Now What?

Lately I have been feeling that familiar longing to put words down on paper. When I was going through cancer treatment, writing was such a great outlet and source of comfort. But thankfully, cancer is now in my rear-view mirror! I no longer write blogs as a coping mechanism. Yet I still feel the urge to write to support my desire to be more present each day and to be a catalyst for positivity and change.

This story starts about a year ago. I was cancer free, but mentally I was still recovering. I was still trying to answer the “Why Me” question that every cancer survivor asks themselves. Don’t get me wrong; I was very grateful to be alive and I was outwardly positive. Sometimes the outward expression of joy was to also try to convince myself that I was happy. And for the most part that is how I felt. But there were times when I was alone in my own headspace that I felt anxious and disconnected.

I went for a couple of Doctor check-ups during the fall of 2016, and both visits were emotional. First, any Doctor’s visit post-cancer is stressful. Every lab and test represents the moment you’re going to find out you have cancer again. I had also gained even more weight and felt embarrassed about it. I was so ashamed of myself. Here I was given the gift of life post-cancer. Twice! And I felt like I was wasting that gift. There is a photo from me of last fall that is the worst photo I have ever seen of myself. I look fat and uncomfortable and I remember how I felt at that event. Here I was out with a great group of people at an awesome restaurant, and I couldn’t really enjoy it. I was worried about what people thought of me, and because it was a packed restaurant I felt particularly large and awkward. I hate that photo so very much.

I have a wonderful woman that is my current primary care practitioner. She has a terrific bedside manner and really tries to serve as my health coach rather than a disciplinary figure. When I went for my visit last year, she asked questions and listened to me talk about not being able to lose weight, feeling anxious, issues with insomnia, and even a little depression. I think a lot of these feelings were related to life after cancer and the associated guilt. And that anxiety seemed to amplify the “normal” stress. She empathized with me and really listened which is rare in these days of the 10-minute doctor appointments. And then she matter-of-factly presented some ideas on how to make some life changes. During this appointment, something really clicked for me. It was one of those times in my life where the right thing happened at exactly the right time. I was in the right mindset to really listen and was ready for change.  I left that appointment feeling hopeful about the future; though skeptical that I could do what was necessary to really enact change in my own life.

Now let’s jump in the time machine and travel forward to now. Life has changed so much! I have made so many positive changes in my life. I’ve lost a significant amount of weight and have started exercising almost every day. I also eat much healthier, and don’t use food as an emotional crutch. I feel more confident, happy, and optimistic about the future. I see pictures of myself and I’m not embarrassed. I don’t try to hide anymore!

Left: A recent photo. Right: A horrible, horrible picture at a work meeting. I loved that shirt until I saw this picture!

So, making a long story even longer… I swear I’m trying to get to the point. Last week was my annual GYN appointment.  Previously, GYN appointments were the ones I dreaded the most. My GYN was the Doctor who diagnosed me for uterine cancer. I had come to her as a new patient after unknowingly having the symptoms of uterine cancer for well over a year. And yes, I knew something was wrong, and yes with the history of cancer I should have been smarter. My previous Doctor that did my GYN exams before this one had left her practice and I never bothered to find another. In my mind, seeing any type of Doctor multiple times a year was enough. I had ignored the problems I was having and wrote them off as issues related to weight, growing old, the effects of chemo from cancer #1, etc. Luckily when seeing my regular Oncologist prior to this visit, he noticed some issues in a routine scan and recommended that I see a GYN as follow-up. A slightly funny side note: my Oncologist credits me having lymphoma as the reason I was diagnosed with uterine cancer soon enough to do something; he said that had I not had the routine follow-up scan at that time, that things could have turned out quite differently.

Anyways, for the first time ever, I was happy to be headed to my appointment last week. The first stop at any Doctor’s appointment is the dreaded scale. But this was a new day! I stood on the scale waiting for the number; and I already knew where the scale would land. My weight was 94 pounds less than my previous visit! The nurse raised an eyebrow, but didn’t say anything. I’m not sure if maybe she thought there was a mistake in my chart, or that maybe the weight loss had something to do with being sick.

I could barely stop smiling. My blood pressure was also perfect. Before when it was elevated, I always used the excuse that it was anxiety from being at the Doctor’s office rather than my unhealthy lifestyle.

Next, I had to complete a questionnaire about my mental/emotional well-being. The previous year, it was harder to fill out – I remember answering a few questions about not feeling engaged or excited about things going on in my life and that I had a hard time focusing. This time, I could easily answer the questions with positive responses.

When the Doctor came in we had a great conversation. She congratulated me on the hard work and we had a great conversation about my health and what I’ve been doing to have accomplished so much over this past year. She did my exam and ran through the “questions to ask if your patient has cancer” checklist. Fevers? Back pain? Fatigue? Lumps? Abdominal pain? Decreased appetite? Strange muscle pains? Headaches? Rashes?

I left that visit so happy. For the first time in at least ten years, I feel like I’ve gained control over my health and my body. It is such a feeling of empowerment. I’ve finally stopped with the litany of excuses for not being healthy. I would blame stress. I would always say that I didn’t have time to exercise or to prepare healthy meals. I would say I was born with a crappy metabolism and that I was trying. And the excuses were all ways to try to make myself feel ok about what I was doing to myself. I’m pretty sure no one else believed me.

So back to the beginning of this short novel: Why the need to write this down? I write when I need to organize my thoughts and to fully think through the “why” of what I’m feeling. I write when I need a mechanism to later remind myself of a feeling or an experience to help me stay on the right path. I write with the thought that if even one person reads my words and it is a cause for a positive change, then it’s worth my time.

I had a couple of hesitations. First, with a ton of weight still left to lose, do I really have the right to write a blog focused on better health? Yes, I think... When I read blogs and weight loss stories, I want to read the ones written by those who have walked in my shoes or are trying to accomplish the same thing. Next, do I really want to put something so personal out there for the world to read and analyze? This was probably my biggest hesitation. I once had a troll who took information posted in a previous blog and negatively posted it out to others. It was hurtful and I almost took my blog down after that happened. But I stuck with it; particularly after hearing from another cancer patient that my blog had helped them with their experience.

And lastly, the whole act of blogging is a narcissistic exercise. I always worry about being viewed as self-centered and I know that I can be that way. But I think it’s ok for me to focus on me for a while. I’ve earned it. I don’t know that I’ll be putting a link to it on my Facebook page just yet; not sure I want to open it up to those that are closest to me just yet. It's sometimes hard to be vulnerable with those who know you best.

Anyways, hope to pick up a reader or two who want to watch me go through a different life experience that is so much more fun than enduring cancer!

So, here’s to being a better version of myself!

Post Cancer Funk

I finished up radiation treatment in January and am trying to get back to the business of being normal again.  I am back to my normal energy levels and physically feel really good.  In fact, you never realize how bad you actually felt until you are better.  We had gone to Charleston, SC back in December for an Ingress event, and I remember that all the walking we were doing felt brutal.  I ended up driving from place-to-place for some of it and felt like I couldn’t take another step.  I didn’t even want to leave the hotel for dinner that weekend and I think went to bed by 8:30 that Saturday night.  I should’ve been a little nicer to myself given I was only about 8 or 9 weeks post surgery and had started radiation that very week, but I am not one to let myself be sick.

We went away to Washington, DC for another Ingress event this past weekend, and we walked probably twice as far as the weekend we spent in Charleston.  With the exception of one almost blister, I rocked it!  We arrived on Friday and spent the evening walking around the City.  We walked pretty much all day Saturday including walking to a restaurant for dinner Saturday evening, and even went out walking on Sunday before leaving for the airport.

So physically I feel good.  It is the mental strength that I am struggling to regain.  When I go through cancer (and I hate that I’m a two-time veteran), I rally to get through it.  I am very deliberate about keeping a good attitude and not wallowing in the fact that I have cancer.  But once I’m done and better, it leaves me mentally drained.  It’s like every bit of my mental reserve is sucked dry.  And I feel like I’m going through the motions with my normal life for a while.  I have a hard time getting fired up about anything – things at work, things at home, etc.  I know this feeling passes, but I remember after the lymphoma that it took so much longer than I thought it would.  I think it was nearly a year before I felt fully able to cope. I feel a bit like a voyeur in my own life right now.  I’m going through the motions and I am able to function reasonably well.  But I don’t have that spark that I feel like I should have.  I lack confidence and creativity.

The other thing that is driving me crazy is the post-cancer follow ups.  It is always rough that first year post-cancer.  This year I have to get four pelvic exams (once every quarter) and will get scans and bloodwork.  I also am due for a Mammogram and both oncologists (yes I have two, I am that special.  I actually have three if you count my radiation oncologist) said do it as soon as possible.  And I don’t want to do it.  I am terrified of cancer at this point. Yes, I understand the whole concept of early detection.  Trust me, if anyone understands it, I do.  But the mental reserves aren’t there yet.  If I went for my Mammogram and received a cancer diagnosis, not really sure I could rock it at this moment in time. I am just starting to adequately cope with daily life.  A tough proposal at work had me in tears a couple of weeks ago.  Imagine if I found out I had to go through cancer treatment again. (No lectures please, I will go for my Mammogram!)

Anyways, as with anything that is difficult to get through, the typical mantra of taking it one day at a time holds true.  Just need to remember to make the best of each day!  I’ll leave you with a little Pink Floyd…

Tired of lying in the sunshine staying home to watch the rain.
You are young and life is long and there is time to kill today.
And then one day you find ten years have got behind you.
No one told you when to run, you missed the starting gun.

So you run and you run to catch up with the sun but it's sinking
Racing around to come up behind you again.
The sun is the same in a relative way but you're older,
Shorter of breath and one day closer to death.

28 Days Later

It is apropos that the title of this post corresponds with a zombie movie.  Because a zombie is just what I feel like after 28 days of radiation.  But it is over and I can finally start to recover from this whole affair.   

This morning I took pastries to the radiation team that worked with me each day.  They are an amazing bunch of women that made me laugh and feel comfortable in a situation that is really one of those life events you hope to never experience.  We would laugh and talk each morning as I undressed halfway and positioned on a steel table while they adjusted my body to ensure that I was in alignment.  They were kind and caring and made a bad situation as good as it could be.   They hugged me and celebrated with me this morning.  We ceremoniously removed the stickers from my body this morning that cover and protect the marks that were drawn on in order to line up the radiation machine.    

I sit here sipping cranberry juice as a type this, because it takes a lot of cranberry juice and water to keep my very cranky radiated bladder working properly.  And my coffee cup is mostly full, because I can’t really drink the caffeine right now.   I get a cup and enjoy the smell, warmth, and taste – careful not to drink too much of it though or my bladder and digestive system will both be unhappy.

And oh the joy of trying to eat food that doesn’t make my stomach angry.  There really isn’t anything at this point that doesn’t cause a problem.  The list of foods to avoid during pelvic/adominal radiation include raw fruits and vegetables, high fiber foods including whole grains, anything greasy, acidic foods, dairy including cheese, rich pastries/ desserts, meats with high fat content, caffeine, alcohol… So basically I’m left with bananas, white pasta, potatoes that aren’t fried, lean proteins, mushy vegetables, and processed cheese.  And now, after 28 days, even those foods are questionable.  But at least I can eat.  I just need to medicate and only eat when I know I can be near a bathroom.  I was chatting with a few radiation comrades this morning that are limited to only Boost and Ensure due to their radiation treatments so I am reminded to be grateful that I can eat at all.

I had been missing Gary, my 8 AM radiation partner.  He had not around all week and I was worried that I wouldn’t get to say goodbye, but he was in the waiting room this morning.   Apparently Gary had been in the hospital for the last five days with double pneumonia and some other issues.  My heart goes out to Gary who still has quite a ways to go before he is done with his treatment.

Today I am elated to close this chapter.  I hope that there was nothing for the radiation to kill except healthy cells and it was all a waste.  I’ll never know if that is the case.   But if there were a few cancer cells floating around, I hope the radiation did its job.  Or all the processed macaroni and cheese I’ve eaten over the last few weeks will be for nothing.

The Oncologist said I should be right-as-rain within two weeks.  Can’t wait to enjoy a salad, some spicy Mexican food, and a cocktail!      

Gary

Today was my 23^rd session of radiation. Only five more to go. I was feeling pretty foul this morning as I was headed to the hospital for my session. I woke up feeling tired.  The fatigue from radiation is accumulative and I am definitely feeling the effects as I near the end.  This week has been very busy at work and coming in late everyday makes me feel rushed once I get to work and I spend the entire day feeling behind.

I have the first appointment of the day for my radiation therapy.  They have two machines, so there are two of us that arrive just before 8 AM – me and Gary.  Gary is older than I am – maybe in his late fifties or early sixties.  But he is a spry looking gentleman.  Had I not met him in the radiation waiting room, I would have never suspected he is a cancer patient.  He likes to watch the news in the morning and often chats with patients as they arrive.  He has always been cheerful and I have often wondered about why Gary was receiving radiation.

Today Gary and I finished up at the same time so we rode the elevator down together and had to wait for our vehicles.  Gary was not his usual cheerful self this morning and started telling me about his treatment.  He is not only receiving daily radiation, but is also undergoing chemotherapy right now.  Gary can’t eat at all because his throat is too raw.  I shared with him that I had previously gone through radiation of the neck area and understood his plight.  He said he’s tired, he can’t sleep, he can’t eat, and he feels like he has no quality of life right now.  He said they gave him a 60-70% chance of getting through this and that it had better work because he wouldn’t do this again.  Gary asked me how long it took to get my taste back after treatment.  I shared with him that it was a good 2-3 months before food tasted right again.  He said that his cancer was Stage 4 which is why they are treating him so aggressively.

Our cars arrived around that time so we waved and headed our separate ways.  Gary also goes to work each day after his radiation.  Those of us who fight for the early appointments usually have someplace to be.

Talking to Gary definitely gave me an attitude adjustment.  I have been complaining about being tired, but at least I can sleep.  And I can’t eat the things I would like to eat, but I am able to eat without pain.  And most importantly I am fighting the potential of cancer and not actual cancer.  Gary is fighting the real fight.

I am grateful for Gary and am sending him my hopes for the strength that he needs to get through this experience.  I am also reminded that I need to practice kindness.  You can never tell by looking at someone what they are going through at any given moment.  Life is hard sometimes, and everyone has a rough patch now and then. 

My rough patch is almost over.  And for that I am very grateful.

Radioactive New Year's Eve

It is New Year’s Eve.  I was up at 6 AM for a 7 AM radiation appointment before going to work.  That is not what anyone envisions for the last day of the year.  I should be on vacation enjoying the holidays, but my vacation time was and is being used to cover all the time associated with ridding my body of uterine cancer cells.  So today, I go to work.

After work, I’ll go home to celebrate.  The problem is I can’t really drink alcohol because my stomach can’t handle it.  And I can’t stay up late because of the fatigue associated with radiation.  So odds are that I won’t even make it until midnight to welcome in the New Year.

I will admit that I’m feeling a little sorry for myself today.  Even though logically I know that I should not.  I should consider myself very lucky because so far I’ve dodged another bullet that could have been so much worse.  So I should be celebrating.  I know there are other people that are waking up today knowing this will be their last New Year’s Eve.  Or wondering how they are going to put food on the table for their family.  So I need to snap out of it.  But once and a while it’s just hard to do it.

This week has been long, and to think it’s only Wednesday.  The week started with my second session of internal radiation and an IV iron infusion.  I will say that the iron infusion is helping with my energy so I should be grateful to have had it.  It looked like an IV of rusty water.  I tried to pretend that it was wine.  But I hardly felt drunk afterwards.

I have counted the days out, and I think radiation will end on January 22^nd.  At that point I will have completed 25 external sessions and 3 internal sessions.  I will have been half naked in front of strangers 28 times.  I will have layed behind a heavy door over six inches think while radiation technicians watch and listen from the other side of the door.

One last thought.  To the woman who cut line in the drive-thru this morning.  I hope that getting your coffee one minute sooner than me was worth making my mood just a little less cheerful.  I saw you were at an awkward angle in the parking lot and I was actually going to let you go ahead of me had you looked up and made eye contact.  Instead you avoided eye contact and jammed your car in front of mine.  Happy Freaking New Year to you.   

Oranges Are the Devil

Last week I went to see my oncologist (my Lymphoma oncologist who I see for routine follow-up and to monitor my post-op blood thinner).  When he came in to talk to me he said he wasn’t sure why I was there for a visit.  I told him that frankly I wasn’t sure why I needed to see him either.  They always schedule the next appointment at the end of the previous appointment, and apparently he couldn’t remember why he had them schedule it so soon.

But actually he found something to discuss.  They always do a quick blood check while I’m there; just a finger prick’s worth of blood.  They ran my hemoglobin and the test showed that I was anemic.  He went ahead and had them take additional blood so he could further analyze my blood. There are many reasons that I could be anemic including recovery from surgery, radiation, and medications. He told me to go ahead and start taking iron pills.    
Today the oncology center called back about the bloodwork results.  Apparently he wants me to have two sessions of iron infusion (via IV) to help with the anemia and one additional test.  It seems like this whole ordeal is the gift that keeps on giving.  I go next week for my first iron infusion.  This time of year I want to think about infusions of cinnamon, ginger, and brandy.  Not iron.  The anemia can cause fatigue as well as sensitivity to cold.  I have been experiencing both.  I assumed the fatigue was radiation related. 

Speaking of radiation, today was day eight (out of 28) of radiation and my first session of internal radiation.  The internal radiation takes a little longer and is a bit more awkward and uncomfortable.  I will have internal radiation for the next two Mondays. The side effects of radiation had already started a bit late last week and the dose of internal radiation seemed to have kicked them into high gear this morning.  I have an irritated stomach pretty much every day and I feel like I have to pee RIGHT NOW even when I don’t.  Luckily I can take medications to help, and I can also alter my diet.

Bizarrely, the “radiation diet” suggests that I don’t eat fresh fruits and vegetables or whole grains.  I’ve been kidding around with Robbie that I’m now on the white food diet!  Mashed potatoes, pasta, dumplings, white bread, and chicken breast.  The unfortunate part is that it looks like coffee is no longer tolerable.  And heaven forbid I eat an orange.  I ate an orange a couple of days ago and I was miserable for hours. 

Today has been tough.  The news about the IV iron along with a round of side effects that came on fast this morning has left me a little weary.  I want to be drinking candy cane martinis and enjoying myself without worrying about the consequences.  This shall pass, but I am having a hard time being cheerful today.  Robbie brought me home beautiful flowers at lunch as well as much needed medication.  As always, he is a rock star when it comes to taking care of me.  As a veteran of “the fight”, I know that these days happen and that tomorrow will be a new day.  I just need to be kind to myself and wait this one out. If you are of good health, please go out and have a martini for me – I am with you in spirit.

On the Fifth Day of Radiation

Today was day five of radiation.  I am 17% done with my treatment.  So far, so good.  No real side effects yet except feeling like I need an early bedtime.  But that could be lingering effects of the surgery in combination with the radiation.  I’m starting to get into the routine of hitting the hospital each morning and getting radiated.  I wear Christmas earrings each day and they play Christmas music in the radiation room so I suppose it’s a downright festive environment.  The radiation technicians are a great bunch of women.  They are compassionate and joyful, particularly given what they deal with each day.  They make me laugh and help me overcome the anxiousness of being half naked while getting nuked in front of strangers everyday.

The hospital has valet parking for radiation patients.  This is very accommodating, except it posed a dilemma for me.  When you are told to use valet at a medical facility, do you tip the valet?  I researched online and found a variety of answers.  By the time I’m done with my treatment I will go there over 30 times in the course of just over a month.  That would be a lot of tipping.  I was feeling guilty every time I showed up and didn’t tip.  And it didn’t help that the weather has been cold or rainy almost every morning.  And the folks that work the valet are about as nice as they come.

I finally decided to tip – if nothing else to relieve the stress I was feeling about the situation.  There are two people that work pretty much everyday so yesterday I took a $10 for each of them.  I figured that would cover me for this month and I could gauge their reaction about tipping.  Both said I didn’t need to do it, but did not refuse the tip.  So from the reaction, it’s allowed but not expected.  That was good to know.  I figure in January I can do it again.

The other “side effect” I am experiencing is that I am feeling a little bit overwhelmed.  Between all the appointments, keeping up with work, and the to-do list associated with the holidays there doesn’t seem to be enough time in the day.  I am starting to become a little scrooge-esque in my attitude towards the holidays.  I am working through the to-do list and am hopeful that I will feel a little less negative by the weekend.

I'm so tired, but I can't sleep...

I have returned to work full time after my surgery.  It is great to be among the living again.  I craved the feeling of being normal so desperately.  And really for the most part I feel great.  The incisions are starting to fade to scars, and I can go for hours sometimes without thinking about this whole ordeal.  When I get home at night though, I am exhausted. The kind of tired where your whole body aches.  And I watch the clock and can't wait for 9 PM to roll around so I can head to bed without feeling like a toddler.  It has only been six weeks since my surgery so this is not unexpected.

But several times over the last week I get to bed and sleep doesn't come which defies all logic.  I watch Netflix or cruise the Internet in an effort to distract myself from trying to fall asleep.   Most nights I eventually do get to sleep.  Tonight is not one of those nights.  It could have something to do with today not being the best of days.

Today was my first day of radiation simulation.  It is the set-up process to prepare you for radiation. Because my radiation will be on my pelvic area, it requires some awkward nakedness.  I basically take my pants down to mid-thigh and lay on a table while various technicians position me, draw on me with markers, and put stickers on me.  Sounds like a frat party gone wrong.  To add to the good times, a probe was also inserted while I was being X-rayed to ensure alignment within my vagina. Once they felt I was perfectly aligned, a mold of my legs and their position was created so that each day when I lay on the table I will lay the exact same way.  I also had a CT scan to confirm alignment. I go back next week for one more dry run before we go live.  

A public service announcement for all you ladies out there - have your pap smears. You may hate it, but waiting too long to get a gynecological issue diagnosed can land you where I am now.  More people have seen my lady parts over the last two months than I care to count.  I would give anything to turn back time and be able to schedule a papsmear for about a year ago.  There may have been a chance for early diagnosis and treatment that would not have required radiation and would not require daily nakedness in front of strangers.

Part of me wants to just not do the radiation.  I don't currently have cancer.  I could refuse treatment. But as much as I want to walk away, I don't want to risk it coming back.  The future would hold much worse things for me than five weeks of awkward nakedness, side effects, and probing.  And I would be writing about how I should have just sucked it up.   

These recent blogs are difficult to write and share.  This is the type of thing you don't talk about with strangers and weirdos on the Internet.  But I know the power of the Internet.  Some woman out there may find this blog and find comfort knowing that she is not alone.  Or someone else may read it and get that pap smear they have been putting off.  Or maybe my jokes about awkward nakedness will make someone laugh on a bad day.  Any of these outcomes make my willingness to share worth the risk of embarrassment.

Cancer: The Sequel

This blog is a summary of events from the last few months.  I did not initially blog because I was struggling to deal with some difficult news and really didn’t want to share my thoughts immediately.  I actually missed blogging, and in hindsight probably should have done so.  I forgot how therapeutic it can be.

So, all is well on the lymphoma front.  I had my check-in with my oncologist over the summer and as part of my check-in he sent me for a CT scan which is routine post-cancer care.  When he reviewed the results of the scan he mentioned that my uterus and one of my ovaries looked enlarged and that I should probably check-in with my gynecologist.  But that I was all clear with regards to lymphoma!

I was already overdue to see the gynecologist anyways because the person I was seeing left the practice, and I was having horrific menstrual cycles so I actually followed his advice and got an appointment set up with a new gynecologist. 

The visit with the new gynecologist was like unleashing the Kraken.  We spent a month getting to the bottom of various issues.  First issue resolved:  hypothyroidism.  The radiation for the lymphoma probably damaged my thyroid.  That was the easy fix though – a pill.  I had the beloved Pap smear and that came back normal (at least something did!).  Next we did a pelvic ultrasound which showed a cyst on my ovary and a thick endometrial lining.  She gave me medication to hopefully help, but also wanted to do an endometrial biopsy.  Because I’ve always had wacky periods, I was not really thinking cancer.  I figured it was hormone irregularities which were potentially made worse by the chemotherapy I had for the lymphoma.

Imagine my surprise a week later when she called to tell me that the biopsy showed uterine/ endometrial cancer.  I was devastated.  It is very unfair to have fought and beat one type of cancer only to get a completely different type of cancer.  The last time I heard “you have cancer” I felt a lot of fear because I didn’t understand what it meant and how to deal with it.  This time I felt a lot more anger about the situation. 

She set me up the next day with an oncologist in Charlotte that specializes in gynecological cancers.  He was very reassuring and scheduled me for a hysterectomy.  He felt that surgically we could remove all of the cancer.  I was relieved to have such a positive prognosis.  Both times that I’ve had cancer, I was told “if you are going to get cancer, this is the one to get.”  Yeah, that always helps to hear.

I went into the hospital on October 22^nd for the hysterectomy.   They were going to attempt to do it laproscopically which is less invasive.  But the surgeon told me going in that it may not work out that way and they may do a full incision which ended up being the case.  The surgery lasted about 3-4 hours.  The first two days of recovery were pretty rough.  Every time I would move around I could barely breathe, my pulse would race, and my blood oxygen level would plummet.  They finally did a CT scan and identified that I had a pulmonary embolism (clot that had moved to my lungs).  They started me on medication to resolve the clot.

I was able to go home after four nights in the hospital.  After two weeks they removed 50+ staples from the incision sites.  Because they started laproscopically, I have a total of four different incisions in my stomach.  Three weeks after the surgery, I went to see the surgeon for post-operative follow up and to discuss pathology results.  The good news is that the doctor believes that all of the cancer was removed.  The margins in a few areas were not ideal though, and because of that he recommended that I follow-up with radiation therapy to ensure that there is not spread or recurrence.  He also wanted me to have a PET Scan to verify that no other cancer showed up in the scan.

And that brings me to this week.  On Monday, I went for my PET Scan and today I met with the radiation oncologist.  The best news yet – the PET Scan looked good.  No cancer is showing up – nothing in the lymphnodes.  But even with such good news, they are still recommending five weeks of radiation.   I will admit this news is a bit devastating.  Radiation is a huge commitment.  It is every single day, five days a week.  Something about getting cancer treatment everyday messes with your head.  You can’t get away from the thought of cancer.  And the fact that you are being treated with something so fierce that no one will be in the same room with you while you receive treatment is a little unsettling.

I am a “look on the brightside” kind of girl.  I am telling myself  all of the positive things and there are a lot of positives.  No chemotherapy.   We are not trying to get rid of significant cancer – we’re trying to prevent cancer and ensure I live a long and happy life.  Radiation is less than 30 minutes a day.   But even with all the positives, a good attitude isn’t coming easy for me today.

I have said this before, but can’t say it enough – cancer creeps into your life in ways that aren’t just physical.  It negatively impacts everything and everyone in your life.  Robbie has had to take on the bulk of things at home because of my recovery from surgery.  My workplace has had to cover my workload for a second time.  I felt guilty the first time, and this time I feel downright awful about it.  I know that none of this is my fault, but that doesn’t help. 

I am tired of being at home.  I am tired of feeling tired and of thinking about all of this.  I am tired of hearing everyone say “You’ll get through this!  You can do this!”  I am just so tired of it all.  And I know this is not a fighting “kick cancer’s ass” attitude; but it just happens to be how I’m feeling on this particular day.  I will beat this and I will be awesome, but I will be awesome tomorrow.

 Stay tuned as I bring you five weeks of disturbing stories from the radiation room…

Bananarama

Once you’ve been treated for Non-Hodgkins Lymphoma you are subsequently monitored for recurrence over the next five years.  The monitoring includes check-ins with the oncologist, as well as bloodwork and scans.  It’s been well over a year since my last scan of any kind – in fact I think the last one may have been late summer of 2012.

So a few weeks ago, I received in the mail appointments for bloodwork, a CT Scan, and a visit with the oncologist.  I went and had the bloodwork done on Monday and this morning I went for the Scan.  My previous scans have all been combo PET/CT scans.  They use a nuclear contrast and it’s a bit of a different process from just a CT (often referred to as “Cat” Scan).  Today I had to go for a C/P/A CT Scan.  When I got the appointment, I didn’t understand all the acronyms, but I have since learned that I was going for a pretty comprehensive CT Scan that included my chest/neck, pelvis, and abdomen. 

My appointment was for 8 AM and I thought I’d be out of there by 9 AM at the latest.  I was so very wrong.  First, I had to argue over insurance.  I have a pretty common brand of insurance, but my policy is out of California, not North Carolina (NC).  Because I live in NC though, it seems all the systems are set up for the local insurance so there is frequently back-and-forth about what is and isn’t covered.  The woman I had to meet with to check-in for my diagnostic was quite insistent that my procedures were only 80% covered and that the costs were also subject to the deductible.  I had actually called my insurance company yesterday to verify and I am certain it is covered 100% and that the deductible is waived.  But after much back-and-forth and no wavering on her part, I reluctantly paid the estimate so I could go ahead and get the scans.  I was already dreading the appointment and knew that if I put my foot down and rescheduled, I would drag my feet and not do what I know is important.

She then informed me that someone would be bringing me a smoothie that I needed to drink.  The smoothie helps make my insides show up better on the scan.  A barium banana smoothie.  Yum.  I headed back to the waiting room, and as promised out came a technician with a cold smoothie and a cup.  She poured half in the cup and told me to drink it.  And told me to drink the other half twenty minutes later.  I took one sip and began to gag.  I was already cranky and frustrated which put me in no mood to conquer the barium banana smoothie.  I closed my eyes and took a couple of deep breaths.  I whispered to myself “I can do this.”  Nothing like trying to find your Zen in a waiting room at a medical facility.  I began to drink one swallow at a time.  I could not chug, but if I did one swallow at a time I could suppress the gag reflex.  I finally got through the first cup and by the second round was able to do it without gagging at all. 

By this time I had been there almost two hours, hadn’t had a bit of coffee, and needed to pee desperately.  Except I didn’t know if I was allowed to pee – being full of barium banana smoothie and all.  Finally someone retrieved me from the lobby and as we were walking back asked if I needed to use the restroom.  I was SO HAPPY to pee.  It’s the little things.

I wore my scan outfit (gym pants and T-shirt) so I didn’t have to put on a gown.  If you ever have a medical crisis, buy a good scan outfit!  Once in the scan room, I found out that not only did I have to drink the horrid banana barium smoothie, but that they would also be injecting some contrast for the non-abdominal parts.  Because it was actually multiple scans, I had two contrast injections and multiple passes of the scanner.  Finally, around 11 AM (THREE HOURS!) I was released to go home. 

I would like to say that after all I’ve been through that this process would not instill fear.  I have fought cancer and won.  I’ve had some minor scares (i.e., the tonsils!), but for the most part it’s been smooth sailing.  But the check-ins always makes me feel unsettled.  There are days, maybe even weeks when I don’t even think about cancer anymore.  And even then, it’s just a quick thought – not an all-consuming obsession. 

But today it was like running into someone you’ve been avoiding.  You try not to make eye contact and you try to pretend it’s no big deal and may even mutter something polite, but your heart is racing and you want to run away as fast as you can except you can’t because that isn’t the grown up thing to do.

For now I’ll try very hard to not think about it.  I’ll enjoy the weekend and spend time with the hubbie and the beagles.  And I’ll picture my oncologist saying those words I love to hear “Scans look fine.”  And I will avoid all things banana.    

 

Simple Gifts

As another year comes to a close, it is human nature to take a moment and reflect.  Since the cancer diagnosis and treatment, each year that goes by is viewed as a gift.  Each day and all the moments are the extra, the icing on the cake – the things that may not have been if the cancer had won. 

With each passing day and month and year, I find it harder and harder to live each day with a feeling of gratitude.  I was so overcome with that feeling when Kelly 2.0 emerged from beating cancer.  But now, the worries of daily life sometimes cloud my ability to see past those things that aren’t important.

But stopping to reflect helps me re-center and to focus on the right things.  The things that matter.  The things that make humanity awe-inspiring.

Moments worth remembering were plentiful this year.  Many days were spent in the sunshine enjoying laugher with friends.  It was a year in which we made new friends.  I gazed upon the Golden Gate Bridge in wonderment.  I loved watching the joy that making a great batch of wine brought my husband.  There were many beautiful sunrises and sunsets.  I stood at the top of NC watching the clouds roll in and feeling totally alive.  There was much creating – whether with words or ideas or with my hands.    

And yes, there was sadness at times.  Losses.  Struggles.  Unspeakable and unexplainable things that happened.  But all the darkness only emphasizes the need to focus on the light.

I will make it my goal this year and every year that I am given to live a life of gratitude and of joy.  To not just enjoy great moments, but to find ways to create them for myself and others.  And I ask you to do the same.  Together we can make the world a better place – one moment at a time.

Haunted by Somebody I Used to Know

Thanksgiving is right around the corner.  For the most part, I could not be more excited.  I love the holiday season, and I can’t wait for the weeks of festivities.

I find myself preoccupied by events that took place in the fall of 2010.  I can’t help but to try to mentally walk through the many firsts that happened – all between Mid-November and Christmas.  It was this very week that I had the critical ultrasound and biopsy.  Two days before Thanksgiving I received my cancer diagnosis.  My first meeting with the oncologist and PET scan occurred the following week.  My first chemotherapy happened the very next week.

I am grateful that I kept a blog.  I can remember the big moments – some as if they are in slow motion. But a lot of the detail of that time has now faded.   But having captured it in writing, I am able to read and trigger my memory.  It is a peculiar sensation though, because I feel like I’m reading someone else’s story.  And in reading that story, I am so very proud of the humorous and strong heroine.

Glumly, I am haunted by her.  She is an impossible role model.  She got out of bed everyday with a kick-ass attitude.  She was able to beat cancer!   And even in illness, she was so full of life and so grateful for the people in her life and for all the moments that we take for granted.

It’s hard to live up to her.   She conquered the Big C!  If I’m lucky, I might conquer the Starbucks drive-thru.  She woke up grateful to be alive each day.  I wake up wishing I could sleep another hour.  The small stuff meant nothing to the mighty heroine.  I am sometimes so buried in the small stuff I forget to notice the sunshine peeking through.  She knew her mission and never detoured from it.  I’m no longer sure what my mission is. 

I need to consult with the heroine.  She must be around somewhere. Surely she can give me some advice on how to be more like her.   Strong.  Grateful.  Focused.  I want to be more like this somebody I used to know.

Coming Out

In August I had my routine post-cancer PET Scan and then went to see my oncologist for a follow-up visit to receive the results.  It was not the news I wanted to hear.  My tonsils and adenoids had "lit up" on my scan and they recommended a follow-up visit with an ear-nose-throat (ENT) specialist.  Keep in mind, a PET Scan is not a "cancer" scan.  A PET just shows any area of metabolic activity which can include inflammation, pain, infections, etc.

I went to see the ENT and she recommended removal of the tonsils and adenoids.  She said that it could be nothing, but that in order to really check it out the most comprehensive course of action would be complete removal.  Her logic was that if did end up being cancer related, we could not only diagnose it, but also go ahead and potentially get rid of the problem in one procedure.

And as much as I didn't want to be a 40-year old woman getting her tonsils taken out, I agreed that it was the best plan and we scheduled it.  I had outpatient surgery the Tuesday after labor day.  This was my first real surgery and it went very well.  I was home by lunch time and well-medicated.

Adult tonsil removal is painful and the recovery process is slow.  The first two days weren't so bad because I was still on the many drugs they gave me during surgery.  But as those have worn off, the discomfort has increased.  In fact, the last two days have been the worst thus far.  Additionally, the adenoid removal has caused some sinus issues that make laying down to sleep pretty much impossible.  So between hydrocodone, nearly no sleep, and very little food in my stomach I'm a joy to be around.

I went for a follow up with the ENT today and the good news is that the PET Scan blip was nothing more than that - a blip!  No cancer. My tonsils were apparently just inflammed.  I wish I could drink a glass of champagne to celebrate!  But that would really really hurt.

I can't wait to get this "blip" over with and get back to hot coffee and sleep!

Restore Life - The Way It Should Be.

So, it’s been a while.  I am happy that I haven’t felt the need to talk about “It”.  I’ve been very busy in my pursuit of being a card-carrying member of society again.  Busy working and playing.  Busy trying to forget about the days in which I was a girl interrupted.  And I go for long periods of time without giving cancer a thought!  I knew these glory days would come and they were well worth the wait.

Over the last month though, cancer has crept into my head.  I can name a half-a-dozen people that have passed away from cancer.  No one I know directly, but relatives of friends and co-workers.  Some of these losses are as young as I am.  And although I offer appropriate condolence, in my head I grieve greatly for each of them and their families.  I grieve because cancer sucks and it can hit anyone at anytime.  And we don’t understand who will get it or why.  And I hear about these people who leave children and loved ones behind and the question of “Why me?” rattles around in my head.  Not why did I get cancer, but why did I get to survive when someone else who had a bigger role in humanity was not so fortunate.  I am so grateful that I am alive, but disturbed by the lack of rhyme or reason to the world.

Yesterday I received my appointment for my annual PET scan.  It’s been a year since my last PET scan and about 16 months since I had my first clean scan.  I feel great and I am hopeful for an all-clear, but I would be lying if I said I am not feeling a little bit of “scanxiety”.   Nothing like I felt a year ago, but definitely a little tension in my neck that I can attribute to the anticipation of it.

Enough talk about the thoughts that exist in the shadows of my mind.  Let’s do a dramatic change of topic and talk about my 40^th Birthday.  I am THRILLED to be turning 40 in less than two weeks.  After thinking I might be robbed of another decade of life, I welcome it with open arms.  I am looking forward to celebrating it with my family and friends.  This Leo wants to be the center of attention!  Now if I can just find an appropriate tiara for the occasion…

Living the Dream in the Valley

I’ve been writing bits and pieces of this post since we returned from California nearly two weeks ago.  It’s been so busy since we’ve gotten back that it has been nearly impossible to sit and capture my thoughts.

Vacation was blissful.  It was filled with the best life has to offer – quality time with my husband, remarkable food and wine, breath-taking scenery, and wonderful people.  It was the perfect time to celebrate life and to put cancer a little further in the past.

One of the things I enjoyed most were the stories shared by the people we encountered.  As I get older and as anyone who has had cancer or a similar experience will tell you, life is about being in the moment.  Furthermore, enjoying life is about recognizing those moments and appreciating them before they have passed you by.  I am grateful that I during my vacation I was able to recognize these wonderful moments as they were happening and fully experience the joy!

A highlight of our trip was a private Napa tour we took with Dave from the Napa Wine Project.  Dave and I corresponded prior to our trip, and I told him that I wanted to have an “off-the-beaten path” experience.  Robbie, being an amateur winemaker, loves to talk to other winemakers about the craft and I knew that he would enjoy this type of tour immensely.  Dave did not dissapoint.

The first place we went during the tour was Sciandri Family Vineyards where we met with Ron.  They have a beautiful 20-acre state and currently produce an estate cabernet sauvignon.  I loved sitting on his back porch eating cheese and drinking their estate cabernet while Ron talked about their family heritage and how they got started in the wine making business.  We listened as he showed us a small row of grapes smuggled from Italy that he had planted for the enjoyment of his grandchildren. 

Next he took us to meet Emil Tedeschi from Tedeschi Winery.  We ate lunch at a picnic table outside of his winery, while he told stories about how he started a winery in Maui of all places.  Robbie’s favorite moment of our vacation was when Emil pulled out his grafting knife and literally showed him how to graft a grapevine.  Emil was one of those salt-of-the-earth types and I loved that he spoke as a farmer that works hard to produce great wine.    

The last place Dave took us that day was to meet with Heather Brakesman at Summit Lake Vineyards on Howell Mountain.  Her parents started the winery before she was born, and she grew up in the Napa Valley.  We spent time enjoying a spectacular view, drinking wine, and playing ball with a relentless labrador.    She told us about how all she longed to do while growing up was to get out of the valley.  Now she is back, and listening to her kids talk about how there is nothing to do in the valley.  Her language was colorful and she had a great laugh.  I could have sat there all day.

Even without Dave as our ambassador, we stumbled onto some great people all on our own.  Our week started with George Hendry’s two hour tour of his winery.  He was a straight shooter who had obviously done some hard work during his time, as shown by the wear of his shoes, the roughness of his hands, and the aged skin that had spent many long hours in the sun.  But I loved his cantankerous demeanor and hearing him talk about wine with great passion and a suprising level of understanding.

I think this is one of the first vacations in which I was content to sit for hours and just listen to stories.  I took photos to remember rather than be able to show the amazing places I had been.  The wine was great, but not nearly as great as sitting on a deck listening to music while we listened to someone’s story.

If you ever make it to Napa, I highly recommend veering off the beaten path and looking for the hidden gems.  The big name wineries are great and we did spend some time hitting a few of those.  But those are definitely not the stops that are still resonating with me after I've gotten home.