Monthly Archives: January 2012

Week One

This past week was particularly rough for me.  So in an effort to keep you all current without being too lengthy, I’m going to try to keep this post brief but informative.

The Egg Retrieval

Friday, January 13, 2012, was the day my “Maybe Babies” were created.  You can imagine my horror when I realized that my procedure was on Friday the 13th… I had some pretty sweet duds though.

The only instructions I received for the procedure were don’t eat after midnight and smell as neutral as possible, the eggs don’t like scented things. My little “Maybe Babies” are sensitive already.

I also had some awesome company before and after the procedure.

Obviously.

And some awesome photo opps…

My doctor was able to get 21 eggs! That’s phenomenal!!! Normal is 14-16. We froze 7 unfertilized eggs and 10 embryos. I’m more than satisfied with these numbers.

Chemo and Radiation

I have been asked to be part of a documentary about HPV and the cancers it causes.  I am the woman presently going through treatment, everyone else has already been through treatment and has come out one way or another. It’s not exactly the film debut I had always imagined, but I’ll take it!

The director, Frederic, and camera guy, Ken, came over Sunday, January 15, to do interviews with me and my dad.  They were here for the better part of the day with their giant lights set up all over our house.  They came back Monday to ride with me to my first chemo and radiation appointments. Chris went with me.

We were there for almost 6 hours (I got a saline drip for 2 hours, steroids and pain meds after that, chemo for just over an hour, and another 2 hours of saline). The kind of chemotherapy I get is called cisplatin.  It’s light sensitive, so they keep it in a brown bag. The nurse likened the bag to a beer bottle…

To keep ourselves occupied, we brought things to do, but it turned out that we didn’t really have that much time.  The hospital had a speaker come speak to all the women getting chemo (I get my treatments at the center for gyncologic cancers only… turns out it’s the Ritz Carlton of chemo treatment centers). We brought lunch in, did some interviews, my oncologist came down to chat with me (and be interviewed), and we played a few games of UNO- and then it was time to go.  The time flew by.  I forgot to take a picture of one of my favorite parts of the day, but I promise to get one tomorrow at my next treatment.  I have to pee in a “hat”. Stay tuned for more on that…

Radiation

A radiation treatment only takes about 15 minutes.  The mold of my torso I showed you earlier, is already in place on the table under a sheet when I get there.  I lay in it with my head toward the machine and the radiation therapists line me up using the blue lines on my stomach and hips. I’m not exactly sure how the machine works, but the whole thing moves around me and those panels on the side close and open. I don’t feel anything and the only sound is a steady, pulsing hum.

My Week

— Warning! This part talks about poop and diarrhea a lot. You have been warned.—

This week was supposed to be my easiest week as far as how I felt.  Well, long story short… I hadn’t pooped in about a week and my belly was literally distended.  I was so bloated that my belly button, which is usually an in-betweeny (it’s an outty that has been pushed in) was starting to pop out. My whole abdomen from ribs to pubes was rock hard. I took Miralax on Sunday, Monday, and Tuesday to no avail. I wasn’t even farting. And for those of you who know me, I’m not not gassy. This was weird. On Tuesday I took a dose of Milk of Magnesia. Nothing. So on Wednesday, when I couldn’t move because my abdomen hurt so bad, I took another dose.  All of this was per my doctors’ recommendations (I consulted with 2 of them). I waited 7 hours after my last dose of Milk of Magnesia (it’s supposed to work in 1/2 – 6 hours) and then sent my dad to CVS to get a liquid glycerin suppository. It worked.

I had been laying on the floor to do the suppository, and no sooner did I remove it than I was climbing up onto the toilet. Straight diarrhea. Which was great that I was emptying out, but then I started gagging.  I grabbed my puke bucket (which has a permanent place next to the toilet these days).  I had what was essentially water coming out of both ends of my body.  Gross. I yelled for my dad and asked him to call Dr. Mutch, my oncologist.  This kind of water loss is bad for healthy people, but it’s especially bad for chemo patients as the chemo is horrible for the kidneys, and we’re supposed to stay very well hydrated. My poor, tech un-savvy dad was on the other side of the bathroom door and couldn’t figure out how to work my iPhone. It wasn’t so funny then, but now it’s hysterical. I finally got my phone and left a message for the doc.

I got into my bed and felt SO MUCH BETTER and was so thankful the camera crew was gone already.

Later that night, I had another bout of diarrhea. This time when I started puking, I got really dizzy and actually contemplated laying on the floor and letting the fluids drain from my body around me. And then I blacked out momentarily. My dad, who can’t hear me when I’m next to him in the car, must have been tuned into me that night because he came running down the hall to the bathroom.  Without missing a beat, he yelled, “I’m coming in!” as he barreled through the doorway.  You know you’re in an awful state when you’re actively diarrhea-ing, your puke bucket has spilled off your lap and your vomit is all over the floor, your stark white granny panties and giant maxi pad are around your knees, you haven’t trimmed up anything since Christmas, and you’re perfectly happy to have your dad cleaning you up in the family bathroom.  This was my Wednesday.

Thursday, I couldn’t get out of bed. I skipped my radiation appointment and went to the 24/7 center instead.  I was so dehydrated, it took 2 nurses 3 tries to find a vein they could access.  I laid in a bed all day being pumped full of saline.  Turns out a water cup at this distance is just too far away when you’re that dehydrated. I’m not generally so helpless, but I sure did wait for someone to come in the room to get that water for me.

After all the saline, my stomach was distended again, so they sent me to get an x-ray to make sure I didn’t have a blockage of some kind. Nothing. The next day, I saw a radiation oncologist, 2 residents, and a nurse who felt, listened, and brainstormed about what the problem could be. No one had any idea. I felt like I was in the middle of an episode of House. Then I suggested that it may be a reaction to my egg retrieval. They called my endocrinologist and sent me over there for an ultrasound after my radiation treatment. BINGO! I have a mild case of Ovarian Hyperstimulation Syndrome… sigh of relief.  Essentially, the fluid from all my recently vacated follicles is draining into my abdomen and not being absorbed properly. It doesn’t happen to everyone after a retrieval, but it’s not super uncommon.  It will resolve itself. Finally, I had an answer for my pregnant-looking belly.  The constipation was something separate, but at least I had an answer to my biggest concern.

Today I feel almost normal. I’m a little bummed that the week that was supposed to be my easy week was miserable, but I have one week under my belt (yay!), and I can’t imagine the rest of treatment will be terribly worse.

Advertisements
Tagged , , , , ,

My Giant Ovaries

I’ve been going to the endocrinologist every day to get blood work and have a transvaginal ultrasound… to put it bluntly, that’s like a dildo that they put a condom on, squirt KY all over, place up in there, and take pictures of my insides.  It’s not as fun as it sounds. So, I do that every day, and every day the nurse calls and tells me my hormone levels and the number of measurable follicles (the sacks that the eggs live in until they’re ready). Here are my follicles yesterday. The right ovary is on the left of the picture.  It has significantly more follicles than the left (the black areas are the follicles).

She then tells me how much of my meds to take in my injections that night. The dose hasn’t changed since the beginning (every night I pump 775 units of drugs into my stomach), but it’s paying off.

Today the nurse called to tell me that I don’t have to do my regular injections anymore! Yay!!! And I don’t have to go in tomorrow for blood work (my veins were so relieved to hear that news!) or an ultrasound! Yay!!! A day off 🙂 Instead of the normal shots, I have to give myself the trigger shot.  This is actually two injections of a medication that tells my ovaries to ovulate.  I have to take the shots at exactly 9:30pm tonight because the drug starts to work at 36 hours and my extraction is Friday morning at 9:30am. Timing is very important.  Tomorrow I don’t have any injections or appointments… I almost don’t know what to do with myself… seriously.

The nurse told me it looks like I have 20 measurable follicles, which is EXACTLY the number I prayed for.  Maybe I should have aimed a little higher… The thing is that there is a chance that not every follicle will have an egg in it, but I’m sure that all of mine do. She also said that my ovaries are giant. Yes. I know this. I know this every time I lay on my stomach and experience discomfort… or when I wear jeans and try to sit… or when I wake up in the morning with lots of pain in my lower abdomen from a full bladder and two enormous ovaries duking it out for prime location.  Yes, I’m aware of the abnormal size of my innards. Here is approximately how big normal ovaries are:

Here are mine right now, not kidding (and they got that way in 9 days):

The weird thing is that I don’t look bloated.  I think my naked stomach looks exactly the same.  But it certainly doesn’t feel the same.

My emotions are certainly not the same either.  My husband and father can attest to this. I’ve been very irritable and very sleepy with no appetite. I also broke down in the endocrinologist’s office today. I sobbed for a good several minutes about how I’m tired of feeling like a pin cushion and coming in every day and how I only get a two day break between fertility treatments and chemo/radiation (that all starts Monday). The nurses were very good with me. After I heard the news that I didn’t have anything to do tomorrow, I felt instantly better (except for the irrational crabbiness).

Tagged , , , , , ,

Radiation Prep

Radiation is coming up, and there’s a lot of prep work.  On December 30, 2011, I went in to have more scans done and have my gold seeds placed.

Suddenly I’m Worth More

“Gold seeds” are used so that the doctors can easily see the cervix (in my case) on scans. They are actually gold, but look more like tiny coils than seeds.  I have three of them, and I get to keep them forever.  I have been permanently vajazzled. My cervix has a grill.

I got another catheter that stayed in the whole time I was at the hospital (about 5 hours). The nurse then  gave me some drug before the procedure that made me very loopy very quickly.  He proceeded to tell me some information that seemed important.  I looked at him, giggled and said, “You should have told me that before you gave me that drug! I have no idea what you just said!” What I remember about the procedure is that there were a lot of people in the room… probably 5 or 6.  The girl holding my hand was young, and I thought I was going to crush her.  My feet were in stirrups, but not the fluff covered ones of a standard exam room.  These looked more like the walking boots you might get after a broken leg, except that they were blue, not black.  I loved those moon boot stirrups.  They allowed me to flex my feet anxiously and push against them. The rest of the procedure is kind of a blur. My radiation oncologist put in the seeds and took two biopsies. I remember that whatever he did last, hurt. But then it was over, and I was in a wheel chair being whisked off to get my scans.

This Stuff Doesn’t Happen Every Day

I had already had a PET-CT and an MRI, but to prepare for radiation, the radiation oncologist needs to do another PET-CT closer to the time of treatment.  He also asked if I would be interested in participating in a study using a brand new technology- a PET-MRI. This is where they do a PET and an MRI simultaneously and then lay the images on top of each other.  I would be the 31st person to use this particular machine.  He asked if I was even a little bit claustrophobic, and upon hearing that I was not, determined that I would be the perfect candidate for the study.  I’d laid in these types of machines before, and they’re not super roomy, but they’re open at the ends and that makes the experience less terrifying. I thought surely this new machine would be similar in structure to the other machines… and it was.

I laid on the table that would later go into the scanner. Normal. Instead of a pillow there was a plastic form for my head. Not normal, but ok. They put the wedge under my knees so my torso would be flat. Normal. A plastic grid was placed over my pelvis (this allows them to “zoom in”) and strapped down. Normal. A second grid was placed on my chest and strapped down, completely locking down my arms. Not normal. A rubber bulb was placed in my right hand for me to squeeze should I need the scan to stop for some reason. Normal. They put headphones on my head to help block out noise and to allow them to communicate with me, which is normal except that the plastic form was a just the tiniest bit too small for my head and the headphones, so my head got a 45 minute hug from those headphones. Not normal. Ok, not too bad so far. The being completely strapped to the table thing and the squeezed head thing were a bit uncomfortable, but overall not too bad. The doctors and nurses continued to ask about my claustrophobia through the entire process, and I still wasn’t sure what the big deal was.  THEN they put the grate over my face. NOT NORMAL. Oh yes. It was like a hockey goalie’s mask locked over my face. I suddenly felt a kinship with Hannibal Lector.

I kept my eyes closed until the scan was over.

Tattoo You

On January 4, 2012, I went in to the radiation lab to have my mold made. The mold will be used during external radiation to ensure that my body is laying in the exact same position every time.  I stripped down to the buff, and then put on a gown and laid down on a table. Underneath me was a trash bag. No joke. In the trash bag was some sort of chemical solution that the radiation therapist likened to foam insulation… the stuff that is liquid and then expands to fill a space.  As I laid there, the solution began to expand and the therapists pushed it against my body. I had to lay very still for a few minutes so the stuff could harden, and then we were done.

For perspective, imagine I am laying on the mold with my head on the white block at the left edge of the picture, the curve of my lower back is where the wrinkle is in the center of the trash bag, my butt is just below that and then you can see where both of my legs would lay toward the right side of the picture. The mold stops mid thigh. That’s it. That’s the finished product. My name is on it, and this mold gets placed in a storage unit with all the other patients’ molds. It all seems so high tech.

After this procedure, the therapists informed me that they would be giving me 4 tiny tattoos so that the lasers would always be in the correct place on my body. I said, “Tattoo, as in forever?” They said, “Yes.”  I said, “No.” They tried to tell me that the tattoos would be small, like freckles, and I wouldn’t even notice them after a while. I informed them that I am 31 years old and pride myself on not having any tattoos. And the first four tattoos I get are most certainly not going to be in the radiation lab. What are my other options? They said about 25% of patients opt out of the tattoos, which is an alarmingly low number to me. As if I need my little black badges of courage on my body forever reminding me of that time I had cancer. The therapists did what they would have done over my freckle tattoos and said that if the tape starts to come off, I need to come back to the lab immediately to have it replaced. I live about 20 minutes from the hospital, and I’m there a lot, I’ll take my chances with inconvenience over a permanent reminder any day. Here’s what they did…

They lined me up perfectly on the table and traced the laser that was shooting at my body. This is exactly where the laser will hit me every time. The clear tape you can see in several places is just to help keep the paint pen from washing off. This is the whole line.

I have one of these on each hip. It’s like a sight from Deer Hunter. There is also clear tape on these.

What’s Next

I’m doing fertility stuff right now and radiation will follow the egg harvest. I’m on the radiation schedule for January 16, and treatment will last for 6 weeks. That may not end up being the exact start date. It all depends on what my endocrinologist says.

Tagged , , , , ,

This Just In

The hubs was granted emergency leave! — Pause for elated cheering— He got to St. Louis on New Years Eve and is here for a week 🙂

It’s wonderful to have someone to curl up with on the couch… and he got to do his part of the fertility process. Yay yay yay for biological babies!

Also, as it turns out, I’m a giant weenie when it comes to giving myself shots in the stomach, and he’s been a huge help with all things injection related.

Here is, roughly, one day’s worth of injection materials:

The first time I tried to give myself a shot, I was determined to just have him in the room as a coach.  I loaded the meds into the syringe, put the little needle on, and pinched an inch just to the left of my belly button. Either my skin suddenly turned to steel (likely) or I wimped out at the last second and barely touched my skin with the needle (unlikely).  Whichever it was, I looked up at him pathetically and said, “It won’t go in my skin.” He giggled knowingly, gave me some tips, and I proceeded to stare at my pinched inch for about a full minute… I’ve heard that makes the process easier. He took the syringe from me and plunked it right through the skin.  I didn’t feel a thing. I was able to do the second shot by myself (yay!).  The second day (I had to do 3 injections), he did the first one, he started the second one and I finished it, and I did the third one- like.a.pro. (except for all the air I shot under my skin…). My point is, I’m grateful that he’s here for a lot of reasons, and injection training is the top one every night at 6:30.

Tagged ,