The other day I had a spinal tap. Pretty bad ass I know! As you know my life tends to be pretty scary. I don't need to bungee jump or sky dive ( though sky diving at this point sounds pretty fun and a tattoo.) Life is my challenge. It amazes what is going on in my body, yet, I can still manage to walk and live. Anyhow, Wednesday I am taking one more step into cyborgdom and getting a ommaya. Here is how they put it in if you are interested: How to become more of a robot Why am I mentioning ommaya? In the spinal tap they found cancer cells. These have metastasized from my lung cancer. I will be receiving chemo in this port twice a week. They will be testing each time for cancer cell. Crazy news the week of your birthday, right? So, now I'm just wondering when I will turn into "Small Wonder."
Her dress, ROCKS! I mean I could totally pull that off at my age right?? I mean I should have a license to wear what I wanna. I have earned the right! Then, once I beat this, you can ask me what I'm doing and I will reply, " I'm going to Disneyland....and Sea World!!" I'll be going home to rest. Spinal Taps make your bones achy and tired. I'm bummed I can't be in Nashville but believe you me I'm always there in spirit. Besides I don't think I would be much fun.
As you can probably tell, no trip to California, yet. My last blog was in September. In October, I was back at the Neurologist. My favorite place to be called into after a PET scan. They found a spot on my lower spine. At first they sent me in for radiation. I had been been marked to start treatment. I was called the next day. The day radiation was supposed to begin and they cancelled! The tumor board had met AGAIN and decided that this lesion (what they thought was what they call a "drop lesion") was not related to my lung cancer or the tumor on my pituitary gland. This was something that would only get bigger and bigger. It had already caused me to lose my footing and fall. Among other things...scary I tell you. Anyhow, on October 12, I went into the surgery. They removed the tumor on my spinal cord and behind was left a 6 inch scar. The good news is it was BENIGN! Thank the Lord for that! I no longer have the side effects I did. I still haven't gained my strength back. However, I have definitely slowly started to gain my strength. All in due time. It's hard to believe it's already November. It looks like I may get to come to FINALLY visit. My parents asked what I wanted for my birthday. I said,"Visit my beloved Nashville,please?" So, pending my usual issues i may be in the weekend AFTER my birthday, November 15. This is also when Lungevity is having their walk/5K run. I'm hoping my mobility scooter and I will be attending. NASHVILLE FRIENDS: Lungevity is having another walk this year on November 17. If you are interested in walking, go to this link Lungevity. Please join my team Badger Believers, if you wanna! It's 2 days AFTER my birthday day this year. It's during Lung Cancer awareness month. I hope to see my Nashville friends while down there. I'm not a great planner and I would love to see you while I'm there so please drop me a line if you have any ideas of where we could meet up. You can think of it at your gift to me :) Much Love! K*
Well, first of all I would like to take a moment to remember the Great Muppeteer that passed of emphysema on August 23, 2012. You may remember him best as Count von Count on Sesame Street. He was also Gobo Fraggle, Amazing Mumford, and many more! Thank you Jerry Nelson, for teaching us all how to Count...ah ah ah! Another soul taken by a horrible lung disease...BOO HISS!
Anyhow, in Kristi Badger news...well it's not the greatest. On the good side, my right lung and brain tumor are dormant. As of September 13, I have moved into maintenance Chemo for my lung issues. The tumor on my pituitary gland was taken care of with the gamma knife they did back in May...yea.
NASHVILLE FRIENDS:
Lungevity is having another walk this year on November 17. If you are interested in walking, go to this link Lungevity It's 2 days AFTER my birthday day this year. Also it's during Lung Cancer awareness month.
However, along the way I have developed a tumor in my lower back. It was found in my last PET scan. Then last week I had an MRI done. The tumor board is still trying to decide what kind of lesion it is. I almost started radiation this week when they called and cancelled. The board is trying to decide whether it's removable or whether it just needs radiation. Regardless of it all... very scary and frustrating. I'm trying not to think about and do all I can to rest in him...it's all I know how to do at this point.
I was hoping to take a vacation from cancer next month...and if those Ellen tickets pull through I WILL find a way. I WILL!!
Peace to you my Lovelies who keep me up in Prayer and Love!
I hope everyone is doing well! This week I am having quite a few tests done. In fact, I'm finally getting results that I have been waiting THREE months for. That's right, we finally get to see what the Gamma Knife did inside my head. So, here is how the schedule goes:
Monday: PET Scan
Thursday: MRI then appt with the Brain Doc to see what all the Gamma Knife treatment did
Friday: Bloodwork, Visit with Dr MO to see the results of the PET Scan and to see what kind of chemo I will be receiving on Friday...full blown or maintenance!
I'm exhausted just thinking about the upcoming week.
Since November (Lung Cancer Month) is quickly approaching, I thought I would share some facts from Lung Cancer Leaders
WOMEN AND LUNG CANCER
Lung cancer will take the lives of 71,000 women this year – more deaths than from
breast, ovarian, and uterine cancers combined - yet cancer’s #1 killer of women remains
greatly overlooked and misunderstood. Here are some of the essential facts about women
and lung cancer:
*Lung cancer kills more women each year than breast, uterine and ovarian cancers
combined.
*93% misidentified the leading cancer killer of women or have no idea what it is.
*Lung cancer will kill 71,000 women this year, nearly 80% more than will die
from breast cancer
*Only 8% of women know lung cancer is the leading cancer killer of women (49%
think breast cancer is)
*One in every 16 women will develop lung cancer in her lifetime
*Lung cancer diagnoses among women are up six fold over the last 30 years
*One in five women diagnosed with lung cancer never smoked
*Approximately 20,000-25,000 people who have never smoked are diagnosed with
lung cancer in the U.S. each year; more than 60 percent are women
* As a separate disease category, lung cancer deaths in never-smokers ranks as the
seventh deadliest cancer worldwide
*The overall 5 year survival rate for women with lung cancer lags far behind those
of other women’s cancers (Lung cancer: 18.8%, Breast cancer: 90.1%, Ovarian
I didn't realize I hadn't blogged since APRIL! So, in case your wondering, yes, I am indeed still alive and kickin'. I've had a few procedures and a couple of hospital stays since. I've been out of the Hospital probably since May 7th. Along with being told, that the lung cancer had returned and having pneumonia. I entered the hospital having horrible headaches.And as you may or may not have seen in my last blog, this was because of a tumor on my pituitary gland in my brain. It took awhile for them to get my medication correct. I also wound up breaking my power port, so I had that replaced. Luckily, it had not shattered and dispersed through my body. I also had another bronchoscopy. I had to be OUT of the hospital to have the Gamma Knife Radiation treatment (otherwise the insurance would not cover it.) That was a bit of an emotional procedure because they discovered in the MRI before hand the the tumor is way to close to where my optic nerves cross. They had to be very careful when going in to radiate the tumor. The results of this procedure take up to 3 months to see take affect. I'm also back to full chemo. My next treatment is 7/13. The brain tumor has left me wearing sunglasses ALOT. My balance is also way off. In happier news, I am now been blessed with some items I've been wanting to make my life a little easier. Now, as soon as I'm well enough, I can travel the skies again. I have a portable oxygen concentrator! Since the cancer returning, I'm back on oxygen full time. I also got approved to have my insurance cover a power scooter! I am very blessed with an awesome nurse at my insurance who helps get things done. I should have my scooter this upcoming week. My adult stroller can be a pain in the butt. Especially when you have to tell people where to go and you feel like you are yelling just so they can hear where you would like to go.
Here is my life: March 2011 I was told it was my Allergies. Then I was told I had one impressing case of pneumonia I Almost one year ago (April 29) I was told I had lung cancer. So, here it is almost one year later, *I have pneumonia. *I have been to Urgent Care 2 or 3 times. *I had migraine head aches. *I had a PET scan on Friday, April 13. (bum, bum, bum) * I was admitting to the hospital Monday, April 16. * I have had two MRIs, YUCK!!!! * Come to find out I have malignant tumor that jumped up from my lung to surround my pituitary gland. This is why I had the migraines. The tumor is blocking my hormones from doing their job. So, for the time being I'm having replacement therapy. * With this I also found out that the Lung cancer is back and is also in my lymph nodes. * Did you know that is it is very rare that lung cancer would go to your pituitary gland.. * I'm having a bronchoscopy-TOMORROW! This will check out the extent of the lung cancer. *Next week, I will have radiation for the first time on my pituitary gland. *Soon we we find out when I go back to chemotherapy.
It should be interesting to see what they find come tomorrow. Just when you think that insane thing called cancer will blow you mind once in your life...KA POW!!! There it goes again.
Yet, all I can think is that God loves me and I am in his hands. I'm pretty sure my purpose in life is to teach doctors all about anomalies.
Todays songs are: I had to use this one. I love some "The new Mickey Mouse Club"
So, last we left off I still had my baby room. Here is what has happened since. My head is still spinning from it all! My parents, my bro-in-law, my nieces and I went to Hermitage, TN to begin to gather the contents of my house to put into storage. We got to stop in Huntington to see the Beau-Po duo. They joined us on our journey to Hillbilly Hotdog . If you ever go, it's only worthwhile to go to LaSage. Trust me. I did my best to make it a great food tour too. We also stopped in Bowling Green, Kentucky at Culvers. This is a chain out of Wisconsin. When we first arrived, we took care of getting my car up and running. After my dad drove it coasting into Advance Auto parts. Glad I had him to drive it there! It turned out that it only needed a new battery! We then went to Walmart to get my oil changed. That went swimmingly until those pesky tornado sirens started to blow. My nieces didn't like that at all. I didn't like being in Wal-Mart anyways, let alone crushed into the area formerly known as lay-a-way. The tornado blew over and we were on our merry way. We crashed in Mt Juliet. My nieces really enjoyed the indoor pool! We enjoyed some Red Robin (YUM) for dinner. None of us had burgers though...weird. Saturday, I was blessed with SOO many helpers. I also got to see some of my favorite neighbors. There was a great deal of help from my church home The Anchor Fellowship. I also got to see 4 co-workers and friends from Kroll. It was amazing how much we got done. However, for me it was quite overwhelming. I could only be in one place at a time. I got a little sick of being "Kristi" that day. It was quite a chorus :) It still weirds me out that I still don't know what is where. We then headed to my favorite Asian buffet, KOI. Buffalo Wild Wings was our dinner destination. Even though we didn't have enough room for everything, I am glad that I will get to come back and get the rest of my belongings. I look forward to another trip to Nashville and getting to see more of my friends. Sunday, my bro-in-law and nieces headed home. My parents and I went to church. It always feels like home. I'm always glad to see my Anchor family and can't wait to go back! After church, we headed to Calypso. YUM! I love that darn house salad dressing. We then went to meet my "Fairy God Mother." She has been watching my dogs since May. She was bringing my dog Ava for us to take home. After a long hard decision, I decided it would be best for Misha to find a new home. Our Fairy God Mother has agreed to take care of her for as long as needed, if not forever. Misha really loves it there. She even has her eye on a boy pup. His name is Carlton and he is a biter. Don't worry though he is on prozac! She even has playdates scheduled! As much as it saddened me to make this decision, I know it is the right decision. As a person who has volunteered and fostered dogs I felt bad. However, I know Misha wouldn't be the dog she is without Ivory, Ava and I. I am so proud of her. I originally took her in because she was a mill rescue and would not leave her "house." She was such a mess and would have been very difficult to get adopted at that time. Now she is a REAL dog. You are probably wondering where Ivory was. She stayed with a close family friends. They have two rat terriers, Rufus and Ella. She was kinda a hussy while there. She slept with 3 different people. She is a sweet girl! My Mom went to pick Ivory up while I was napping. Ava was laying on my lap. The reaction was the opposite of what I thought it would be. Ava growled at Ivory. Ivory said her hellos properly and then so did Ava. Today, I even caught them laying in the recliner together! Aw, my baby girls. Now onto the medical news.... Wednesday, I went to the dr to get the results of my last procedure. The doctor told me that everything inside looked fine. This was including my organs around my uterus. He said there were fibroids but they looked normal. The washes inside also were normal. However, my mom and I questioned the ones found in the walls on my ultrasound. He said the report could have been wrong. He suggested that he could remove the fibroids. To which I kept questioning, why is it glowing on a PET scan. I asked if he had talked to my Oncologist. He said he would. (I thought he would have before this appointment.) The doctor seemed like he couldn't grasp the concept of why I would want it removed as he kept mentioning how young I was. What if they found nothing. He didn't want to remove it in vain. Well, my Mum and I left there flustered. I called the Doctor's office after lunch and spoke to the nurse. I told her I wanted to have the hysterectomy. I would like him to do it, if not I was going elsewhere. She understood my reasoning and said she would call back. (May I mention that the Gynocologist Oncologists are limited here. One I graduated high school with. How super awkward would THAT have been?) Today (Thursday) they returned my call. After speaking to my Oncologist, he has agreed to do the hysterectomy. Friday I go in to sign the paperwork. Oh crap, I will probably have to do "the cleanse." again. Oh well, in case you are wondering my reasoning here is some of it: 1.) It has to be glowing for a reason. Metabolically active is not good. Despite how much I kept telling myself I have a "happy, shiny uterus." 2.) I would not want to pass this disease on to my hypothetical children. 3.) It's one less place for cancer to go, if it's not already there. 4.) No more periods. YEA! 5.) I would like to live longer so that I can have children...even if it is not the "old fashioned" way. 6.) This is a decision I am at peace with. I don't like having one additional thing to have to worry about. Lung Cancer is enough. 7.) Did I mention no more periods? 8.) There is no prayer of me EVER catching up with the Duggar Family.
I almost forgot. This week, I was supposed to go to Pittsburgh for an appointment and brochoscopy with my Lung Surgeon. After all the craziness of the weekend, I decided to reschedule.
So, may the hysteria begin. It's actually happening! More soon!
In case you didn't hear, I still have my baby room. A.k.a. oven, womb, or uterus. I contacted my doctors office Monday to see if I could just get it out. Due to insurance issues, we had to keep the surgery with a hysterectomy as needed. My doctor got in there, did washes of my uterus and looked around via laproscope. There wasn't anything to biopsy. He said everything looked fine including the organs around. I know he was initially concerned with my being in my child bearing years when discussing a hysterectomy. Of course my outlook was "one less organ to worry about with cancer." The results from the tests they did should be back in 3-7 days. So, maybe the anomaly of it all is I just have a happy, shiny uterus. I may never know. As long as it is NOT cancer, I am content. Also that I won't have to do a colonoscopy prep again anytime in the near future. Yeah, they made me do that to prep for this surgery. In case you have never had this cleansing experience, the preparation is the worst. You have been warned. So, without further ado, I give my favorite version of "Happy Shiny People" by REM.
May the Lord Bless you and keep you!
Next procedure, Bronchoscopy on March 9. Hope to see you soon! Love K*
This is a story about control, my control Control of what I say, control of what I do And this time I'm gonna do it my way- Janet Jackson-Control
Tuesday, I'm having a hysterectomy. Yep, that's right, I'm not going to be able to bear children. AND I am OK with it. Yes, it is heartbreaking but I deeply feel like I am doing the right thing. 1.) I will not pass along cancer in my genes. 2.) I would rather not have one more thing to wonder about. My uterus has been metabolically active for quite awhile. Why risk having cancer in another place? 3.) There is always adoption. 4.) The Duggars have more than made up for any addition I could have added to the world. Besides, I would never be able to catch up with them now without looking like octomom.
I also have to confess the feeling of being less feminine and less desirable have crossed my mind. However, I know I will always be beautiful in the eyes of the Lord. My uterus and cancer do not define me or my femininity. They only make me stronger! My battle may be unique, but it is mine! Am I a greeting card or what?
Shocking as this all is, it is ultimately my decision. I was originally going to have them take it if need be. They were going to go in laproscopically, look around and remove it if need be. I decided rather than have them go in without me totally aware of what was going on, I wanted to have that control over what was occurring. That and I hate things being drawn out forever. I already have too much of that. WAY too much! So, I will be admitted to Mon General for a few days. My bronchoscopy in Pittsburgh has been moved to March 9th.
The night before I went to the doctor, I was watching Dr Quinn. Shocking, I know. (Ok, I confess, I watch it up to four times a day. It is most definitely something I look forward to.) Anyhow, they showed the episode "Best Friends" where Dorothy thinks she is pregnant but actually going through menopause. Anyhow, she winds up having a hysterectomy. I have been having hot flashes. Funny how that show likes to foreshadow lil specs of my life..
I thought i would share my letter to my uterus:
Dear Uterus,
I know God created me to have you included initially. However, you are being evicted! I never wanted to start what people call "becoming a woman." You also have tortured me with this process for over 22 years. You decided to make it even worse, when I entered my thirties. BOO HISS to you, Uterus. I can't deal with you and the mysterious lesions within your walls. Metabolically active things that can be removed, will be. Somehow, I've always known no one would use you as a residence. Despite the amount of times I said I was going to have triplets. It just gives me the chance to make a difference in the life of a child who's parents can't handle the responsibility.
I hope you understand!
In lighter news, I would like to share a few of my favorite youtube videos! ENJOY
The first ones are starring Ms. Kristen Bell!
Sophia Grace and Rosie Show!
I hope life is treating you all well! Some people collect tattoos. I collect scars.
So, wow, it's been a long time since my last blog! With the holidays, and January being full of appointments, it's been a blur! PET Scans, Ultrasounds, new doctors and blood tests. Oh My! As of January 31, I am no longer on oxygen therapy full time. My face feels so naked! My new Pulmonary Specialist thinks I only need to be wearing it when exerting myself and at night. I also had a sleep study done last night. They are concerned that I may have sleep apnea. My breathing is still labored when breathing through my mouth and I purr sometimes. Ok, maybe I snore a little. So many people do! I should hear the results of the sleep study in about two weeks. WARNING FELLAS! Girl Talk! Read at your own risk! My PET Scan found metabolic activity in my uterus. This was also found in a PET Scan in August. I was well aware I had fibroids, but they usually are not metabolically active. I got an ultrasound ( yeah, the one the doctor never tells you about HOW it is done.) The gal seemed a lil concerned and it took longer than my last one I had done. In the report, it mentioned how this could be leiomyosarcoma ( this is yet another rare cancer- CRAP!) So, I wound up with yet another new doctor, a Gynocologist Oncologist after speaking to my Oncologist. My nurse managed to get me an appointment that was this morning. I am having a D & C and biopsies early February 7. I am well aware of the consequences of what this all could mean. Most of my life I had hoped to have kids the "good ole fashioned way." Yet, in the back of my mind, I've always known that I would probably wind up adopting. I rest in the Lord in whatever the outcome is. Regardless, if this is leiomyosarcoma, I say, "Out with it!" The sooner I have answers though the better! These procedures are all being done here locally in Morgantown. Ok, Fellas it's Safe to Read again! Meanwhile, I need to make an appointment to have my regular Bronchoscopy in Pittsburgh with my hottie surgical team. Also, with all of these procedures and all, my maintenance Chemo is on hold. Doctors don't like to perform surgery within two weeks of Chemo. The holidays went by so fast. I apologize for not updating you all sooner. Then again you know how to get ahold of me. Peace and Love to you all! ~K*
