25 August, 2010
22 August, 2010
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.
21 August, 2010
20 August, 2010
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.
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.
Love ya all!
19 August, 2010
I just felt
UNFAIRLY DEALT WITH.
DID i SAY ANGRY?
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.
18 August, 2010
What would I do when I got there? Oh so many things I wanted to start back at, but wait....the orders were to keep resting and taking it easy. Light walks around the block, light meals, easy on the stairs.
Wait, maybe I should wait...NOT. I was going home. It took a step stool for me to get into our truck. My mom came and helped me from the hospital room all the way to the truck and then home. I think, or was it John? See, oh my gosh I can't even remember. All I know is one person picked me up while the other waited at home with Damon and the dogs,
And all my flowers, and balloons, and get well cards.
Geesh...you'd think I could remember a small detail like who picked me up and brought me home, but no. I cannot. I have tried, but no luck. Actually it's probably a BIG detail to that person....but please forgive me! My mind has been on information overload since April 22 and I don't think it's ever going back.
This is what I think all the time now...there is no going back. there is no rewind. There are no do-overs. In my case there are no second chances ( as far as doing it all again). It is what it is from now on!!! Every day I have cancer. I will always have cancer. I will always have "bad" germs in my body.
Hold on......I will back up the train just a bit here. I was talking about coming home. that is a GREAT thing and I got sidetracked by my germs. Sorry!!!!
So, Stepstool into the truck. Riding home with a blanket against my stomach, yes that would be the quilt Audrey made me!!!!! Thank you again Audrey! Love ya.
Get home, stepstool back down out of the truck. I walk in and there are like 4 bouquets of balloons in the house. Beautiful balloons, brown, green, white, polks dots...great. They matched my ...hahaha, quilt.
Damon was there to greet me, his poor old mom! He was so so GENTLE with me. He was also very happy to see me at home. He immediately wanted to see my stomach and my boo boos. He wanted to talk about how the Doctor had put staples in my stomach and then removed them, and it didn't hurt me. (it really didn't). The Doctor actually told John that my surgery had gone as smooth or smoother than they could have asked for. As good or better than any textbook could drum up.
This is me the week after I came home:
Me with My John:one of the few nice days this summer.
And my WONDERFUL Mother who came to help!
Of course my Adorable Son, Damon: Trying hard to be the best example of "enduring to the end".
12 August, 2010
Cycle #5: infusion center in Anchorage.
Me with my mom at infusion #5.
IT took a long time. I arrived at 10:40, got my blood taken, and waited for the nurse to take me back, then we waited for the Doc to arrive. She finally did and we both had questions for her. We rescheduled my CT scan for October 6th. I will get it early in the morning and meet with the doctor in the afternoon to go over the scan.
After we met with the Doctor I went back to the infusion room and got all my meds hooked up. My mom sat with me and we read, snacked, and talked. My brother came to visit me on his lunch break. It is soooo nice to have family and friends supporting me even when I am gone from home. So we were there until 4:00.
The day before, WEdnesday when I flew in on the med flight, John and Damon came with me. They came just to spend the day. WE went to the zoo with DAmon and had fun. Damon got to pet the animals in the petting zoo..
And we saw other animals we were not allowed to pet, and just had fun together.
It was a GREAT start to my time in Anchorage.
It was really hard for me to take them to the terminal at the end of the afternoon.
So back to today...after My mom and I came back to Jeremy's I left and went to visit a friend from when I lived here before. Susan! I served with her in the Young Women's organization of our church before and she is wonderful. It was SO good to visit with her and catch up on what has been going on in our lives since I left Anchorage in 2005.
There was a lot. A lot to talk about, a lot we didn't know about each other. She had a lot of questions for me, and I was fine with that. You hear that Susan? I don't mind your questions AT aLL. Ask away!
For example: Susan wanted to know HOW am I dealing with this Cancer? How do I stay positive, or at least seem like I am? How do I have the energy to keep going and do the things I do rather than want to just crawl into bed and be sad? As I was talking to her and trying to answer her questions it dawned on me that I must be more positive than I feel...hahaha or I give off that impression to people because she isn't the first person to mention it.
Though I DO feel positive a lot of the time. I told Susan, like I've told many others, I don't really feel like I can crawl into bed and be sad because then I won't want to come out and I really don't have time for that. My prayer has always been that I want to raise my son, so if I crawled into bed, who would be raising him? Not me! I need to do my part and prove that I am willing to do the work behind my prayer requests.
Am I scared? YES.
Am I sad? YES.
Am I stressed? YES.
Am I worried? YES.
I am all those things, but I want to enjoy every moment that I am given. Or at least try to enjoy them. I still get tired and frustrated with my son. He challenges me every single day. I do things to pamper myself though and take time for me. Going to the gym is kind of one of those things. And I started getting a massage every other week right before I come to Anchorage. When I come to Anchorage I take myself to a movie, or two. I do as much as I can to help me feel "normal".
I do NOT research online. I leave that to others. And I enjoy hearing the success stories they tell me. Then go pray that I can be one of those success stories even in years to come.
My first Oncologist (I changed Docs) told me that he doesn't expect me to live the average lifespan of the american woman, which is 87. OK then, I'll take 85. That is a good number.
I am really nervous about the CT scan in October, but excited for the Doctors to review my case when this bigwig from Pennsylvania to staff with the Doctors at Katmai.
Last night I went to see "Charlie St. Cloud". I didn't realize it was going to be sad. Though I should have known, cuz I knew that the younger brother was going to die. I won't say more for those of you who want to see the movie and haven't.
So, I will continue my trip home from the hospital on another day. Gotta get some sleep. Keep your prayers coming, I need them.
08 August, 2010
Everytime John came to visit I would send home some flowers with him in preperation for getting it all home before it was my turn. There were A LOT of flowers and gifts. My room smelled so so good.
The nurses loved coming in and smelling. I joked that I might start my own floral business. I had to get in a few jokes when I felt up to it, because in between jokes if I let my mind wonder I became too sad and would end up crying. At this point we still really didn't know how serious my condition was. Only that the Doctor had said I was most likely looking at 6 months of Chemo. Any more than that he really couldn't say.
We had to wait until I got the PET scan and after that who knows what. The immediate plan was to get home, heal and recover for a week or two and then head to Anchorage for the PET scan. So lets think, I had surgery on Monday the 26th of April and I believe I came home Sunday the 2nd of May! MAybe I came home Monday, I can't remember anymore. They let me go as soon as I was walking a lot during the day, eating more solids, and going to the bathroom regularly.
Sounds like such fun to report to the nurses and doc?
It just became my life!
I have talked more about my elimination system in the last few months than ever in my life before.
My surgeon, Doctor Gregory Norkus is easy to talk to though. I have a good rapport with him and had to discuss these things with him.
So when all my bodily functions were agreeable with Dr. Norkus, he let me go home. I was somewhat nervous. After all, I had been taken care of, waited on, and had plenty of naps to brag about. I was scared I would get home and then not be able to rest easy. I was anxious Damon would hurt my stomach. I was over anxious I would want to come home and immediately take over my duties at home that I like done certain ways...like laundry, dishes, etc...I was also very excited. I was excited to sleep in my own cozy bed again, to fall asleep next to my sweet loving son, to wake up and have my John help me through the day. To hang out with my Mom during the day and maybe, just maybe sit in the sun with them all. The only thing that would be missing when I got there was my sweet Kaili girl. She was still in school, finishing her spring semester. She would come soon though, so I could wait.
So Sunday drew near. I prepared by walking, eating, eliminating, and being a good patient in general. haha.
Friday night I was so undecided. I wanted to ride my bike, but I also wanted to do the 5k and complete it. I texted my other friend, Lisa, and she said she was going to do the 5k rather than bike.
Saturday morning dawned somewhat beautiful outside. A good day for a bike ride. A good day to sleep in. A good day to spend with family. Even a good day to do a 5k...
So I lay in bed contimplating all those reasons and more why I should NOT participate in the 5k. I lay there.....and lay there.
Finally I decided I would just get dressed and go do it. I called Audrey, against my better judgement...I know she is not a morning person, and left a message that I would be going to Base to do the 5k and would she please join me.
I went, I registered, I chatted with friends...Ambee, Lisa, Crystal. I told Lisa don't even worry about keeping pace with me, she should zoom ahead if she felt like it. She assured me she is not a big runner and no matter what we did she was ok with it.
So the race was on. We started out jogging. Lisa pushing her daughter in the jogger, and me hands free. I was panting in a matter of minutes. WOW were my lungs out of shape. I've been back to the gym, I've been hiking and walking, and getting exercise. But running out in the open is just plain DIFFERENT! It was hard on me and my weak lungs. I was/am amazed at how out of shape one can get (namely ME) in just a few months. I could have done this no problem back in April before surgery.
At this rate though I had to keep slowing down to walk. Lisa was a trooper and did this with me walk...jog....walk...walk...jog...on and on it went. When We got around the peninsula and by the CGCutter we jogged a bit and I waved Lisa on to finish with a jog. She did. I walked a moment and then jogged again myself. It wasn't much farther to the end and I really wanted to end on a jog also. I intervalled the rest of the way...more jogging than walking at this point. It was actually easier for me by myself because then I could jog REALLY slow and keep my breath in check better. Lisa says she jogs slow, but it was still too fast for my short little legs and weak lungs! hahaha
The finish was near...I did it...in less than 50 minutes.
I later found out from Ambee who was wearing a GPS that we went 3.45 miles. So that in less than 50 minutes was even better. I was proud of myself, and it felt good to have my exercies in for the day.
Now home to shower and spend the rest of the day with family! I got to do the 5k AND still be with my family. We went to the Base gym where Damon and Kaili played on the blow up bouncy toys, and we all ate hot dogs. Damon got his face painted like a green monster and then we went to the pizza parlor across from the gym to get free soft serve ice cream for Damon.
To top it off we went to the FREE matinee at the movie theatre on base. Toy Story3.
My day was complete. It was a good day. A day to be grateful.
I am grateful!!!
06 August, 2010
Take Note: I appreciate ALL the flowers and gifts I was given while recovering from surgery. However....and this may be a little prejudice, this quilt is my FAVORITE!
Yes, my FAVORITE gift! It is officially my "treatment" quilt. I take it with me everytime I travel to Anchorage for Chemo. I take it to the infusion center, and I sleep with it no matter what other blankets are nearby.
My good friend Audrey Curran made it for me. She made it in 3 days....she is always complaining about how she did the binding with the machine in order to get it finished. Normally she would do it by hand. I love it though, and Can't find a thing wrong with it. To me it's the thought and the time that count. I wouldn't have it any other way. She took time to consult my family and friends regarding what I liked, colors, animals, etc...There is green Minky on the back and it's lush!
I used this quilt the rest of the time in the hospital. The nurses were constantly commenting on it. It helped comfort me while I lay there alone in between visits from My John, Damon, and my Mom...as well as friends. It was a long week. Amazingly I was able to just let go of what was going on at home, and rest, heal, pray, and sleep.
I had several reactions to my medications and had to get those changed. I think by day 3 or 4 I was out of bed and sitting in a chair. I even attempted a short walk on day 4. It was really painful to get in and out of bed as my stomach was in trauma. I had to hold a folded blanket against my stomach and try not to strain too hard with my abdominal muscles. It was a hard place for me to be as I had been working out all winter and was used to being physically strong.
I was not allowed to eat for the first several days, only what they could give me via IV. Once I was allowed to eat it was liquids only!
Broth, juice, water, popsicles.
The popsicles were my favorite.
I was losing weight though. I had already lost 22lbs over the course of the winter, and now was losing more...not the way I wanted, but hey!
Once I was able to walk down the hall, my only request was for a scale. The nurse was happy to oblige me and rolled one out into the hall for me to step on. Wow, I was down 10 lbs.
I wasn't really suprised.
Eventually I was able to start eating more solid food.
Mashed potatoes, jello, chicken noodle soup without the chicken.
It took my system a day or two to get used to that food.
Once I started walking up and down the hall, I was hard pressed to want to stay in bed, though I did get tired very fast. Naps were always right around the next corner for me.
Eventually I was able to put on baggy sweats and a zip up sweatshirt. The Doctor came in one day to remove my staples. That was not painful at all. It felt good. He said I was healing well and we talked a bit about the plan for the next several weeks.
He wanted me to heal enough to travel to Anchorage for a P.E.T. scan. This, to find out what was going on in my lungs. The CT scan I had had prior to surgery showed nodules in my lungs. Our prayers were that it had something to do with having own exotic birds, or pneumonia, or even TB. Anything but Cancer.
While I was in the hospital my mom had come to town and was a tremendous help to John and Damon at home. I got to spend time with her at the hospital too. One morning I was feeling exceptionally sad and Called my mom early. I knew John would still be sleeping. I asked my mom to come see me and bring cream of wheat. She asked me if I wanted her to wake up John and Damon. Without hesitating I said, NO. I wanted her to come alone. It was one of those moments when you want only your mom.
Only mom will do, know what to do, all without having to ask.
So we spent the morning together. Talking, crying, walking, and just being together.
It was nice.
I cannot express well enough all the gratitude in my heart for my mom, my John, Damon, Kaili, and all my many friends! Most of all my Heavenly Father. While He has given me this challenge, He has also blessed me beyond words.
"Fear thou not; for I am with thee; be not dismayed; for I am thy God: I will strengthen thee; yea I will help thee; yea I will uphold thee with the right hand of my righteousness." (Isaiah 41:10)