Thursday, June 27, 2013

Good and Bad News...

Boy oh boy has it been a crazy week!

I started having pains Sunday afternoon around 3 and never had pain like this before.  I called the after hours doctors number and they told me to take 650 mg of Tylenol.  Let's just say that did NOT work, ONE bit!  I didn't sleep at all during the night due to being in so much pain.  I called my oncologist in the morning to see if could get something stronger, but they needed to evaluate me.  So, I went to hospital around 9:30 Monday morning and I was there until about 8:30 that night.  They didn't know why I was having such horrible pains.  They took all sorts of bloodwork and hooked me up to an IV and ran liquids into me all day, along with being on a Morphine drip all day.  Thankfully the Morphine did help the pain but it did make me nausea after being on it all day.  I had another CT done and had to wait for the results for awhile.  By the end of the day I was very nausea, considering the only thing I had to eat was a banana and had so many different fluids pumped into me.  
"Thumbs up" for shrinkage!!!

Finalllllly got the CT results after waiting for what seemed like ever!  There was some good news with the results! .....drum roll..... 
DEZZIE IS SHRINKING!!!!  (While spending the whole day in the hospital, came up with the name Dezzie for the tumor).  So the crazy high dosage of Tomaxifen must really be working!  But there was also some bad news..... I now have ovarian cysts that have formed on both ovaries.  The one on the right side is about the same size as Dezzie, which would explain all of the pain I'm having.  

Anytime I needed to go to bathroom, had
to take this huge thing with me.  Needed
Kathy's help, too!  Thank you very much,
Kathy!

After getting the results from the CT, I was sent home with morphine tablets.  They worked good at first....until I started getting really really nausea from them.  I was throwing up allllll day Tuesday due to the morphine.  My stepsister, Kathy, called the doctor to try to get something else to help with the nausea... but it didn't help at all.  I was still vomiting due to it.  I couldn't keep any food down or even anything to drink.  I felt like a vegetable doing nothing.  Tuesday-Wednesday are all kind of a blur to me because I was so out of it the whole time. 

I went to another oncologist yesterday for the cysts to figure out what was going to happen with them.  Unfortunately they are considered "functional cysts" so that means if I were to have surgery to have them removed, the chances of them coming back would be great.  Then there would be a problem of a new cyst pushing against an incision and would eventually result in having to get my ovary removed.  One thing that is amazing about City of Hope is that all of the oncologists consult with each other.  This oncologist called my other oncologist twice while I was there about different treatments.  He said it is common for cysts to form when taking Tomaxifen, but they don't want to take me off of the Tomaxifen because it is obviously working since can already tell shrinkage after only 3 weeks!  So as of right now, I got my pain medicine changed so that can hopefully try to tolerate them.  I go back to the doctor on July 3 to have an ultrasound and see if there has been any changes in the sizes of the cysts and check up on the pain.  I am also on medical leave from work now until at least July 8.


I will make it through this..... even if it means no work and with the help of some medicine!  I've never been a big fan of taking pills or relying on medicine but I have quickly learned that it can make a world of difference so I keep taking it!  Especially when can see that there has been improvement and shrinkage already!!


Saturday, June 15, 2013

Rough week...

Well, I have completed a week of treatment.  But it sure has been a rough week!!  

Monday:  I went grocery shopping for the first time since the new estrogen free diet.  It was such a horrible time; I left the store crying.  I never knew there were so many different foods that contain estrogen in them.  I have to avoid eating food that contains estrogen so that I can get this stupid thing shrunk ASAP!


Foods Containing Natural Estrogens
A number of different foods and herbs are sources of natural plant estrogens, and can be very helpful during menopause, The following is a list of some of the best food sources of estrogen. These foods are also high in vitamins, minerals, fiber, and essential fatty acids, and they are low in saturated fat. In other words, they are nutritious and should be part of your diet on a regular basis. 
Alfalfa
Animal flesh (ewwwwwwwww!!)
Anise seed
Apples (I use to eat an apple everyday.  I guess "an apple a day keeps the dr away" isn't so true!)
Baker’s yeast
Barley
Beets
Carrots
Cherries
Chickpeas
Clover
Cowpeas (black- eyed peas)
Cucumbers
Dairy Foods
Dates
Eggs
Eggplant
Fennel
Flaxseeds
Garlic
Hops
Licorice
Oats
Olive oil
Olives
Papaya
Parsley
Peas
Peppers
Plums
Pomegranates
Potatoes (one of my fave foods... I love me some carbs!!)
Pumpkin
Red beans
Red clover
Rhubarb
Rice
Sage
Sesame seeds
Soybean sprouts
Soybeans (I'm lactose intolerant so I use soy milk)
Split peas
Sunflower seeds
Tomatoes
Wheat (everything has wheat flour, even WHITE bread!  tortillas, crackers, cereals, etc)
Yams
Estrogen Inhibiting Foods
If you are suffering from breast cancer, PMS, fibroids, ovarian cysts, and other situations that estrogen might exacerbate, the following estrogen inhibiting foods might be of interest to you.
Berries
Broccoli
Buckwheat
Cabbage
Citrus Foods
Corn
Figs
Fruits (except apples, cherries, dates, pomegranates)
Grapes
Green beans
Melons
Millet
Onions
Pears
Pineapples
Squashes
Tapioca
White rice
White flour

*I looked at this list before going shopping and didn't think it would be too bad until I started looking at the ingredients of everything at the store and it took me by surprise because everything either had wheat flour or soy in it.  Needless to say, I have A LOT more research to do before I go grocery shopping again.  I know it will get easier with time, but right now it is very difficult!


Wednesday:  I was brushing my hair and lost my first wad of hair.  I remember in 6th grade volleyball telling one of my teammates that I wish I could just shave my head and be bald.  I said I would totally rock bald because it was a pain to be a girl and have to do our hair.  But no matter how much I had mentally prepared myself for this, it still is very shocking and emotional.

As if the pain wasn't enough to deal with, the side effects have already begun to hit me. I didn't think it would be so soon.  I feel like a 50 year old woman going through menopause.  These hot flashes are horrendous, especially during the night.  I can't even get comfortable in bed anymore between hot flashes and pain; therefore, I am constantly exhausted, too.  The hot flashes and hair thinning are the 2 that I've noticed so far.  I got my hair cut Thursday and went a little shorter than normal to try to make my hair look as full as can for as long as I can.  

I am currently stuck in that "why me?" stage.  I'm trying to be as positive as I can, but it's just so hard right now.  I just don't understand it.  There's so much to take in and I just can't get my head wrapped around it.  Why me??? Why couldn't I have been the 1 in a million to get something good.... instead of this HORRIBLE thing.  I know this is a normal feeling to go through, but I'm trying to get out of this funk because it doesn't result in anything good.  

But what keeps getting me through everyday is my new tattoo!  It is my daily reminder to keep fighting.  I'm so glad I got my tattoo done while my mom was here so I was able to get "fight" in my mom's handwriting.  I catch myself just staring at it.  



I'm trying to think of a good name to name the tumor, because I hate always saying "tumor".  I guess if I'm going to be living with it for awhile it should have a name.  I'm open to any suggestions.  Here's to hoping for a better next week!  







Thursday, June 6, 2013

Time to get started!

Well, the past 3 weeks have been the looooongest and most drawn out 3 weeks.  As much as I've been hoping for the best, I've had to prepare myself for the worst too.  I've had a rough and VERY stressful 3 weeks.

My mom and I before an MRI
My mom and Aunt Jill flew here from Illinois to be with me during this rough time of going to doctors appointments.  I am so appreciative of all of the love and support I have from all of my family, both at home and in California.  I had an appointment with an oncologist last Friday, May 31, at Cedars Sinai.  I left that night in complete tears, but felt good about the facility.  Then had a horrible experience on Monday.  The doctor kept giving us a complete run around and didn't make us trust him.  But I truly believe everything happens for a reason.  Due to everything that happened on Monday, we looked into finding a new doctor.  We faxed all of my tests and paperwork to City of Hope on Monday and they looked at my file to see which type of oncologist would be the best for me to see: surgeon, medical, or radiological.  They got back to us the next day and scheduled me for an appointment on Thursday.  

My Desmoid Tumor
I had my appointment today with my new doctor at City of Hope.  We left this appointment with tears of joy!  The previous oncologist was a complete joke.  Due to the location of my tumor, surgery is not recommended right now because an artery is going through it.  The oncologist is very hopeful that by being on 2 different medicines, it will shrink the tumor and do surgery later on. Desmoid tumors are very hard, so the medicines should hopefully soften it so that it will be easier to maneuver and move it, if necessary.  It will shrink rather slowly, but I will have an MRI every 3-4 months to check the process and hopefully see shrinkage!  My case will be presented to an entire oncology research team so I will hear the final recommendation in a couple weeks. 

Aunt Jill and I
One concern is that if it is genetic.  I have to schedule a colonoscopy to make sure there are no polyps.  Depending on what the results of that are, would indicate if there could be a genetic link.  Another concern would be about carrying a baby.  This type of tumor is NOT caused by estrogen, but it feeds on it.  Therefore, if got pregnant, the extra estrogen could cause the tumor to grow back.  Before any decisions are made regarding that, would have to make sure that it is not genetic and see what the status of the tumor is.  I have to change my diet, too, to try to avoid any extra intake of estrogen.  I never realized how much estrogen is in everything; everything i enjoy!  These tumors are not curable, just controlled.   



My Mom and I at City of Hope
I started my first treatment tonight (7, yes, SEVEN, pills at a time!) so fingers crossed that this will begin the shrinkage!  I am taking Tamoxifen and Suldinac.  The big side effects to these are similar to menopause: hot flashes and mood swings...sorry Luis :)  

This is going to be a long road, but it's definitely better outcome than what the original oncologist told me.  Everything happens for a reason and even though we found out horrible news last Friday and had a horrible day Monday, it brought us to City of Hope!