Tag Archives: chemotherapy

How My Life Changed Forever (In Numbers)

numbers1

  • 13 months, 8 days – Length of time since the original tumor was found
  • 12 months, 17 days – Length of time since it was officially diagnosed as cervical cancer
  • 1,190 – Number of miles I moved to receive treatment
  • 10 – Number of embryos I have frozen
  • 7 – Number of eggs I have frozen
  • 85% – Chance that they would treat me, and the cancer would be gone
  • 15% – Where I actually fell
  • 6 months, 19 days – Length of time since my re-diagnosis
  • 6 months, 13 days – Length of time since I first heard “incurable” and was told I probably had 10 months to live
  • 5 months, 17 days –  Length of time since my hair first started to fall out from chemo
  • 2 months, 17 days – Length of time since the surgery that may save my life
  • 15 inches – Length of the scar that runs down my abdomen
  • 0 – Number of internal female reproductive organs I have left
  • 643 hours – Conservative estimate of time I’ve spent in a medical facility since November 18, 2011 (that equals about 27 days)
  • 16 – Number of doctors with whom I’ve consulted on this journey
  • 5 – Number of tumors removed
  • 4, 236 – Number of prayers said and messages of gratitude sent out (by me) regarding my health in the last 13 months and 8 days
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The (In)tolerable

I’m almost 8 weeks out of active treatment.  This means that I’m further away from treatment than I spent in treatment.  While my emotions are still reeling, other aspects of me have settled back into what I consider normal.  I was an absolute freak about some things, and the awesome part is that I couldn’t have cared less what people thought in regards to said freakiness.  My utter distaste for and disapproval of certain things was made vocal without hesitation and with complete lack of anything resembling tact.  It was a matter of life or death that these things be removed from my immediate presence… pronto.

Here are a few of those things:

Meat, especially large chunks of it. I was a tad more tolerant of tiny pieces of meat if it was hidden in a casserole or something, but that was mostly because my nutritionist insisted that I eat as much protein as possible.  Otherwise, I would’ve preferred meat be as far away from me as humanly possible (except that for several weeks all I wanted was a spicy chicken sandwich from Wendy’s, but I was too afraid that the spice would hurt my mouth… more on that in a few…).

My water bottle– I had just gotten it shortly before treatment started. I even put a LIVESTRONG band around it as inspiration to stay strong. But something about the signature Camelback mouth piece grossed me out. That thing lived hidden in a cabinet for two months. I wouldn’t use it. I drank out of plastic water bottles and wouldn’t reuse those either… Bleh.

Soup. Ugh, gag me. I tried it at the beginning because ordinarily I’m a soup fan. And my thinking was that it would be easy to eat and would help with hydration. Nope. All that food swimming around together- even now as I remember my feelings about soup back then my face is twisted with disapproval.

Eggs, prepared any way you can think of.  Initially I was fine with them, and I was excited that I had a source of protein that didn’t totally repulse me. Then one day, I set the egg sandwich down and walked away. Away. I think I told my dad that “I just can’t do it anymore.” That was the end of eggs. I would actually say that next to the ‘large chunks of meat’ thing, eggs were the most disgusting thing imaginable. And to add to it:

The smell of eggs cooking. My dad is an avid egg eater.  I had to be in my room with the door closed if he was going to cook them. That smell made me want to pick up my skinny butt and haul it across town.

The smell of almost any other food cooking, especially meats.

The smell of all things fragranced… including lotions, body washes, air fresheners, and candles burning.  I actually took the air freshener out of my car in repulsion and laid it on the driveway as I was heading out one day. I got it on the way back in several hours later and hid it in the basement (months later, the basement still smells delightful).

– Sort of related, but not really, I couldn’t eat anything salty because the chemo caused small sores to develop on my tongue.  Everything’s saltiness was amplified by about 450%. I learned this one day when I had a craving for tortilla chips… it was a sad, sad day.

OK, I didn’t actually think I was going to die from any of those things, but I did get panicky if they were around me, and I would literally leave the table if a slab of meat was anywhere on it (this made going out to eat an adventure for us all).

On the other hand, there were things that I ate during treatment that I hadn’t eaten in years- either because my tastes had changed or because I knew better… you’ll understand what I mean in a minute…

– Jello

– Kraft Mac & Cheese… yes, the stuff in the blue box with the cheese powder packet

– Canned peaches

– Baked potatoes with cheese

– Any kids cereal… this is one of two things I can say with certainty that I would eat an abundance of.  I would easily take down 3 bowls in a sitting (in sharp contrast to the measly two and a half ravioli I had to force down my throat).

Other things I either craved or tolerated well:

– Apple Sauce, this is the other food I could’ve eaten all day every day.

– Bananas

– Soy yogurt

– Soy milk, in my sugary cereal

– Grapes, although towards the end of chemo I had a hard time with these… the acid was too much for my tongue

As far as I can tell, things are back to normal (I’ve even gained 6 pounds!), though I haven’t had soup since then. And I dug out my water bottle- it is my constant companion.

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It’s Been A Long Time

It’s been a while since I’ve visited my blog for any reason.  Don’t get me wrong… I’ve thought about posting something new tons of times, but every time, that inexplicable yet overwhelming feeling washed over me… that feeling that said “Don’t talk about it” or “I’m tired of talking about it” or “There has to be something else to focus on besides cancer”.

I had a Niagara Falls-esque outpour of emotions right about the time my scheduled treatment was ending.  It was Friday, March 2; the last treatment on my calendar- it was internal radiation.  I had already rung the bell for my last chemo treatment and the bell for my last external beam radiation (there is literally a bell that you ring and then everyone cheers… I cried both times I rang those bells… in fact, by the time I got to the bell for external radiation, I’d already been crying for at least 10 minutes). I was looking forward to ringing the bell one more time to celebrate not only my last internal treatment but my last treatment period.  Well, at some point during the treatment, it was determined that my hemoglobin count had dropped again, and my doctor was recommending another blood transfusion.  He said that my counts would likely go up on their own since chemo and radiation were over, but that it might take several weeks. Let’s be clear here- I did not want the transfusion. I had mentally prepared myself for 7 weeks of treatment, NOT 7 weeks and 1 day. My strength and courage had a shelf life of 7 weeks and they had expired.  It was Saturday, the day after the expiration date, and I was talking with my doctor about my options in regards to the transfusion.  I decided that I would get the transfusion so that I could get back to living sooner.

Cue the Falls.

I was a wreck. I was crying uncontrollably. Later my psychologist would tell me that this happens to a lot of cancer patients. They get an “end of treatment” date in their heads and are able to stay strong until then, and when that date comes, they realize that treatment hasn’t really ended.  They remember that for the next 5 years of their lives they will be poked and prodded and scanned regularly to ensure the cancer is actually gone.  With this realization comes the torrential downpour of all the emotions they wouldn’t let themselves experience before “the end of treatment”.  Ok, so at least the erratic, extreme emotions I was having were on the spectrum of normal.  As bizarre as it may sound, I felt so much better hearing this.  I may have felt like an absolute psycho, but at least I was a normal psycho…

The guys filming the documentary came back to film my transfusion and my appointment with Dr. Mutch.  They also interviewed me for several hours one day.  Creative editing aside, I’m interested to see how I come across, given my state of mind at the time.  Yikes is all I have to say.

In a nutshell, that’s all that’s been going on for me since then.  My psychologist is leading me through some activities to help me establish my “New Normal”. It’s exactly what it sounds like.  My life is no longer going to be like it was before, and I have to figure out what will be normal for me now.  All of this is extra interesting given that my “normal” was in the process of being all shaken up when I found out I had cancer in the first place.  If you’ll remember, I had recently moved from Chicago to work in Florida, but quit that job literally days before my diagnosis to move back to the Midwest, the hubs (who I’d secretly been married to for a year, and had known for only a smidgen longer than that) was in Afghanistan, and I was going to move to Germany with him after his deployment. Somebody, please, for the love of all that is good in this world, point out the “normal” part of what my life was doing pre-diagnosis. And then help me figure out my “New Normal”.  Thanks.

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Week Three

Week Two ended with the news that my hemoglobin count was low.  A woman my size should have a count somewhere around 17 or 18. Mine was 8.9. While the phrase “blood transfusion” had been gracefully thrown onto the table, I was relieved to learn that my inability to peel myself out of bed or do anything while I was laying in the bed for that matter was not so much a product of laziness or even depression, but rather my dwindling red blood cell count.  Who knows where they go when they go, but gone they had and left me glued horizontally to anything that would hold me.  Needless to say, I was nervous at the prospect of having someone else’s blood parts dancing in my body. My doctor said that there was nothing I could do to help raise my count on my own, and the one drug that might be able to help happened to fuel cancer cells… so that option was out. The hurry up and wait game… my favorite.

Chemo

On Monday, my friend Michelle went to chemo with me.  As promised, I took a picture of the “hat” I get to pee into every time I pee while I’m there.It fits right in the front of the toilet under the seat.  They use it to measure my urine output. If my output is too low after my first bag of saline, they won’t give me chemotherapy- they’ll give me more saline and ask me to drink more.  If my output is too low after chemotherapy and after my normal second bag of saline, they won’t let me go home until my output is satisfactory.  After I pee, I take my full “hat” out of the toilet and place it back on the cart in the bathroom with the other “hats”. It is glorious.

I had a huge breakdown at chemo this week.  They couldn’t find a vein… again… and when they did find one, it wouldn’t sit still long enough for the nurse to get the needle in it.  I hate this so much that I’m not even comfortable typing about it. So I’m going to be quick here.  They tried once and failed.  I started to pass out in the chair. They had me lean over, and I put my head in my hands down by my knees- the perfect position for crying hysterically as it turns out.  Three weeks in and I was done. Done.  My veins had started silently screaming “F You, needle!” every time one came near them. I certainly didn’t need this added stress.  Through my sobs, I managed to communicate that I didn’t want to get stuck ever again (let alone 3 times a week for the next 4 weeks) and that I wanted the nurses to call whomever needed to be called to get me on the schedule to get a Hohn (pronounced “hone”). A Hohn is a catheter that goes into my chest and has two tubes that hang out. With a Hohn, the nurses just plug the IV into one of the tubes.  They can also take blood this way. They got me an appointment for Wednesday. Hallelujah.

The Hohn

The procedure took about an hour, and I was given a mild sedative.  They also numbed me up locally.  I didn’t feel a thing.  Here is the final product.

The black part is a scab and a stitch. It will be cleaned off when the nurses change the dressing on Monday. I can’t get this thing wet, so showering is quite the adventure. I use Press n Seal, per the nurses’ advice, and tape it down around the edges.  In the first shower, it held up fairly well until the very end.  The part by my armpit came untaped, so my right arm was deemed useless.  There’s not a whole lot I can do about that since the terrain up there is less than flat and smooth.  I’ll have to shower more quickly.

The Blood Transfusion

Again, not something I feel super comfortable talking about, so I’ll be quick. On Thursday, I had internal radiation and had my labs drawn. My hemoglobin count dropped to 8.4 in less than a week. My transfusion was scheduled for the next day. I went in, they gave me saline, and then two bags of red blood cells.  I was there for about 5 hours. I made it very clear that I did not want to see the blood bag and that we needed to do our best to cover the line that went from the bag down into my body.

That, my friends, is an IV pole with a towel over the bag and over the tubes that are resting on top of the box. Below that, out of the shot, I have the tube hidden behind the chair I’m sitting in, and a blanket covers that part that runs up under my shirt into the Hohn. I’m freaky about blood, and I’m not ashamed of it. Moving on…

Mid-treatment Meeting With Dr. Mutch

Friday, after the blood transfusion, I met with Dr. Mutch. He did an exam and said the tumor is dying! He estimated the tumor to be 3cm in size- down from 4.6cm. He also said that much of what he could see appeared to be dead… it was purplish black in color. He commented that while I’m down 7lbs since January 3, I look really good. I met with a dietician on Tuesday, and we made a plan, so my weight should level out.  Anyway, he said he thought I looked good… and he said the cancer was dying!!! Great Great Great!

Since Then

I feel like a whole new person since the transfusion. It’s remarkable how much energy I’d forgotten a normal person has. My appetite has also picked up, and I’ve managed to eat several full, healthy person sized meals. I still don’t feel 100%, but I’ll gladly take the improvement. I went to dinner with Nicole last night, and I have Super Bowl plans today. I almost feel normal. It’s nice.

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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.

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A Turn for the Worse

I have cancer.

I have cancer. I have cancer. I have cancer. I have cancer.

And just in case I forgot that I have cancer, 6 doctors and 3 residents in 9 different appointments over the last 8 days have been quick to remind me that… I do, in fact, have cancer. Got it.

I had an MRI done on Tuesday. Check out my awesome MRI outfit:

The surgery that was scheduled for today was cancelled because they wanted to check out a suspicious lymph node in my groin.  Suspicious in that it was the Hagrid to all my other normal sized wizarding lymph nodes. The MRI confirmed that it was a giant, and Dr. Mutch wanted to have it biopsied.

 —Interesting aside… When Dr. Mutch called to tell me that I had an enlarged lymph node, I asked, “Is it on the left side?” “Yes. How did you know that?” “Because I can feel it in there.” “That’s really odd.” This was the weird dull pain in my lower left abdomen that I thought I was making up! —

Yesterday, I asked my friend Cherie to go to the appointment with me, and I had my lymph node biopsied.  The radiologist was using an ultrasound to find the lymph node in question and to check the blood vessels around it to ensure that a biopsy would be safe.  He pointed it out- on the screen it looked like a big black circle.  I asked if he could find and show me a normal size lymph node so I could see the difference.  He said that healthy lymph nodes wouldn’t show up on an ultrasound… wah wah… This gargantuan thing was almost a perfect sphere, measuring approximately 2.2cm in ever direction.  Normal lymph nodes are smallish and jellybean or almond shaped.

This morning I went to my scheduled endocrinologist (infertility doctor) appointment.  Dr. Cooper specializes in patients with cancer, which is awesome because she hooked me up with an application to an organization called Fertile Hope (fertilehope.org) that helps offset the cost of fertility treatments for cancer patients. Uh…mazing! She talked me through all the options, the most appealing of which is harvesting eggs, fertilizing them and freezing the embryos.  One big huge shining problem with this option is, of course, that the sperm part of my equation is presently in a desert on the exact opposite side of the planet.  I only get one chance to harvest eggs if I have to have radiation and chemotherapy, so while advancements have been made in freezing unfertilized eggs, it’s still better to freeze embryos.

While I was sitting with Dr. Cooper, Dr. Mutch called and asked to see me at 2pm.  My appointment with Dr. Cooper had gone a bit longer than expected, and I had to rush over to Dr. Mutch’s office. He told me then that the biopsy showed cancer in the lymph nodes.  On the one hand, thank god we did the MRI and found it.  On the other hand, SHIT SHIT SHIT SHIT SHIT!!! Bad news bears all the way around this deal. Now all that “maybe” talk with the endocrinologist was real. It was THE option, not a ‘may have to be an option’. Dr. Mutch talked me through what would happen next, and it was all I could do to drown out the expletives coursing through my brain and focus on the important information he was giving me.

All I’d had to eat up until this point was a banana… the beast in my belly was screaming for satiation.  Dr. Mutch’s nurses so kindly opened their kitchen to me and let me make a plate of their catered holiday meal to take on our journey down to the radiation oncologist’s office.  Yep, your counting is correct. That’s 3 different doctors for 3 different reasons in a matter of hours.  I will say that I am impressed with the expediency of this entire staff.  They get stuff done, for sure.

I met with Dr. Grigsby, who apparently is a pretty big name in the radiation oncology world.  He talked me through more specifics of the chemo and radiation, and I made it a point to let him know that we would be waiting for me to do a full fertility cycle  (where a woman has the best odds of producing the most eggs) instead of rushing it or not doing it at all. My odds of having a biological child just dropped dramatically in a matter of hours. There’s no way in hell any doctor is going to tell me that I have to sacrifice that even further if the risk of waiting 2 more weeks to start radiation is relatively low. I told him that I didn’t need to sleep on it or think about it, my decision was final. I was having the full cycle of fertility treatments, and that was that. He said OK and sent me up to have blood work done.

I sat on the floor just outside the waiting room of the lab, where I had one bar of reception (in the waiting room there was no service whatsoever, and I NEEDED cell phone service).  Tears were streaming down my cheeks and a pile of soaked tissues lay on the ground beside me as I waited for my name to be called.  I was speaking out loud to no one in particular at a volume just below normal conversation level- Why is this happening to me?! Why now? What the hell is happening?! This is so unfair.

I finally left the hospital 6 hours after I’d arrived. A very pleasant surprise greeted me at the parking pay station… the validation ticket given to me at radiation oncology covered 100% of the parking costs (most other departments’ validation is only 50%). This was seriously the highlight of my day! I smiled uncontrollably. It’s a small thing, but at this point, I’ll take any smile moments I can get.

My mentor, Michelle, listened to the details of my day on my drive home.  She’s pretty incredible. She and I have never met face to face, but we were introduced via email through another common friend. She is a cervical cancer survivor as well and has gone through the fertility preservation process.  She has been a tremendous comfort for me, a shoulder to lean on, and cry on, and just a general source of relief because she’s been there and made it through to the other side… with a biological child!  She is a source of strength for me, and honestly, part of what makes her so amazing is that until a couple weeks ago, we were strangers. Now she is one of the first people I call with every update, every question, every emotional meltdown, every small victory.  I tell her all the time how grateful I am that she has made herself so available to me, but gratitude doesn’t begin to describe it.

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