Thursday, January 28, 2010

Quick Update

Hello peeps!!! Sorry for the lack of posts, I promise I will try to get better at this updating thing. The funny thing is, it feels kind of weird to update people or talk about me, all I have ever thought is “like people really care”. But I know that people really DO care – just weird to write about myself you know.
All and all I can’t really complain. Each day is different. There are days where I am very nauseous and days where I feel pretty good. Eating has been a challenge. I feel like every day is an experiment. There are some days where all I can eat are bagels and then other days I seem to do ok with more normal foods. I don’t really like going out to eat anymore though – I just feel like it is a waste of money.

Last Thursday, the 21st was the worst day I have had. I woke up nauseous, dizzy, and felt like a Mac Truck had ran me down. I tried to suck it up and drove into work. But by the time I got to my office I felt worse. I called my chemo nurse and explained everything. She said she wanted me to be seen. Because I was getting hot and then cold, she said that my white blood cell count could be low. Sure enough – it was quite low. So I earned myself four hours at the clinic getting IV meds. Fortunately this Monday, the 25th, when I went in for lab work, my counts were coming back up nicely. I was very happy with that; other wise I would have ended up in the hospital. No thank you!!!

Fatigue is something that I was not expecting. I had plans to carry on life as normal on days when I didn’t have chemo. My body has said other wise. As silly as it sounds, I would much rather deal with the nausea than to feel so tired. I talked to my cousin, Kim, who is a breast cancer survivor to see how she dealt with it. She told me that the fatigue is normal and it will play a big factor in my life for a while. What a hard pill to swallow. Before all of this I was the person who went to the gym at least 5 days a week. Now – I am having trouble even making it there. I went on Tuesday. I made it a mere 18 minutes on the elliptical before I found myself puking my guts out in the bathroom. I will keep on attempting this until I can do it!!!

I have also talked to my boss about having a modified work schedule. I have proposed working 8-3 everyday with a half hour lunch. He said he is willing to let me have a modified schedule but he needed to think about what it would be. I have not heard anything back yet. It was very hard for me to ask for that. I have not had the best luck with my health in my life. And although my work gets done, my time at work has suffered…and now here I am saying “well, something else is now wrong with me…” I hate to show that weakness!!!

Today is a sad day for me. I woke up this morning to find that my hair is starting to fall out. Now, I knew it was coming and I thought I prepared myself for it; but I don’t think anything prepares you for holding handfuls of your hair in your hands. I suspect that over the next few days it will get very thin and I will make that call to my hair stylist to have my head shaved. I keep on joking that it is a good thing I look cute in hats!

Thanks to my awesome friend, Jess, I will be heading to Reading on Saturday to look at getting a wig. I still am not sure if I want a wig, but it doesn’t hurt to meet with someone and look.

So that is what is up. I am still here and I am still fighting!!!! I may have off days – but this fucking cancer will not win!!!!!

Wednesday, January 20, 2010

Chemo 5 Days out...

So today it has been 5 days since I received my first R-CHOP chemo treatment.  I feel pretty good.  The weekend was a little shaky.  Saturday I felt pretty good up until the evening.  By the evening it felt like I was "getting something"...you know how you feel before a cold sets in.  I really didn't eat all weekend.  I found pieces of bagels seemed to be ok.  My appetite is coming back slowly, but I still can only eat small amounts. 

My biggest "complaint" is the tiredness.  I don't know how to explain it, other than I just feel drained.  I went to the doctor on Monday, because my mouth was so sore.  Turns out it is a side effect from the chemo.  Good Lord, this chemo crap has a lot of side effects!!!  Anyway...when I was at the doctor's I expressed just how tired I was feeling.  I wasn't expecting it to hit me so fast, but she assured me that this is all very normal.  I wish I was able to take naps mid way through my work day...I feel like that would really help, but alas...

Yesterday I had a small breakdown.  I really wanted to go to the gym, but was so tired I fell asleep before I could get my gym clothes on.  Work was pretty bad.  My job can sometimes be pretty stressful, especially with year end / year begin.  Take that normal stress and add my new life stress and it just compounded.  I am so lucky to have Douglas...I came home, I vented, I cried and was my rock!  He is so wonderful that it makes me sad sometimes to think that he got the fuzzy end of the stick in the whole "in sickness and in health" thing. 

Today was a much better day - I really worked hard to remain focused at work and got a lot accomplished.  And I was able to go to the gym this evening.  I only did a half hour on the elliptical and some abs...but it was something, and that is all I really wanted.  I started to get nauseous while I was doing my ab workout and I...are you ready for this, you're not going to believe it...I STOPPED!!!  I know, I know, try and contain yourselves!!  Now you all know that I am the person who fights through pretty much anything, but this time it's different.  This time it's my life I don't want to jeopardize anything in the fight to get it back to where it was.  It's a whole new leaf for me...I will listen to my body!!!

A friend asked me today how I was doing "it"...how I was keeping it all together.  I told her that I have my moments of weakness and that my outlook on life has changed....I take things one day at a time!!!

Friday, January 15, 2010

First R-CHOP treatment done!!!

Today I had the second half of my first chemo treatment.  This was the Rituxan (the R part of R-CHOP).  This is the medication that has a lot of precautionary measures taken before it is administered.  I arrived at the clinic at 7:40 this morning.  My chemo nurse, Renee (I know, what are the odds) gave me Tylenol & Benadryl first thing.  These two medicines are to help with any possible side effects such as fever and/or itching and rash.  After twenty minutes she started the Rituxan.  This medicine is given very slowly for the first time; one drip every five seconds, then two drips every fives seconds, continuing until it reaches eight drips every five seconds.  I did well up until the three drips per five seconds.  I had fallen asleep and when I woke up my ears were itching inside and out and my neck was closing up.  My nurse just happened to be coming back to up the dose when I discovered all of this.  Before I could get out that my throat was closing, she raised her voice and said "oh my, you're having a reaction" and pulled the connection, rushed out of the room and grabbed a bag of steroids and a syringe of Benadryl.  I could hear her yelling for someone to get a doctor.  Can you say scary!!!!  She ran the medications through and we started the Rituxan over again, from the beginning.  When it got back up to three drops per five seconds, my throat started to get a little scratchy again and the redness on my neck was back.  But I asked that we just forge through and monitor everything.  As it was, the symptoms went away eventually.  And I finished my chemo at 3pm!!!!  What a long day!!!

I had a private room today.  It had two Lazy Boys and a television.  It was very sunny & bright, which was so nice.  Doug started out the day with me.  When I had the reaction we knew I wouldn't be getting out of there anytime soon and Doug needed to get to work (he just started his new job on Monday).  So mom came in to be with me around 11:30.  I took some pictures of her today, but I am pretty sure she would beat me if I put them up.


Doug made the most of his time there and worked on a website



With all of the Benadryl today - I was pretty sleepy and slept through most of the treatment.


So that's done - the first treatment is out of the way.  Now I wait for the hair to start falling out...but bald is beautiful right???

Now I am sitting and resting.  I ache all over and am very cold.  The taste of food has already started to change...gotta love the chemo diet.  Hopefully I will wake up and feel pretty good.  I really would like to go to the gym this weekend!!!!

Thursday, January 14, 2010

1st day done...

Today was my first day of chemo.  As I stated before my first round of chemo is being divided between two days as it takes so long for the first time.  Today I received the CHOP part of the R-CHOP.  It went well.  In fact it didn't seem like I was getting chemo...Doug & I laughed and joked around.  I read, did some word puzzles, and joked around some more.  When it was done we went to get Doug's hair cut.  All I kept thinking was 'wow, chemo gets a bad rap - I feel fine'.  HA!!!  About 5:30 I started feeling a little queasy and got really tired.  I tried to lie down, but couldn't sleep, and I hate lying idle if I can't sleep, so I got back up.

Thursday night are my friend and my night to have dinner, hang out, and catch up for the week.  I didn't want to miss that.  I knew he would come over to the house and hang if I really didn't want to go anywhere.  But the truth is, I need to still live, and I wanted to go out to dinner.  The queasiness was still minimal at this point.  And I really enjoyed the dinner and conversation, not only because we always do it but also it was just nice to not think too much about everything. 

Tonight around 9:30 the queasiness became a little less minimal and a little more annoying.  I feel pretty sick to my stomach right now.  I can not even imagine what I would feel like if they had not given me three different anti-nausea medicines!

I'm calling it a night...second half of chemo starts tomorrow morning at 7:40am!!


First day of chemo.  And my new "chemo ready hair-do".

Wednesday, January 13, 2010

Amazed & blessed...

Tonight feels like the calm before the storm.  I had my medi-port placed on Monday and I start chemo tomorrow.  I feel very anxious...I am ready to start whatever it takes to get better!!!  For the last 29 days I have been counting down for this day.  You can only talk about cancer and the plan of attack for so long and I am just ready to get on with it.

It's funny thing, cancer...it changes you.  As I said I am only 29 days diagnosed and I already can tell changes in myself.  I am normally a pretty high strung person (ask anyone) and I tend to worry about everything and everyone.  Now I seem more laid back (at least I think)...things that bothered me before December 15th really haven't bothered me much.  In the grand scheme of things some things just aren't important.  I even feel stronger mentally.  Before when I would get Bronchitis or a Sinus Infection I would let it make me sedentary, now I think a cough or a runny nose are the least of my worries. :-)  I don't how to explain it - but I feel different.

I am so blessed!!!  I have so many people who are praying and thinking of me.  It's funny I have always thought that I wasn't in enough dire need to be on a prayer list and even with cancer I still kind of feel that way.  I always look at it this way, 'no matter what is dealt to me...there is always someone else who is dealing with more'.  Anyway - I feel so blessed that people think so highly of me to reach out to me and/or pray for me.  It all seems different...I usually care for people and now the roles are reversed.  Knowing I have the support of so many, makes me feel so calm and at ease when dealing with everything. 

T-minus 14 1/2 hours until the first half of my first chemo!!!  Let's kick cancer's ass!!!!

Thursday, January 7, 2010

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!!!!

Tuesday, January 5, 2010

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.

Monday, January 4, 2010

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!!!!!!