stuff. If I just keep it clean and covered for the next couple of months it should be okay. I'm getting cremated anyway so it's not like I have to try and look good for you people! ;-)

The bummer is that my little horde of Easter candy will go uneaten, at least by me. I'll leave it for Jamie to find. It will be a nice treat for him after he runs the Tough Mudder in July. He can put himself in a second candy coma courtesy of an Easter basket from me. Cuz you know, one Easter basket obviously just wasn't enough! LOL!

Allrighty, that's the update. Wanted to share my misery and the new tidbits I gleaned. Crap, I got a note from my Mom this week. She wants the baby scrapbook that she made for me. I have to figure out where I stashed that thing and get it sent off to her...........attic crawl space, cobwebs and all, here I come.........

April 26

My doctors are driving me nuts. The last we spoke I was supposed to go in to see Mary on Monday and start treatment on Tuesday. Well, when I went in on Monday, Dr. Kim was laying in wait for me again. WTH? I guess he gave my situation a lot of thought over the weekend and it really sank in with him that this is it. That I'm not going in for any more surgery or radiation. He's the end of the line for me. That being the case, he decided that he thought we should do something more aggressive than this every 3 week thing that he had planned. I asked him what the point was, we know we can't cure it, we're not going to extend my life any, we're just trying to make things comfortable. He said actually he might be able to extend things. Oh great. Not what I want to hear. I don't think these medical people understand exactly how miserable it is to be sick 24/7 for years on end. And you know it's not getting better, it's just getting worse. Long story short. He changed my treatment plan. I went in and spent a good 8 hours getting stuff dripped into me on Tuesday and then I came home with a chemo pump pack for four days. It was just finally removed at 2:30 this afternoon. Worst four days of my life in quite some time. We will not be continuing on with this treatment. I'm still sick as a dog. Every time I start moving too much I start dry heaving. I've only eaten four cans of Jevity in the past four days. I've been trying to continue to syringe fluids as much as possible though. It's been seriously miserable though and this is not what I would call enhancing the quality of my life. So, back to the drawing board. Meanwhile, he said that studies show that patients on that specific medicine regime usually survive around 10 months. And it was really aggressive! So it sounds like if we switch back over to the every 3 week treatment plan, I'm likely to have quite a bit less than 10 months. So long as I have some energy and health for the cruise in a couple of weeks, I won't ask for much more than that.

That's about all I have to say on the cancer front. I'm in the process of doing what I call my swan song. My one last time for a bunch of things in life. Here's what I accomplished this week:

This past Wednesday I was still feeling okay, even with the chemo pack so I went to Stephanie and Tony's house. I made them a nice steak dinner to enjoy as a couple while I played with their daughter Addison (3yrs old? 4 yrs. old? I'm so bad with ages!) for a few hours in her room. I had an absolute blast! I had bought her some board games. Candyland, match game, etc. but she's still a little young. We ended up playing dolls and ponies and other fun stuff. She was trying really hard to grasp the concept of me not being able to talk and what was going on with my neck. At one point I needed a drink so she came out into the kitchen with me and watched me syringe some Gatorade  which she observed very carefully. A little later on we were in the bedroom and I went to grab a tissue from my purse. She said "Oh, do you need that to cover the hole in your neck?". I looked at her, held the tissue up, and wiped my nose. She looked at me for a second and then started giggling. Even at that age she realized that she was being way too serious about the whole thing! Ha! Then we were playing horsies and she was telling me that one of the horses was injured so she had to put a splint on the horse. It turns out the horse hurt its neck which is where she had to splint it. Kids are awesome!

Last night the guys came over for one last poker game. It was fun. Unfortunately I was feeling pretty bad by then. I was subdued and things weren't as raunchy/rowdy as they can sometimes be. It couldn't have been that bad though because I actually won. Well, Brian and I won the first game. We didn't play it out because everyone was antsy to get the second game started so we simply split the pot. It meant $40 in my pocket though which rarely happens! Woo hoo!

Although it seems I don't even have to win to get money in my pocket. I always end up finding money thrown around my kitchen after poker games. I should have collected $30 for pizza and beer but I think I somehow ended up with $60! It's like the money mutates and multiplies as it sits on the kitchen counter somehow.

Speaking of money, I received a letter from the insurance company today about my long term disability. I was approved to receive some supplemental income from them on top of the social security disability. Still no sign of payment but I have an official letter saying I should be getting something. I also received a letter from Strong Hospital. They have approved me for 100% Charity Care. I guess that means any copays or other monetary amounts that my insurance didn't cover will be covered by the hospital itself. I thought that was really awesome of them. I was so worried about not being able to pay my mortgage and being booted to the street but it would seem the money thing worked out just fine. I'll be able to continue my lavish lifestyle through to the end. ;-)

Next weekend baby doll and I have tickets to see The Odd Couple at GEVA and then it's off to Atlantic City to walk the boardwalk and experience a well known national destination. I'm still slowly prepping for the cruise. I have a couple of tankinis on order from JC Penney's. My little white Skechers that I ordered arrived yesterday. I wanted a very versatile, very comfortable pair of shoes for the cruise. They are fabulous! Like walking on air and too cute for words. I ordered baby doll a pair of Skecher sandals too. They should be here Monday. So we're slowly getting ready.

I'm off to sit very quietly on the couch without moving too much. Nausea and dry heaving suck.