So it's all real...

"So it's all real, isn't it?"  That is just how I feel today.  Today I met with the Hem-Onc to set up my chemo schedule.  Can you say information overload???  As of now the plan is to have 3 rounds of chemo and then radiation.  I will be meeting a radiation doctor to make sure I can do the radiation.  The type of chemo I will be going through is R-CHOP.  Which stands for (R) Rituxan - (C) Cytoxan (H) Adriamycin (O) Vincristine (P) Prednisone.  When I heard the "P" I almost called the whole thing off...LOL!!!  I hate prednisone more than any other medicine.  I have been on it so many times for my asthma.  It is a nasty drug!!!  Very helpful, but so full of side effects.  Unofortunately, my worst side effect is weight gain.  I know this seems vain , but I gained a lot of weight from this drug over the years and finally, finally have taken most of it off.  But as with losing me hair...if it has to be done to save my life, well then, so be it.

We sat with my chemo nurse for 45 minutes going over what to expect.  It is crazy, the amount of information there is!!!  I will be having a port placed on Monday so the chemo drugs can be administered.  The doctor, nurse and I decided the port would be the best solution because my veins are crap.  When I had my hip surgery I blew through three IV's in one day!!  And I have had more IV's infiltrate than I can count.  When I told the doctor about this she said that I most definitely getting a port.  If a chemo IV would infiltrate it would burn and scar my skin because of how powerful the medications are.  So Monday at 8:45 I go into the hospital as an outpatient to have the port inserted on my right side near the clavicle.

My chemo nurse gave me a folder with all of the information about my treatment in it.  I swear the thing weighs like 10 lbs!!!  Ok, ok, I am probably exaggerating here, but seriously - it's thick!!!  The list of meds I will be on is crazy. 

I start chemo on January 14th at 1:20pm.  This will be the first half of the chemo (the CHOP part).  Then on Friday, January 15th I will go back in at 7:40am to get the Rituxan.  The Rituxan is the one that has all of the crazy side affects and can have reactions with the body when given for the first time.  This will be a very slow drip - and they will monitor me very closely to see how my body reacts.

Next week will be a very hectic week!!!  And I will be happy when it is over.  I go this weekend to get my hair cut.  I am getting it shorter than what it is now, but I am not getting cut short.  I know this sounds stupid, but I have never had a really high self esteem, but the one thing I have always liked is my hair...so it is hard to know it will be gone by February.  Again...if that is what it takes to save my life...well then, so be it!

Today as I write this I feel overwhelmed, tired and sad.  I am still strong, but even the strongest people have weak days, right???  I am off to bed and hope tomorrow is a good mood day, because I can't stand to be sad!!!!

A quick update...

I heard from the doctor’s last night around 5:15pm regarding the results of my PET scan…


My NHL is Stage 1E or Stage II. I will try to explain the best I can. The NHL has not spread throughout by body (which is awesome); however, it has spread in my neck area. They found active cancer cells in the back of my throat area and tongue. Technically, on paper, I have Stage II NHL. But the true definition of Stage II is that the cancer is in two or more lymph nodes. The Stage 1E comes into play because the cancer is in two or more locations, but those locations are known as Extra-nodes (think external nodes).

As far as the treatment plan…we are going to discuss all of that in detail on Thursday. Because of the location of the additional cancer cells, they are not sure if I will be able to get radiation. Reason one is the area may be too big and reason two being the location and possible long term health effects such as dry mouth (there were a couple others, but I forget – a lot of info to take in). No radiation would just mean a longer chemo therapy. This question of whether or not to do the radiation will not affect the start of chemo, as radiation comes after the chemo is done. So I may start chemo on Friday, and if not Friday, I will definitely start next week.

Thursday will prove to be a day filled with information overload.  I am glad I will have Doug there as a second set of ears!!!  The woman I spoke to last night said that she was surprised that I said about starting chemo on Friday, she thought I would like more time to process everything.  Truthfully, I don't know how much more I can talk about and process this - I just want to get started!!!  I am a doer not a talker!!! 

Btw...I want to thank my Aunt & Uncle for one of the most awesome Christmas gifts.  I received a pretty, wrapped package that said To: Renee From: Your Gaurdian Angels.  And inside was an awesome "Live Strong" t-shirt and a "Live Strong" fleece jacket!!  It meant so much to me!!!  I cried tears of joy, as those words mean so much to me and the people it came from mean so much!!!!  I will wear them with pride...and maybe shine my bald head up on those days...LOL!!!!

*On a side note...thank you all so very much for all of the nice comments you have been leaving.  Please know that I am not ignoring you.  I just haven't figured out how to respond to the comments yet from Blogger.

Update from Deccember 24th doctor appointment...

So I realized that in order to keep everyone in the loop and use this blog for what I intend it for...I need to actually write the updates!!! Sorry about that!!

On December 24th I met with my Hem-Onc doctor. I feel pretty comfortable with Dr Gareis as my doctor...I have read that first and foremost you need to feel comfortable with the doctor who is going to be helping to save your life!! And the group she is with, Andrews & Patel, is one of the largest group of cancer doctor's in this area.

My appointment was an hour and a half, and full of information. Non-Hodgkin’s Lymphoma is broken down into 3 sub categories...

Low Grade - non-curable* and chronic

Intermediate Grade - curable*, aggressive (but not as aggressive as High Grade)

High Grade - curable*, very, very aggressive, and a higher mortality rate

*The definition of curable here is that it can go into remission for a short period of time or indefinitely.


I have Intermediate Grade NHL. I am not sure what stage I'm in just yet. In fact as I write this I am waiting for the call from the doctor. I had my PET scan on December 31st. I couldn't wait any longer (I really just want to know), and called the doctors office to see if they received the results. They have, and they are giving Dr. Gareis a message to please call me. Ugh - the waiting...

As for treatment - this is what I know right now...


If the NHL is contained in my neck area (thyroid) - treatment will be R-CHOP which stands for Radiation, Chemo, and Pill. I would have at least 3 chemo treatments, followed by radiation treatments, and will be on medication.

If the NHL has spread to other parts of my body, I will not go through radiation (as that is a targeted type of treatment). And I will have at least 6 chemo treatments.

In both cases, chemo will be every three weeks.

Prior to this appointment I joked about how I would be bald and that bald is beautiful. But it wasn't until I heard the doctor say it that it hit me. I asked her if this was the type of chemo I would lose my hair from - she said yes - and I couldn't help it, I cried, hard!!! Oh well - it's just hair, and I have to lose my hair to save my life, well that is what has to be done. She told me that after chemo hair tends to come back in with big curls and lighter than the original color and that I would probably have a shade of blonde. Doug said it will be like having a whole new wife!! This weekend I went to Yarn Garden and purchased some really soft yarn to make some newsboy hats. Hey - if I am going to be bald, by damned I will be stylish!!!! I have a previously scheduled hair appointment on Saturday, January 9th. I am going to have Ali cut my hair to right above my shoulders. I don't want to cut it short, but I also don't want to have it as long as it is and lose it. I am hoping that having it a little shorter will help to make it less traumatic to deal with.


So anyway...that is what I know for right now. Here is a list of upcoming tests and appointments...


Tuesday, January 5th - MUGA testing (this will test my heart to make sure it is strong enough to endure the chemo)

Thursday, January 7th - Appointment with Hem-Onc (we will discuss chemo in more detail and get the schedule set up)


Till then - LIVE STRONG!!!!!!

That six letter word...

On December 15th at 3pm I received a call from my surgeon who performed my right thyroid-ectomy on December 10th.  This call changed my life forever.  He told me that while the nodule was ok, the right thyroid showed differently.  Then he mentioned that dirty six letter word that no one ever wants to hear...CANCER!!!!!! 

I have Non-Hodgkin's B-Cell Lymphoma, Large Cell type.  What the hell does that mean, you ask!!!  Well, I'm not quite sure.  I meet with the hematologist/oncologist tomorrow (12/24).  I have a lot of questions and hope to get a lot of answers.  I will learn my plan of attack.  On 12/31/09 I go for my PET scan.  This (from what I understand) will help determine what stage of cancer I have.

I have decided to use my blog to help my friends & family stay informed with my journey through all of this.  Sorry "hipsters", I don't think I will be having my left PAO for quite some time...much bigger fish to fry now.  Some of my friends had mentioned carepages.com and caringbridge.org.  I looked into them, but figured that since I have a blog already set up, I would use it.  And people can "subscribe" to this blog so that they can get a notification when I post something. 

I want to thank everyone that has been so supportive already.  I am so blessed to have the people in my life that I do!!!  I am strong and have fought through so much crap in my 28 years that cancer does not have a chance with me!!!  I will beat this...failure is not an option!!!! 

So if you would like to follow this journey...thank you!!  And in the words of Lance Armstrong "LIVE STRONG"!!!!!!!!!!!!!!!!!!!!!

Quiet...but for good reasons!!

So I have been pretty quiet from my blog...but I have a great reason...I trained and ran a 5k!!!! I know - I can hardly believe it myself. I started training about 9 weeks ago and ran my first ever 5k on Thanksgiving!!! I finished in 37 minutes and to be honest, I think that is pretty darn good considering everything I have been through.

Before the race - I apparently am not awake yet...

I had a great support team. My friends Fred and Alicia ran the race with me and my husband and parents came to cheer for me. Fred and Alicia are both pretty tall and have not had hip surgery, so at the beginning of the race I told each of them that if my pace was too slow that I would be completely ok with them running ahead. Alicia ran ahead and finished her first 5k in 33 minutes - I am so proud of her!! But as much as I pleaded with him to run ahead, Fred stayed right beside me and near the end coached me to the finish line.

I am not going to lie...it wasn't the prettiest race. At 2.5 miles legs and hips were screaming! My left hip (non-operated) was the worst. My friend who ran with me said he could hear me "clicking" and saw the pain on my face. That is when he started talking to me - telling me that we were going to finish the race and that there was only a short distance to go. He really helped push me along. Because I am sure as many of you know the pain can be debilitating and once you reach a certain level of pain - your body wants to shut done. But I did it - I crossed that finish line!! When I crossed Alicia was there waiting and jumped on me exclaiming "You did it - I am so proud of you!!". I hugged her and I hugged Fred for helping me achieve something I wanted to badly to accomplish.

After the race - see I'm still smiling!!!

After I could breath again, my emotions got the best of me and I cried. Last year at this time I was still on crutches and wasn't even on 50% weight bearing and this year I ran a 5k!! I feel so blessed!!!

Now...about that left hip of mine...yeah it is definitely letting me know that it is there. I have been in quite a bit of pain lately, and I am not happy. This is the same kind of pain the right hip had before surgery. I am scheduled to go in for an injection in two weeks and I hope it helps. Although - I am hoping for it to be some miracle shot - but really all it is doing is prolonging life before surgery. Right now I am seriously considering calling my surgeon and setting up the date to have the left PAO done. I am just not sure...on one hand I say yes - let's get this done and over with so I can move on with my life, but on the other hand I say no - because I am not sure I am mentally prepared to do it again. I have a very tough decision to make right now. All I know for sure is that I want to keep running - I love it!!!

All I can do is fight!!!!

It is hard to believe that at this time last year I was sitting in the hospital waiting for my surgeon to open my right hip back up and remove an infection. The weird thing is, my left arm is very itchy today in the spot where the first picc line was, and the scar is even raised...too weird!!

My right hip has been feeling pretty good. And I have been really testing it out lately. I have always wanted to run but either my asthma or my hips have kept me from it. As with most everything I do, I am giving this my all. I am planning on running in a Turkey Trot this year and started training. I am telling you...I really feel like my body hates me. I have been trying to go to the gym every day except Sundays. I was doing well until last week when, boom, respiratory infection!! This is the second one in a months time!! Last night was my first night back in a week. I made it through my run despite coughing and pain from the left hip. Then I met with my trainer, who kicked my butt. Today I was only feeling a little tired until now. I was sitting at my desk and started to get short of breath...back to the nebulizer treatments I go...

As I mentioned...the left hip (non-operated side) is starting to show it's bad side. And quite honestly I am surprised it took this long for the pain to get more frequent. For the last couple weeks I have been dealing with pain in the left hip during any activity. Last night was the worst I have had. I was running on the treadmill and I felt a familiar pain. I had this pain once before in my right hip...this is the pain that was the beginning of the end of pre-op life. This is the pain that started the series of injections that slowly started to lose their effectiveness. And now, here I am with this pain in the left hip!! I know I need to call and schedule the injection...I just am so not ready to be there again!! Not to mention I have another surgery of a different kind in my very near future...

Within the next month or so I will be having thyroid surgery. Right before my 3rd right hip surgery, I had an appointment with my family doctor. While talking I mentioned that I had stopped taking my Synthroid (my medicine for my hypo-thyroid). He looked at me with the "What??? Why would you do that??" look. I told him that I didn't feel any different whether I was on or off the medicine. This prompted him to feel my thyroid. The look that came over his face was not one I was expecting. His eyes got very big and he immediately ordered tests. While I was recovery from the 3rd right hip surgery I went through a series of tests. The tests revealed that I have a quite large nodule on my thyroid. I had a needle biopsy and met with an endocrinologist. We talked about various options regarding this nodule. My concern...the "c" word...cancer!! There is a chance that due to the size of the nodule the needle biopsy was not able to get samples from all of the nodule and that there could be cancer. I have decided that I really don't want to take that chance and I am having it removed. They will be removing half of my thyroid and the nodule. While I am still under in surgery, they will examine the nodule for cancer. If there is any cancer, they will remove my entire thyroid and I will be treated for cancer. I can not tell you how scared I am of this!!! I am praying very hard and trying to think only happy thoughts.

I am a fighter!!! I always have been and I always will be!!! But sometimes, I feel like my brain and my body don't see eye to eye.

Anyway, to some it up

• The right hip feels pretty good
• The left hip is ready to start receiving injections (even though I am not)
• The respiratory system is junk and I wish I could get a new one
• The thyroid and it's nodule friend must come out...I will not let cancer in!!!

1 YEAR POST-OP!!!!

WOW - what a difference a year makes!! I am officially one year out from my original PAO surgery. This past year has been full of hope, excitement, sadness, setbacks, and happiness all rolled into one. There were times where I lost all hope of ever being the same person I was before hip dysplasia - but then the good days started to out weigh the bad. I can with out a doubt say that I am a stronger person now, physically and mentally, then I have ever been before! I had a post in the works about how mentally taxing this surgery is, but that is for another day. Today I celebrate that I have made it through the year!!

Let's take a look at then and now...

Then: Pre-op I could not walk or do any activity without falling down
Now: I am increasing my activity level and time every day, still a little pain (but I have had more surgeries then most), but overall feeling pretty good.

Then: Post-op, I could not move my leg at all. And I remember thinking 'Will I ever walk again?' As it was not very convincing to be able to see your leg, so you know it's there, but not be able to feel or move it.
Now: The doctor can not believe how flexible I am. It's a little weird to have him and his residents move my leg and hip around and say things like "Wow!! That is impressive!" I still have an area on my upper front and outer thigh that is still diminished for sensation. But, as far as I'm concerned, that is a small price to pay for where I am now.

Then: I sat in my "sitting room" that my loving husband set up for me. I would work from home, knit, read, and watch tv, and then get so bored!! All I wanted to do was be able to be part of the world again. I felt so left out as my husband and friend left for State College on the weekends to work security at the PSU games.
Now: I never stop running!!! I am either at work, the gym, tennis courts, or a bike trail!!!! I love every minute of it, but there is a little part of me that would love to sit - but I will save that for the Left PAO. I am now heading up to State College with the guys to go to the games or just tailgate.

I'm not 100% done recovering yet, but my latest surgery was in June. It was not as major as the original, but it set me back a little. Reflecting on the last year I feel so blessed to be where I am!! I see the light at the end of this tunnel and that makes me very happy.

I had my 10 week post-op appointment for the surgery in June on August 10th. Dr. Goodspeed was so ecstatic with my progress. He told me that after everything that I have been through with this surgery, the pain that I have endured, and my high tolerance for the pain, I will breeze through childbirth. I asked for that in writing :-). When we were finished with the appointment he said that since I was doing so well, we would consider the appointment my 1 year post-op as well. I don't have to go back unless I need to. He asked me to call or email him periodically to let him know how I am doing. That is the least I can do for the person who changed my life!!

YAY for 1 year!!!!