Tag Archives: doctor

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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High Fives for Everyone

Dr. Mutch and I have a pretty rad relationship.  He calls and emails me on a somewhat regular basis (including my birthday!).  I have his office number, his cell number, and his home number.  He calls himself by his first name almost every time he calls me and then corrects it to “Dr. Mutch”.  He’s come to expect my high fives when things are going well, and he seems to genuinely like me.  I like that.

Last week I went in for my scans and my regular physical exam with Dr. Mutch.  The preliminary results from the scan showed that things were “stable”… which means that everything is either the same size or has shrunk somewhat.  “Stable” suggests that the chemo is working.  “Stable” is good.  “Shrinking” would be better, of course, but we’ll celebrate the small victories just the same.

Part of this next blurb may be an over-share (as if I don’t have a history of that), but it’s all in the name of a good story.  Here goes.  I’m in the exam room, undressed from the waist down, laying on the table, feet in stirrups.  Dr. Mutch goes in to have a feel around and says, with his finger still inside my body, and sounding as though he’d just found a 100 bill in the laundry, “Oh! This is smaller! You’re responding!” I said, “Seriously?!” as an enormous smile devoured my face.  He said, “Yes! Really!” I closed my eyes and thrust my clenched fists into the air as if I’d just won the Boston Marathon. I then looked over his head as he continued to manually survey my goods.  The resident and two nurses standing in the back of the room were cheering wildly, clapping and smiling right along with me.  As they left the exam room, I got a high five from Dr. Mutch and the resident. This is the greatest medical team on the planet, I think.  Well, at least when it comes to celebrating awesomeness.  And, let me tell you, there’s an awful lot of awesome to celebrate right here.

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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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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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Emotional Rollercoaster

Today was, hands down, the worst day emotionally so far.  Yesterday I went and did my pre-op exam and had a consultation with my oncologist. The consultation, unbeknownst to me, was actually an exam and a consultation.  Turns out you can still have a mild panic attack even if you’re on Xanax :-/  Not only did Dr. Mutch spring the physical exam on me, he went one step further and took the exam to an all new orifice.  Nice to meet you too, sir.  What was quasi-humorous, was that when I asked the nurse to stay in the room with me while I got dressed, she said, “I’ll stand on the other side of the curtain to give you some privacy.” What?! You just watched the doctor do a VERY thorough exam of my undercarriage. I think we’re past privacy.

I was still a bit shaky when we sat down in Dr. Mutch’s office.  My dad and sister-in-law were with me.  I will say that, initially, I would’ve rather eaten live cobras while standing naked on an iceberg than discuss my vagina with my father.  But there’s a lot of va-jay-jay talk going on these days, and I’ve come to terms with the probability that my dad already knows I have one… so… I guess it’s no big deal if he hears how my doctor plans to fix it.  Admittedly, it does make me cringe ever so slightly when he uses the word “vagina” and is referencing mine.  But he is an integral part of my support system, so I suppose a slight cringe every now and then is tolerable.

Right. So we sat across from Dr. Mutch for almost an hour as he went over  the various procedures (complete with sketches) that might take place.   That’s right, I won’t know if I have a uterus until I wake up from surgery.  I did love, though, that he shared my case with at least 2 other fabulous surgeons- one in his practice, the other at Memorial in New York.  He also presented my case to a tumor board.  My case, apparently, is super interesting given some important factors:

 1. Technically I have stage 1b2 cancer, which means, essentially, that it is confined to the cervix and is over 4cm in size.  And at 4.6cm it’s very close to 1b1 (a tumor that is between 2 and 4cm in size).

2. I want to have kids in a big time serious way.

He said that ordinarily with 1b2 cervical cancer, they would do a radical hysterectomy and call it a day, but given the 2 factors mentioned above, my case to have a trachelectomy (where just the cervix is removed and is generally not done on 1b2 patients) is a hot topic.  It sounded like all 3 surgeons would approach the surgery the same way:  Test the margins, if they’re clear, do the trachelectomy, if they’re not, do the hysterectomy.  And in either case, there’s a chance I’ll have to have radiation anyway.  I’m fairly content with this, given that he and 2 other surgeons said the same thing.  I have an appointment with my second opinion doctor on Tuesday, just for peace of mind.

So about today… I’m sad and angry and scared and overwhelmed.  I feel so out of control of my body.  Ultimately I know that all of this is happening with perfect timing and for good reason, but right now I’m in my bed, crying, and typing about it.  A less rational version of me would scream about how unfair this all is. And why me?  And why now? But I’m trying so hard to hold on to my spiritual beliefs. To stay strong and to know that eventually I will feel normal again.  That some of life’s experiences may not go exactly as I’ve always imagined they would, and that’s ok.  Tears make those concepts slippery, though. And right now, it’s very slippery out there.

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The Doctor Is In

Ok. A few weeks ago I was kicking my own butt at one of those boot camp classes.  I was pushing myself to do one more lunge, one more push-up, one more lap… I was flipping tires and jumping rope like it was my job. By the end of each class, it was all I could do to not hurl all over the place.  But it felt good.

I had recently turned in my resignation at my job- teaching 3rd grade at a charter school in Florida- to move back to Chicago where I had planned to coach trapeze again and find work as a tutor.  So it was only 4 months after I started the job… so what? My husband is in the army, and he’s stationed in Germany.  He recently got a job with more normal business hours- a job that would be more conducive for a family.  I was leaving Florida so that I could spend my last 7 or 8 months in the states around my family and friends.

And…?

I had a follow up pap smear scheduled.  Follow up to 2 abnormal pap smears I’d had in Chicago, the most recent of which was at the end of July and showed abnormal squamous cells.  Let me be clear when I say that the results of that pap smear showed that I had HPV and ABNORMAL SQUAMOUS CELLS. Let it also be said that I told this doctor in Chicago that I had been having a pinkish discharge for about a month or so. She said she didn’t see anything abnormal but that she did see some yeast so that was probably the culprit. “Nothing to worry about,” she said.

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Ok, fast forward to my follow-up with my new GP doctor in Florida.

She goes in to do the pap and says that she sees a mass… a fairly large mass, in fact.  She goes through the routine battery of questions about my pap history and then calls the doctor in Chicago (the one that said, “Nothing to worry about”). The doctor in Chicago says her diagram from that appointment is clear. No mass.  Ok, so cancer doesn’t sprout up in three and a half months. This tumor must be benign. There are a whole host of tumors that could grow that quickly. My GP refers me to an obgyn who goes in, sees the mass and does a biopsy. When I come back for the consultation a week later, his opener is, “Did you bring anyone with you today?” Now, I watch Grey’s Anatomy, and I know that that question is code for “You have cancer”. ‘Nothing to worry about’ indeed. The biopsy did not say cancer, however. It said almost cancer, but the doctor said cancer.  He told me to forgo my moving plans and get on a plane asap so I could get the healing process started in St. Louis (where my family lives). That was a Monday.

Tuesday morning I was on a flight home. Wednesday I was sitting in an exam room with my new St.Louis GP- the one I had to see to get a referral to a gynecologic oncologist. A few days later I had my very first appointment with an oncologist (a word, by the way, that until recently scared the ever loving mess out of me).  He went in and said, “You want to have kids, right?” This question was alarmingly comforting. Yes, as a matter of fact, I do want to have kids. He did another biopsy, a deeper biopsy. In the post-exam chat in his office, he said it looks like cancer but that the biopsy results will tell us more. Until then we’re treating it as cancer. We scheduled a PET Scan, CPAP, and surgery. My head was spinning. Seriously, what was going on? Less than a month ago I was just going about my life- business as usual. And now my calendar was full of doctor’s appointments. I wasn’t kicking my own butt anymore- life was taking its turn at that.  But I still wanted to hurl all over the place.

A few days later, Dr. Mutch, the oncologist with the excellent patient care, called with the biopsy results. “It’s cancer, but I think we already knew that.” We did. I’d been processing the idea that I have cancer since that obgyn in Florida suggested I might.  I sent a text to the hubs- who, as I’ve failed to mention, is deployed in Afghanistan until February 😦 – telling him the diagnosis.  He called just as I pulled in to the dog groomer to pick up the pooch.  Imagine my car facing a giant plate glass window that looks right into the front desk of the groomer. I’m crying hysterically and talking for the better part of a half an hour, but I have my headphones in so I just appear to be your average hormonal lunatic. The hubs doesn’t know what to do to support me from the other side of the world, and all I want is for him to magically be transported back here and wrap his arms around me. There are no words that he could say that would work as well as magical transportation and arm wrapping.

That was Friday. Today is Sunday. I’ve officially had cancer for 2 whole days. Everyone that matters in my life has been informed- and given strict instructions not to feel mad or sad or sorry, only hopeful. I’ve been busy reading forum after forum and researching doctors for second opinions (the one I like the best happens to be partners with Dr. Mutch…).

I don’t feel sick, and I don’t have any restrictions, so it’s hard to accept that the diagnosis is real. I have a dull pain in my lower left abdomen, but I’m pretty sure I’m making it up. I started my period on Friday which would be fine if I were allowed to use tampons… grrr… Pads.Are.Gross. End of discussion. I’m trying my damnedest to stay positive and to keep the health affirmations running through my head. I’ve also loaded myself with various “anti-cancer” foods- turns out green tea isn’t so bad, and mushrooms have weird healing powers. Mario was on to something with the whole mushrooms-give-you-extra-lives thing.

This is the beginning. And right now I’m not as scared of the cancer as I am of losing my uterus.  My uterus and I have big plans that I’m not willing to abandon just yet.  Dr. Mutch seems hopeful that he can save it. So please send all your healthy, healing thoughts in the direction of my uterus and my lymph nodes.

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