Post #3: Radiation

by karen | Nov 19, 2014 | Cancer

Radiation was my main modality of treatment. My chemo drug, cisplatin, was used to support the radiation. Before they could start radiation, I had to get a “map” done so they would know where to radiate. This meant I went to a certain hospital with a cancer center in it. After I gave blood (I felt like I was always giving blood) I got undressed from the waist down (sadly this becomes a normal routine…told you throw modesty out the window with cervical cancer) and laid on a table. They 1st took a CT Scan, then administered contrast (made me feel really warm and like I was peeing…I kid you not…for only about 2mins) in through an IV that was in my arm and sent me through a machine that would produce an image. Once they received the image, they went to work creating a map. They started with little stickers on my hips and my “lady parts” (told you TMI) then once they guaranteed a good line they removed the stickers actually tattooed 3 little dots (one on either side of my hips (not my lady parts) and one on just above my “lady parts” close to my pubic bone) for them to line up me up for radiation treatment. They also took a mold of my body so when I laid down for treatment it was the same each time. Everything had to be exact. This process lasted a few hours. I had this mapping process done twice. Once at the beginning and then again mid way through treatment.

My 1st round of radiation was external. Every day I would go to a facility in Austin for treatment. The facility you go to is based off your location. Since I live south, I went to the south location which is good because rumor has it they are the best and I would agree. (side note: everyone that worked at this facility was top notch. They were very helpful with answering questions I would have. They knew what was going on in my life and asked about it. There were even interns in from Texas State and they were wonderful. I’m not sure how their system works but I got to see many of the staff when I would do mapping and even in my BrachyTherapy; a familiar face never hurts). You also have to schedule a time you would come every day. They like for it to be the same time every day, however they will work around your chemo treatments and if a random meeting should pop up. I chose 3pm for the weekdays and 7am for Fridays when I would be getting chemotherapy.

Radiation was pretty much the same each time. I would sign in, wait until they called me back to the treatment room. Once in the treatment room (the treatment room is where they administer the radiation. The room has 6ft thick concrete walls to protect those administering the radiation), I would remove my shoes and pull down my pants around my hips exposing my “lady parts” (mainly my tattooed dots) and lay on my mold which was on a table. They lined me up with the lasers that were on the wall They covered me with a blanket to preserve some modesty and then covered me with along blanket (my request) because it was cold in there. Treatment takes about 15-20mins. They did a CT Scan EVERY time before they administered radiation.  I laid on a table and a MASSIVE machine rotated around me delivering the external radiation to my tumor. Once it was done with its 2 rotations, I gathered my things and left. Best part….there was a candy jar with jolly ranchers and chocolate on the way out. While the jolly ranchers started to be less appealing (thanks to chemo) the chocolate still tasted good. I had 23-ish treatments like this and then 3 treatments where the laser focused on the side of my tumor that was attached to “the wall”.

There were a few times (brace yourself for massive TMI…but like I said, I have no modesty left when it comes to this stuff) when I was unable to get treatment (they would do a CT Scan then make the call) due to gas bubbles in my rectum (talk about “bubble butt”). Since the rectum wall and vaginal wall are REALLY close the gas bubbles can cause the tumor to move which means the CT Scan doesn’t match the mapping and if they were to administer radiation, then it could “miss” and hit other areas causing damage to other parts of my body. How do you get gas bubbles…honestly I’m not really sure, but my doctor thinks that it is caused by all the fiber in my diet…aka fruits and veggies, you know HEALTHY food! WTF? Fueling your body with good nutrition (not processed stuff) when it is going through epic stuff sounds logical to me! What am I suppose to eat? It was hard not to eat my normal way. Put it this way, my doctor applauded me for eating a gluten free pizza. I was open to trying things until chemo would ruin the taste (I don’t care to ever have oatmeal again). I was to stay away from salads…one of my favorite meals is a good protein and veggie packed salad (Cobber from Central Market is my all time favorite…the steak salad is a close 2nd). PLUS since I was doing chemo, my taste (and smell) of a variety of foods was ruined, so finding something that made it past the smell and actually tasted good was hard. There were many nights when I just ate a small piece of protein for fear of not getting treated the next day due to the chances of possible gas bubbles. In addition to not being able to eat like I was on a variety of OTC (over the counter) meds to help regulate my bowel movements. In addition to my anti-naseau meds that I took every 6 hours, I also took stool softners and gas X. I have had many discussions about my bowel movements and all the gross details that go with it. Heck I have had to expose my lady parts to a variety of people whats a discussion about BMs going to hurt (little did I know it could only get worse….I’ll talk more about that in my post about BrachyTherapy).

Side effects of radiation accumulate over time meaning things are not bad in the beginning but they add up and start to suck towards the end. The Texas Oncology Website describes it perfectly, “Although patients do not feel anything while receiving radiation treatment, the effects of radiation gradually build up over time. Many patients become tired as treatment continues. It is also common for patients to experience loose stools or diarrhea. Urination may become more frequent or uncomfortable. Some patients may experience loss of pubic hair or irritation of the skin. After the radiation therapy is completed, the vagina can become narrower and less flexible. This can make sexual relations painful and make future pelvic examinations difficult. Patients are often taught how to use a dilator to maintain the pliability of the vagina. Finally, radiation therapy to the pelvis can stop the ovaries from functioning, thereby causing younger women to enter menopause early.” I experienced EVERY single one of these.

Silver Lining to having your pelvic area radiated. No longer need to have laser hair removal.

However it could be worse….I could of had to wear this during radiation:

Last but not least, I did go through what they call “radiation induced menopause”. I had (still have) the hot flashes and all. These are weird. You are REALLY hot one min and then fine the next. Its just as your mom jokes about. For me, the heat would start in my shoulders and rise up to my neck. Jackets off, Jackets on, covers off, covers on…back and forth. Since I am young I will have to have hormones to help with this balance. What does that look like? I’m not sure yet. I just had my follow up with my oncologist today at 1:30pm. He did put me on a hormone but honestly I’m drawing a blank on the name, but as soon as I pick it up from Walgreens I’ll let you know.

I was informed today that I would do multiple follow ups for the first year after I will have follow ups every 3 months, year 2 every 4 months and the the last 3 years every 6 months.

Things I Was Glad I Did & Things I Wish I Would Have Done (no particular order):

• MODESTY. Leave it at the door, especially if you have cervical cancer. They are going to radiate your “lady parts” there is lots that come with this. For starters you have to drop trow for a variety of people, get over it.
• EMBARRASSMENT. You are going to have awkward conversations about stools, diarrhea, pubic areas, sex, irritations, etc. If you want to feel better and get better…GET OVER IT and have those conversations.
• BURNING. Your skin and inside of the rectum is going to get burned. Talk to your doctor early on about this. There are certain creams you can put on the burns (external and internal) that will help sooth them because they will hurt and itch.
• PELVIC PROTECTION. There is something “extra” your doc can do that will protect the bones in your hips. Since I got radiated in my hip area my bones are weaker in that area and can be subject to breaking. I’m kicking myself for what it is called but talk to your radiologist about it. My radiologist went to battle with my insurance to get it covered for me.

Post #1: Diagnoses

by karen | Nov 17, 2014 | Cancer

Short Version

I had Stage 2B Cervical Cancer that was treated with radiation, chemotherapy, and brachytherapy.

Medium Version

I have been diagnosed with Stage 2b cervical cancer. I had 1st opinions (2 different gynecologic oncologist in Austin), 2nd opinions (2 different gynecologic oncologist at MD Anderson), a physical, an MRI, a PET Scan, LOTS of ultrasounds, LOTS of blood test, a round (14 days) of IVF where eggs were extracted/harvested and frozen. All these test were used to rule out a hysterectomy and to move forward with a 8-10 week radiation and chemotherapy treatment plan topping off with 5rds (7 attempts) of brachytherapy. Since radiation was required everyday and chemo 1x/wk (weekends off of both treatment modalities), then 5 Breachytherapy treatments, I decided to move my treatment to Austin (vs staying at MD Anderson which is 3 hours away in Houston) so I could continue with my lifestyle of torturing and training myself and others. I have a great medical team to help me with this treatment plan, but they are nothing compared to my “personal team” that kept me sane, motivated and smiling.

Longer Version

WARNING! I’m going to give the good the bad and the ugly and  A LOT of TMI. I am making this public with the desire to help someone who might be in my shoes.

I entered January 2014 with a lot of random bleeding (told you TMI). Jan. 23rd‘s annual trip to the OBGYN resulted in an abnormal pap smear. Feb. 5th, I went back for a biopsy of the abnormal cells. Feb. 12th my OBGYN himself called me personally and informed me I have been diagnosed with “endocervical adenocarcinoma, at least in situ”. Blonde terms…Stage 0 cervical cancer. Meaning the cells were acting up, and once they passed through a certain membrane they would be considered cancerous cells.  He told me to call and referred me to a gynecologic oncologist. That doc called me before I had the chance to call him, however they didn’t take my insurance, I was pain free and the bleeding has slowed if not stopped. PLUS The Open was coming up and that was my focus (I really cleaned up my eating behaviors and upped my training). Can we say denial?!

My nights quickly turned into internet searches of any word combinations on anything dealing with “endocervical adenocarcinoma, at least in situ”. I was a frequent visitor of Web MD thinking they may have written things wrong. I joined chat rooms and constantly read long threads of other ladies situations.

Things got better in March & April. I DOMINATED The Open, placing 4th in the region and 68th in the world! Hard work and dedication pays off! Bleeding was sporadic and low but manageable. Nothing a tampon couldn’t save.

May 11th (Mother’s Day) the bleeding returned in a much heavier and frequent manner and didn’t stop. May 14th I called my OBGYN’s office stating I think I need to take action on this  (they agreed) and what do I need to do. They recommend another gynecologic oncologist…and though LOTS of phone calls and messages, I discovered they didn’t take my insurance either and neither did the ones they suggested or the ones they suggested. I called my OBGYN back on May 21st asking what I needed to ask these doctors/oncologist, and the nurse said I should just look on my insurance website and  find an oncologist “that will do a scan”. Awesome, on my own to find my own Oncologist…have I mentioned I have NEVER broken a bone? All the Gynecologic Oncologist places on my insurance’s website  have the same phone number…different locations, but same phone numbers. It was a mess.

May 22nd – 25th I had to go compete in Regionals,. I was miserable. I couldn’t stop bleeding to save my life. This left me tired and VERY fatigued mentally and physically. Resulting in a horrible placement at Regionals. Even after all the hard work I had put in.

After regionals was over I made an appt with a PCP (Primary Care Physician) for a physical for May 27th because I knew I could get blood work for free through that and I wanted to see if my results were okay. Once the doc doing the physical  got to the questions about my “female stuff” and I told her what my OBGYN said (endocervical adenocarcinoma, at least in situ), she immediately got on the phone and started calling oncologist from the “physician side” and tried to get me in with a certain oncologist, who didn’t take my insurance. I gave her the name and number of a gynecologist from my insurance’s online list and she was able to call that number and get me an appt for June 2nd, but not without a battle from my insurance and others in the medical field.

On June 2nd I met with an Oncologist, but not till I spoke with a financial advisor, nurse navigator, then a chaplain (all 3 not by choice). The doc (and his assistant), did a physical exam on me then left the room, then 4 people came back in to inform me that pretty much I was going to have a hysterectomy which meant giving birth to kids was not possible for me. I was 29 years old. I’m not married and I don’t have kids and I was just told that I wasn’t going to be able to have kids. I was a wreck. This doc ordered a MRI and for me to return in 2 weeks for a follow up. Then the chaplain came back in the room. She was nice but I really didn’t care to have her in there…I didn’t know her so I didn’t care to talk about what just happened with her. I gather my things, checked out then went to coach, because that is what I do, plus it helped keep my mind off the horrible news. I then had to go home and tell my boyfriend, that was rough. I kept him in the dark about all this, including the diagnoses in January, so this was a shock to him.

I decided that I needed a 2nd opinion so I started to try to get into MD Anderson (a well known hospital in Houston that focuses on cancer diagnoses/treatments), that was a horrible process.

On June 13th after a few battles with the insurance company, 1 almost 2 reschedules and 1 power outage delaying the appointment, I had my 1st ever MRI (in Austin). I then decided to call my parents and tell them what was going on. They were NOT happy with my desire to try to handle this on my own because I also kept them in the dark. I BEGGED them not to tell anyone (including family) and to keep this off social media.  The following Tuesday, June 17th I saw my 2nd Oncologist since the 1st one was out to town. This guy was really nice and explained the MRI, but couldn’t tell me much about treatment plans, etc since he hadn’t done a physical exam. The MRI confirmed I had a tumor the size of a golf ball in my cervix.

My nightly (really any free time I had) internet searches got really intense. I was now looking at sights for cervical cancer, tumors, hysterectomy, etc. I even googled “crossfit Cervical Cancer” and 2 ladies stories came up (one had a hysterectomy and one went through chemo-radiation), exercise and cervical cancer. I looked at all different arrangement of words with the words “cervical cancer”.

I FINALLY got into MD Anderson and I ask my parents to join me for an appointment on June 24th. And yet again because of the medical field and insurance I only got to verbally speak to the Oncologist, not do an exam (which delayed my treatment by a month). At MD Anderson you have to have your deductible paid in full before you even speak to a doctor. During my meeting with the 1st doc at MD Anderson, we (my parents and myself) went over what exactly cervical cancer is a possible treatment plans of what could possibly happen. Alot of what ifs, etc. I was then asked to come back on a Wednesday (losing track of dates) for blood work (6am), PET Scan (10am) and Ultra Sounds (2 different kinds) then meet with a fertility doctor (wonderful lady).

At this appointment, I decided to move forward with IVF. With this process, I would have my eggs “harvested” and frozen for use later when I am ready to become a parent. With my cancer diagnoses I could apply for a program (based out of Austin) where the cost would be about a 1/4th of the normal IVF. I applied and was accepted. I returned later on to MD Anderson to begin IVF and do all the pre testing stuff and meet with a nurse (wonderful lady) to show me how to do the shots etc. After 14 days of 2 shots per night, 6 different blood draws and 6 different ultrasounds between MD Anderson and a facility in ATX my eggs were retrieved on June 24th.

On June 22nd I met with my 4th oncologist (2nd one at MD Anderson because the original doc I saw at MD Anderson doesn’t normally treat patients, so she sent me to another oncologist). This new doc had all the data from previous docs and test (MRI, Ultrasounds, blood work) and had already presented my case to a medical board because she was unclear on a margin of my tumor. She couldn’t guarantee a clear margin with a hysterectomy (meaning if she removed the tumor there could still be some invisible cells that could spread the cancer into other areas of my body)  and was thinking chemo-radiation was a better option.  On June 22nd she did an exam that put me in tears (painful physically leaving me with lots of bleeding) and confirmed that she wouldn’t perform a hysterectomy. The OR we had booked for June 25th was cancelled. She connected me to MD Anderson’s radiology department for an appointment. I visited with that radiologist on June 24th, after I had my eggs retrieved/harvested. Since radiation was required every day and chemotherapy was going to be 1x/wk for 5-6 weeks, then topped off with BrachyTherapy (internal radiation) I decided to return to a doctor in Austin to move forward with treatment (detailed blog post regarding treatment is coming) and I couldn’t have been happier.

June 30th, I got in to see the oncologist who explained my MRI to me months ago. He did another painful exam and tolerated my very forceful verbal desire to get things started ASAP (I mean I was diagnosed in January and here it was end of June and I still hadn’t started treatment). He made some phone calls and got me in to see a radiologist in Austin (my 2nd radiologist) the following day, June 31st. I had chemo class and my radiology mapping done on Aug. 1st. I was suppose to have a port (small medical appliance that is installed beneath the skin which allows chemo to be delivered versus having to find and stick a vein every time) put in for chemo on August 6th and start chemo on Aug. 15th…they cancelled that and got me in for my first (of 5-6) chemo sessions on Aug. 6th. It wasn’t until Oct.23rd, 2014 that I received my last treatment.

Since I want my experience to help others in my situations, and this post is already super long, I have broken down my experience into different post that will be posted this week. PLEASE PLEASE PLEASE don’t hesitate to share this (and the upcoming post) or pass along my contact info to others who might benefit from it.

Things I Was Glad I Did & Things I Wish I Would Have Done (no particular order):

• HEALTH INSURANCE. I don’t care how healthy you think you are, make sure you have this, I don’t care who you are. I took darn good care of myself and look what happened to me.
• TAKE NOTES. Take a pad and paper with you to ALL doctor visits and write down everything, even if you don’t know what it is; you can look it up later. No matter what you think, you are not going to remember everything, there is tooooooo much emotion involved. They can also draw pictures on this paper incase you are a visual learner…trust me I have a pic drawn on a barf bag because I went empty handed to my 1st appt. This is also a great notepad to have handy for when you think of questions at home and want to ask at your next appt.
• ASK QUESTIONS. I know I have had all my lady parts for 30 years, but I wasn’t really sure of what the purpose was or where things are located. Ask the embarrassing questions. If you have cancer in your “lady parts”…kiss your modesty goodbye and do it early on. It makes for asking questions easier.
• RESEARCH the internet, but don’t let it consume or control you because you will diagnose yourself with “death” being the only answer, and it isn’t, duh.
• ORGANIZATION. Start a binder (or some sort of organizational system) for all the paperwork and bills you are going to get. This whole billing process will make you CRAZY!  Matching up EOBs with Bills is rough. You will attend one appt and get a bill from 3 different places. I have 2 binders. A packed 2” one for billing and a pact 2” one for copies of all the forms you will fill out and for any handout they give you.
• COPIES….Get a copy of EVERYTHING especially if you sign it. GET A COPY, GET A COPY, GET A COPY. Getting copies of test results is also helpful. Many times I went to appts and my “paper work” hadn’t been sent over or processed yet, but because I had a copy we were able to move forward in some situations.
• SUPPORT. Create a support system early on; friends, family, routine. You CANNOT do this alone, trust me, I tried.

Post #2: IVF

by karen | Nov 17, 2014 | Cancer

(This was written shortly after having the IVF process)

I decided to do IVF just so I could have that option down the road. I didn’t want to get down the road a few years and wish I would have done that. IVF for those that don’t know is In Vitro Fertilization…it is a way for me to preserve fertility since I will not be able to carry a child. Or as my mom puts it, if she marries rich or wins the lottery she can have a surrogate.

Once I committed to this process, I had a team of people helping me (for the most part, really just this one lady and she was in Houston, but she was awesome and a great communicator). I had 3 boxes of drugs on my door in no time and was able to start ASAP which was good especially since I’m now having to go radiation and my ovaries will be worthless. Radiation is going to “fry” my ovaries which means no eggs are going to be produced. My IVF cycle lasted 14 Days. I had an initial appointment with my fertility doctor in Houston on a Tuesday, by Friday I had 3 boxes of drugs on my doorstep and was giving myself shots that evening. I also had to find a facility/person/doctor that could monitor me from ATX so I didn’t have to drive to Houston every other day.

It went like this, every other day I would go in for blood work at 7am and then have an ultrasound at 2 or 3pm -ish. (These appointments were in ATX and Houston depending on my schedule and when I could go to Houston). These results were sent to my fertility doctor in Houston and that evening I was sent a formula for a shot mixture. In the evenings (every day) I would mix my shot and give myself a shot or 2 in the abdomen. Was it hard to give myself shots? No, but it I’m glad I don’t have to do it every day, plus if you think bigger picture and the reason it was a little bit easier. In all this I ran out some drug that had to be kept cold so they had to call it in. Only special pharmacies carry fertility drugs. In ATX it would cost me 2x the amount as it would in Houston. My precious mom picked up my drugs in Houston and brought them to me so I could use them that evening. She drove from Beaumont to Austin and back without thinking twice. Did I mention the drugs had to be refrigerated? Such a mess.

On July 22nd I gave myself my final shot. The timing of this shot was IMPORTANT. Once this shot was given my eggs had to be retrieved within 36 hours. My shot was given at 9:30pm and retrieved on the morning of June 24th. They told me that I needed a driver so my wonderful boyfriend drove to Houston with me and my ever so supportive mother drove over from BMT to be with me during the process/harvest/retrieval. The morning of we (mom and me) went to the hospital, I was prepped, and then they took me back and explained how this was going to work. Next thing I knew I was waking up post surgery/retrieval/harvest. They retrieved 10 and froze 7 eggs.

After finally coming too I had no problem moving. I got up, got dressed and went across the street to MD Anderson where and met with a radiologist to discuss more treatment. I was more sore from the radiologist’s exam than I was from the IVF procedure. I could of driven home, but my wonderful boyfriend insist he drive…which is good because I HATE driving. So I slept. I don’t recall any side effects from the process and I’m still glad I did it.

CONFESSION #1: I’m actually VERY happy for my friends that are pregnant and/or have little ones running around. I’m not bitter my situation. Yes I did want to carry children, there is no lie in that. I’m just going to have to find another way to be a mother, starting with fur babies.

CONFESSION #2: I had heard of people gaining LOTS of weight with IVF and I was scared I would so I took a picture of my abdomen after all shots. Conclusion, I didn’t gain any weight.

Things I Was Glad I Did & Things I Wish I Would Have Done (no particular order):

• ACCEPTANCE. This is a tough one. Not being able to carry a child is a tough one to swallow and it doesn’t get easier. Come up with an answer that you can respond with to people with when they ask or make comments that “gut punch” you. Comments like “when you have kids…” sting, even though there are options like adoption and surrogacy…it still stings; Inhale, exhale, then respond, 99% of the time, they don’t know what is going on so don’t snap at them. As a woman (especially a southern belle) we tend to think that your main purpose on this earth is to produce children “carry on the human race”, but there is more. Thoughts like, what is going to be left of me when I’m gone, who is going to carry on my “legacy”? I’m unmarried and cannot produce kids, who wants me? These are just a few things/thoughts I still struggle with, so I don’t have answers. Just know that these feelings and thoughts will occur and it isn’t going to be easy.

• COST. This wasn’t a cheap procedure and you need to be prepared for that. Don’t hesitate to ask your doctor if there are any programs you could apply for that will help with cost. If it wasn’t for this program I wouldn’t have been able to have the option/chance to do this. No matter what route you go be aggressive in asking for an exact cost (I wasn’t). What exactly will this assistance program cover? What will I be responsible for? Can I use insurance? I found out the hard way that there is a difference in being treated at a hospital and and outpatient facility. My ultrasounds were DOUBLE the cost at MD Anderson versus at the outpatient facility here in ATX because MD Anderson is attached to a hospital and there are a lot of fees that come with that.

Again…any questions don’t hesitate to ask me…better yet, if this post can help someone, please pass it along or my contact info!