What to Expect: Radiation Treatments and Fertility Perservation

I’m going to start tonight’s blog with a bit of an apology.  I noticed that I really didn’t get much feedback last post and I can only assume that something involves my asking for help financially.  You have to understand that making such a request was not something I ever planned on doing with this blog.  Asking readers to support a charity was one thing, asking for help myself was another.  Desperate times, as they say, call for desperate measures and this out of work nurse was (and is) freaking out about finances and medical expenses.  I really hope that asking for help will not taint this blog and that those reading will once more feel free to comment.

That said, I now present you with a week’s worth of information.

I was very excited about the plans before me: radiation, egg harvest and the clinical trial.  Still, I was also incredibly nervous about getting back to work.  I want to work; it keeps me motivated and gives me something to focus on besides being sick.  It also keeps my brain active.  I like working and love nursing.  Being out nearly two weeks was driving me crazy…

But we’ll get to that.

On Tuesday, I arrived at Dr. Mack’s office ready for what I hoped would be my first radiation treatment.  I was wrong.  Instead, I was placed in a CT machine where the tech measured the placement of my spinal tumor.  She than made five marks with a green marker (which still has not washed off completely!) and rescanned me.  When she was certain of the placement, she went back with tattoo ink and inked my skin.  What was, until this point, mostly uncomfortable because of the pressure in my back suddenly became rather painful.  With a sharp needle, she puncture through the ink to make five small tattoo marks (three along my belly –two above my belly button and one below– and one on each hip).  Of the five, only two didn’t hurt much: the highest above the belly button and the lowest.  The others reinforced why I will never get an actual tattoo; though, as these are permanent, I guess I already have five.  Beat that!

I went to see my boss that day as well and she reiterated that she was uncomfortable with my returning to work.  Breaking my back is a huge concern and, given the pain I’ve been in, no one really wants me to risk it.  Not even Dr. Brooks –but we’ll get to that too.  I left there hoping this would all be temporary and something else would come of it.  I still have that hope.

It wasn’t until Thursday that I had my first radiation treatment –and so far they’ve been pretty standard.  At the first treatment, they took a few X-rays to be certain that the placement of my tattoos and my body’s position were the same before treatment.  They told me this would be done once a week while in treatment.  Then, they marked my stomach again in green marker, this time with a box around the area they would focus the radiation on.  Leaving me laying flat in a machine that resembled a giant microscope, the radiation techs left the room and closed a special door so they wouldn’t be exposed.  Alone, I laid still while they first radiated the front of me and then the back.  Once it was clear, they came back in and helped me up.  The first day, they listened carefully and helped me up in a way that didn’t jar my back too much.  The second treatment, which they had been running late on to begin with, they didn’t listen at all.  They simple pulled me up, jarring my back so badly that I cried.  I must admit, I’m not pleased with this so far and it’s taken a lot of ice, heat and medication to get my back feeling close to comfortable again.

And still if I sneeze or cough, it feels like someone is jabbing a knife in my spine.  Pleasant.

Friday, was a busy day after my treatment.  I met with Dr. Brooks for the last time until June as he is turning my care over to Dr. Borad and Mayo clinic.  I discussed going back to work with him, but had my disability and FMLA paper work with me just in case he wouldn’t budge.  He wouldn’t.  I’ve been officially signed out of work and limited to anything that can be done sitting at a computer.  He wanted to limit even that, but I drew the line at him taking away my internet.  I have to have something to do.  I was definitely disappointed that I won’t be returning back to work; as I’ve said, it means a lot to me to keep working.  I felt like I was making a difference somehow, but that might have been all in my head.  Dr. Brooks said once the radiation was done my spine would heal in time and I had to let it, working as a floor nurse just wasn’t an option.  He’s even gone to bat for me by trying to get the hospital to forgive what little bit of my contract was left (two weeks!)  Here’s hoping that comes back in my favor.

Finally, I met with Dr. Hutchinson about fertility preservation.  They drew some labs and did an internal ultrasound to see if my ovaries had been affected at all.  There was one small problem: he couldn’t find them.  He became concerned that what he was seeing on the machine was either bowel, which was particularly full, or more tumors.  Because I need more tumors.  Because of the obstructed view, he wasn’t able to tell me how my ovaries looked, just that my uterus appeared “perfect for carrying a baby once the cancer is gone.”  Thanks, Doc, I’ll get right on that.

I then met with Holly, his sister, who educated us on the nearly two dozen injections I would have to give myself in my stomach (to stimulate egg production), as well as the one in the muscle (HCG, for maturation), and some antibiotics Milo and I would need to take (to be sure the sperm and eggs didn’t come with any little bacteria).  When all was said and done, I went to check out and was suddenly told I’d be paying for the entire IVF, not just the lab fees.  I started to freak out since Fertile Action and Dr. H had told me it would just be the lab fees!  Holly came out later and told me that it would just be the lab fees and the anesthesia, the rest would be done at cost because of my circumstances.  It’s bad enough the drugs for preservation are ridiculously high priced, but to have a doctor lie about donating his services and blind side me with the costs was almost too much!

The injections, thus far, aren’t too bad.  I’ve done two and left small bruises even though the needles are rather sharp.  My skill at injecting isn’t so great thanks to it being myself.  I hate needles, ironic I know, but I was good at giving them to patients.  I only hope I can find someone to do the HCG one because a) I can’t imagine giving myself an IM shot when I hesitate on the subcutaneous (into the fat) ones right now and b) I don’t trust Milo to do it!

I continue with radiation (every weekday at the same time for ten days) until May 9th and will see Dr. H again this week to see if the injections are overriding the Lupron and producing eggs.  I sure hope this works; we want children so badly!

Call Me Lab Rat Number Five

Monday was a big day full of many decisions for Milo and I.  On the drive to Phoenix, we had a few things to consider before we moved forward with anything.  Here’s the rundown:

  • Do we want to do the free egg harvest in Vegas or make embryos here in Tucson?  Decision: Embryos.  We also want to go ahead and find a surrogate because we have decided that we want to do an implantation sometime this summer.  We’re starting our family whether Dr. H likes it or not.  Life doesn’t wait and I’d give up my entire bucket list to be a Mom.  In fact, my original bucket list read 1) Get married and 2) Start a family.  I removed number two when I was diagnosed.  I never should have and it is going back on as of today.
  • Do we take up Lyn’s offer to talk to a homeopath?  Decision: Maybe later.  I’ve always tried to find the balance between conventional medicine and homeopathy.  I think somewhere they can work together and be beneficial to a patient.  However, if giving up conventional treatments is what is necessary for homeopathic treatments to be done, I always worry.  I wanted to give the doctor at Mayo Clinic a chance before I wrote off formal medicine.
  • Do we want to try the new chemo if Dr. Borad at Mayo didn’t have any new suggestions? Decision: Unsure.
  • Who would we want as our surrogate?  Decision: We have had a lot of offers, but the very first one came from my sister-in-law, Susan.  We decided we’d discuss with her and the other surrogates, see who was still interested and run them all by Dr. H to see whom he would thought would be best.  We’d then worry about travel arrangements and such.

So with some control in our hands and a plan, we arrived at Mayo Clinic ready for, what we hoped, wouldn’t be another disappointment.  Much like Dr. Ong’s office, Mayo Clinic is an example of what health care can look like when unlimited in funding.  Large windows, a live pianist, gift stores, a lovely cafe…it was like walking into a four star hotel and not a doctor’s office.  It was soothing listening to the water fall and, despite being nervous and still having some back pain, I felt rather good being there.  I was definitely hopeful.

My hope was not misplaced.

For the first time in months, I finally found someone who had a plan of action.  Dr. Borad expressed interest in me as a study because I was young.  He immediately said he would run the DNA for my tumors as part of his grant money program and we’d have it back in a few months.  The cost: none to me except time.  He is going to biopsy my liver again and my lungs (YAY!) to do a comparison on the DNA and type of cells.  He said there’s a small chance what is in my lungs could be some kind of infection and not cancer at all.  Wouldn’t that be nice?

The only down side: the biopsies will have to be done at Mayo hospital in Phoenix and the lung biopsy could require a hospital stay.  Hello financial drain.  I just tell myself that a treatment plan and possible remission is worth everything I have.

He then told me I qualified for a research study (YAY!)  I will be part of a study of PEGPH20 –yea, it meant nothing to me but “lab rat” too.  Apparently, cholangiocarcinoma is what they call a “solid tumor”.  It tends to be contains a layer of scar tissue that doesn’t really absorb chemotherapy very well, which is why they find radiation works best on it.  Can’t miss with radiation.  PEGPH20 is expected to break down the scar tissue and reveal the tumor, which can then be hit with more traditional chemotherapy agents.  Dr. Borad would like me to be one of the study participants, I agreed, and sometime at the end of May we’ll start with the clinical trial.  In the mean time, I have radiation with Dr. Mack, a fertility specialist to harvest eggs, two biopsies to have and a thirty-first birthday to celebrate.  I won’t be busy at all.

Today, I find out what I can do about work.  I’ve missed four shifts because of appointments and back issues, which decreases my stocked PTO pretty badly.  I need to get back to work as soon as I can so I can start saving PTO again and still be flexible for all the appointments.  My boss has been amazing with working things out, I hope we figure something out because I definitely need to keep my insurance.

And finally, here’s my plea:

Yesterday, when we made the decision about working with Mayo Clinic and getting the egg harvest done, Milo and I had some logistics to work out.  Mayo is two hours away and for some of the tests I would need to be there multiple days.  Fortunately, my dear friend Deb offered us a place to stay when we need it.  During our talk, however, I expressed concerned about financing the egg harvest and balancing the forthcoming medical expenses.  While anything involved in the clinical trial is free, the biopsies, I believe, are not included.  With the potential of needing to go out on disability, even temporarily, is looming ahead, there’s a lot that we will need help with.

Deb had a solution that I had considered but wasn’t sure would work.  She was confident it would, however, so here it goes.

I know times are tough for everyone, but help is most definitely welcome.  I know there are a lot of scams out there, but I am not a scam.  I’m a thirty-year-old woman who has been pouring her heart out on this blog for eight months.  I’ve posted pictures of myself and my scars, I’ve been honest, sometimes overly so, with each of my readers.  I’m doing the best I can; we all are.  So if you feel so inclined and have the means to do so, I have added a donation button to the website.  The button works through paypal, accepts credit cards and does not require you to create a paypal account (or so paypal has assured me in my signing up for the button.)  If you are not comfortable using the button or paypal, you can contact me and I will privately provide a way to donate.  The money is going towards medical expenses.  The donate button can be found on the sidebar to the left.  Please consider helping, every little bit with make our dreams come true.

Still Here

I apologize for being MIA over the last few weeks.  I kept reminding myself that I had to blog; there were people waiting for updates on my treatments.  Unfortunately, much like bills, I put it off until it was absolutely necessary.  Blogging, the last two weeks, seemed like a chore, especially since little in my world seems to be changing for the good.

Let me take you back to Easter Sunday.  Prior to that, my pain had been controlled and we were waiting impatiently to meet with Dr. Ong and finally get, what we hoped would be, some good news.  Unfortunately, the pain in my back, that day, became fairly intolerable.  I had trouble finding a comfortable position when sitting at dinner with our families and used a heating pad just to get slightly comfortable.  When Milo and I finally got home, I tried to get ready for bed only to burst into tears.  The pain was easily the worst I had ever been in and I finally broke down and took half (yes only half) of an oxycodone.  The next thing I remembered was waking up the following morning.

Fortunately, the pain normalized over the course of the week.  I was back to dealing with it via ibuprofen and lidocaine patches.  It was tolerable when I went to Dr. Ong’s for the follow up.  My patience, however, was non-existent.  We waited well over an hour to see Dr. Ong, only to meet with him for about ten minutes.  He reiterated that he was not willing to do surgery right now, that no one would touch the multiple tumors on my lungs and that my only option was chemotherapy.  Dr. Ong also mentioned that the panel originally thought I had been misdiagnosed until their GI specialist looked at my biopsy slides and agreed that I had cholangiocarcinoma.  Apparently, a thirty-year-old female, in their minds, could not have this disease and they assumed it was a liver met from ovarian cancer.  The GI specialist recommended we try two different chemo drugs, Avastin and Abraxane, which are both off label and very expensive.  Where have I heard that before?

Three days later, we met with Dr. Brooks and decided not to do another round of irenotecan.  We discussed the two new drugs, which he warned insurance might not cover –joy– and going forward with our plans to see the Mayo Clinic for suggestions and clinical trials.  Our final conversation piece was about Dr. H and my fertility.  I want an egg harvest; my biggest regret all these months has been that we didn’t have eggs to harvest.  Lupron can’t be doing good things to my body and Milo and I have discussed having a surrogate have a baby for us despite still trying to fight cancer.  I know the idea sounds crazy, but my bucket list used to have a top two on it that I removed when I posted it on this blog.  Number one was get married.  Done.  Number two was have a family.  I want children, have always wanted children, and Milo and I know that I can have six months or six years with this cancer.  We don’t want to give up the children part of our marriage because I might die.  If we had eggs, we could have babies.

Insert appointment with Dr. H this week, who is willing to harvest for the small sum for eight thousand dollars.  Milo says we should do it anyway.  Maybe we can do a payment plan and if we can get them to do a transfer right away, it’s only a thousand dollars more and we could have a baby in nine months.  We have plenty of surrogates willing to help out, but I’m concerned about the money.  I’m concerned about leaving my husband with a baby to care for when he is grieving.  I’m just full of concerns and the overwhelming desire to be a mother.  I don’t know what to do about that.  (In the process of writing this blog I contacted Alice from Fertile Action who told me that she has a doctor in Vegas willing to do an egg harvest for free if I am willing to harvest just eggs and not embryos.)

Of course, this was all complicated by my pain this week.  Last Sunday, I woke up in pretty bad pain after a night at my in-laws’ home where we were saying goodbye (they snowbird and are heading back to Michigan).  By time we got home, I had already taken a half of oxycodone and then another full one while we were at dinner with friends.  The pain was so bad that Milo even had to help me get off the toilet bowl because I couldn’t put weight on my right leg or else it felt like electricity running through my leg.  It was terrible and only became worse over the following two days.  I was taking my pain medication every four hours and being wheeled around in a wheel chair to get errands taken care of.  I was miserable, still am but now at least I can get around with a walker.

Thankfully, when I saw Dr. Brooks last he ordered me a consult with a radiation oncologist, who we met yesterday.  Dr. Mack is exceedingly funny and kind.  We start radiation on my spine on Tuesday in hopes that the tumor there will go away and I will have my life back in some way.  Of course, this brought a fresh round of worrying when it comes to doing hospital nursing and my manager, as always, is being kind, patient and helpful.  Currently, I am off the schedule until the middle of the week and we will revisit my options on Tuesday as far as working is concerned.  I want to work, but now more than ever I am afraid I am going to hurt myself trying to do what I’ve been doing.  At some point I do have to worry about me.

So that’s it.  I’m still here, still fighting and still trying to figure out what to do next.

Some Good Stories…?

Since the doctor’s office, things have been a little…strange.  I spent the days after meeting with Dr. Ong in a major depressive funk.  I would burst into tears without warning and sometimes over the silliest things.  The only time I was truly comfortable and distracted was work.  It was there, and only there, I stopped thinking about myself and what might lay ahead of me.  At the hospital, I was nurse Janine and I needed to take care of someone else; my patients trusted me to do the best for them and I threw myself into that instead.

The problem with work as my only true distraction, because my online classes just doesn’t keep me busy enough when I am alone, is that work cannot be an everyday thing.  Physically, I can do three, maybe four, shifts.  That’s not enough of a week to entertain my brain.  With Milo working six days a week, there are plenty of days to be alone –even if only for a few hours– and too much time to think.  It starts from the moment I wake until the exhaustion takes me to dream land at night.  There is no peace: not showering, not watching TV –which is almost the worst distraction–, and definitely not listening to music.  Somehow, everything sets me off and I become a blubbering mess.  The Thursday after my appointment was by far the worst.  I called Milo in the morning, per our ritual, only to start sobbing about how this wasn’t fair; why should a good man like him have to lose his wife?  Why was he being punished this way?  I understand I’m no saint, but Milo is just amazing.  He deserves good things.

My crying, of course, worried my husband.  I just couldn’t seem to make it stop.  So when I called Malika, she immediately headed over to see me.  What started as a distraction, ended up being one of the good stories to tell.  Malika had already been headed to my side of town to check out the new Pruis C, which apparently the Toyota dealership near me had in stock.  Since we were out and about, I thought seeing some pretty cars and taking the for a drive, even if I had no intention to buy one, would be a fun time.  Distractions, even retail therapy, are good.  So we headed over to the Toyota dealership to see the car.  It was a beautiful blue shade and drove so nice it made my old, paid off, dying car seem crappy.  The hybrid technology made it get just shy of fifty miles per gallon, which is more than twice what my car was getting.  After test driving it, I was seriously tempted.  So I sent Milo a text with a picture of the car and the words “I can buy car please?”

The next thing I knew, I was signing papers and becoming the owner of the car I’ve officially named Jellybean.

Since, I have panicked several times over my decision.  It wasn’t a cheap car and the future can be so vague.  With my being sick, anything could happen and this was a major expense.  When I was healthy this decision worried me, but now it seems even worse.  What if the down payment I made could have been used towards treatment options in the future?  What if I end up out of work because of treatments or the tumors progression?  What if…?

But I couldn’t let what if rule my life anymore and instead bought the car Malika had her eye on.  I love it and, despite my worries, I have no real regrets.  My car literally stalled on the lot that day and was seriously draining money.  In the long run, I now have a safe vehicle that gets much better gas mileage and is more dependable…

And leads us to story number two.

Despite the pendulum of emotions –ranging from happy, believing-everything-will-work-out-Janine to depressed, I-don’t-want-to-die-Janine– I find that there is a happy medium I reside in most of the time (denial girl).  I am constantly looking for suggestions to make to my oncologist about treatment and praying that some miracle will happen.  Something has to work out, this can’t have been for nothing.  There was a lesson, a greater plan and I will survive…

Today’s a good day.

When we went to Dr. Brook’s office last week, I was having a mediocre day.  We walked in and it was instant nausea.  The smell of the building, of chemicals and cleaning solution, makes me sick to my stomach.  We had made a few decisions before going in: since we were headed to the OMG! Cancer Conference, I was not going to do chemo.  Also, I wanted a lidocaine patch for when the back pain I have is too much for ibuprofen and I can’t –read as: won’t– take my oxycodone.  Since I can’t walk around with ice packs or heating pads attached to my back, both of which help somewhat, then I needed an intermediate treatment.  We also wanted to know what other suggestions there were for treatments.  I really am getting tired of chemotherapy and being sick when I want to go and do things.  What started as three days of nausea and lethargy has stretched into four or five days of misery.  I just don’t want to suffer for no apparent reason.

Unfortunately, Dr. Brooks was not in for personal reasons, though that didn’t stop him from answering my phone call or text messages.  In fact, he told me that hearing from me always brightened his day, even if he had to see me for such negative reasons.  I have a pretty awesome doctor.

While he was on the phone we agreed to the patch, which his nurse practitioner ordered for me, and that I would skip last week’s treatment in favor of not being sick for my entire trip.  After my appointment with Dr. Ong on the tenth, we would reconvene and decide what our next step would be.  In the mean time, we’d both continue researching and see what happens.

Poor Linda really didn’t have to do anything but write a script.

I was very pleased that we made the decision to skip chemo, not just because of the trip but because the second we left the doctor’s office I started to feel better.  Cancer leaves a patient with so little control, anything I can do to take some of its power away makes me happy.

Friday, after months of campaigning and planning, we left for Vegas and the OMG 2012 Cancer Conference.  I had managed to make my goal of two thousand dollars, which meant my conference fee and travel expenses would be covered.  We drove my cute little Pruis with its great gas mileage to Vegas and arrived at the Palms just before the kickoff party.  Malika and Milo talked me out of wearing my wig to the party –“Everyone here looks like you and understands the hair loss, why worry about a wig?”– and we headed up to the Moon night club.  The Moon was beautiful inside and the view of the Vegas strip was breathtaking.  I loved looking out across the sky at all the lights, but I was too shy to walk over and talk to other people.  Some looked healthy, as if cancer wasn’t even on their minds, others made me thankful for the health I had as caregivers pushed them around in wheelchairs.  It felt odd to be among so many people, vendors and cancer patients, that understood what I was going through.  I felt, for a little while, like I wasn’t really alone anymore.

We left the launch party early to find dinner, which consisted of the world’s greatest sushi at Little Buddha.  By time we finished eating, a day of driving caused us all to want to hit the sack in preparation for day one of the conference, which started with breakfast.  The tables each had a little sign on them to encourage discussion.  We sat at “Snookie destroyed our civilization.  Discuss.”  but only because the table “Team Edward. Team Jacob. Team Who Cares?” was full.  (Sorry if you don’t get the references folks, ask and I shall explain.)  No one ever did join us, which was disappointing, but we also were able to finish quickly and get good seats for the conference.

The conference wasn’t quite what I thought it would be.  It started with a speech from Matthew Zachary, the man who started Stupidcancer.org.  He is a survivor of cancer and during his treatments he realized how lonely it could be.  The more research he did, the more he discovered how poor treatment and survival rates were for people in the fourteen to forty category.  He wanted to change that, so he founded a little website to unite these cancer patients.  A little website that eventually would break records and forge a community of people who needed a shoulder to lean on and someone to understand.  Then, came the conferences.

After Matthew enthralled us with the history of Stupidcancer.org, he told us that things were changing; we were causing change.  Doctors were listening and researchers were seeking answers.  Sitting there, listening to him speak, I kept hoping for some kind of relief.  What I felt instead was disappointment.  Was all of this too little, too late?  Would any of these doctors be able to help me?  If there was no such thing as a bad cancer, which Matthew stressed, then why did I feel like I had been granted one of the worst?  Why didn’t any of the progress make me feel better?

Matthew’s speech led into an interview with Will Reiser, the man who wrote 50/50 based on his own life.  Will was probably the highlight of the entire weekend for me.  He’s sweet, soft-spoken and very much a model of what someone given a lousy set of odds can do.  I was very excited to see him in person and later meet him at lunch.  I simply wanted a photograph with him, but he took interest in me.  When I said I was failing treatment and desperate for options, he gave me the name of his personal alternative medicine doctor in New York City and said to use his name to get in and see him.  Seriously, that’s how awesome this guy is.  Will Reiser is awesome.

The final segment before lunch was “games man,” who did a duck collecting competition.  While I didn’t learn much, the game was a lot of fun and I kept the ducks for my bathroom.  For the record, I need no more rubber duckies (not that I’d send them back or anything.)

At lunch, we were encouraged to sit by cancer type (or caregiver if we didn’t have cancer.)  When I walked in, I scanned the types: breast, thyroid, soft tissue, testicular, lung, colorectal/bladder, lymphoma…etc.  What wasn’t represented: cholangiocarcinoma.  It wasn’t there in the vague (like GI cancers) or the specific.  There I stood, in a room full of cancer survivors –even those still in treatment– and I was still horribly alone.  I was a one in a million type of cancer* (*some statistics may vary or be exaggerated.  This is one of those.)  I had no treatment plan.  My survival outlook was poor.  All the support in the world wouldn’t change any of that.  So I stood there, looking around for a place to sit before seeing Will and going to talk to him.  Then I sat at the caregiver table and spent the entire lunch hour explaining why I was there to other people.  Well, that and complaining that it was odd to serve processed meats (cold cuts) at a cancer conference.  Poor planning there.

The afternoon was a lot of being spoken at, which wasn’t such fun.  We learned a little about the law and cancer being qualified as a disability, which meant we had certain rights.  I was glad we stayed for that, though my boss has been really awesome about working with me.  The second session we attended was about spirituality, which I sometimes feel I am lacking.  This ended up being a very cleansing experience, and one of the best of the conference.  Six of us got up on stage and explained why we stayed for the session.  One said she stayed because every day she prayed to God for a miracle and knew that this was His plan and he would lead her through.  Another said how angry she was that God not only gave this cancer to her, but took her brother with the same cancer.  She was pissed and it showed.  When I finally got onto the stage, I said that I stayed for answers.  I had hoped someone would say something to me that clicked.  I dwell often in the land of uncertainty.  I believe in a higher power, but I was definitely uncertain about God.  How could a loving father punish his child by allowing them to have cancer?  Or worse, giving it to them?  How could He do this to me?  What had I done wrong?  I explained I was angry and I wanted someone to say something about God to make me understand and believe, to trust.  What I found instead was a sense that I was not completely alone.  Everyone was angry and bitter over the fact that they had to go through this, even if they did believe.  I found a sense of camaraderie in a time when I felt normally alone.  It was the best gift I could receive, even if there was no cure or treatment.

After this part of the conference everyone reconvened for awards.  I didn’t win the car, or an iPad, but I was recognized for my collection.  When the award ceremony was finished, we hit the strip for some fun.  I do regret not going on the roller coaster at New York, New York, but fifteen dollars a person seemed slightly ridiculous.  It was still a lot of fun, though, and it’s been so long since I’ve seen the Vegas strip that I enjoyed it a lot.

We didn’t attend the second day of the conference, only because we were tired of being lectured at.  Instead, we had breakfast on the strip and hit the road early.  This brings us to story number three.

We detoured slightly to the Hoover dam, which was only slightly out of our way.  It was when we got to Kingman, however, that I suddenly became ridiculously spontaneous.  I’m not normally someone who does the spontaneous thing.  I like plans, lots of plans.  Over-planning even.  So when I saw a sign saying it was just two hundred miles to the Grand Canyon, it surprised me that I exclaimed: “I want to go to the Grand Canyon today!”  Malika and Milo, reluctant as they were, gave into the whims of the cancer patient.  The next thing I know, I’ve changed into pants, even if I was still wearing flip-flops,, and rerouting us to the Grand Canyon.  Two plus hours later, we arrived at the Grand Canyon.

How would I describe the Canyon trip?  Freaking cold!

It was about forty when we got into the Canyon.  My fingers and toes were numb; all I had on were track pants, a sweat jacket, t-shirt and flip-flops.  I was not prepared for cold.  Neither was Malika.  Milo, of course, didn’t mind.  To him, this was “spring” weather –gotta love my Michigan man.  We were able to get a few shots at one of the areas before we decided to move to a different location.  In the process, however, is when the real fun began.  Prior to leaving the first area, we noticed some clouds but thought nothing of them or the fact that Malika’s boyfriend, who had joined us, told us it was supposed to snow in Flagstaff that night.  These clouds, however, were more ominous that we took them for.  In fact, as we were driving to the second area, and passing some lovely elk, it started to flurry.  By the time we arrived at the shuttle to take us to the second spot, the flurries were a full snow storm!  I was freezing and the Canyon was a giant cloud.  To me, it was time to leave, so we did.

We might not have made it to all the sites or made it home before midnight, but the weekend was a wonderful one.  I managed to kick an item off my bucket list and have some laughs with my husband and friend.  Despite feeling alone at times and depressed at others, I realize there is too much left to do to give in.  I am going to spend my days off researching options instead of letting little things, like the thought of my husband’s laugh or smile, make me cry.  I won’t worry about what I will be missing or what my family will deal with when I am gone because I am going to do my best not to be gone.

And I will keep living my life looking for the next great story.

**For the whole album of photos, you can visit this link: Vegas Road Trip