Monday, November 11, 2013

The Purple Tattoo: Life Post Chemo

The Purple Tattoo: Life Post Chemo: It's strange.  In the last two weeks many people have asked about my blog.  I just haven't been excuse really, just bu...

Life Post Chemo

It's strange.  In the last two weeks many people have asked about my blog.  I just haven't been excuse really, just busy with life.

As you know, I finished chemo on June 21 and was considered in remission at that time.  I had my port removed and resumed normal life.  Since then, I have continued to feel better.  My hair is growing back, energy levels are getting better all the time life had pretty much returned to normal.

I had a little scare a couple months post chemo.  I felt a swollen lymph node.  I went into the doctor and he sent me for CT scans.  Everything looked stable.  He then set up PET Scans for tomorrow.

I also started having horrible abdominal pains.  I mean HORRIBLE...rolling around moaning, nothing can make it feel better kind of abdominal pain.  I was sent to the gastroenterologist. She did an endoscopy and ultrasound.  Ultrasound showed fatty liver and she thought I might be having gallbladder issues.  She ordered a gallbladder test to investigate further.  I haven't had that done yet.  Other things got in the way.

On October 6 I drove up to Orlando for a work event.  As I was walking to the Dolphin Hotel, the heel of my shoe got stuck in a crack in the sidewalk.  Down I went.  I left the Dolphin on a stretcher, was put into the ambulance and taken to Celebration Hospital.  It turns out I broke the fifth metatarsel and tore a ligament.  I had surgery on the 18th (my birthday) to fix both injuries and walked away with pins, screws and anchors in my foot.  I am still not allowed to walk on it or drive.  This is the same foot which has had two previous foot and ankle surgeries in 2010 and 2011.  Ugh!

Now, I am scheduled for PET scans tomorrow and will get results on the 18th.  I am a nervous wreck, which I understand is pretty typical and normal for cancer survivors.  There is always that fear, that little piece of my mind that is scared to death they will tell me it's back again.  I am terrified of being told I have cancer again.  I don't think that fear will ever go away.

I did it once, I did it well.  I got through chemo, kept a very positive attitude, stayed strong, kept life fairly normal for my son and beat this stupid disease.  Not sure I have the strength to do it a second time.  I have this underlying fear that if I have it a second time I will not survive.  Rational or not...the fear is there.

I've continued to work through it all and have done well at my job.  I honestly feel I haven't missed a beat there.  It looks like my year is going to end with great reward!!  I am lucky to work with an amazing group of people who have been nothing but supportive throughout this journey.

I went back to being a Chemo Angel.  I had done this before I got sick.  My first patient was a boy with Hodgkin's as ironic as that seems.  He graduated and then I got sick and never put in for a new assignment.  Once finished with my own chemo I got back in touch and got a new assignment.  I am currently angeling for a 2 year old boy who has an inoperable brain stem tumor and has had some other horrible things happen along the way as well.  I love this work, I love the chance to make a child going through the worst smile if even for just a little while.

I've changed.  I've changed a lot.  Most of you wouldn't know just by talking to me, but I've changed.  It's to be expected.  I don't let things get to me that would have before cancer.  I have a more positive attitude than ever before and honestly feel like I am in a better place than ever before.  I am more grateful for my family and friends and of course more grateful for my life.  I found out that I am a much stronger person than I ever imagined I could be.  When I went in for my biopsy last December 28 I thought that if I had cancer I'd never get through would be awful.  Well, it was awful, but I got through it and it and came out okay in the end.
Through this experience I made a lot of new friends and old friendships grew or were solidified beyond my wildest imagination.  I have extraordinary people in my life and I will be forever grateful for all of them. My family has been amazingly supportive even when things got hard for them.  Mark has been amazing.  He has had to take care of both Lucas and I and has done a great job.

While cancer definitely sucks, I can say that in a way I feel lucky.  I feel lucky that I have gotten to see so much good in people.  I am lucky that I learned such amazing lessons about myself.  I am lucky that I have great doctors who helped me beat this.

I am looking forward to good news next week when I get my PET scan results.  I'm looking forward to Thanksgiving as I have SOOOO much to be thankful for this year.  I am also looking forward to saying good-bye to 2013 and ringing in a new year full of good health and time with my family and friends.

I'll try to update again after I get my results.  I have a lot to say....there's so much I could write about, but I'm just busy living life.

Monday, June 17, 2013

The Purple Tattoo: Goodbye Chemo Amy

The Purple Tattoo: Goodbye Chemo Amy: I cannot believe that in just a few days I will complete my final treatment.  I will be done.  I will ring that bell and leave cancer-free, ...

Goodbye Chemo Amy

I cannot believe that in just a few days I will complete my final treatment.  I will be done.  I will ring that bell and leave cancer-free, hopefully forever.  I will no longer be fighting cancer...I will be a SURVIVOR!  It is amazing.  It brings me to tears in just a few short sentences.  I cannot believe it on so many levels.  I cannot believe first of all that I had cancer and had to go through this in the first place.  I cannot believe that I have done as well as I have.  I cannot believe how hard it has been.  I cannot believe how much I have learned about myself and others on this journey.  I cannot believe that the end is so near.  I cannot believe that next week I will no longer be treating cancer.  So, now what?

Its strange to think that for six months my life has basically revolved around getting rid of this stupid disease.  I have lived essentially from treatment to treatment trying to not really think too far in advance.  It is strange to think that when I leave the cancer center on Friday after my shot I won't be going back for a few months until I get my scans.  It's like going from 100 to 0 over night. Of course, I am jumping up and down celebrating the fact that this day is coming, but it is also VERY scary.  Kate warned me of this and she was spot on.  It's scary to think that now I will be doing NOTHING to fight cancer.  How do I know it is not in there just dwelling and waiting for me to stop chemo so it can grow again?  FREAKY feeling.  I know that for a while I will now live in fear from scan to scan worried that it will come back.

So, I go Thursday for my final chemo.  When I am done Mark, Lucas, Mom, Jim and my dear friend Jamie will come to watch me "ring the bell."  For those of you unfamiliar...when you finish your last chemo you ring a ceremonial bell to mark the occassion!  They will be there to celebrate this moment with me.  I think we will have cake.  Lucas thinks every celebration MUST include cake!  I will then go home and crash and suffer side effects and sleep for three days.  Mark calls this person who will appear "Chemo Amy."  This will be her last appearance folks.  I'm hoping we won't ever have to see that girl again!

I cry just thinking about it. What a journey this has been for me.  I have learned alot.  As I said, I've learned a lot about myself and others.  That's another week.  I want to share with everyone who has been reading all the things I have learned.  All the wonderful things I have seen in others as they share and offer help.  I'll also talk a little about how cancer has changed me and what I've learned about myself and what comes next for me.


Wednesday, May 15, 2013

The Purple Tattoo: Good News and More

The Purple Tattoo: Good News and More: Well, it has been too long since I last updated, but  honestly I've just been sick of cancer and haven't felt like writing about it....

Good News and More

Well, it has been too long since I last updated, but  honestly I've just been sick of cancer and haven't felt like writing about it.  I do, however have lots to share.

I have complete treatment number 9 of 12!  Only 3 more to go and I am DONE with chemo!  Looking forward to that very last day more than you can imagine!  Cannot wait to ring that bell at FCS!

After treatment number 8 I had PET and CT scans done.  They were GREAT!  All of the lymph nodes that showed active cancer in my first scans have shrunk in size, the tumor in my left lung is completely GONE and the PET scan did not show active cancer ANYWHERE!  Nothing lit up!  The chemo is working it's magic!  This was amazing news.  It was so stressful going through all of these treatments having no idea whether or not the chemo was working and killing the cancer.  I feel so relieved to know that it indeed is working like they expected.  I now feel like, "I CAN DO THIS,"  and am a little rejuvenated mentally by this news.  Cancer is not only hard on the body, it's hard on the mind as well.  While I have tried hard not to let it get the best of me or really show the world how scary it has been, it has weighted on my mind every second of every day.  I have lived in fear that I would have these scans done and the cancer would still be there and I would be looking at "now what?"  I am very aware of how fortunate I am to have these results...I am very aware that I am fortunate to be able to start looking at life after cancer.

Lung damage...the pulmonologist says the scans show no permanent damage, just inflammation in the right lung.  We have opted to leave it alone for now with the hopes that it will heal as my body gets stronger.  I will have pulmonary function tests and scans repeated once I finish chemo.  More good news!

Side effects are the same, tired beyond belief and weak.  Hot flashes all my girlfriends out there, GET READY!  Hot flash is not an adequate name...I have seen every hour around the clock for almost a month because I wake up sweating every 60-90 minutes.  I could literally wring out my clothes.  They happen around the clock awake or asleep and I will say it again, THEY SUCK!

We have had some visitors.  Randy came to visit Mark and help us celebrate his 45th birthday!  They guys had a fun weekend of golf and beer and as a bonus they took Lucas to his first Cubs game!  They went to see the Cubs play Miami and had a great time.  It was good to see him and we all wish he would visit more often!

My dear friend Jacki also came to visit.  It was fabulous to spend time with her and just hang out and be normal.  We shopped, went out for lunch and enjoyed a little bit of time outside next to the water enjoying a couple of frozen cocktails.  It means the world to me that she came to spend some time with me!  The best thing about "old" friends is that you don't have to pretend...they just know and it's okay to just be yourself.  We got to celebrate my good news as it came just before she arrived.  I'm hoping she and her family will all come on a trip soon when I am healthy and we can have even more fun!

The last months have been quite the journey for me.  I have learned a lot about myself as well as other people.  I am always amazed at the stories shared with me about how cancer has affected people or their friends and family.  I'm realizing that I won't come out of this the same person that I was before this diagnosis.  Hopefully, I'm coming out of this a better, stronger person.  I can say that before this I thought having cancer would be just horrible...and it is, BUT I've come through it better than I could have ever imagined.  Previously I would have thought it would break me, send me to bed to never come out, but I have managed to stay strong, maintain as normal a life as possible, go to work, etc.  If I can do this, survive THIS...I'm thinking I can do just about anything!

Thursday, April 18, 2013

The Purple Tattoo: Changing the Definition of Good

The Purple Tattoo: Changing the Definition of Good: Well, I have completed chemo treatment #7.  5 more to go! I will be honest and say that it's getting harder and harder.  I'm getti...

Changing the Definition of Good

Well, I have completed chemo treatment #7.  5 more to go!

I will be honest and say that it's getting harder and harder.  I'm getting more tired every time.  I have now learned that I just need to give in and let my body rest, which isn't that easy!  Mark has been fabulous and while I know it must be frustrating for him to have to do so much more than usual  because I just CAN'T, he has done well.  He is spending a lot of time with Lucas and that means a lot to me.  I don't want Lucas to feel like he is missing out on things because I am sick.  Mark has had to take over a lot of housework as well as a lot of parenting.  I know this isn't easy on him.  He has to worry about Lucas and me and do extra fun being the caretaker.  I don't think we often give these people enough credit.

 I've had some additional side effects kick in, the most annoying one right now is chemo-induced menopause.  This means HOT FLASHES!  Oh. My. God.  These things are brutal.  The come every few hours 24 hours a day.  I haven't slept for more than two hours straight in about week.  It sucks!  I never believed how bad they could really be (lots of women have told me about them) until I experienced one.  It is like someone just lit a furnace in the core of my body and it goes right up out the top of my head.  It is heat like I have never experienced before.  It is being soaked with sweat in less than a minute.  I'm wondering now if I am going to have to do this again in another 5-10 years or so when the real thing sets in or if this will be IT...

I have been to see the pulmonologist about my lungs.  The coughing can be very debilitating.  It exhausts me as it sometimes goes on for an hour or so.  The doctor believes the coughing, etc. is from chemo-induced lung damage from the bleomycin.  They took me off the bleo after treatment 4 due to my pulmonary function tests.  I am now undergoing more tests.  Today I had more PFT's and in the next week I will have PET and CT scans.  This is good and REALLY scary all at the same time.  I am terrified that the PET scan will show that the cancer is not gone, but at the same time I am looking forward to it because the doctor believes it will show just the opposite!  Anyways, after the tests are all completed and I go back to the pulmonologist to see what we will do.  My options are :
1.  Do nothing  - give it some time, monitor it and see if it gets better
2.  Oral Steroids
3.  Bronchoscopy
It could get better, it could stay the same, it could continue to get worse.  Not exactly what I consider "good" news, but at least we are looking into it.  In the meantime they have given me an inhaler to use throughout the day. 

I am also going to go see a gastroenterologist.  I won't go into details here...there is such a thing as TMI.  We'll just say there is some "damage" here as well.  Just know it's another "NO FUN"! LOL

My friend, Kathy, whom I met at chemo is having her last treatment next Wednesday!  I am so happy for her!  I can't wait to see her ring that bell and walk out the door!  I wish her continued healing and good health!  I get teary-eyed just thinking about it...I can't wait until the day when we can celebrate being cancer-free together!

All in all I still think I am doing well.  I have had to change my definition of "good."  It isn't what it once was.  Good now means I'm tired but not EXHAUSTED.  I'm up and doing things, not stuck in bed.  In a few months it will change back to the old kind of "good," but for now it is what it is.  I've had a few meltdowns's tough mentally to admit that I have to slow down and that I can't continue to be "normal."  It sucks to admit that I finally feel llike I have cancer!

I have some exciting visitors coming over the next few weeks!  The first will be Mark's brother, Randy.  He will be coming for Mark's birthday.  They are going to drive Lucas over to Miami for his first REAl MLB game (not spring training).  Fortunately, his first MLB game will be to see the Cubs.  Not at Wrigley...but that day will come soon!

Thank you all for your continued support.  The FB posts, emails, cards, gifts all bring a smile to my face.  It is amazing the stories I have heard from friends about how their lives or friends and family have been affected by cancer.  The things you never know...  I am a lucky woman to have so many people thinking of and praying for me.  XOXO

Wednesday, March 27, 2013

The Purple Tattoo: Halfway There

The Purple Tattoo: Halfway There: Well, today was treatment number 6.  I am halfway done with chemotherapy! My fifth treatment was a long one.  It started out with news fro...

Halfway There

Well, today was treatment number 6.  I am halfway done with chemotherapy!

My fifth treatment was a long one.  It started out with news from the doctor that my latest pulmonary function tests show some damage.  Due to this he has taken me off one of my chemo drugs, bleomycin.  At this point he said the damage outweighs the benefit.  It does NOT change his prognosis for my being cancer free at the end of treatment.  They may add it back in at a later date.  I am glad he is precaucious, but I can't lie...taking the drug out scares me.  The cure is ABVD, not AVD! With this damage I have developed "chemo cough"  and can definitely feel the difference.  No more stairs for me, if I use them I cough for a good hour! Not fun!

After the news about my lungs I went to chemo.  For the third treatment in a row I had this strange sensation and started coughing.  The nurses feared that my port was leaking so we stopped using it and did the treatment through my arm.  I had to go have a dye study done on my port and luckily it proved to be working pefectly!  The cough is just my new thing, I guess.  Had the port been leaking that would have meant another surgery, so this was very good news.

The weekend after treatement #5 the Davidson's came to visit us.  Even in the aftermath of treament I enjoyed them being here, even if I could not fully partcipate!  It was good to have our families together!

The two weeks between 5 and 6 were rough.  I really only had 1 really good day.  That was really frustratin to me.  I have had to admit that I am not able to do everything I have been.  I have to slow down a little.  I have to stop just telling everyone I'm okay when I'm really not.  I have to stop pushing myself as hard.  I have to take some of the help that my wonderful friends and family are offering.  That's hard.  I'm a lot more fatigued than I have been with previous treatments and a still experiencing the bone pain.  I'm having some other issues which I will call "digestive issues' and will spare you the TMI version.  LOL

Vicki has been here the last week!  I am so glad to see her.  We are all.  Lucas is on spring break so she has been taking care of him while Mark and I work.  They have had a great time together.  She has also helped me a great deal just by fixing dinner and doing some stuff around the house.  It has given me a chance to relax a little.  We really haven't done anything super exciting...just hanging at home, but it has been a great visit!

Treatment #6 out of 12 was today...I am halfway done with chemo!
Today's treatment was much better.  To start off, I am back on Wednedays so I got to sit with my friend, Kathy.  This gives me some good company.  I also met a gentleman named Frank today, and had a good conversation with him about food and world travel.  My mom brought me sandwich from Jersey Mike's for lunch and hung out with us for a little while!  My port worked fine.  I was out of there by 2:30!  I came home and took a very long nap and then tonight we enjoyed a fire on the lanai, roasted marshmellows and made s'mores!  It was nice and chilly out and the fire felt good!

Now I'm awake...normal for a chemo night.  I think it is from steroids that are in my medcine.  So, I'm cactching up on TV and my blog.

I know this entry is about the bad stuff that I've experienced over the last two weeks,but it feels good to vent.  The point of this blog is to inform friends and family about how I am doing so I am being honest.  I had a few minutes of tear the last week or so just out frustration with my body, but that's okay.  Sometims you have got to just get it out...  I'm hoping this round will be easier than last, but I can handle it no matter what. I promise myself to ask for more help from this point on and rest a little more when I need it.

The chemo brain has gotten memory sucks.  I forget things mid sentence sometimes!  It is driving me crazy!!

Tomorrow I go for my Neulasta shot. This is the shot that helps me produce white blood cells...and causes the stupid bone pain.

Tomorrow would also be my dad's 70th birthday were he still here with us.  I can't even imagine.

'night all

Friday, March 8, 2013

The Purple Tattoo: 1/3 of the Way Through and Being Bald Isn't So Bad...

The Purple Tattoo: 1/3 of the Way Through and Being Bald Isn't So Bad...: Well, last week I had my fourth treatment.  I am oficially one third of the way done!  Hooray!  It's time again for pulmonary function t...

1/3 of the Way Through and Being Bald Isn't So Bad

Well, last week I had my fourth treatment.  I am oficially one third of the way done!  Hooray!  It's time again for pulmonary function tests to make sure the chemo is not affecting my lungs too much.

I am finally bald.  My hair started falling out after my second treatment.  Strand by strand, not too bad.  After my third treatment it started coming out in handfuls.  It was my food while I was eating, EVERYWHERE.  Sooooo... I decided to just go ahead and shave it off.  It's gone!

I have worn my wig to work...but really nowhere else.  It's not that comfy.  I've worn scarves and hats with my "hat hair" which is kind of like half a wig so you can wear hats comfortably.  But mostly, once I get home I am just bald.

Everyone is fine with it.  I had explained it to Lucas before it happened and he even went with me when I got my head shaved.  It was no big deal to him.  Mark is used to it...I think he even thinks it is weird to see me with my wig on because he is used to me not having hair!

Before it happened it was the worst thing I could imagine.  I cried all the way to my mom's house on the Sunday morning I was having it shaved.  I cried in the chair before Wade shaved it.  But once he started, it was OKAY...and by the time he was done I was fine.  It was much worse imagining it happening than the reality.  So, I'm bald.  So what.  It's not like it's a haircut that went's not like I shaved my head because I thought it would be cool and then ended up looking really bad as a bald chic.  I have cancer...chemo has made my hair fall out.  Oh well.  Not much I can do about it other than accept and go on with life.  I'm bald...I'm fine.  It's no big deal really.  Now, don't get me wrong.  I am not running all over town bare-headed.  I'm covering it up because I am more comfortable that way...but nonetheless, I am fine with it!  When you see pictures of cancer patients you think you could never survive...that losing your hair would be the end of you.  I PROMISE YOU IF IT EVER HAPPENS IT WILL NOT...YOU WILL BE FINE!

The first day in my wig Lucas and I went to McDonald's.  I kept looking around to see if people were staring at me or looking at me and then touching their hair.  They didn't.  I don't think people know it's a wig at all.  I've actually gotten compliments from people who don't know that I have cancer. 

I've been feeling okay.  My normal state is TIRED, that's how it's going to be.  The bone pain continues, but I'm better at managing the pain.  I'm working fairly normal hours and being productive.  Life continues to be good.  I have good days and bad days...I am exhausted by the end of every day and cannot wait to go to bed, but who isn't?  LOL  I try to stay positive and live my life as I normally would... just at a slower pace most of the time.

Lately A LOT, and I mean A LOT of people have been telling me that I look really good, that I am glowing.  I think this is because the medicine is working and a lot of the cancer is gone.  I imagine that my color probably wasn't good before and we didn't even realize it.  I had to have had cancer for quite some time based on the itching I had for two years prior to my diagnosis and due to the number of infected lymph nodes.

Other news...

It's baseball season here in SWFL.  Mark is coaching Lucas' team again, we are The Cubs!  We have a great group of kids and parents which makes it even more fun than usual!!

I bought a new car this week.  Nothing fancy.  Got a Kia Optima EX.  Love it! 

I am loving my new role at Gartner.  I work with a great group of people and enjoy going to work again!

We have company coming the 15th-18th! Can't wait to see the Davidson Family!! I have chemo this week so I hope I am feeling up to hanging with them...I'll do my best!  Going to be different than our normal spring visits with them...but still tons of fun! We might manage to squeeze a trip up to Orlando to see them again before they go back to IL.   Grandma with the White Dog is then coming the 21st.  She will get lots of good Grandma time in as she is going to babysit while Lucas is on spring break so we can go to work as normal!  They are both going to love having all those days together to have fun!!

I am still thankful for all the friends and family who have been sending well-wishes, cards, letters, little care packages.  You must all know that I realize how blessed I am to have you all in my life.  When this episode is said and done I will defintely spend the rest of my healthy life paying it all forward!

Friday, February 8, 2013

The New Normal

I've been a little out of touch lately.  I can say that this is the first week I really feel like I am sick, I feel like I imagined a person with cancer would feel.  This week I have moved into my "new normal" I think.  The land of sheer exhaustion, mouth pain, hot flashes, and hair loss.

I have had my second treatment.  I was actually supposed to have it on the 30th, but when I went in my white blood cell counts had dropped very low and they said it would be too dangerous to give me chemo.  That day I started receiving shots that would help my body start producing white blood cells.  They told me the shots may cause bone pain.  hahaha...the shots DEFINTELY cause bone pain which is unlike anything I have ever experienced.  To steal a description from someone else, imagine having your bones smashed with a sledgehammer.  Yep, that's pretty much it!  I went back in on Friday, the 1st and my counts were good so I was able to have my second chemo treatment.  It went well, much easier now that I have the port and we can use that instead of having to go through the veins in my right arm.  It was also decided that I would go in on Saturday for hydration (saline) and I would now start getting a shot of Neulasta after every chemo treatment.  This is a shot that helps your body make those white blood cells.  It also causes bone pain.  Bone pain sucks!

The first two days after chemo I felt pretty good.  I was scheduled to start a new role at Gartner on the first and of course I had to put off my first day until Monday.  Monday the side effects started to hit.  This time I have been extremely tired, no not even tired, fatigued and just plain exhausted!  My mouth started to hurt again just like last time.  It is the strangest kind of pain and I cannot explain it other to say that it feels like all the nerves in my mouth, tongue and neck have been turned up to super-sensitive.  Even water burns.  I have however, kept up working.  I've had to change my pace a little.  I go home at lunch and lie down for about 45 minutes.  I am able to leave a little early if needed and can go home and rest before dinner, bath time, bedtime, etc.  Still trying to do the same stuff, just at a different pace.

Also on Monday, my hair started to fall out.  It's just coming out in strands, not clumps.  But it is definitely thinning.  My wig is all trimmed up and ready to go.  I will have to make the decision very soon about when to just take the bull by the horns and shave my head.  This is the most disturbing part of cancer so far.  It is the only thing I have cried over...losing my hair.  It's going to be a very difficult day the first day I wear my wig to work...or just out in public. 

While this has been a difficult week for me there have also been some good moments.

I started my new job within Gartner which is a super-good thing!  I am happy to be working in a new business unit with old friends and a bunch of new friends as well.  Everyone up here on the third floor are very friendly and have made me feel part of the team already!  I am thankful for this new postion.  It gives me something new to focus on in an environment where I feel very comfortable and extremely supported!

I have also been very humbled by the kindness of others this week.  I am lucky to have such a great support group around me during this difficult time.  This includes friends from both near and far.  My Florida friends and neighbors have been amazing offering help of all sorts.  I am also floored by the kindness and generosity of my friends from back home.  You love and support means the world to me and on bad days it really does help get me through!  You have no idea how much just a little, "Hello, I was just thinking about you" can make a difference in my day!  XOXO

More good news, Mark is starting his new job on Monday.  That didn't take long! He will be working for Creative Door as a project manager.  He is excited about this new opportunity and I am happy for him!  He didn't get a very long break between jobs...nor did he get a very long honey-do list! LOL!!  He's been busy taking care of Lucas and I!  Lucas is bummed that his dad is going back to work...he likes being parent pick up after school.  Now he will have to go back to After Care! LOL!  The kid cracks me up!

Monday, January 28, 2013

The Purple Tattoo: Counting Backward

The Purple Tattoo: Counting Backward: After that doctor's appointment when he informed me of my staging I was given the choice to start treatment that day or to wait until I had ...

Counting Backward

After that doctor's appointment when he informed me of my staging I was given the choice to start treatment that day or to wait until I had a port installed.  I had decided already that I would start that day.  I had prepared myself for it and was looking forward to knocking it down from 12 treatments to only 11.  I told the doctor that if I start right now I get to start counting backwards and get one step closer to it all being over and done with.

I had to wait for a chair in the chemo room.  Mark was still with me.  I was a nervous to say the least.  Finally a chair opened up and they took me in.  Once I got settled we decided that Mark would go home until I was done.  He couldn't stay back there with me, plus he had to go pick up Lucas after school. (Oh, did I mention that Mark got laid off from his job of 9 years the day before I started my treatment?  When it rains it pours.  Don't worry though.  He has already got 2 offers so he didn't get very much time off!!  LOL)  I sat down and comfortable.  It's very quiet in there.  It's just a huge room with 20-30 recliners in it.  They sat me down in my recliner and my nurse started to very patiently go over everything with me.  I was nervous and she could tell.  She started asking me about my diagnosis and how I had discovered my lump, etc trying to putme at ease. 

The patient next to me suddenly chimed in to our conversation.  She has exactly the same kind of cancer as I do, was on treatment #5, had a lump in her armpit, etc.  I made a friend!!  I'll call her "K."  K was a blessing that day.  She helped me to relax and talked to me all day.  She really kept my mind off of the reality of what was going on and made it a much easier day for me to get through.  We talked about the side effects and what to expect in the upcoming days.  We discussed hair loss and how to cope with that.  I am SO GLAD I met her.  We exchanged numbers and have been texting this week.  We will both be back for chemo Wednesday and I am hoping we get to sit together again!  Having someone to talk to will certainly help the time pass a little more quickly.

My nurse brought over this big basket which had all of my stuff in it.  She handed me two Tylenol to take to prevent fever.  She went over a list of everything we would do.  She examined my arm and decided that we would use the veins in my hand for an IV.  The first medicine I was given was an anti-anxiety medicine.  (Thank God)  Then she gave me fluids, anti-nausea and then the ABVD which are the actual chemo drugs.  The chemo drugs are very toxic so I had to be monitored very closely.  One of them, they even gave me only a teeny tiny bit of and then made me sit for an hour before they would make sure I did not have a reaction.  While giving me one of the medicines, the red one, it started to burn really bad and my vein started to flare.  We had to stop and move my IV to my arm. 

Everyone is very nice and absolutely amazing.  One of the nurses is a woman just a little younger than me I'm guessing.  She is a 4 year survivor of breast cancer.  She had lots of advice to offer and was very comforting.  They are very busy...someone's IV is ALWAYS beeping and the place was PACKED.  (You must also remember that it is "SEASON" in SWFL.  This means there are extra people on the road and at the Cancer Center as well!)

After having been at FCS for 8 hours I was finally able to go home just a little after 5.  Mark and Lucas came to pick me up.  I was tired from stress, but I felt good.  I had been given a huge packet of information about what to expect in the upcoming days.  We went home, had dinner and carried out our day as we would any normal day!

It was a very stressful day.  Reality of what I have to face set in...11 more treatments...6 months...  It's going to be a long road but I am still convinced that by this time next year it will all be in my review mirror as just a part of history.

Thursday, January 24, 2013

The Purple Tattoo: Out of the Gates

The Purple Tattoo: Out of the Gates: The first thing I learned is that cancer takes up a lot of your time.  Since the diagnosis my calendar has been FULL!!  Once they tell you t...

Out of the Gates

The first thing I learned is that cancer takes up a lot of your time.  Since the diagnosis my calendar has been FULL!!  Once they tell you that you have cancer they move full speed ahead!

Mark went with me to my first appointment at Florida Cancer Specialists.  I walked in the place and immediately hated was full of old sick people and it smelled like sick people.  I was told I would feel this way by a friend who has won her battle against Hodgkin's, she nailed it on the head!!  I looked around the waiting room and wondered what I was doing here with these sick people.  I don't feel sick, I don't look sick...I'm young.  It was pretty upsetting.  Before you see a doctor you must speak to a "financial counselor" about your insurance and how you are going to pay for all your treatment.  They had my insurance wrong the first time I was there and they have yet to sort it out.  I go in every time prepared with how much of my deductible I have met to date, etc.  I learned quickly that you have to keep very close track.  If I didn't keep close track of my coverage, etc., they would be making me pay a lot more than I should be out of pocket.  I feel sorry for some of the elderly patients there who often seem confused by their's hard to sort it all out.

I met with my oncologist on Monday, January 7th for the first time.  He discussed my diagnosis, talked about chemo, answered our questions and set up a TON of tests and decided I would start chemotherapy the next week.  We knew I would need chemo regardless...the tests would just tell us how much.  Best case scenario was that I would have four treatments followed by radiation. 

That week I had a bone marrow biopsy, pulmonary function tests, a MUGA scan of my heart, PET scan and CT scans.  Everyday I had some kind of an appointment.  Everyday someone stuck me with a needle, gave me an IV or made me drink something yucky.

On Wednesday, January 16th I met with the doctor and we went over my results.  Bone marrow was negative for cancer, he said my heart pumps stronger than Lance Armstrong's, my lungs function above average, but there were multiple lymph nodes that lit up on the PET scan.  All of these nodes are above my diaphragm so this put me in Stage 2.  This means I will need 12 treatments - a full course of chemotherapy that will be done over the next 6 months.  The prognosis is the same...when I am done I will be cancer free.

On this same day I went ahead with my first treatment. 

Saturday, January 19, 2013

How I Found IT

One morning mid-December I went to shave my underarms and when I raised my arm I noticed I had a huge lump in the middle of my left armpit.  I freaked out, ran to the livingroom, showed Mark and immediately called the doctor.  I called the surgeon who had done a biopsy of the breast on the same side in April of 2012.  They made me an appointment...which got all messed-up...which led me to see my gynecologist who said she thought it was just a lymph node and that I was probably coming down with something.  Both Mark and Lucas had been sick so this made sense.  She told me to keep the appointment with the surgeon the following week.

The surgeon acted very different with this visit than he had with the breast stuff earlier in the year.  He wanted me to have imaging done the next off I went for a mammo and ultrasound the next morning.  Had those tests done and they took me in to see the radiologist who was a very cold person who sits in a dark room surrounded by computer screens.  He just sat there and said, "there are two solid masses in the axillary areas.  You could have leukemia, lymphoma or some kind of breast cancer."  I left the building in tears.  I called Mark and told him I couldn't go home and face Lucas right away so I went to my mom's for a little TLC.  A biobsy was scheduled for December 27.

On December 28 the surgeon called me and informed me that the preliminary tests showed some kind of malignant lymphoma, but we would not know details until the following week.  On January 4, 2013 I went in to have the stitches removed from the biopsy and get my results.  Dr. Lewis confirmed that it was indeed Hodgkin's Lymphoma and referred me to see Dr. Dunbar, an oncologist.  We scheduled an appointment for January 7.

Mark and I left that appointment in shock even though we already knew I had cancer.  Hearing it confirmed in person was different than hearing it over the phone as "preliminary results."  It was a long weekend knowing that on Monday I had to see an oncologist, but it still all felt like it was happening to someone else.  It hadn't really sunk in yet.

**An interesting note**  I had been experience crazy, non-stop itching for almost two years.  I had repeatedly scratched myself until I bruised.  I had been to see four different doctors.  I had been told it was anxiety, nerves, scabies and written prescriptions as far back as June, 2011.  Turns out the crazy itching is a symptom of Hodgkin's.

Thursday, January 17, 2013

Why The Purple Tattoo?

Welcome.  Many of you are probably asking, "why The Purple Tattoo"?  Well, purple is the ribbon color for Hodgkin's Lymphoma.  I have just been diagnosed with Stage II Hodgkins.  The tattoo part comes from my dear friend Jamie.  She has suggested that when I have this thing beat and am cancer free that we get matching purple ribbon tattoos.  So,The Purple Tattoo represents a battle won!

There are so many people who have reached out to me to ask how I am and what is going on there is just not enough time to inform everyone individually.  This will be the place I post all that information.  Please continue to check in with me, call, text, all helps!  It feels good to be connected to so many caring people.  I need and appreciate all your love and support throughout this challenge!

I will write another entry tomorrow to explain this from the beginning when I found the lump under my arm in mid December through first of 12 chemo treatments.