My truth about Chemo (so far)...

First off, I have to apologize.  I certainly didn't intend for this blog to be a downer.  However, when you're writing about cancer, surgery, chemo and all that goes with it, I guess that is somewhat inevitable.  I just want to say to all of you, that I won't be offended if you don't read my posts...or if you wait to read them until you are ready.  I'm not writing this blog for an audience...my main purpose is to look back on this journey from a better place and see how far I've come.  To see what I've overcome.  I want to see how I leaned on the support of family and friends, on God, and how I did not go this battle alone.  Additionally, so many of you are so sweet to ask me or my family how I'm doing, and I thought that sharing these journals may help to give you some real insight into what's going on with me.  And I want to tell you all this:  Even though chemo is rough, and going through all of this is the hardest thing I have EVER had to do, I am doing well.  Even when I don't think I'm doing well, I am doing well.  Despite it all, my body is more healthy than it is sick, and I will do my part to make it as healthy as it can be.  Yes I will have ups and downs and good days and bad days, but I am alive.  I have my children, my husband, my pets, my family, my friends, people I didn't even know were my friends all around me and I am well.  Over the next few months I may feel sick, I may not want to get up in the morning, but I will not give in to that.  My doctors and other survivors have told me that the best thing I can do is to remain active, and that is what I am doing and what I will continue to do...I will go for walks and take in the beautiful world that God has created, remembering to appreciate the country I live in, the city I live in, and the beautiful home I am blessed to live in.  Though it is easy to allow "cancer" to consume my thoughts, I don't want it to.  I want to stay in the land of the healthy, the normal, the everyday.  Though my posts may be largely about my cancer battle, it is not who I am.  I am still just Lindsay, and when all of this is behind me, I will still be Lindsay...except, maybe a little stronger, with a few more battle scars.

OK...enough of that.  I am happy to report that we now have cable and Internet in our home.  I have been relishing all of my terrible reality TV shows that I know rot my mind but give me so much guilty pleasure.  To be honest, having a cleansing from cable and the Internet was actually a really good thing...I've found that I don't even want to watch TV as much as I did before...but every now and then a good BRAVO show doesn't hurt.

Back to the yucky stuff.  Today is day 11 post-chemo, and I have to say that each day since my treatment has brought something new.  The days immediately following chemo were good, really.  As the doctors and nurses said, the steroids help you to feel well.  Susan, the nurse practitioner at Dr. Banerjee's said, "You'll really understand why all of those professional athletes take steroids...they make you feel great!"  That's kind of true...in the first few days after chemo, I felt fine--just maybe a little weird.  A breast cancer survivor I've been in contact with described it as the BUZZ...you kind of feel like you're buzzing.  Not like buzzing after a few cocktails, but like your body is literally buzzing -- you're wired.  You want to keep moving, do something, be productive.  This all worked to my advantage given the fact that we are still unpacking and settling into our new house.  I was quite productive in the first few days after treatment.   

On day 2 however, a few changes started taking place.  I still felt well overall, but my mouth was sore...my gums ached.  Brushing my teeth in the morning I spit out pink foam...my gums were bleeding.  Called Susan and she told me that this is totally normal.  She recommended that I rinse my mouth with warm water with baking soda and salt after every meal.  So, I've been doing that.  Day before yesterday, however, a mouth sore sprung up on my tongue...yuck.  Today there is a small cluster of them around the big one.  Susan called in a prescription for some lidocaine gel to numb the pain, but nothing will really help it to go away except for getting the chemo drugs out of my system.  Totally gross, but evidently, totally normal. 

Day 2 is also the day that the headache began.  It feels like a tension headache, right in my temples.  It goes up and down in severity, but since day 2 it hasn't gone away.  The headache is exacerbated by the fact that sometimes my scalp burns.  Evidently, this sensation is a precursor to losing my hair.  All of the hair follicles are dying and it hurts.  Other ladies have told me that it physically hurts when your hair falls out...another lovely fun fact.  

One of the main surprises has been nausea.  I really haven't had any (knock on wood).  Granted, they gave me a large dose of long-lasting anti-nausea medication in my IV when I was getting treatment, so apparently, that has done it's job.  I think there were a couple times on day 3 and 4 that I felt a small wave of nausea.  Just for a second, and I immediately took the Reglan that I was prescribed.  That was the end of that...nothing has come back. 

Let's see, what else...oh, my skin.  I know all of our hands are really dry right now because of the change in the air and the seasons, but my hands are SO DRY.  I put lotion on 10 times a day and it just absorbs immediately...my knuckles are red and cracked and I've developed a little bit of a bumpy rash on my hands...just from the dryness.  My hands are a mess. I'm looking forward to getting a manicure before my next treatment, when my blood count and immune system have recovered.   

That's the other thing, my immune system.  On Friday I had my 1-week recheck with Dr. Banerjee.  This time I got to bypass the chemo lounge and go straight into an exam room.  Dr. Banerjee's nurse, Ninette, took some blood for a CBC (complete blood count).  She only had to stick me once!  She said that 10 years of experience as a combat nurse helped her to make sure she only has to stick once.  Where was she last Friday?  They do the CBC to look at my red blood cells and white blood cells and make sure they are not too low.  It is normal for them to be low, because the chemo is killing them along with the cancer cells.  

So, after Ninette took blood, I got to talk with Dr. Banerjee himself.  He wanted to hear everything...all of my symptoms and side effects and I told him all of them.  When I told him about my headaches, he explained that the anti-nausea medication I received in my IV has headaches as a possible side effect.  He explained that some people who are prone to headaches (which I am), do experience headaches, but it's a balancing act because the drug is very effective at curtailing nausea (which it clearly has been for me).  He told me that he would adjust my "cocktail" for next time and find the perfect balance for me so that I don't have to endure this headache every time, and to still make sure that I "WILL NOT THROW UP."  He did a physical exam and seemed pleased with everything...

"Let's just wait on those blood test results and I'll come back to discuss them."  

Ninette came back into the room and told me that my white count was a little low.  It was low, but normal for someone at my stage in treatment.  This meant that I had to get an injection of Neulasta, which is something I will likely have to get after each chemo treatment.  Neulasta is a drug that tells your bone marrow to make more white blood cells.  It helps to ensure that people on chemo are not so susceptible to infection because their immune system is so compromised.  Of course, like everything else, Neulasta has side effects...the primary of which is bone pain.  Your bones can ache as they are stimulated to produce more white blood cells.  Dr. Banerjee recommended I take Claritin (go figure) and Aleve right away to prevent the bone pain and to continue it if I still experience the pain.

My visit to Dr. Banerjee also cemented the fact that I will be getting a portable catheter for my upcoming chemo treatments.  They discussed this possibility before I started chemo, but we held off because of my "beautiful veins."  Well, after the tragedy that was the last attempt at my chemo IV, I am more than willing to sign up for a PORT.  PORT will be a small device placed under the skin near my collarbone that will provide direct access to my veins for future IV's.  It will save me the pain of needle sticks and also insure that my veins remain healthy for the rest of my life.  Placing the port is a procedure that is done outpatient, and I won't be under general anesthesia, but I will be "out" in a twilight sleep state.  Looks like my PORT is going in on Friday.  Prayers are appreciated.  

So now, 3 days after my re-check, I am definitely feeling the bone pain.  It's so odd.  It also comes in waves and shoots down my spine into my lower back.  Sometimes in comes in the form of my ribs and sternum aching and throbbing.  Other times it runs along my forehead and down the between my eyes on the bridge of my nose.  It also aches in my pelvis, my hips, and my thigh bones.  I called the office yesterday to let them know that I was still experiencing the bone pain despite the Claritin and Aleve, and oh-by-the-way, is there anything more I should do with this headache?

The good news was that the bone pain is totally temporary and should wear off in a day or two.  In the meantime, Susan prescribed me some prescription strength Ibuprofen, and if it's really severe I can take my Vicodin from Dr. Bolitho.  As soon as I finish this post, I'll go take my pain meds because my bones are feeling pretty achy right now.  

The bad news was that they are ordering a STAT MRI of head.  Eeesh.  I thought all of this was over...I thought that the PET scan was all they needed to be sure that there wasn't anything else anywhere.  Well, I guess not...or maybe so, but they need extra insight into what is going on with my headaches.  Today, the headache has actually been a lot better, so I'm sure that it is just a side effect of the chemo and that the MRI will reflect that.  But still, it's scary.  I have the MRI tomorrow (Wednesday) at 3pm.  Please say a prayer that the MRI will be clear and that I am able to get some relief from the headaches. 

Are you still with me?  I'm sure those of you that have asked how I'm feeling are regretting it now, but this is pretty much a complete picture of everything...that, and yes, I am tired.  I tire out more easily on some days, but on others my energy seems to be fairly normal.  Today was a tired day, and I got a quick nap in this afternoon before my darling Mia woke me up to cuddle.  Not a bad way to wake up.

Also in happy news, my incision that had to be revised has healed and I am able to take normal showers again!  YAY!  Additionally, as a preemptive strike, I cut my hair.  It's the shortest I've ever had it and I'm enjoying this fun new cut for the last few days that I can.  They say that hair loss starts anywhere from day 14 to day 21, so I know my chic new 'do is not long for this world.  Here's a pic:

I've said it before, and I'll say it again...I'm really sad to lose my hair.  But, the inevitability of losing it gave me the bravery to cut about a foot of it off and realize that my long hair doesn't define who I am, and I can still feel good about myself without it.  And if I don't feel good about myself without it when it's all gone, you know I have a killer wig waiting in the wings.

More happy news: Our sweet Harper turned 2 on Sunday.  She didn't get a party with fanfare and all of the trimmings (Mommy couldn't get it together--her 3rd birthday party will be off the chain!), but she did get two lovely birthday dinners with her family...and some presents...and cake, natch. 

Goodnight everyone :). xoxox- L