Complaining Again

I'm at the point where I'm just wondering what the hell happened to me. Throughout my pregnancy I didn't really think about much other than the precious little boy I was trying to grow. After he was born I had a couple months of exhaustion where I couldn't even think at all. Now that I've found my way to the other side of that post baby haze...I'm left to wonder...what the hell was that...this...all of it?

During my pregnancy, my experience with chemo wasn't too bad. I was sleeping well and the side effects were very minimal. This time it feels so different. I'm sure a lot of that has to do with the lack of sleep I've had. It's just hard to feel good at all when you're sleep deprived. I'm wondering also if the lack of sleep might be related to the side effects I'm experiencing this time. You know that feeling you get when you're watching a really touching movie and you start to feel that tightening in your throat? I guess it would be called getting all choked up... Well that's the feeling I have in my throat all the time. Except mine didn't come from watching a touching movie...it came from a horror story. Ha! That was a good one. Anyhow, I also have a lovely rash on my head. The oncologist said it was also a side effect of the chemo. Mouth sores... I didn't get them with the last chemo drugs (which is when it was more likely) but I have them now. Neuropathy is the least enjoyable side effect of all. Weakness, numbness and tingling in the extremities is a pain in the butt. I've found a way to ignore it most of the time. The absolute worst part of this all has been the weight gain. I talked to my oncologist about it today and he said not to worry about it and that I can deal with that after I'm through with treatment. I said, " You mean after I've gained another 30 pounds?" I have continued to gain weight since Ezekiel was born. My oncologist said that's just the price we pay when pumped full of steroids that make you feel extremely hungry all the time. He also said that my lack of sleep is probably contributing to the weight gain. I'm pretty disappointed that I couldn't just experience nausea as a side effect to take care of the weight gain for me. Just kidding...I wouldn't really wish that on myself. I know that most of the problem is my inactivity. I just can't seem to find the energy to get up and get active after so many months of not being able to. I wonder how many times I'll complain about this before I actually just do something about it?

Another crappy thing about this whole chemo thing is that I am at the point where I'm irritated so easily. Every week after treatment I immediately get asked about 50 times how I'm feeling. I feel like crap...can that just be a given without being asked and making me have to think about how crappy I feel...because I was doing a really good job of ignoring it. I usually just lie and say that I feel fine because I don't have the desire or the energy to explain how I really feel. See? I have a really bad attitude right now.

A couple weeks ago, shortly after I had to shave my head again, I was asked how I am doing. The first thing that came to mind was the loss of my hair and how upsetting it was for me. After that conversation I started to wonder if I'm a vain person. Why, with everything I've gone through did I choose to mention my hair? I've decided to give myself the benefit of the doubt on this one and explain it by saying that I'm more affected by the emotional trials as opposed to the physical pain. Ive learned how to live with pain from all the broken bones and other sports injuries I've had. But the pain of loss...hair, breast, healthy body, self-esteem, friendships... those are the things that weigh heavily on me. The relationships most of all. No one really ever talks about how hard this situation is on relationships. Almost every relationship I have has been affected by cancer...from my children to my friends, from my sisters to my husband.

Yesterday I completed number 6 of 12 taxol, number 12 of 18 chemo treatments all together. I was telling my sister earlier today that I was half way done and then I decided to correct myself. I am two thirds of the way through chemo. That sounds so much better. I can't wait to be done!

Happy New Year

Well, I never sent out Christmas cards so I've decided to utilize my blog as a surrogate for a New Years card instead. I've included some family photos below. My step-son is missing from the photos and no photo is complete without him in it but I will just have to settle for incomplete photos this time.

Some of my favorite moments from the past couple weeks:

Last week Ezekiel had his two month check up. He weighed in at a hefty 14 lbs 11 oz. and a whopping 24 inches long. My healthy thriving precious little Chemo baby. My little miracle. The doctor spent quite a bit of time examining him...even observed his neck strength while on his tummy. Zeek made his mommy proud when the doctor told me, "He is so strong. See the way he has been holding his head up so high for such a long period of time? He is as strong as a four month old!"

Tobias is so impressed with Zeek. He has made the comment on several occasions that Zeek is so amazing because he had breast cancer. It's so cute how his understanding of things comes out. I've corrected him several times but he continues to state that Zeek had breast cancer.

Daphne got some girl Legos for Christmas. She and Ephraim were building one of the Lego sets and I heard Daphne say to Ephraim, "This girl has breast cancer." I peeked over at them and Daphne had taken the hair off of one of the girl Lego figures so that she was bald. It was so cute but at the same time somewhat heartbreaking that my little girl pretends her toy is sick. These kids shouldn't have to know about cancer...at least they're not afraid to express themselves. Sometimes I wish they would express themselves a little less. I've got some real talkers on my hands.

All three of the kids are super helpful with Zeek. We've had colds floating around for the past couple weeks so some days I've made them keep their distance from the baby. Those days are agony for them and all I hear from them is, "Can I hold Zeek yet? I'm feeling better." I've started calling Daphne Zeek's sister mommy because she's so sweet and nurturing and just instinctively acts like a little mommy to him. The boys are just as sweet to him too. I am so proud of my kids and their tender and loving hearts. I am so blessed.

Ezekiel has been such a huge blessing to me in so many ways. Right now the greatest gift he provides me is affection. With all the sickness that's been going around and my counts getting low, I am having to be extremely careful about kisses. I am only kissing the older kids on the forehead at bed time and that's it. But Zeek is safe to kiss all the time and I am so grateful for that.

Speaking of counts...after the Neupogen injections I received a couple weeks ago my counts went sky high. They have since then been steadily decreasing each week. I have a feeling this is the week they will get dangerously low again. I can feel it. My body is wearing down again. The good news is that my prescription was finally filled by the pharmacy and I now have the Neupogen shots on hand at home to self administer as soon as I know they're needed.

Well, I want to close this post by saying that I feel truly blessed. Despite all the crap that has taken place over the past year, 2012 was not a bad year. Yes, I was diagnosed with cancer but I was also blessed with my little miracle baby. 2012 poured blessings into my life. It was a hard year but I won't complain because life is hard and I believe the challenges in life are what make the experience so beautiful. I have found beauty in so many unexpected places and at so many unexpected times. I am thankful for 2012 and the beauty it brought as well as the trials.

The Last Day of 2012

I have to admit...I'm kinda disappointed that the world didn't end last week. I was really looking forward to not having to deal with cancer anymore. Just kidding...I never expected the world to end nor did I want it to.

Here I am sitting at the cancer center...receiving number 5 of 12 of what I'm hoping is the last chemo treatment I will receive for the rest of my life. My dad came with me today. My sister, Cyndi is my usual chemo companion but she wasn't able to make it today so she asked my niece Zoey to go with me. Zoey planned to go with me until her plans changed yesterday so she asked my dad to go with me. I hate that I have to have someone come with me to treatment. I don't like that I have to take up people's time. If it was up to me I would come by myself and not impose upon anyone. I know they don't mind coming with me and I think my sister actually enjoys having the opportunity to spend time with me. I don't like that they feel obligated. The fact that they have to pass me off from one person to the next makes me feel like a burden. It makes me feel small and helpless. I can't just go by myself though. The 30 minute drive along with the neuropathy and possible allergic reactions and the Benadryl are not a good combo. I can't argue my case of going by myself and win.

My dad just took this picture of me and informed me that it is for my blog. Not a great picture but it's the real me right now. Dark circles under the eyes...tired. Hat on. Since I shaved my head, I haven't gone out bald like I did last time. I feel more insecure this time. I don't know why. Well...it's also been pretty cold so the hats are more necessary too. I crocheted the hat myself by the way. :)

It's New Year's Eve. This is such a busy time for my family. Yesterday John and I celebrated our 12th wedding anniversary. I'm 33 years old and have been married for 12 years...wow! More than 1/3 of my life. Tomorrow Daphne will turn 6 years old. My baby girl...my New Years baby. I am 33 years old with a 9 year old, 7 year old, 6 year old, and 2 month old...12 years of marriage...one and a half boobs and no hair. Pretty impressive if you ask me.

I never got around to sending out a Christmas card this year. I can't even blame cancer or chemo brain. The real reason is because I can't send out a card with a picture of the family unless the picture is complete with my step-son in it too. We never had the opportunity to take a family picture while he was with us which means no Christmas card. We did go out and take some pictures without him. I'll post some of those pictures later.

If you get the VC Star, check out page 3A of today's paper. The photo of my family from the article they ran in October is one of the picks for photo of the year for 2012. I love that photo.

http://www.vcstar.com/photos/galleries/2012/dec/31/top-stories-2012/58069/

Bald... Again...

I thought I had prepared myself to be bald again.  There are just some things you can't prepare for.  I was definitely not prepared to mourn the loss of my hair again.  I thought it was old news...been there...done that.  Not so for me.  I am sad to have to be bald again.  Even though I didn't like my short hair at all, I loved the fact that I was no longer looking like a cancer patient.  Tonight I shaved my head again and as I was shaving it I found myself welling up with tears.  So silly... to get choked up over hair... especially when I had so little of it.

I haven't updated my blog in a while.  It takes energy and I have to prioritize what I spend my energy on.  This past week I have spent my energy on hand washing, disinfecting, and keeping all the sickies away from me and Zeek.  We both stayed healthy until I got my immune system back on track.  Last Thursday and Friday I got my Neupogen shot to boost my immune system.  I had my blood work done on Friday afternoon and my counts were back up.  Sunday I got a sore throat and a little bit of nasal congestion.  So I have a cold but I didn't get it as bad as everyone else and it wasn't bad enough to prevent my treatment on Monday.  Three taxol treatments done.  Nine to go.

Falling Through the Cracks

Below is the email I just sent to my oncologist.  Amanda is the Physician's Assistant that I had my appointment with on Monday.  She makes me feel a complete lack of confidence.  On Monday when she told me my counts were too low to get treatment, I responded with, "Oh good.  That means the chemo is working, right?"  Her response to me, "Not necessarily."  And that was it.  Those are the kinds of answers I get from her.  No explanation or depth to her answers.  She's lucky she doesn't have her own practice because she wouldn't be able to retain any patients after their first visit with her.    

Dr. Kass,

I was told by Amanda at my appointment on Monday that I should hear from someone on Tuesday about my Neulasta/Neupogen injection.  I didn't hear anything yesterday, so I called and left a message.  I didn't receive a return phone call so I called again today and was informed that I needed to be checking with the pharmacy.  I called the pharmacy and they said they never received a prescription for me.  I called Lydia and she spoke with Amanda and somehow the prescription didn't go through to the pharmacy on Monday.  Lydia said she would call in the prescription.  I then called the pharmacy again a short time later to confirm they had received it and they informed me that the prescription was for a dose that doesn't exist.  I just received a return call from the pharmacy stating that the pre-authorization is required and they're sending it back over to your office.  

I'm feeling very frustrated and like I was not informed correctly at my appointment on Monday about what I needed to do in order to get this going.  Two days have passed without any action at all because somehow the prescription never went through.  I feel as if I have slipped through the cracks and needed to bring this situation to your attention so that I can feel confident that it will get taken care of.

Thank you,

Rebecca Raymond

So...obviously I still haven't received my injection to boost my immune system.  I'm so angry I cried (that's what I do when I get really, really mad).  When I meet with my oncologist this coming Monday I will inform him that I will no longer have appointments with Amanda because I have no confidence in her.  

Please keep the prayers coming.  I am so nervous about getting sick.  I am becoming a little neurotic.  I visualize germs everywhere I go.  I'm getting so bad that when I wash my hands and then dry them with a towel, I then use hand gel afterwards just in case the towel was harvesting any bacteria.  Hopefully my craziness pays off.

Chemo Delay

This morning I went to get my third treatment over with.  I arrived at my appointment to find out that I can't get treatment today because I am neutropenic.  My immune system is basically non-existent. This really is a very unfortunate set back because everyone is getting sick around here and I now have to wait for my body to recover before I can get back on track with my treatment.  A one week delay doesn't seem that bad but this process has already been so drawn out.  Most people receive chemo treatment for five to six months.  Mine is being drawn out over nine months.  That's a really long time.  Well, I guess my doctor is working to get Neulasta or Neupogen injections approved by my insurance company.  I didn't know my PPO insurance had to approve for me to get a shot of medication that will stimulate my bone marrow to start producing more of those good blood cells that were killed off by the chemo drugs.  Apparently the insurance company needs to have the final say on whether or not my health is important.  It terrifies me to think what will happen when Obama Care goes into effect and the government gets to make these kinds of decisions.  Right now the government gets to hold the insurance companies accountable.  Who holds the government accountable when they're in control of socialized medicine?... Survival of the fittest?  Anyhow... I claim chemo brain on that little health care tangent... or maybe I'll refer to it as common sense. Ha!  Can you tell I'm a Capitalism loving conservative?

So... as the days go by I can feel myself falling further and further into this foggy and dull state of mind.  At the beginning of this whole journey I had a sense of humor, hope, energy.  Now I just feel like I'm too tired to feel much of anything.  Sometimes I just sit down, rest my chin on my palm and stare off into oblivion.  It's already been almost 8 months.  I found the lump/mass on April 18.  That's when I stopped exercising.  I had the biopsy, moved, had the mastectomy, placenta previa, bed rest, chemo, delivered a baby, expander surgery, chemo...etc.  Those are a lot of good excuses as to why I couldn't exercise... all of them legitimate.  Now I'm ready to start exercising again and I can't seem to motivate myself to get up and just do it.  I'm tired... so tired.  I feel like crap... all flabby and chubby from gaining weight during the pregnancy and not using any muscles for the past 8 months.  

A couple days ago I came across an article on the drug tamoxifen.  This is the drug I will be taking after I'm finished with treatment.  It is a hormone therapy drug for estrogen receptor positive breast cancer... my cancer.  The article mentioned a decrease in the mortality rate if the drug is taken for 10 years rather than 5 years.  The mortality rate drops from 20% to 18%.  Wow!  I have avoided these kinds of statistics.  I have a 18 - 20% chance of death within the next five years.  I am not prepared to hear that.  I am not prepared to think about that... and yet... here I am being forced to.  

I will stop with the blog here because I have vented all of my nasty negative emotions and I'm ready to let it go and move on.  I will end with something positive though.  My little chemo baby is fat as can be and he is starting to get really interactive.  He is working really hard on cooing and gets a couple out here and there.  I love this age where it seems like you can actually watch the daily changes.  I love baby smiles and Zeek gives me plenty to brighten my day.

Just Keeping On...

Zeek - 5 weeks old

I love Christmas!  I love the lights, the smells, the music.  I love the awe and wonder in my kids' eyes... sending Santa letters (Yes, they all still believe in Santa), seeing where the elf on the shelf has moved to, baking cookies, buying presents, drinking a peppermint mocha (only on occasion though because those things are so stinkin' sweet and I really do prefer my coffee to taste like coffee...cream, no sugar).  Despite the fact that I love Christmas, I'm having a hard time really getting into the Christmas mood.  I just don't have the energy.

Being pregnant with cancer was a lot easier for me than being a new mom with cancer.  It was easier to take care of myself when I was doing it for the sake of the little boy who was growing inside of me and needed a healthy mom for the sake of his own health.  It was easier to ask for help and to not feel guilty for receiving help when it was for the sake of my unborn child.  But when it's just for me... I can suffer through it... I can be stoic and act like things aren't affecting me as much as they actually are.  Here I find myself so tired... both physically and emotionally.  In the past six months I have had two surgeries, four months of chemo, and delivered a baby.  My body is tired.  My emotional state is not only harried by the natural emotional roller coaster caused by the postpartum hormones but it is also completely warped by the fear and exhaustion that comes from having cancer.  I like the little bubble that I have created for myself.  It's a safe little bubble where I don't think about cancer and what could happen.  But then sometimes I step outside of that bubble and I hear about women whose cancer has metastasized and their fear becomes contagious.  I don't want to live in fear.  I don't want cancer to have that power over me.  Cancer can't win that battle. I won't allow it.  I will live with hope and faith.  

My battle with cancer is not over but it feels like people think that it is over because I've delivered my healthy little bundle of joy into this world and got good news with the PET scan.  I got a clean scan and I was so relieved but what the scan means is that the cancer that was in my breast did not metastasize and start growing tumors in my liver or my bones or anywhere else.  Treatment is still just as vital as ever.  Cancer was in my breast and spread to my lymph nodes.  The lymph nodes could have sent cancer cells traveling throughout my body, ready to attack anywhere at any time.  

I just got home from number two of my final twelve chemo treatments.  The side effects were pretty intense this week.  Neuropathy is a common side effect and I was expecting it but there is really no preparing for the unknown.  I have been experiencing extreme throbbing pain and weakness in my forearms and shins.  It comes and goes at random times throughout the day and night.  It hasn't been debilitating in any way but it does concern me at times.  I get nervous when I'm holding Ezekiel and it happens... especially at night when I'm tired and not functioning well anyways.  I also get nervous when I'm driving because sometimes I have a physical response to the pain.  It comes on so quick and strong that all of a sudden I have to focus really hard on what I'm doing.  I tell you, chemo and newborns are not a great combination but boy, am I in love with my little guy and so happy to have him to focus on.  My kids bring me so much joy.  I can't imagine what it would be like without their beautiful little faces to brighten my day.

Daphne adoring Ezekiel