Post Surgery Blahs...

So I'm almost 6 weeks post surgery. Crazy how fast time has flown by. I'm getting along better, but not 100% yet. I am still out of work until October 21. I still need help getting in bed, but I'm almost there. I have had a few different pains, but my doctor said those are normal pains after having such a big surgery. It's so crazy, my stomach is still numb. It's the weirdest feeling. I've been trying to go on walks and small outings to work up my endurance. If I have a big day, I definitely pay for it at the end of the day. 

I'm starting to feel better, physically and emotionally. I have my "moments" where the post surgery blahs kick in, though. I sometimes have a hard time when I see pregnant people. It seems like everyone is getting pregnant now, it's all I see on Facebook. I don't have anything against ones that are pregnant, but its just sometimes hard for me. I guess just realizing that all of this is true and letting reality sink in. I know that it's normal, especially for everything I've gone through, but I feel guilty when I have my "moments". 

I'm just kind of stuck in a rut right now. My forehead is getting bigger aka my hair is thinning more and I'm so pale. I can't believe it's almost October and I can count on 1 hand how many times I went to the pool this summer. That is so not normal for me. I also didn't go to the beach at all. It just sucks cuz my favorite things about California are the sun, beach, and hiking. I have not done any of them. Not by choice, either. 

I try to stay positive, but it's not always easy. There's a Facebook group called "the Desmoidian" that all the members are people with desmoid tumors and their family. Finding that Facebook group has been one of the greatest things. I've never personally met any of them, but I have gotten to know many of them so well that it feels like it. When I'm down, I know I can count on them because they've all been there before too. This coming weekend is the DTRF Research Symposium and Running for Answers in Philadelphia. I'm very sad that I won't be there, but I hope to next year. Watch this to learn more about Running for Answers. Sometimes it feels like no one understands, but these people do. I wish there were some that lived around me. 

The new Katy Perry song "Roar" is one of the most motivating songs. One of the first things I do everyday is listen to that song to try to get in the right mindset everyday. 

I started a new medicine, Neurontin, to hopefully help with the hot flashes. I'm just a little unsure of it because I take 100mg 3x a day for a week. Then 200mg 3x a day for the second week, then 300mg 3x a day starting the 3rd week and continue with that. 900mg a day seems like a bunch of extra junk to be putting into my body. I just started the second week today, so hopefully I start noticing some relief. On top of all of this I am sick now, too.  I have to be careful because the tamoxifen makes my immune system a lot weaker and makes it easier to get infections.

Tomorrow will be a new day...

3 weeks later..

Well, it's been 3 weeks today since my surgery.  I'm a whole new person since my last blog post. I no longer have any of my girl organs. I had my hysterectomy surgery on Thursday, August 15, and was in the hospital until Tuesday, August 20.  Everything went well for the surgery, it actually was quicker than anticipated. 

Lunch right on the ocean at
Malibu with my dad

Tuesday before my surgery, my dad flew out here so we could have a couple days together before I would be out of commission for awhile.  It was his first time out here since I moved here.  It was fun to show him around a bit.  We also went to places that were new for me to see.  It was just what I needed to get my mind off of everything that would be happening in the next few days.  

Getting my hair washed in hospital

My days in the hospital are all kind of a blur because I was on so many pain medicines.  I had a pump where I could press the button every 15 minutes, I was getting injections into my IV every 6 hours, and I was taking pills every 4 hours.  Needless to say, by being on all of those pain meds, I wasn't feeling so well.  It didn't help that I was on a liquid diet for the first several days of being in the hospital.  All of my nurses were so nice and helpful at the hospital.  They definitely made my stay there much better.  But by the end of my hospital stay, I got a horrible sore throat that developed into a cold.  

I wasn't ready to go home from the hospital, I thought I needed one more day.  But since I was getting a cold, my doctor wanted me to go home because it would only get worse with all the germs in the hospital.  I went on walks while in the hospital but always had my IV cart that I could hold onto.  I couldn't walk very far without holding onto the cart.  I also couldn't get myself out of the bed by myself.  But, I had to do what the doctor says.

Just got home from hospital 

The drive home hurt so bad.  California roads suck.  Every little bump in the car felt like we were hitting the biggest pothole ever.  I was very worried about how I was going to walk from the car to my apartment.  The distance that would need to walk was further than any distance I had walked in the hospital.  My dad dropped me off the closest that could to the elevator and then had to walk down the long hallway.  I don't really remember much of the walk, except that it took me awhile.  Once got home, my oversized chair with ottoman became my best friend.  I slept in the chair for over 2 weeks before I could finally get into my bed.  

Thumbs up because my first shower
at home is done and out taking a walk
around my apartment complex

My dad was with me until Friday, August 23, then my mom flew out here the same day to help me during the early stages of my recovery. I couldn't believe how much assistance I needed in everything I did: I couldn't stand up, go to the bathroom, shower, get food or something to drink, nothing.  I can't lift more than 5 pounds for 6 weeks.  Thankfully my parents were both able to come out here and help me.  I would have been so lost without them.  Luis has been great help when he can, but he has to keep working and started school.  

My incision is so big.  I didn't expect it to be so big.  It's 9 inches long.  It goes from one hip to the other.  It is glued together, no stitches.  Therefore, there's many times when it feels like it is ripping open.  It hurts sooo bad.  It still hurts so bad to cough, sneeze, laugh, talk real loud, and lift my legs.  I am finally sleeping in bed again, so that at least is good news.  But, I need assistance getting into bed or getting up.  

I've just kind of been down in the dumps.  I can't believe it's already September.  It hit me so hard how long I've really been out of work and dealing with all of this.  I can't believe that summer is almost over.  I haven't been able to go to the beach, the pool, go hike or do anything that I normally do during the summer.  Instead I've been cooped up in my apartment in lots of pain.  I barely even go outside because it has been so hot.  It never fails that the little bit of time that I'm outside I have a hot flash.  My hot flashes seemed like they had gotten better after my surgery.  But the past 3 days have been horrendous.  I am miserable.  I just get so restless after awhile.  I have completely frozen everyone out of my apartment because been keeping the air so low.  

While my mom was here, I started going on a few "outings".  I've been getting stir crazy constantly in my apartment, so it felt good to get out for a little bit.  However, I get exhausted so fast.  I've been trying to do a little bit everyday to get back into the swing of it. 

Today is my first full day without either of my parents.  My mom left yesterday.  It feels so weird being just me and Marlee.  I have had someone with me for the past 3.5 weeks.  My mom made up lots of food and froze it so that way there's easy meals for Luis and I to prepare while I'm recovering.  I am able to stand up out of the chair on my own now, but it hurts.  If I move too fast, it feels like it's going to rip open.  

Some great news, though....

DEZZIE HAS SHRUNK SOME MORE!!!!!  I can barely even feel the tumor anymore when I feel my abdomen.  The very first measurements of Dezzie were 83 mm x 69 mm and now it's 66 mm x 59 mm!!!  It makes me feel better that even though I'm going through all of this, it is at least working!  And hopefully Dezzie will shrink even more since my body will no longer be creating estrogen!  

NOT HEREDITARY!! and Next Step....

Thank you Auntie Jill, this is
just what I needed!

It's been a crazy time since my last post! Nothing like having anesthesia 2 times within 12 days; I'm becoming a pro at many of these hospital things. I had my colonoscopy last Tuesday and received the news that everything was clear! So... Dezzie is NOT hereditary! As much as that would have made all my other decisions I needed to make easier, I'm ecstatic that it is not! I wouldn't wish any of this on anyone to have to go through! 

I have been wracking my brain trying to figure out what going to do.  It's especially hard when I'm very indecisive when it comes to making decisions.  I've been trying to make a pros and cons list and reaching out for advice from others to try to make a decision.
  

Welllll, I've finally made a decision.  After all of my pain coming back and still being in lots of pain, I decided to have a total hysterectomy.  My oncologist consulted with my fertilization specialist and they decided it wouldn't be a good idea to freeze my eggs either.  I can't afford to have all of that estrogen injected into me.  My health is the most important thing and I would be taking some big risks with the injections.  That made me feel better with my decision knowing that we are at least on the same page.   

I will be having a total hysterectomy August 16.  They will remove my ovaries, uterus, cervix, fallopian tubes, and also scrape the lining to be sure that they have removed all of the endometriosis.  I will be in the hospital 2-5 days.  The nice thing will be that I will not be receiving the Depot Lupron shot anymore after the hysterectomy.  It has definitely kicked in and I have been having HORRENDOUS hot flashes!  I received another of the shot today, so it will be in my system for another month and then will hopefully not be as bad.  I'm just so fed up with all of this.  I'm sick of being in so much pain.  I'm a wreck.  I just would have never expected to be 25 years old and have to go through all of this. 

**Please consider making a donation on my behalf for the Desmoid Tumor Research Foundation. A cure needs to be found!  I have faith that one will be found, just hope its SOONER rather than LATER!  

https://www.dtrf.org/index.php/donate/donate.html

When make a donation, write
"Bracelet" in the "Additional"
Box - $2

I just want to do a quick shout out to Luis for putting up with me through all of this.  I know I can get moody at times because I'm so frustrated but thank you for taking care of me and chauffeuring me around.  Also, thank you to my stepsister Kathy and her family.  I would be lost without you.   

If It's Not One Thing, It's Another...

Since I last wrote, my medical leave has been extended.  I have been on medical leave since June 24 and will be until August 5.  I have had appointments every week with my oncologist for check ups and ultrasounds to check the status of the cysts.  

 

July 3- I was still in lots of pain and had not seen any signs of getting better. Therefore, I received a Depot Lupron shot.  This shot does take at least 1 week- but can take up to 3 weeks to kick in.  The side effects are menopausal symptoms (just like the Tamoxifen).  This shot will completely shut down the functioning of my ovaries (it's just temporary!). Since it will shut them down, it will HOPEFULLY shrink the cysts.  I will receive this shot once a month.

July 10- 6:15 a.m.  I woke up in the worst pain I had ever been in!  I was bent over in so much pain, I felt like I was going to vomit, I was super hot, I was crying I was in so much pain!  After a little bit of time, I was finally able to get the pain under control a little bit.  I had many discussions with my mom and stepsister trying to figure out if I should go to the ETC (the clinic at City of Hope) or wait it out because I already had an ultrasound at 2 and then appointment with my oncologist at 3:30 scheduled.  We decided to wait it out because would get more answers sooner from those appointments than waiting allllllll day in an uncomfortable hospital room.



My ultrasound showed that there was fluid so one of the cysts had partially bursts and showed that the cysts had shrunk some since the last ultrasound.  My oncologist was completely puzzled as to why I was having so much pain, even though they were shrinking.  He decided that it would be wise to do a laparoscopic surgery the next day to take a look around and see if he could see anything.

July 11- I had so many questions and thoughts running through my head the whole day: is this the best decision right now, should I go through with this, if I'm going to eventually need my ovaries removed-why do 2 surgeries, etc.  I had to be at the hospital at 4 p.m. and at about 2 p.m. that day I was so close to calling to cancel it. 



Bring it on!

I knew there was a chance that depending on what he saw that I would wake up with 1 or no ovaries.  I knew that that would be a decision I would need to make soon, but didn't know if it was going to be made for me.  I couldn't snap out of the anesthesia for the longest time, so I had my first experience of staying overnight in a hospital! When I woke up, I was informed that I still had both of my ovaries! It was also discovered that I have endometriosis now.... as well as everything else.  He scraped out as much as he could, but there is still some there.  It's a good thing that I didn't cancel the surgery because I would still be sitting here wondering why I was in so much pain.


Morning after surgery 

I was having quite a bit of pain in the hospital, but I was happy because the pain was all in my incision sites.  I at least knew that that wasn't a permanent pain because before I had no idea if the pain was going to ever end.  

July 17- I had my post op visit with my oncologist and discussed more about the endometriosis.  Unfortunately, endometriosis is caused from Tamoxifen.  However, the Depot Lupron is a treatment for it.  So hopefully that will stop it.  But, unfortunately, will only be able to tell with time.  Keep fingers crossed! My oncologist told me that I am his most exciting patient because nothing about me is normal.  I would normally take that as a compliment....just wish it was in a different situation.  It just sucks that because everything about me is so different, it takes awhile for them to come up with answers and not even sure if those answers will work or not.

In the meantime....

I have a lot of things to think about.  I have met with a fertility specialist about possibly freezing my eggs.  However, the big concern is that for 10 days prior to the procedure, I would have to have daily injections to get my body ready to release enough eggs.  But, these injections would be estrogen.  BIG PROBLEM: I'm avoiding estrogen!  Therefore, the specialist is going to chit chat with my oncologists and see if they can come up with a plan that would work better.  I am awaiting a phone call to hear what they have discussed. 

One thing I'm concerned about is how expensive this whole process is and there's only a 50-60% chance that the eggs would survive.  To me, that's not a very high survival rate.  Then there's also all of the issues that can arise that you see in movies/TV with having a surrogate.  I don't know.   I just don't know what to do.  I do know that MY health is the most important factor right now. 

I will soon have my ovaries removed and then I will have no pains, hopefully, because there will be no cysts or endometriosis.  For as long as I'm on Tamoxifen, those 2 painful side effects will be an issue.  Therefore, I don't have a whole lot of time to make decision whether going to freeze eggs or not.

Sorry this last part is kind of scattered.  I just have so much on my mind, constantly thinking about everything.  I feel like I'm not completely here at times because I drift off thinking about everything.  I just wish that someone else could make these decisions for me... any takers??! ;)

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!!

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!  

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!