Changing Tastes and Healthy Eating

Since being diagnosed with Leukemia back in 2008 eating has been anything but normal or easy. I immediately had to get used to being on a low microbial diet, which consists of not eating any fresh fruit or vegetables. If I wanted to eat any of these things they had to be cooked thoroughly. Also anything else I ate had to be processed and contain lots of preservatives. If I wanted to eat meat of any kind it had to be well-done.
Then once I started treatment I had to continue to follow this diet but I rarely wanted to eat going through all the treatments of chemotherapy and radiation.
After receiving my bone marrow transplant I had many
more restrictions to follow and starting a regimen of
steroids really messed up my eating habits. I would go
from being ravioness and eating everything in sight to
having to force myself to eat something so I can take
my medicine every day.
Now I am very, very close to being completely off the
steroids and am able to eat whatever I want now. Just
as long as it is washed well and not contaminated in any
way. I am pretty much having to teach myself how to
eat again. I am finding myself just grabbing and wanting
to eat all these packaged processed foods because that is
what I am used to doing for almost the past 2 years. Back
then that is what was the best for me and the only food
I was allowed to eat. Now that I am recovering and trying
to build my immune system and body back to it's old self,
I should really be working on eating fresh and healthy
foods.
I am reading this book right now, Eating Well Through
Cancer which has been a huge help in helping me understand what are the best foods for improving certain areas of my body. Also since I still occasionally struggle with nausea and certain other side affects, it gives you certain foods that are best to eat when you have these symptoms. I am also super excited because Moores Cancer Center is offering monthly cooking classes for patients and family members with a different topic and food category each month. Since I love cooking and especially love learning new things about cooking I am really excited to jump into this new adventure next month.
One last thing that has been really strange and a huge adjustment is that my taste buds have changed quite a bit since my transplant. I used to love love spicy foods. The spicier the better was my motto and I used to laugh at those that could not handle hot salsa or other hot food. Well I am now one that cannot eat ANY spicy food. Even mild things burn my mouth like crazy. I am a pretty big wuss now. This has been really disappointing for me since Mexican food is my favorite. I am experiencing all these weird cravings for foods I was never really fond of. I know there is no proven theory that you can inherit your donors likes and dislikes but after speaking with other transplant patients who have experienced the same thing I am beginning to believe that it is very possible. Crazy to think huh!!!! (:

Curious Creatures for Immature Adults

The book that gives patterns to make many

different fun creatures.

POLLY

Polly is a tea party hostess from a distant

planet. Everyone there serves tea for a living,

but none so nicely as Polly. She attributes her

success to her red and white polka dot stockings.

Beware of her tea cookies, however; just one of

those will make you silly for up to 60 days.

MONKEY IN THE MIDDLE

Monkey in the Middle is a retired world heavy-

weight champion wrestler. At the pinnacle of a

match, he would use his beefy forearms to perform

his signature headlock on his overwhelmed

opponents. Always with a head for business, Monkey

prudently squirreled away his winnings and now owns

a chain of fast-food restaurants in Buffalo, New York.

Polly and Monkey are Friends Now (:

Lately I have been taking on lots of creative projects to keep myself busy and just because I plain love making and creating new things. From baking to quilting and sewing projects. I love trying new things and expressing creativity through the things that I make. This Christmas my brother and his girlfriend bought me this book that has lots of patterns to make these crazy creatures. It is called PLUSH-O-RAMA Curious Creatures for Immature Adults. The great thing about these is that you don't really have to follow the directions exactly. It gives you freedom to add anything you desire. You can express your creativity in whatever you want to do with them. I made these two creatures for my brother and Kym to thank them for giving me the book.

Light the Night 2009

Last night my mom and I joined thousands of other people in a walk for the Leukemia and Lymphoma Society to raise money for blood cancer research. Every person carries around an illuminated balloon representing a color for what they represent to this cause. Red symbolizes caregivers and supporters, gold represents those that have passed away and white represents survivors and patients. It was truly amazing to see all these people get together in support of this wonderful cause. Lots of money was raised and hopefully someday all we will see is white balloons floating around representing everyone being survivors. Thanks to everyone for their support and those that donated toward the cause. You have no idea the impact you are making on others lives such as myself.

October is quite a busy month

Last weekend I went camping with some good family friends. We went up to the mountains and spent a wonderful Fall weekend camping. It was a ton of fun and very relaxing! It was beautiful fall weather and was actually the hundredth anniversary of the annual apple festival in the town. So my mom and I bought an amazing apple pie on our way home and enjoyed the drive on the the windey road with the changing leaves blowing in wind. It made me all warm and fuzzy inside just as anything fall does.
Tomorrow my mom and I are headed out to quilt camp. It is a group of my mom's friends and some of their daughters who get together twice a year for a getaway to quilt and do craft type things from scrap booking to knitting and everything you can think of in between. Lots of talented people and a nice weekend to just get away and finish some of those projects you wish you can do but never seem to find the time to do at home. It should be a good time and I am looking forward to another weekend away from the house. I have quite a few projects I am hoping to do so I hope I am feeling good to sew, sew, sew away!!!
I also wanted to mention that next Thursday the 15th I am going to have my one year bone marrow biopsy and aspiration to check for any leukemia or cancerous cells in my bloodstream. I just ask that if you think of it to pray for me on that day. I am scheduled to have it at 9:00 am. I am not too worried about it but it is always a little nerve wracking thinking of the possibility of it returning. So if you think of it please keep me in your thoughts and prayers on that day, I would appreciate it very much.
Then on the 22nd I am finally going to be able to make my first trip on a plane since I got diagnosed. I am taking a trip back to Montana to the Bible College for a week. I can't wait to go as I have not seen a lot of the people since I left to come back to Cali. It will be the first time I have left my mom for more than a day since all of this started. I think my parents are a little worried about me going, but what are parents for? I am very excited but I would be lying if I said I am not a little concerned about being so far away from my doctor and hospital in case something happens. You never know because sometimes I am perfectly fine one day and the next I end up in the ER. But I am just praying that everything goes smoothly and I am able to enjoy some time away from my normal routine life.
So as you can see this month is getting pretty jam packed with things to do. It is a lot of fun but tiring at the same time. I am thankful for the opportunity to do all these wonderful things.

It's been a while Huh! SORRY!!!!

Well I have no idea why I feel inspired to write since I have not been inspired in what like 6 months to write on this thing. Life has been crazy and days seem to fly by. It is amazing even though I am not working or going to school, it seems that just managing my day to day life and then the things I am involved with take up most of my "good " days that I am feeling up to doing things. Thank God I have been having many many more of those lately. We also have moved and moved again so it seems like before I know it it is October 1st and I am celebrating being 24 years old.
Yeah, today is my 24th Birthday.(Well I guess now it was yesterday). I didn't do anything real big, just spent it with family and friends eating good Mexican food and cake and ice cream. Although it wasn't extravagant it was wonderful. All day I just kept reflecting back on last year and it was a week after my transplant so I was restricted to my hospital room with no cake or ice cream because I couldn't eat anything. And also no people for a while because of my immune system. So when I think of my birthdays from now on I am sure they will always be a little better than my 23rd. Another major plus was that I just get to celebrate Life!!! How wonderful, precious and fragile it is. I have experienced that all too well and hope that I remember that not just on my birthday when we usually celebrate life but everyday of my life.
Yet again I apologize to everyone who was following my blog for my lack of entries of the past SEVERAL months. I am hoping this is the start of more consistent posting and putting up pictures again so you can get a glimpse of how I am doing and what I do with my days still battling this wonderful disease and its affects. They should be much happier posts than those of last year. At least I hope (:
So I know that a lot of you would like to know what has happened between my last post in March and now. I can tell you a lot has happened. Too much to think and write about on here. My one year transplant birthday was on September 18th and I was planning on sending out an update letter in the mail telling of some of these past year events and how I am doing now. I was hoping to get it out a couple weeks ago, but yet again time has slipped through my hands. I am still hoping to send it out sometime this month. If you would like me to send you one just let me know and give me your address. You can find me on facebook or my e-mail is ezekielgrl526@hotmail.com.
Wishing everyone and wonderful and blessed day!!!
-Lyns-

When will life be normal?

I see that I am being very horrible at updating this blog. It is a little more than ironic to me that while I was going through all the chemo and radiation junk I updated almost daily. Now that I am home and not doing too much I find it is one of the most difficult things for me to keep in touch with people. Not only through this blog but also through phone calls, emails, letters and visits. I feel like my brain is just not there and when I go to do it I just lack the inspiration.

To be honest I have not felt like myself in quite a while. While I was going through all the chemo and pre transplant stuff I had to deal with a lot of changes. Losing my long thick hair, watching my muscles shrink smaller and smaller and losing quite a bit of weight (although I didn't mind that too much (:   They were all changes that I had to deal with and get used to, but I still felt like myself. Wigs and scarves adorned my now bald head and most of my clothing covered all my scars and the central line that came from my chest. All in all I looked pretty much the same and felt good and confident when being around others. I could wear all my normal clothes, which I love looking nice and shopping for cute clothing. That whole realm wasn't too much of a change. It was the one thing that felt normal in a not normal world for me.

Since the transplant and all the wonderful GVHD issues, I have been placed on this wonderful medication called Prednisone aka: steroids. Now I am sure by now you all know how much I love this med due to my numerous rants on different posts about it. I have thought time and time again that next month I am going to be off of them and the months and months keep going by and still I am on them. They make me feel somewhat of an "alien" as another transplant patient put it. My face has swollen to three times it's normal size and my whole upper body has also swollen as well. I can no longer wear my normal clothing so I now live in sweats and pajamas. I wear my UGG boots even in the warm weather because they are the only thing that it large enough to accommodate my feet when they swell up by the end of the day. I would be lying if I said I wasn't a little more than frustrated at this point. My skin has stretched so much I now have these massive stretch marks on my stomach and arms. I am still so thankful to be alive and be able to have gone through this with not any huge complications. I remember that every day. I am just ready to feel like my normal self again. Or at least have my appearance look like my normal self again because then I think I will start feeling like myself in other ways. I am learning I still have a ways to go, so I guess the best I can do is take it a week at a time and know someday my doctor will say those wonderful magic words that I am off the prednisone. Till then I will have to deal with feeling not my norm for a while.

Where do I Begin?

Well just as I have titled this blog post I am having a hard time knowing where to start. I should be more diligent in updating this thing then I won't fell overwhelmed when over 3 weeks have gone by and a million things have happened. But to tell you the truth everything happened so quickly that time just seemed to slip right by. I am going to try to remember what I can and give everyone a little taste of what has been going on.
Shortly after I wrote my last post with some good news I woke up just a couple days later not feeling that great. This sickness continued through the weekend and then that Monday I went into the ER. I was having persistent nausea and vomiting and a horrible headache that went along with it. After spending 16 hours in the ER they finally transferred me to a hospital room. They then informed me that after doing an x-ray of my abdomen they discovered "free air" in it. Which I guess is a very serious thing and can mean immediate surgery. So I had a surgeon team checking on me every couple hours seeing if I was getting any worse to know if I would have to go to ICU for surgery. I was a little overwhelmed thinking, "what in the world is going on here?" Through the next few days my symptoms didn't worsen and I actually continued to get better so they were ruling out the "serious" thing they thought it was. Fortunately I didn't have to undergo surgery and they were a little baffled at what caused this. In the end my doctors said it might have been an affect of the transplant and they have only ever seen this in one other patient. Another miracle that we can only give credit to God for. So along with all that fun stuff I had a ton of tests and procedures done to make sure the nausea, vomiting and headaches were not more serious than just a spell. So bring on the x-rays, CT scans, MRI's, lumbar punctures and stomach endoscopy's. I defiantly had my share of them the 12 days I spent in the hospital. Fortunately everything always came back clean. They switched some of my meds around and it seems to be helping my headaches a little.
I have been home for 2 weeks now and things have been alright. I have been having my ups and downs. My energy level isn't super great and I have been resting quite a bit. The other not so great thing is they had to up my steroid dose quite a bit again. I broke out in the GVHD rash pretty bad, so to get it under control they had to increase my steroids again. I am tapering them down but it wasn't that much fun going backwards. Hopefully it wont last long and I can get off of them without any more flare ups soon. I am ready to get rid of this swelling and muscle atrophy pretty bad. But my blood work continues to look good every week so that is something to be thankful for. So tomorrow I go and get my catheter removed from my chest due to it shifting inside and get a picc line put in my arm. So it seems that there is never a dull moment and I continue to take it one day at a time.