{tomorrow}

April 16th was the one year anniversary of my diagnosis.  It was an emotional day, but I enjoyed the day very much.  I celebrated a year of LIVING with cancer.  I’m in a strange place of limbo, where I was told I am in remission, but my upcoming (tomorrow!) stem cell transplant is needed to keep the disease away.  So, I sometimes wonder…..has it come back?  Is it in their somewhere?  I occasionally feel anxious and wonder if the small, little pains I feel in my chest are the tumors coming back.  This is the reality of my life.  I don’t think that will ever go away.  As the days pass, I think I will just learn to manage it better.

So, tomorrow is the day I leave for my stem cell transplant.  I am so ready to get this show on the road.  My hair is already falling out again.  The first 5 days of the transplant are intense chemo.  I will probably be bald before I even leave the 3ish week process.  While that is something that I am not looking forward to (it grew back about 2.5 inches so far), it is certainly the least of my worries.  I just want this to work.  I just want this to work.  With everything inside me, I just want this to work.

One of the hardest things I have had to deal with is planning for the future. It is so hard to do that, when things are so uncertain. Will I be gone for 2 weeks or a month?  Will I get sick while my immune system is destroyed?  Will this cure me of this horrible disease?  But, really, when are things not uncertain?  Do any of us have a guarantee for tomorrow?  No.  But, I struggle with realizing that is reality, and being responsible in planning for my life and business.  I don’t want to plan work for the summer only to disappoint clients.  I don’t feel that is fair to them.  Right now, my clients are on a waiting list and know that they will be contacted as soon as I feel I am recovered enough to take on work.

Two days ago, I took a step toward planning for the future.  I took the necessary steps to secure travel for a photography workshop in June.  It is very uncertain if I will be well enough to attend, but it feels so good to even entertain that idea.  The workshop is something I have wanted to attend for over a year now.  This is giving me something to work toward.  A goal at the end of all of this.  The photographer holding the workshop was nice enough to work with me, understanding the unpredictability of my situation so that if I can attend, I will.  If not, no worries.  No worries of disappointing anyone.  I’m doing this for me.  I’m so hoping I can do this for me!

I normally have a senior rep/model program that I run Spring-Summer.  I feel so bad that I had a couple of students hoped to be included program, and they were so excited about it.  There is just no way for me to be able to take that on this year.  That is the kind of thing that hurts my heart.  I know it’s not my fault, but I hate disappointing anyone.  Instead, I decided to run a contest while I am gone that will allow me to work with the winner(s) when I am feeling well and on my own time frame.  I am going to ask them to submit a photo while holding up their favorite quote.  I also want them to tell me 3 things about them.  I think this will be fun.  Here is the example photo I took yesterday.  My niece, Alaina, took part of this photo, too.  I couldn’t have done this without her help!  Thanks, Laney!!! 

I have been wanting to take a photo with these bales as the backdrop for over a year.  I drive past them almost everyday.  I watched them survive the winter, and they look just a beautiful as they did last spring.

I just adore this quote and it speaks volumes about how I feel entering this stage.  I’m ready for winter to be over. This “winter”, however, taught me a volumes about the “summer”. Regardless, the summer lives on within me.  Always.  I choose it to be that way.

Oh, and the 3 things about me?

1. I once had lunch with Billy Corgan, the lead singer of the Smashing Pumpkins.

2. I love pickles, but never eat the butt end. Yes, there is a butt end.

3. I once peed my pants in the bookmobile (in the name of friendship).

I’ll be positng the contest details here on my business blog later today.

{365 days}

One year ago right now, I was getting ready for an appointment with Dr. Han to discuss the results of my lymph node biopsy.  I remember thinking how strange it was that my mom was going to meet us there.  I remember trying to reassure myself that all was going to be ok.  Cancer?  Me?  29?  No.  C’mon.  I’m a natural born worrier, but I was not going to allow myself to freak out.

One year ago, this date was just my best friend’s birthday and the birthday of another good friend.  One year ago, I couldn’t bring myself to call and wish Jackie a happy birthday, because I was afraid the news would ruin her day.  When I finally did tell her, she was the one that took the news that hardest (at least the one who was open enough to let me see it).

One year ago, I would never imagine that I would be LIVING with cancer for a year, and preparing to leave for a stem cell transplant next week.  The course of this year has been an enormous test of faith, patience, will, and mindset.  If you told me that I would have found countless blessings along this road of diagnosis, relapse, and a failed fertility treatment, I probably would have curled up in a corner in the fetal position and stayed there.  I could never have imagined that I would not only LIVE with this, but live well and find peace and beauty and gratitude in this journey.

One year ago, I thought I would be cured by now, and that this part of my life would be over.  Although I’m not to the finish line, yet, I realize this will never be over.  It is a part of me.  That will never change.  I’m trying to learn right now how to move through life with this new part of my world.  And, you know what – I hate cancer.  I despise it.  However, for me, I can see how it has made my life better.  I have to be thankful for the blessings I can find, and I tell you what – they are everywhere.

I am going to ask for some prayers.  This morning,  Deb Ware lost her battle with cancer.  I have never met her, but I know her daughter, Melissa.  Melissa spoke of her mom with so much love, so much admiration. She referred to her as her “best friend”.  Melissa is young.  She is good friends with my niece, which is how I know her.  She can’t be but 23.  My heart absolutely breaks for her and her family.  Deb and I would send our well wishes to each other through Melissa.  Along with many others, I was rooting for her to beat this awful disease.  Please pray for her family, as they walk through this horrible time. RIP Deb.  May the wonderful memories you made with your family carry them through this hard time.  My thoughts and prayers are with you, Melissa, and your family.

{please?}

Dear Stem Cells,

I don’t really understand how the shots I am giving myself which are made from a strand of E.Coli are making you be produced more rapidly in my body.  I guess there are about a million of you in me right now.  I need to have 8-10 million pulled out of me to save my body during the transplant.  Can you PLEASE get to doing it (whatever “it” may be), so that I can get on with this process????  Gas is over $4 a gallon, and I don’t want to be driving to Chicago each day this week, just to be told to go home.  You are testing my patience.  Really, testing.  It doesn’t help that the dr.’s aren’t calling the nurse back, and I’ve been sitting here for 3.5 hours just to be told to probably go home.  I want to get this process started, and I NEED you to cooperate.  Please??

Sincerely,

Me

{waiting}

First, I have to thank you guys for all of the amazing comments.  I just read through them all, and was so touched by each of you that reached out.  That last blog post was hard to write.  I’ve promised myself to be open and honest about this, hoping it will help someone else like blogs that have helped me through this.  I’m sending you all a big ((HUG)) right now.

Right now I am waiting.  Waiting to hear when I leave for the harvest (maybe tomorrow).  Waiting to find out if I will need to take another $2500 shot to put me into menopause for 3 more months in order to try to save my ovaries from the chemo (hot flashes SUCK, by the way).  Waiting for my nurse to get here to take my blood and flush my picc line. Waiting for the puffiness of my month on steroids to fade.  Waiting to take a regular shower once this line comes out.  Waiting for that word – remission.

There is a lot of waiting in this journey.  At times I feel like I’m waiting for my life to begin again.  Each morning I see the school bus pass my house, and it is a reminder that a part of my life is going on without me.  The emails that are waiting to be returned by me from prospective clients that would like photography session are the hardest to return.  I try to eloquently explain that my business is on hold until I come home and am healthy enough to work again. Would they like to wait until summer to hold their session?  I will have to wait and see when I feel strong enough again, as they say recovering from the fatigue is the hardest part, and it can take a long time.

I do realize though that there is a lot of living going on right now.  I’ve been blessed with a wonderful week of energy and life.  I’ve been living it!!  I worked, I visited, I planned for the future (that is so hard to do in this space).  I’ve laughed.  I’ve loved.  I’ve cried.  I’m waiting to get back to my old life, but ready to live it differently.

And, right now?  I’m literally waiting for my dear friend from college to arrive to spend the day with me.  K-F-C, granny smith apple, Krazy Kelly, ass pants – she is the girl with a million nicknames. We haven’t seen each other in a few years, and I’m so excited to spend the day with her. Well, I saw her this summer, but it was only for about 15 minutes, so that doesn’t count.

Love that girl.

While I’m waiting for her I’m also wrapped in one of the sweetest gifts I have ever received.  Have you ever heard of a prayer shawl?  A colleague made me one and dropped it by yesterday.  She explained that each stitch was made while praying for me.  AYKM?  Amazing.  I’ve often said that all of the support and prayers I am receiving feels like God is giving me a big ‘ol hug.  She expressed that was the exact idea of the shawl.    All of you – thank you for that.  During all this waiting, I’m feeling quite peaceful in my heart.  Thank you for helping me to feel that.

(it’s purple and I L-O-V-E love it)

Peaceful enough to actually post a pic of what my hair looks like now.  I’m enjoying taking little bits of it and twirling it around my finger.  Just like when I was little.  The color is the dirtiest dishwater blonde, and I’m trying to enjoy it while it is still here.  Even though it makes me look like a lesbian Will Ferrell impersonator. 

{navigating}

I have had an amazing week of feeling great and being active and living life.  I’m in awe of how quickly my body can recover.  This week has been a blessing, and I’m enjoying every second of it!  I’m going to take a little time to back up my story a bit, and describe what happened between finding out I relapsed and now.  I wish I could have updated as things were happening, but December-March were ROUGH.

I found out in December that I needed a stem cell transplant and to do some salvage chemo in order to prepare for the transplant.  But, there was this big issue looming overhead.

Fertility.

Anyone that knows me, knows what my life is about.  I have two careers that I love with all of my heart.  The heart of those passions happens to be children.  I knew I wanted to be a teacher when I was 5.  I can remember wanting to babysit before I was old enough to be left on my own.  I can remember telling someone when I was 10 that I not only wanted to be a teacher because I loved it, but because it would be the perfect career for a mom to have.  Then, after I achieved my dream of becoming a teacher, I discovered another passion.  Photographing  children.  Basically, you can see where this is going……I love everything about kids.  Even though I have two careers that I am so blessed to adore SO much, I was put on this earth to be a mom.  I’ve known it and felt it as sure as anything I’ve ever known.  That is the job I’ve been waiting most anxiously for.

Knowing that, feeling that, has been both terrifying and a blessing.  I’ll start with the terrifying.  It wasn’t until mid Feb when I had been in bed for two weeks unable to eat or speak that I had my first “why me” moment about having cancer.  I was miserable and weak and terrified that I wasn’t going to get stronger.  That was a breaking point for me.  From April-Feb, though, my only “why me” thoughts were “Why am I not a mom?”.  Now, I realize, this experience would be much more difficult with children.  I realize there is a plan, and that it will indeed all work out as it should.  But, hearing that my ability to have a child may be taken away by the treatments to save my life just plain stunk.  There was a definite grieving process that went along with that.  While I know there is no way they can tell me for certain I will be infertile, the odds are stacked against me after the stem cell transplant.  I feel the need to be very realistic in recognizing that it may just never work out, *biologically*.

Fertility was the second question I asked when I found out I had cancer.  Donnie and my mom had already looked into it, but they didn’t have any specific answers for me.  I had to wait until I met with my oncologist, Dr. Tothy, for the first time to find out what my options were.  That first meeting with Dr. Tothy was intense.  My back was out.  I couldn’t even sit up on my own.  I was having trouble breathing because of the mass in my chest.  I learned all about chemo, radiation, pet scans, staging, etc, etc.  It was so much info, but I really held it together. I was in pretty good spirits and taking everything in stride.  But, Dr. Tothy didn’t have any certain answers for me, either. when it came to the fertility issue.  However, he did want me to see someone.  There was a specialist in Chicago that had a certain interest in fertility and oncology.  Dr. Tothy then said the name of the specialist in Chicago, and I dissolved into tears.

The last name of the specialist is the baby name I have had picked out for years.  It is the *only* baby name I have had picked out, and I have never met anyone with this name.  I don’t know why I feel strange actually sharing that name with you all, but for now I’m going to keep it to myself.

So, yeah…..that was pretty wild.  It was like God was giving me a little bit of reassurance that my most important job was still waiting for me at the end of all of this.  We went to see said specialist (let’s call him Dr. Embryo), and we decided that the chemo I was getting was not too terribly risky on the fertility front.  We decided that I would do nothing, and hope my body would survive the onslaught of chemo.

Then come December, when I went to see the lymphoma specialist, Dr. Smith, at the University of Chicago  she suggested I go see Dr. Embryo.    She had no idea that I had previously visited him.    When I saw him this time we decided action needed to be taken.  Since the masses were still small, my oncologists felt comfortable holding off on treatment so that we could try to freeze embryos.  By some miracle, our insurance approved paying for the $15,000 procedure, so we decided that was a sign that we needed to go ahead and give it a try.

Over Christmas and New Years, I was giving myself three hormone shots a day and driving to Chicago almost daily for blood work and ultrasounds.

Each time I was waiting for an ultrasound, I would see this picture.  It is very sci-fi-ish.

Fun.  Fun.

But not really.  I did tried to have as much fun with it as possible.  Each time I had to go to the city, I would need to be there at 8 am.  I would plan a little adventure after the appointment.  One time, I took my niece up to the city to see the Christmas lights, walk around downtown, out for sushi, and to the American Girl Store.  Another time, I would found a West Elm store, right next to a Pottery Barn, across the stree from a Restoration Hardware – ::blissful::.

I was really trying to keep myself from being alone with my thoughts too much.  The worst part of this was the anxiety that came along with our decision.  I was holding off on treatment to go through a procedure that really didn’t have great odds of even working.  I knew that trying to freeze embryos was the right decision, but it didn’t make it an easy one.  The masses that had grown since the end of chemo were in my chest.  Well, when you start feeling anxiety, where does it usually happen – in your chest!  At least for me, it does.  I get a tight, sometimes slightly painful feeling.  Which, also happens to be the same type of feeling I had from the masses.  It was literally impossible for me to differentiate between, “I’m having anxiety because I’m making a huge life decision and holding off on treatment to try to hold onto one of my dreams (and these D@#& hormones aren’t helping the situation) or “Crap, I’m holding off on treatment to try to hold onto one of my dreams and the tumors are growing and I can feel them.” It was really tough to navigate through that space.

Anxiety is a funny little devil.

In the end, the fertility treatment didn’t work.  I’m not going to go into all the details, but if you are in a similar situation and need someone to talk to, please feel free to contact me.  Even though I did hold off on treatment for about a month and a half to have the procedure done, I am glad I did it.  It gave me some valuable information about how my body is functioning.  I’m not hopeless that we won’t have a biological child someday, but I’m realistic that we should pursue other options if we want to start a family soon.  And, I’m really excited for that. 

Ironically, I’m writing this just before I leave for a newborn session.  Luckily, until my time comes to be a mom, I have an amazing job that lets me love on little newborn babies and kiddos all I want.  That is pretty awesome!

{the stem cell transplant process has started!}

I made it through the first part of mobilization!  Thursday morning I was admitted, had my picc line placed, and then started 3 days of chemo.  Thursday night, I was given my first chemo, which lasted about 30 minutes.  Then, on Friday, I recieved 3 different chemo drugs.  One lasted an hour, another a half and hour, and the last one took tweny four hours.  After that, I was put on 24 hour hydration.  I was released on Sunday evening.

It went a lot better than I expected.  Thursday I was tired from having the surgery.  They didn’t put me out completely.  I was given twilight sedation.  I’ve had it before, and didn’t remember anything.  This time was different.  I remember it all, but I kept my eyes closed the whole time.  It was so strange.  I was numbed, so it didn’t hurt, but I could feel the pressure of them inserting the line.  Had you told me I was going to be awake for the procedure, I would have freaked.  The sedation was strong enough to make me not care.  At.  All.  That was definitely one the strangest experiences thus far.

Friday I felt great.  The chemo didn’t start until about 7 at night.  I was able to get in a 40 minute work out!  They have a nice lounge with a treadmill and bike that I was able to use.  Saturday, I was on chemo all day, so I pretty much stayed in bed.  Then on Sunday, I felt pretty good again, and was able to get it a 30 minute work out!  I was so excited to feel good enough to be active.

I’m home now, and waiting for my home care nurse to show up and flush my line.  I will start giving myself twice daily shots to boost my stem cell production.  I’m a little anxious as to how they will make me feel.  The main side effects are bone pain and flu like symptoms.

I can’t say it enough……so I’ll say it again……the support from all of my family, friends, and community has gotten me through this crazy time.  I can’t ever thank all of you enough.  All I can do is try my best to get better, so that I can get back to living a fabulous life with you all!  There is certainly a part of this journey that has grounded me.  I’m really excited to get back to living my life – intentionally.

{the road to relapse}

Don’t be alarmed by the title of this post.  I’m going to back track and try to update the blog with info that has taken place since December.  I’ve just recently found a few blogs written by young Hodgkin’s patients that have had to go through more than the standard 6 months of ABVD chemotherapy treatment (which is what I had) to put their disease into remission.  It brought SO much comfort to my heart to read their words and identify with their feelings.

So, let’s start with November 9th.  The day of my PET scan results.  I was so sure my disease was GONE.  I mean, after THREE……just THREE chemo treatments the first PET scan showed all areas but a small 1.5 cm area in my mediastinum had resolved.  I endured nine more chemo treatments to kill off that little 1.5 cm sucker.  How could nine more treatments not take care of that?  I was warned that it would not be out of the ordinary to have a small spot of scar tissue left, so I was prepared for that.  I had my anxieties about the results, but I was pretty sure everything was going to be ok.

So, when Dr. Tothy told me that there was still a small, under 1 cm spot in my mediastinum I was a little surprised.

Here is Dr. Tothy,  by the way.  I don’t like to have a post without photos.

Tears started to well up in my eyes, and then they exploded as he said the spot was still showing up PET positive.  I don’t think I realized how set my heart was on being DONE with cancer on that day.   Donnie and my Mom were with me, and they along with Dr. Tothy tried to comfort me and reassure me that this wasn’t horrible news.  The spot could be inflamed and irritated from the chemo.  It could still be dying tissue that just hadn’t quite resolved yet.  He wanted me to see my other onoclogist, Dr. Smith, a lymphoma specialist at the University of Chicago to have her weigh in on where to go from here.

As we walked into the parking lot, I was sobbing.  My mom tried to hug and comfort me and tell me everything was going to be ok and that the news wasn’t that bad.  That just ticked me off.  I didn’t want her to console me.  I didn’t want her to hug me.  I was shocked that I was feeling so angry.  I just wanted to cry.  I think I grieved more in that moment than when I initially found out I had cancer.

So, I had my breakdown moment.  After I composed myself, I immediately called Dr. Smith’s office to try to get the first available appointment.  Dr. Tothy had advised us for who to ask for, and to use the term “overbook” so that I could get in asap.  I was able to get an appointment the following week.  I then immediately called a client to cancel a session for that day.  That poor client!  As soon as I started speaking, I burst into tears trying to explain why I was canceling the session.  She couldn’t even understand what I was saying.   Looking back, I wish I would have waited to call her.  I didn’t realize I would get so emotional saying the words, “I just found out my cancer isn’t gone” for the first time.  She was, of course, completely understanding and compassionate.  I just feel bad for putting her in that position.  I was totally in auto-pilot at that point, just trying to figure out what I needed to do next.

After that, I started receiving texts and facebook notifications asking if I had any news to share.  I knew everyone was ready to celebrate the good news with me.  I composed a brief text update to those that were waiting to hear.

The following week when I met with Dr. Smith, her assessment was basically the same.

Here is Dr. Smith.

She specifically said that she wasn’t too concerned with the small spot.  She suggested waiting about 3 weeks and then having another PET scan to see if the spot had resolved itself.  She expected it to be gone after giving it a little more time to settle down from the assault of chemo.

Fast-forward to December 8th.  I went in for my scan and was supposed to get the results that afternoon.  Unfortunately, Dr. Smith wasn’t in that day, so I had to wait until the following morning to hear the results.  On the morning of Friday, December 9th, my Mom came over to be with me when I received the call.  Dr. Smith’s nurse called me at around 10:00 and told me that the news was not what I wanted to hear.  Not only had the spot not resolved, but 3 new spots had shown up.

I was stunned.  Stunned.  I was prepared to hear that it was still there.  I was prepared to hear that maybe I would have to have surgery to have it removed.  I was even prepared (but terrified) to hear that I would have to receive radiation to take care of the spot.  What I was NOT prepared to hear was that it had spread.  I was not prepared to hear I was considered a relapsed patient.  Relapse??  What the?  How could I have relapsed when I had never even heard the magic word, “remission”?  The thought really had never even crossed my mind.  I had been SO positive throughout treatment, that maybe I had set myself up for a bit of failure?  I don’t know…..it was just shocking.  She said I would need to meet with Dr. Smith on Monday morning and discuss salvage chemo therapy and a stem cell transplant.  She did assure me that this was still a route of treatment that could result in a cure, and that is the one statement that I clung to desperately over that long, long weekend.

That following Monday was a horrible snow storm.  I didn’t think we were going to be able to make it into the city.  We were an hour late, but we did make it in to see Dr. Smith.  The news overwhelming to say the least.  I learned SO much that day.  I left with my head spinning with the thought of the next 6 months that were ahead of me.  There was quite a process to trying to cure a relapsed patient.  Here is how it was broken down for me.

*For some reason, the chemo didn’t kill off my cancer completely.  This happenes in about 15% of Hodgkins patients.  I was considered to have a persistent disease that relapsed.

*The next step would be salvage chemotherapy.  They were going to give me Doxil, Navalbine, and Gemcitabine.  This was a more aggressive chemotherapy than the ABVD I had received for 6 months.  This salvage chemo would be given 4 times over the course of 6 weeks.

*After I finished the salvage chemo, I would have another PET scan.  I would need to be in remission in order to proceed with the stem cell transplant.  So, in other words, this new chemo needed to work.

*If I was indeed in remission after the salvage chemo, then they would start to prepare for the stem cell transplant.  There is a 3 part process to the stem cell transplant.

- Part 1:  Mobilization: I would be admitted into the hospital to receive a picc line in my chest.  I would stay at the University of Chicago and recieve 4 days of ICE chemotherapy.  This is another aggressive chemotherapy and is given in order to kill any of any lingering cancer cells AND to cause my white count to drop very low.  I would be sent home for approximately 2 weeks.  In that time frame, I would give myself twice daily shots to raise my white counts.  Essentially, the shots would cause my bone marrow to work overtime and flood my blood stream with stem cells.  After my bone marrow had done that, I would move on to the second step.

- Part 2: Harvest: I would have to go back to the U of C for anywhere from 1 to 4 days for them to harvest my stem cells.  This is done through the picc line, and is basically done like a blood transfusion.  Except, my blood is taken out, the stem cells are removed and frozen, and then my blood is returned to me.  They can’t predict how many days it will take to get the needed amount of stem cells until I am up there and actually having the process done.  Once they have enough stem cells, I am sent home for about a week.  Then I move on to part 3.

- Part 3: The Transplant: If all of THAT didn’t sound fun enough, here was the real big kicker.  The transplant starts with 5 days of intense chemo.  Chemo that will take all of my hair, eyebrows, eyelashes again.  Chemo that will completely wipe out my immune system.  Chemo that will most likely leave me infertile.  Then, on day 6, I would be given my own stem cells back.  These basically “save” my body from the chemo, and allow my bone marrow to recuperate from the aggressive attack it had just experienced.  I guess otherwise, the chemotherapy would just do you in.  :/  I would then spend the following two weeks in the transplant unit at the U of C waiting for my blood counts to raise to an acceptable level.  So, I would need to be on the isolation unit for approximately 3 weeks.

Oy.  It doesn’t quite end there, either.  Hopefully, that will cure me.  The success rate is about 60%.  Secondary cancers can result from this aggressive chemotherapy.  The most common is leukemia.  After the transplant, I will have to follow a bunch of rules (no snuggling with my doggies for a few months, no gardening this summer, no swimming this summer, getting re-vaccinated after about a year, taking medication for a year to keep me from getting sick, possibly being in early menopause, etc).  I have an entire binder just dedicated the process and life after a transplant.  Here is another link where you can listen to Dr.  Smith explain the stem cell transplant process.

If you have made it this far, I am impressed!!    As I am sure you can tell, this was a lot to wrap my head around.  It felt so HUGE and uncertain when I first learned about it, that I just couldn’t even bring myself to write about it.  When I had to share the news that I relapsed, I felt not only my own disappointment, but I felt it with everyone else that was supporting me.  It sucked.  I just couldn’t go through that again.  I feel like I have so much to catch up on here, and I am going to take the next week to try to update what has happened since I received all of this news in early December.  More to come soon!