it's about time.

Jeremy took me to "Frigid North" and they fixed my charger pack for this darn laptop!!!!! I am back on.
I just finished my infusion #7 and am feeling good so far. I head back to Kodiak tomorrow and then John, Damon and I head out on the Ferry Saturday the 18th for Homer and then to Anchorage for a few days until we close on our house in Palmer. I can't wait.
I am getting a CT scan the 6th of October to see where we stand a fter to treatments I have so far. We haven't decided on an end date for treatment...we'll see what happens.
I have been through a rough month. I had blood clots develop in my lungs, one in each, and then had a cold/flu virus on top of that. I finally started feeling better last week and so much better this week. My white blood cell count plummeted and is way back up.
So, I will be back up and running with my blog next week when I get off the ferry and settle in the anchorage area.
In the mean time, I will accept and appreciate any prayers, and may God's blessings be with each of you!!!
Dani

Pre-op for biopsy:





Dad filing his nails while waiting:






Jer, Kaili, and Dad waiting:




We did a lot of waiting this trip. But when it was all done, Dad got to come to Kodiak to visit and help out. It was great. Having family around helps when recovering from hard things. I am so grateful to my Heavenly Father for putting me in the family I have and putting the friends I have in my path. I couldn't be doing all that I am doing today without each of you!!!

Finally...hang in while I deal with my computer. The charger hasn't been working right, and everything is on hold. Movers coming also in two days, so hang by while i spend time preparing and will update asap.

love and blessings to each of you!
dani

Biopsy

Lung Biopsy! What can I say? I got a trip to Anchorage out of it. My Dad was there, along with Kaili, Jeremy, and my best friends. John had to stay behind this time with Damon. He was having a hard time staying behind, but I needed him with Damon. I reassured him that he was exactly where I needed him this time. I had plenty of love and support at hand to get me throught this.

Kaili hung out with me while I did all the admitting crap! I answered questions, gave my blood, waited...(and we all know now how I feel about waiting), and finally returned the next day for prep. Then I had to go into a room to get my epideral put in place...not fun, I probably wouldn't do that again. But they assured me it would help me battle the pain. At this point I was thinking....heck what's a little pain? I can deal with a little pain. But I did it. I let them stick that stupid epideral in. Then they knocked me out and I don't remember anything else until I was in and out of reality in phase I recovery. I was there for HOURS. So long that one of my friends who came to visit, waited so long she eventually had to leave without seeing me...and they finally let my family in to see me even though visitors usually aren't allowed in phase I recovery. There are pictures Kaili has of me with them during this time, and I have to say my memories are vague.

What I DO remember is the pain! yep....i said I 'd take it, but I didn't say it wouldn't hurt or bother me. I WAS hurting!! It WAS bothering me.

They finally took me to a room. Dad, Jeremy, and Kaili were there with me every step of the way. This hospital stay is mostly a blur for me, but I remember that I had to start as soon as possible to breathe into the little oxygen contraption to exercise my lung.

You see, they had to collapse my lung in order to get the biopsy. My lung was sore and tired. In the wee hours of the morning my heartrate started to drop really low...they ended up putting me on some blood pressure meds. It made me so nervous....everytime I would start to nod off, my heartrate would drop and the machines would start beeping and I would wake up. So I didn't sleep well for hours.

I was only in the hospital for two nights, but it was almost harder than the whole week I spent in-patient in Kodiak.

The day after the procedure my Doctor came in and let me know that the biopsy results were in. The noludes in my lungs were positive for colon cancer. So I am officially, Stage IV Colon Cancer Metastatic to the lungs.

Sounds fun huh? haha, Multiple trips to Anchorage on someone elses dime not withstanding, it's not fun. Its scary.

The Journey Continues

Did I mention already that coming home was GREAT? Scary too, but wonderful! Damon was good with me, Mom did everything I needed without me even having to ask. Mom's are good that way! John did everything else...He's good that way too. Vacuum, dishes, laundry, anything.

My job now was to heal so that I could fly to Anchorage and get the PET scan I needed. I did my best to let mom and John do for me so I could just heal. It wasn't as hard as I thought it would be. We enjoyed meals coming from different families, and enjoyed a week of cool, but sunny weather. I began taking walks around the neighborhood the day I came home. Of course that first day I didn't make it all the way around the circle, I had to work my way back to that, but I still got out and did what I could.

It's really hard to write this tonight as Damon is having trouble going to bed. He keeps coming downstairs, now complaining of a scary light. I am feeling the desire to go lay with my baby. Darn!!!! Well I guess John is now. lol

So, walking around the circle.....it became easier every day.

Finally after enough time had passed I was scheduled to travel to Anchorage with my John and get the PET scan and my first appt with my Oncologist. I was nervous.

I was still trying to swallow the fact that I had Cancer. Now I had to actually go meet with a Cancer Specialist? What had happened to my life? Where was the me from before? My surgeon had been telling me that this had probably all started about 3 years ago...so sometime after I had Damon. All I could think about was me "before" and me "after". What happened inbetween? I have NO IDEA!

On May 12th I had the PET scan scheduled, but when John and I arrived I had a message from the office saying they didn't get their shipment of radiation in so I couldn't do it yet. I reminded them as gently as I could that I was from out of town, and had left a 3 yr old at home. I couldn't stay indefinitely. So, I was rescheduled for the next morning with my visit to the Doctor shortly after the scan. Not long enough to get definitive results, but long enough I guess to know a little more.

I had to go in this little quiet room and drink the barium...like bland milk sort of....? Then John had to leave while the nurse gave me a shot of radiation. I got to sleep for an hour before they came to get me for the scan. That only took all of 20minutes.

Back out the door with a few hours before meeting with the Doctor. I was supposed to stay away from crowds, pregnant women, and children as I was "radiating". So was went to the mall where all three were close at hand.

Just kidding. We did NOT, I repeat, NOT go to the mall.

I don't know what we did.

Then we went to Katmai Oncology to meet with my doctor. He was still waiting for prelim reports from the radiologist. So first we visited. Then he got the results that there were multiple hot spots in my lungs, (which we knew there would be, just not how hot!) but there didn't appear to be any anywhere else. That's good right? I have no clue.

He was talking about the possibility of doing a biopsy on one of the larger nodules in my lungs but needed confirmation from the Thoracic Surgeon. So we waited to hear from him while we were there. He took a look at the results and declared that yes he would do a biopsy.

Next step, to schedule me for the biopsy. Oh this was turning into some wait and see game that I was not too fond of.

"Well, we'll know more after this" "lets wait until that to say". Grrrrrrrr


Waiting has NEVER been one of my strengths. My life has become a wait and see game. Wait for surgery, wait for pet scan, wait for biopsy, wait for this wait for that.

Please, those of you reading this....don't wait for life to happen....make life happen.

Live in the moment, plan for the future.

Blessings.
Dani

Sleepy Saturday

So, I decided to write early in the day this time. We are all and trying to decided what to do with this Saturday. Kaili leaves to return to school tomorrow morning so this is our last full day with her. Of course the weather turned cloudy last night.

bummer.

Although once we had rain here at home, and then got to Pasagshak and it was so nice and sunny out there. Not to say it's always going to happen that way.

I feel much better today than I did yesterday. Though very tired. I kept waking myself up with thoughts of my bloodclots breaking away and traveling to my brain...I won't mention what happens then. Terrible thoughts to fall asleep and wake up with. Finally around 1a.m. I think I finally drifted off for the duration of the night.

Damon woke up on HIGH gear. He didn't even come get us up, he ran straight downstairs and was doing stuff. I could hear him out on the porch! Oh my neighbors are mostly likely looking forward to Damon moving on....hahaha

Today we will try to do some fun, relaxing stuff....things that make us feel normal. Later I will get back to my story of coming home and what comes after that.

May you all havea blessed Saturday!!!

Dani

I don't have pictures of today.

Today wasn't really a day I felt much like photographing. I developed a cough Wednesday afternoon and my right lung has been hurting.

I chalked it up to being out of shape and thinking my lung wasn't healed from the biopsy and that the capacity of it wasn't what it used to be. Last night I was VERY uncomfortable and John insisted I call the clinic this morning.

So I waited until almost 9 a.m. when I knew John wouldn't let me get away with waiting any longer. I called the clinic, they called me back after talking to the Doctor. I was told to go the the ER in case they wanted a chest X-ray.

Grrrr. NOT what I wanted to do today...this was absolutely not on my agenda. You know, the sun was shining, the skies were clear and it wasn't windy. I was actually planning my walks around the neighborhood and possibly to the base with Damon before I even got out of bed. I also had a date with Kaili for Italian Creme Sodas at 1pm. I was definitely wasn't going to miss that.

So off to the ER I went with John and Damon. The Doctor there was expecting me and had bloodwork ordered as soon as I walked in. He suspected blood clot. The bloodwork came back positive so then I was to get an IV contrast CT scan of my lungs to see where it was.

The scan...well that is just interesting. Robert, the technician puts this contrast into the IV and I immediately feel warm in my throat, then my chest, then midsection, then all of a sudden I think I wet myself. Honestly that is what if feels like. It is stranger than strange and you aren't allowed to move while this sensation is going all through your (my) body! It happens really fast, then it's all gone, I get to come out of the tube and wait for results.

POSITIVE! A blod clot in EACH lung. Go figure. As a friend of Johns said to me, I never do anything "half-assed". HAHAHA Go Tom!

So, self injected shots for who knows how long, and coumadin on top of that. More bloodwork on Monday to see if the coumadin is taking over yet. These are bloodthinners. In the meantime, I am to take it easy. I can still exercise but nothing that hurts. Exercise is part of who I am! I have to be able to exercise. John has put me on more of a restriction than the Doctor(s). He likes to restrict me, of course when he thinks it is for my own good.

In this case I am sure it probably is for my own good. Though at this rate, I am NEVER going to lose the weight I want to lose. I should have done it 2 yrs ago! HAHA, I am on blood thinners and all I can think is, what exercise can I get, how can I lose weight.??

My friends Amy and Jake came over tonight and John and Jake gave me a blessing. That was so wonderful, peaceful, and much needed. I love Amy and Jake and their family! They just drop whatever they are doing to help me out, or incorporate what I need into what they are doing. I have a lot of friends here in Kodiak like that. I am so going to miss it here.

Isaiah 41:10
Love ya all!

Dani

Back to Reality

Back to reality is how today felt. I didn't feel sick. I had energy. The sun was shining.
I just felt
CRANKY.

ANGRY.

SAD.

PUT-OUT.

TRAMPLED UPON.

DISCOURAGED.

MAD.

UNFAIRLY DEALT WITH.

DID i SAY ANGRY?

CHEATED!

YES, THAT'S IT, cheated! I feel cheated in so many ways. Forget for a moment my journey home from the hospital. Today that doesn't much matter to me. Today I feel cheated and I DO want to crawl into bed. I want to lay in the sun by a pool where the temps are warmer than 55. I want to run around the neighborhood and not feel winded and have a sore lung. I want to be able to clean the house well enough that my husband doesn't feel the need to do it for me. (though I know I must not feel cheated to be married to a man who isn't afraid of housework). Honey, really....thank you!

Cheated I say! What a rotten feeling. It has the ability to ruin a completely beautiful, otherwise enjoyable day.

It sucks that I have to make changes (well I don't HAVE to), to my diet because I am sick, not just because I want and need to lose a few pounds.
Oh that I could rewind the calendar to a day when ALL I need to do was lose a few lbs. Would I change my diet for that knowing what I know now? Maybe....yes. I hope. lol

Funny story I have to put in to freshen up my mood a bit.


Yesterday I was driving and Damon and I were talking. I was telling him sorry for feeling sick so much, but that I actually was going to be sick forever just that some days I wouldn't feel so sick. He said, "yes that is why you keep going to the doctor to get medicine for your sick germs." I replied, "that's right sweetie. I need the medicine so I won't feel sick all the time." Damon returns, "Mom, I have a good idea...we should put a blueberry in your body!" " A blueberry?" I ask. "Yes, mom, blueberries kills germs, and we should put a big one in your body!" he informed me.

Oh how I wish a big fat blueberry would do the trick. I would eat a big one every hour! Those are easy to eat, they are sweet and juicy.

So, my reality today....cranky, cheated, bored, plain old angry. But we are having company for dinner. The Elders are coming and I invited a few other friends to join us for salmon and rice, pie, and salad. And we are going to fire up the fire pit in the backyard and make s'mores. Those are my fave!!!! It relaxes me to make and eat s'mores. Since the sun is out we have to take advantage.
I hope you enjoy your evening, and find "s'mores" on your cranky days.
love,
Dani