The Other Expenses of Cancer

26 09 2014

Wedding Photo…as I’m sure other illnesses are, too. We are fortunate to have good insurance, I can’t imagine going through this without it. Before I was diagnosed, I had a great job that I loved.

Unfortunately, my cancer decided to wrap itself around my spinal cord denying me the ability to walk and therefore, the ability to drive…which meant I could no longer work. So even though our medical bills are taken care of, there are other expenses that pop up with the house, the kids or whatever for which we could use help.

If you would like to help out, please use the link below.  Hubs and I love to pay it forward and continue to do so even though I am ill.  Our expectation is to do even more once we kick this evildoer out of my body. :)

http://www.gofundme.com/kindergartencrushllm

 





Fairytale Trumps Fear

24 09 2014

Ever heard the phrase, “you don’t go to the hospital to rest”? So true.  After each hospitalization for chemo, I’m exhausted. As with most hospitals, the only time a patient isn’t poked or prodded is between midnight and 4am.  If they’re lucky, they can sleep. I just remind myself I’ll sleep when I am discharged. LOL

When Discharge Day arrives, I am extremely relieved to be going back to Jenny’s house here in Texas. My back is always quite sore from climbing in and out of the hospital bed and from maneuvering about the hospital room with a walker, IV pole and oxygen line. My back surgery, which was performed in June, still causes some discomfort, understandably. Never one to baby myself, I carry on, hoping to strengthen muscles and to heal my back. Obviously, I am careful. Overdoing it only causes more pain.

Being back at Jenny’s is always a tremendous relief because I know I can relax, rest and recuperate from chemo.  Usually two days after discharge, I have an appointment to have my blood tested and to see my oncologist. I know it’s important but I hate that only two days after discharge, I have to go all the way back to MD Anderson.  It wouldn’t be a big deal if I were able-bodied and didn’t need the extremely uncomfortable wheelchair, or if my back wasn’t so sore, or that I’m so exhausted. With the strength of the chemo I’m receiving, I can guarantee my blood counts are too low and that I’ll need a blood transfusion to be followed with admission to the hospital for the next round of chemo.

This time around, I have extra time before chemo begins. For that, I am extremely grateful. The reaction I had to the high doses of Ifosfamide, one of my chemo meds, scared the hell out of me.  Think about it: when you wake up, unable to communicate with anyone and everything you know is completely opposite of actuality, it is freaky. Very scary. Bizarre-O World.

Monday, I return to MD Anderson for blood tests and a visit with my oncologist. Chemo will start that day, most likely. The plan is that I will still receive the Ifosfamide, but in a much smaller dose. I am supposed to be watched more closely this time, too. While I am relieved by this plan, I am still a bit scared. I need the Ifosfamide, without it, my chances for beating this are significantly diminished.  I need every bit of ammo in the arsenal.  Jenny is planning to stay by my side, too.

I think I’m scared because I really want to obliterate these tumors. I want them to die. I want to hear that we’re on the right track, I want to hear good news. I believe that if I was supposed to die, I would have done so before now.  I just really, really, really want to hear good news. If I were headed into chemo round 2 with good news, it would be a little easier.

Okay, so that’s not how it works.  So I guess I have to keep the faith and hang onto my “happily ever after”, as I call it.  I spent 7 years as a single parent, dating and hating it, before Fred and I realized we had more than a friendship.  The girls and I were thrilled to add Fred to our Girls Only Club and complete our family. My fairy tale had come true.

Two years of that happiness is not enough.  I want a LIFETIME of it.

Huh.

And there it is.

There’s the spark I needed to reignite my positivity.

All right, no more fear. Believe in the fairytale.  Believe it will come true. Believe all will be well.  Just believe.

Keep on praying, my Warrior Peeps/Kindergarten Crushers.  Thank you for your love and support. You’re the best!





Fear

16 09 2014

Fear. I have it. My confidence and faith has really taken a hit after all of the complications I’ve lived through.  I know what you’re thinking: I’ve lived through them.  Most likely, by the Grace of God, I’ve lived through them.

I will try to focus on those words and maybe my confidence and faith will be restored.

Wednesday, I have an MRI to determine if this new treatment is working.  I am so scared to even hope for good news.  The results of the MRI will be discussed with my doc on Friday.  If things are progressing, I may be admitted right after that appointment to start the 2nd treatment.

Slowly, I have grown a bit stronger each day. I wish I had more time in between treatments to build strength. At least I feel more rested…..

That brings up another fear: every time I enter the hospital “strong”, I come home so weak, having to start over again.  Every darned time. Jeez, most foods still don’t taste good and I have to start chemo again soon. That is not a complaint, I’m simply stating the truth.

Maybe it’s because this chemo has been so hard on me. Forget the toxicity, I am just now able to eat without too many foods tasting disgusting or too salty.  I’ve existed mostly on a daily protein smoothie, water/coffee/etc, and dinner.   Not much of an appetite, still a bit nauseous about some foods…probably causing a lack of energy.

I think overall, I really want to hear some good news.  Something has to be positive. Something has to change for the better.  Please God, let there be good news this week. Warrior Peeps, I ask that you pray for good news this week, good news that will turn my positivity back on.  I need it so desperately.

Much love to you all.

 





Knocked Down

5 09 2014

On August 25th, I started a new, in-patient chemo regimen. Three days later, I was in the ICU.  It seemed I had a severe form of toxicity to one of the chemo drugs, Ifosfamide.

All was going well with the chemo infusion, I was tolerating it well.  On the night of the third day, my friend Jenny with whom I am staying in Texas, noticed I was groggy and confused (more than usual LOL). According to the nurses, that could have been a side effect of the chemo, but Jenny wasn’t convinced and stayed late that night.

When she came back the next morning around 10AM, she discovered I had been rushed to the ICU four hours before.  Too much fluid had built up in my lungs causing difficulty breathing and I became cognitively unaware. Sedation was administered because I was fighting the forced oxygen mask. Fortunately, my breathing had improved fairly quickly because if hadn’t and a breathing tube had been needed, the situation could have been more dire. Still, my poor darling husband was on standby, 1,400 miles away worried and ready to jump on the next plane.

It took awhile to figure out the problem. It could have been many things from a blood clot, to disease progression to a problem with the chemo. By evening, the sedation was reduced and while my breathing and lungs had responded well, I did not snap back cognitively. I couldn’t talk. All I remember of this is that I couldn’t communicate, couldn’t say “yes” or “no”, nothing.  Everything I knew and believed was completely backward, and I was hallucinating. Oh yeah, good times. Good times.

Since I didn’t snap back after the sedation was reduced, I was given a dose of methylene blue which helps by coating and protecting the brain.  Chemo was continued in the ICU without the Ifosfamide because if it hadn’t, I would have had to start all over and the docs wanted to make sure I received the full dose.  Me too, after I went through for that first dose! LOL

By my third day in the ICU, I could say “yes” but not “no”. A physical therapist had visited me and when she left, I actually said, “Have a good day.” That was the first full sentence for me in three days.

I left the ICU that day, still experiencing some hallucinations and confusion.  I had been told it could take up to a week after leaving ICU to regain my brain. Thank God I can honestly say, it’s been regained.

Whew.

Damage done to my lungs by radiation reduces the types of chemo I can try and unfortunately, these are the strongest meds with the most complications.  Yay.  I swear, I always have to take the long way around!

Sigh.

Whatever.  Now I just need to work on regaining my strength and getting back to the point I was at before this went down. While I might get knocked down, I always get back up.  So here’s a little video for your enjoyment:

For those who have already helped us out financially through our Go Fund Me page, we are deeply grateful.  While we have raised quite a lot of funds, the need continues as funds deplete.  It sucks to ask for help but Fred and I have always been charitable people and we so look forward to the day we can help others again.  You can also help by sharing your positive words, prayers and successful “I beat cancer” stories, these especially, I need to hear.

As always, thank you, my Warrior Peeps, for watching over us.  We love you all.

20140831_104238 (1)

Yuki the Yeti keeps an eye on me in the hospital

Complication

One of my many war wounds. Wish this showed up better…

 





Funny Tee Day :)

20 08 2014

 

Cancer? Ain’t nobody got time for that!
aint nobody got time for that





Best Laid Plans

19 08 2014

The summer held such great promise. I had great plans for the summer, lots of time with my girls, teaching them all kinds of nerdy things against their wishes, bonfires and s’mores, homemade chocolate chip ice cream, homemade ice cream sandwiches, sunshine and so much more.  School ended and all I could think about was the smell of freshly-cut grass, kids splashing in the pool, and our trip to the Upper Peninsula of Michigan in August.

Do you ever feel like you’re riding a rollercoaster wearing a straightjacket?  Yeah.

That weekend I learned about a new tumor to battle, my oncologist gave us marching orders for MD Anderson and we began our cross-country journey to Texas….where I’ve been….all summer.  I haven’t been back and I don’t know when I’m going back. I’m not complaining. Other than battling cancer, rehabilitating from back surgery and enduring more complications, I feel like I’ve been on vacation all summer long.  Texas is beautiful, the weather is amazing and spending time with friends is fun and therapeutic.  LOL

There’s just one, itty, bitty, teensy, weensy, little problem, well three problems – my sweet hubs and darling daughters are in Michigan.

When it became clear that I wouldn’t make it home before school began, Jenny, Fred and I made plans for one more trip down to Texas so I could spend some time with the girls. Fred took time off from work so he and the girls could spend some good, quality time snuggling with me.  Our plan was, a girl on either side of me, movies, popcorn and just being with each other. Five whole days of nothing but being attached to each other. Evenings were reserved for Mister McGill.

This is the perfect example of how your Go Fund Me dollars have helped us.  (Sniff, sniff! Thank you so much!). Without these donations, there is absolutely no way we could have afforded three round-trip plane tickets from Michigan to Texas.  No way. This mommy needed her kids so much and you made that happen -from the bottom of my heart, I thank you.

So plans were made and the countdown to the visit began!

A few days before my sweeties were to arrive, Jenny and I toodled down to MD Anderson for my regularly scheduled chemo visit.  I had just enough time to receive chemo for a few days, “recover” for a few days, and welcome my loving  family.  Ah, the best laid plans. While waiting for a room to open up, Jenny and I decided to wait at home. When we arrived back at her house, I felt pretty chilled.  I kept adding clothing, a piece at a time. First, a sweatshirt, then socks, then long pants.  Even though I was fine during my preadmittance appointment and my blood draw numbers were strong, somehow I developed a fever.

I tried to grasp at faith and positivity, that I would still have plenty of time to be with Fred and the girls.  Of course, it took awhile for all the docs to figure out where the fever was coming from.  Finally, I was diagnosed with pneumonia.  So I spent August 1- 6 in the hospital and my family was visiting August 2 – 9.

Two days.  I had two full days to be with them. “That’s ok,” I said.  “We will make the most of them”, I said!  We will stay up late and we will take advantage of each minute. And we did on that Thursday.  Friday morning I had two appointments, one at 7am and one at 9am.  No problem!  The girls went shopping with Jenny, a few hours of appointments and then back to Jenny’s for more snuggle time.

7 am – blood draw

Infusion Center – to unclot one of my PICC lines.  What we didn’t know was it takes some human intervention to check us in at different locations, and we were all over the place

10 am – informed of the need for a blood transfusion, that it would take a few hours. Again, I’m thinking, that’s ok, still plenty of time to snuggle.

10:15 – back to Infusion Center to unclot my picc line

10:30 – up to Ambulatory Treatment Center to check in, grab a beeper and learn our appointment time. Tears. Our appointment time is 330pm…time with my baby girls dwindling.

11 am – need some food.  down to the cafeteria.

12- 3 pm – wasted time, found a sunny window, watched some people and watched the construction crane.

3pm – back to ATC, get comfy in waiting room.  Immediately called back to begin transfusion.

Told two bags were needed, each would take 1-3 hours and there went any shred of hope I had to spend time with my girls.  At least i had time with Fred. When we finally got back to Jenny’s, it was 10pm. One hour of snuggling amidst a ton of tears from the girls. Heartbreaking.

Fred and the girls needed to leave for the airport by 5:15am.  The girls were already tired and stressed and definitely needed a few hours of sleep.  This trip was planned around chemo and taking into account a few extra days in the hospital…I had one full day with the girls, which I cherish.  I know, I know – I’m getting healthy so I can always be with the girls and Fred.  I just hope, wish and pray that day would come sooner.

 

Goodbye Family Fixed

My beautiful family





You’ve Got to Ac-cen-tu-ate the Positive

5 08 2014

If there is a complication, I swear, I will be forced to deal with it.

Sigh.

Friday, I was scheduled to have my blood tested then be admitted for chemo. Easy peasy, right? Riiiight! Apparently,nothing is EVER going to be easy in my world.

My blood was drawn, we wandered over to Admissions and found out it would take several hours before a room was ready. We knew what that meant, sometime in the middle of the night, I MIGHT be assigned a room. So, Jenny and I decided to go back to her house to rest.

When we arrived, I felt chilly so I put on a sweatshirt. The next time meandered down to my room, I put on pants. Then, I went back to the oh-so-comfy leather sectional and fell asleep. At this point, Jenny knew something was up with me. Being chilled and dressing warmer meant one thing: fever.

I can’t remember some of the details here but basically, I spent a couple of days fighting off a fever and I am now using oxygen to keep my heart rate down, which maxed out at 155 bpm if I was moving around. There is some kind of infection in me that the docs are having trouble localizing (didn’t we go thru this last year???). One IV antibiotic will keep me in the hospital for ten days before chemo. Yay.

“This was supposed to be a SHORT stay!”, she said,whining.

But it gets worse.

I haven’t seen my daughters or spent any quality time with my hubs since they left in late June. They are arriving Saturday for a five-day visit that we thought would take place at our friend’s house where I’m staying, which is a nice, quiet, comfy environment. One that would allow us to snuggle together and enjoy each other’s company, uninterrupted by doctors, nurses, tubes and other crap.

Needless to say, I am bummed. But, I am stuffing my feelings away because I know I have two little girls and one sweet man to cheer up. Have I mentioned how much it sucks to be a mom with cancer?

“You’ve got to accentuate the positive
eliminate the negative
latch onto the affirmative
don’t mess with Mr, In-Between”








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