Sunday, June 28, 2009

Just checking to see if mobile logging really works...if so, that's cool!

Summer is here!

Okay, I know it officially started last week, but tomorrow starts camp for my two older kids. They will be out of the house all day. I am conflicted because while I am looking forward to the full days without them to go through these bad chemo weeks without worrying about entertaining them (or my poor husband having to do that) I hate the fact that they will be gone for 8 weeks all week. I know this is really best for them, and they are going to have the best summer, and there are still plenty of times when we will play, but I just want to say for the record, that I will miss having them around.

Okay, so let's make the list of things I am going to do while they are in camp all summer, even though I still have one kid at home who will require attention (when you have 3 kids and 2 are gone, 1 seems like you could rule the world blindfolded with one hand tied behind your back) here goes the list:

1. organize each room in the house and keep it clean for at least 48 hours
2. put photos in kids and family photo albums from the past 3 years (no big deal, that should take a few hours, right?)
3. start ordering photo books for the kids for each year of their lives, including family pictures, because there is no way #2 is ever going to get done unless I hire someone to put them in an album and since I'm not doing that for a number or reasons (mostly I think that's too lazy) #2 is a pipe dream
4. work out every day on the good days through chemo so the bad days are fewer in number (this one, I might be able to pull off...)
5. do something crazy with my husband during some of those days, and that does not include our bi-weekly bonding treatments at the chemo lounge
6. smile as much when my kids are at camp as I do when they are home

Well, that about does it for me. Today was an almost nausea-free day. Yay me! I really think eating some protein when I feel queasy helps me out. Better get started on my to do list...tomorrow!

Friday, June 26, 2009

He shaved his head for me...

Seriously, my husband came home from playing golf yesterday and his hair was shorter than mine. I know he did it for me. He says it's his summer do, butI know he did it for me. And I love him for it...I loved him before that, but this just solidifies what a totally awesome man he is.

It makes me feel more confident about going bald when all of the hair finally falls out (very soon, very soon). Right now, it is falling out in patches on my scalp, not a pretty look, but I still have a lot of hair to go. I've been told it will all be out within the next 4 weeks. Back to my awesome husband, I know, he's just saying that it's no big deal, I know that. And I love him for that...and that he looks really good with no hair!

Today, was an awesome day. No nausea, no naps, went to the beach with the kids for the last hurrah before camp and even made it out for a full dinner date with my husband. I know each day will continue to get better until next treatment, and I will take every minute of it with gusto. When you feel good, you feel good!

Thursday, June 25, 2009

Play that funky music, white boy!

I'm watching the news, all about Michael Jackson dying. It is sad, I know. But the news of his death brought me to the music of his life. It made me and a good friend of mine go through his music (and sing lyrics together on the phone and laugh) and I was not only amazed at how talented he really was, but how great his music was. I don't think I've sat on the phone reminiscing about music, and singing songs, since I was a teenager, but we really had fun on the phone!

I guess I should be sad about this, but I am sitting here singing songs in my head (go back to one of my original blogs, January 2009, called Songs in my Head and you'll understand me more) and I am totally smiling. We need more music that makes us smile. I need more music to make me smile. Again, when depressed, I can launch myself into "Comfortably Numb" and "How Soon Is Now" but I could just as easily think about "Thriller" and "Boys of Summer" and change that mood around. Seriously, I need to find my Thriller CD and play it for the kids, even if they scream for "Squeeze Box" and "Orange Crush" and play them what will soon be known as "their music". No kiddie music in our car, only the "classic" stuff we give them, and then the kids call it their music, and I love it!

Well, I am off to the attic to search for some of these CDs and torture my husband and kids on our way to the beach tomorrow. I don't care how much they scream, I'll be smiling!!!

Wednesday, June 24, 2009

I'm singing this note 'cause it fits in well with the way I'm feelin!

Cannot think of a title for this post. Just feel so good right now. I had a busy day, no naps for Paula, and though I had my ups and downs, right now, I just feel up.

I do notice sometimes that I try to get sad about what's going on. That I cannot be as energetic for my energizer bunnies as I usually am, that sometimes I wish I could give Rob a break and not have to depend on someone else to pitch in, that I HATE what my head looks like...I know, I know, give this a rest, but I'm telling you, the shaved head is probably the worst part so far, and I've felt constant nausea, even with medicine for the past month, and more other things than I care to mention, but I cannot get over my lack of hair! I digress.

Anyway, I find myself lost in my thoughts and depressed by them and I see this big hole where my emotions are about to jump, and then I stop myself. I know if I let myself go there, I could cry and cry and maybe never stop. I am not saying that crying is bad and I need to be some sort of stone, but when I see myself going down that negative path, I remind myself of all of the good that is not only going on in my life, but the fact that things could be SO MUCH WORSE, and I snap out of it. It is amazing how I find myself doing that these days. I should have been doing that so much more for problems that were so much smaller than this...I should have been doing that for the past 38 years! I guess we all want to believe that our drama is dramatic and oscar-worthy? I'm not sure. Or maybe it's just me? All I know is that I can visualize my sadness and step back from it for just a moment, and just move on.

Oh, and I hate to be so negative in my blog, there is just so much crap going on...I would much rather tell you about Lili trying so hard to make up her own jokes. She cracks me up. She just remembers one joke and is now trying to make up new ones. I catch her and she wants so hard to make up good jokes that she can actually remember in her 3 1/2 year old brain. I have GOT to get this kid a joke book! Or the 20 month old who sings (in her own 20 month old words) the lyrics to "We Will Rock You" and "We Are the Champions" and the theme music to Star Wars. Or Jacob, the 5 year old, who wants to act like a 6 year old (and I now get him to do many things he would protest by simply telling him that this is what a 6 year old does, not a 5 year old) who is so obsessed with the 6 Star Wars movies and how Darth Vader becomes Darth and how he turns back into Annekin Skywalker at the end of the 6th movie...the questions are so amazing!

I love watching my kids grow. I never thought I could be a stay-at-home mom, but they have such wonderful imaginations and are so fresh every day for new things. I could just sit and watch them sometimes and not take pictures and not take videos and not talk but just watch them work. I hope they grow up enjoying me as much as I enjoy them (minus teenage years, right?)

Tuesday, June 23, 2009

keep on truckin!

well, thanks for all my facebook friends for their awesome inspiration and support! really, you guys have no idea how much it touches me to read your really does my heart and soul good to have such an awesome and extensive support network! thank you for making this journey a little less painful!

on another note, it really does get better between sessions. i walked this morning (power walk, so i rock!), ran some errands, took a power nap (shouldn't wait so long between eating) and played with the kids in the backyard and EVEN made three different dinners for my family. honestly, i made wacky mac for my lili, spider man mac n cheese for jake and pasta with meat sauce for the adults for dinner. it's crazy enough that i am sick and making dinner, but this went beyond. but, whatever, i was glad not only that i could do it, but that i had the energy to do it. AND, well, this might be pushing it, but i think i am up for a game of rock band tonight. no just sitting on the couch!

i spoke to the nurse today. she said that i am actually doing well and their patients who try to do things, and not give into the side effects, end up healing much, i am going to keep on going and make sure that i heal well.

i still hate hate hate what i look like with a buzz cut, and i still cannot stomach wearing my wigs, but i know my hair will grow back and it will look great. no, i am too vain to post a picture yet, and i may never do so, but, i know, this too will pass!

on a final note, it amazes me how long it takes to prepare an art project for a 5, 3 1/2 and 20 month old, and how fast it takes them to do it. but, painting outside is a total winner and something i know they won't want to do with me when their teenagers, so i'll take all i can get!

love to you all!

Monday, June 22, 2009

i've got to admit it's getting better...

well, i can honestly say that today was much better than yesterday! i didn't feel that same exhaustion that i felt on sunday. i still had to take a nap, but that sheer exhaustion is gone. i took the girls out for some fun and even had some fun myself! i know tomorrow will only be better so that is good! trying to deal with nausea every day. i hate it. but i am up and writing so that is good!

Sunday, June 21, 2009


I don't even know what to say. I thought yesterday was pretty crummy, I felt waves of nausea all day. Couldn't even wear my wigs...the smell of them made me want to vomit. I was able to eat (this baby's not gonna lose weight, is she?) but slept most of the day.

today, all I want to do is sleep. I got myself up and finally took a shower, but I just want to go back and rest. I feel so guilty because I have my kids around, though there are grandparents who want to help take care of them, I feel like they are just running around too much and are bored. But I have no energy to give them today. What an amazingly frustrating feeling this is.

I think I will go back and lie down now. This sucks.

Friday, June 19, 2009

Sinead O'Connor?

It's been 7 hours and that's about it
Since I buzzed my hair all off.
I go out wearing wigs but caps at home
Hope the kids get used to it...

Okay, enough trying to create lyrics to "Nothing Compares to You" hair started falling off slowing this morning, but I wasn't willing to have an emergency on Sunday in Bergen County, NJ, when no stores are even open to get a haircut, so I got the buzz cut today.

Not going to lie to you, I'm not happy about it. No offense to butch lesbians, but I really don't enjoy this haircut. I know, I know, it is going to grow back, but I'm still not happy about the process. Not ready to go out without some sort of head covering. Let's see how bold I am in 90 degree humidity, but I'll stick with this for now.

So, Godot has come and gone on my scalp. Let's see where else the hair will fall out. Dare I need the bikini wax yet or not? To be seen...Oh, and I still have eyebrows and lashes for now...and hair on my body...

I was told tonight that my aunt, who died of colo-rectal cancer tried to go through chemo twice, felt sick after the second treatment and stopped. I wonder if that would have saved her life. I mean, I've come this far, why would I stop now? I lost my hair, how much worse can I get??? Please, let's not answer that now!

Thursday, June 18, 2009

Update for the day

Well, not sleeping didn't do me so well today, but that's okay. Power walked in a huge mall with my baby for 45 minutes while feeling very nauseaus, but I did it. On the way home, because I didn't take my afternoon nausea medication soon enough, I felt like I was going to barf...not cool in front of my husband, dad, and 5year old (Big Jake) , 3 1/2 year old (Lilibell) and 19 month old (Sarita). So I kept it together like a champ, took my meds and collapsed for 2 hours. Lillibell joined me in bed to watch some of her favorite progams so that was nice.

I had dinner and it just didn't sit well with me, but for dessert, I craved a vanilla ice cream hot fudge sundae. I knew it wouldn't sit well with me either, but I took my antinausea med, had the sundae and then gargled with salt water to get rid of the yucky film it left on my tongue...but it was worth it!!!

Oh, and my poor husband had to give me a shot of neulasta to boost my white blood cell count. That's the one that can give me the bone pain side effect, but before I can take any Advil to relieve the bone pain, I have to make sure I don't have a temperature of 100.4...otherwise I have to go to the hospital for anti-biotics. I'm just working on the positive attitude that I won't have bone pain so I don't have to worry about the rest of the stuff!

I have heard people talk about being so forgetful because of chemobrain. I think if I can remember all the crap that comes with taking medications and side effects to look out for, I am allowed to forget all the other stuff. As long as the kids don't go out of the house naked and starving, I think I've got my shit together!!!

So far, I've still got my hair! Let's see what happens because I REALLY need that bikini wax...

Side Effects

Just wanted to note that I didn't sleep at all last night, but I caught up on my Globe Trekker episodes and Family Guy and Robot Chicken. Felt nauseaus then and feel so now. Just in case I wanted to help anyone else with chemo, here's my blog log. i hope my meds kick in soon...Still waiting for Godot for other side effects, but I won't look a gift horse in the mouth!

Wednesday, June 17, 2009

Chemo - take two!

i sit here and type one-handed as i funish the end of my second chemo treatment. felt some itchiness and made nurses run around to make sure i was not having a reaction...i am ok. looking forward to this week's after effects which may include: bone pain, more nausea, loose poop, tiredness and the best one of loss! ithink i will freak when it happens, but i am trying to be strong and not scared. i think seeing other women with wigs helps. BUT i am waiting to see whether ALL my hair falls out everywhere or if i will need a bikini wax. it has been over 2 months so i can tell you it ain't pretty...but when i asked the oncologist whether waxing is ok, she suggested i wait...that i might not need to worry about that. what the heck, i have lines where i used to have nipples and rock hard temporary implants until the final implants are put in in november...and i don't have tons of feeling there anyway, so who cares if i'm a little hairy right now?

oh, and in case i forgot to mention, i still get my period through all this. i mean, it's nice to know i am healthy (outside of this cancer crap) but it would have been nice not to worry about that for some other reason besides pregnancy...which brings me back to my needing a bikini wax...that might be my new form of birth control...nah, that's not gonna stop me from gettin some! oh yeah!

time to disconnect, go home and wait for something to happen...just kidding, life is happening and though i will take it easy, i am not going to let fun pass me by!

Monday, June 15, 2009

Would Health Care Reform Deem My Mammogram Necessary Before Age 40?

Today, President Obama spoke to the AMA about Healthcare Reform. I agree that something needs to be done about healthcare. My husband lost his job in November. His company covered our health insurance through January 31st and COBRA kicked in on February 1st. Unfortunately, our 18 month old daughter had to take an ambulance ride to the emergency room on February 1st and, to the hospital, it looked as if we weren't covered by insurance. The ambulance ride bill was $1,800. The unisured patient discount was $1,500. We were officially charged the difference. However, once COBRA did kick in, the insurance company paid the fee and we did not pay anything. No one can argue that the ambulance ride uninsured charge and discount demonstrates a breakdown in our system, however, this same February, a new doctor sent me, 37 years old, for my first mammogram. She didn't feel anything, she just thought I should have a baseline mammogram. They found something so small it couldn't be felt, but after my biopsy was performed in the office with results back to me 30 minutes later, I was told that I had breast cancer. I made the decision to have a bilateral mastectomy and was able to find a surgeon and have the surgery 6 weeks later. Now I am undergoing chemotherapy.While I understand that President Obama's plan places an emphasis on preventitive care, most doctors don't send their patients for their first mammogram until age 40. My oncologist and cancer surgeons both told me that my cancer was fast-growing and could have been a much more dire situation if it had it been been detected a year, much less three years, later. Who knows whether my doctor would have felt comfortable sending me for the mammogram when she did if she had to worry about penalties for "unneccessary tests." Who knows whether those people, like me, who do not fall into a "high risk" category would be allowed to go for such tests before age 40? I want my doctors to feel comfortable sending me for any tests they deem important, whether an insurance company or the governement feels otherwise. This doctor and this test saved my life and to me, that is very necessary.

Sunday, June 14, 2009

Chemotherapy - Treatment One

I can be cool. I can pretend that I can handle anything. I can go for my first treatment with confidence, chat with the nurses and doctors, pretend that I am okay...but I am not.

I definitely took the anti-anxitey meds they gave me that day and waited for the side effects to happen. I didn't sit around and wait, I was out doing stuff, walking power walks, playing with the kids. But after my Wednesday treatment, Sunday was pretty awful. First of all, I guess I wasn't taking enough of the anti-anxiety medication at night so I had not been sleeping for a few nights anyway, but by Sunday, I was a wreck. My husband took the kids to a birthday party and I had planned to take a walk to garner some energy, but my husband told me to take a rest. So, I sat on the couch all morning unable to move. My stomach was a complete wreck, diharrea, so I couldn't be far away from a toilet, and I couldn't even go to the park with the kids. I couldn't eat anything.

Okay, so while I really felt awful, I know it could have been alot worse, and that's what hit me...this is going to get worse. I am going to continue to feel nausea throughout the two weeks, unable to sleep without taking two anti-anxiety pills...

Now I have to wonder how soon after my next treatment that my hair will fall out. People keep telling me how great I will look bald, but I DON'T WANT TO LOOK BALD! I don't want to lose my eyelashes (though I haven't had a bikini wax in over 2 months, and while I really want one, if it is all really going to fall out, what's the point now??? But oh, that is so gross, I really cannot stand to look at that!) I might be more upset about my eyelashes than my hair. I bought two wigs so I am ready for it. I cut my hair very short and snet the long hair to Locks for Love so I'd feel like someone was getting something good from the hair. I brought the kids with me to look at the wigs so that they wouldn't be surprised. Cut my hair short to get them used to it.

But I am so uncomfortable about the next treatment. All I see are the red vials of poison waitijng to go in my makes me feel sick to think about it. I had wanted to write something short about it, and I have, and now I am going to bed

Filler up, please?

So, now I'll talk about the expansion process. First of all, my plastic surgeon has the bedside manner of a hobit. He made me feel like my breasts were never going to look good afterwards and said outright that if I was going through a mastectomy for cosmetic purposes, I had the wrong idea. Are you fucking kidding me?

I mean, yes, I did and still do have hopes that my breasts look great when this process is done, this was FAR from my reasoning to have the double mastectomy. I was going for peace of mind, not waking up every morning thinking I still had cancer in my breast, you know, reasonable considerations.

I did go for a second opinion, and that plastic surgeon assured me that while my surgeon had awful bedside manner (much different than my cancer surgeon who is a saint) that he did good work and was really just a perfectionist. I could handle that.

So, after my surgery, this guy looked at my boobs once a week to determine the next step. Step one was to get out the disgusting drains. Couldn't have been more thrilled that they were out less than a week after surgery. Boy, were those things painful and pulling and gross and ugh! I came back the next week, and two nurses took syringes filled with saline, and literally, within 20 seconds, my breast size had grown! I have little metal ports that make this process so easy! Then, the doc would come in, look at his work and say he'd see me in a week.

I went through this process five times, the last one was the worst. See, the purpose of these expensions in to expand the pectoral muscle, because once all the breast tissue is gone, there is nothing left to hold up an implant, so for a mastectomy patient, the implant goes behind the pectoral muscle, which needs to be stretched to withstand the new implant. I could not lay down flat, or at all for a few weeks after the last stretching. As much as I wanted my breasts to be as big as they had been before, my pectoral muscle reminded me they could only be so big. So, while they will be quite perky and braless for all eternity, they will never quite be the size they were before.

I just cannot wait for the new ones to come in so I can feel something other than hard rocks behind my skin...

Mamma got a new rack

Well, it has been just over two months since I had a double mastectomy. I can say that it has been the craziest two months in my entire life. I feel the need to write down not only what happened but my progress since then, as I intend to use this blog as my diary of sorts.

I can remember double dosing my Xanax the night before my surgery (per my surgeon's suggestion) and thinking more about potential complications that might occur than the fact that I was having cancer cut out of my body and my old breasts removed and replaced with new models...Why was I so concerned about complications? I'll get to that blog another time, but it has to do with my brother dying from complications to elective surgery.

But my husband, mom and dad stayed with me while I had my surgery...well, in the waiting room. I remember being brought into the room and being woken afterward that the surgery went well, followed by the most searing pain in my chest. I told the surgeon I was glad that things had gone well, but that I really hurt and wanted to not hurt.

I don't remember much about the hospital after that. I remember worrying that I wouldn't be able to get around, like I couldn't after my 3 c-sections, but I was surprisingly mobile...outside of the fact that I couldn't get my hands over my head, literally, but I could move around surprisingly well!

I remember trying all sorts of pain medications because nothing seemed to cut through my pain. The nurse was so patient and told me to try some pain management consistency...she was also not surprised that my cocktail of pain management choices caused me to vomit...but I felt fine after that.

I do remember walking the hallway with my husband the day after the surgery with a huge smile on my face. As much as I had loved my breasts and was sad to part with them, I felt no remorse at all afterwards. In fact, I was smiling from ear to ear because I was so happy to know that the cancer was gone...until I started looking around at the other women and talking with them. Those who were there for their second or third time didn't talk in terms of not expecting to be in the hospital again, they were just there for some other procedure, cancer removal. I thought, "Holy shit! Not only did I have something in my body that could have killed me (was kind of in denial about that), but this might NOT be the end of it." That's why the nurses wouldn't agree with me when I said goodbye and I would never see them again. All these women on my hospital floor probably felt the same thing I thought when they left for the first time. I pray to G-d that I don't have to see that hospital floor ever again, but seeing the other women there made me feel less certain.

But, I got past that and was very excited to come home two days later. Four drainage tubes coming out from under my arms, and flatter than I was at the age of twelve, I came home. It was very hard to come home, emotionally and physically. I still couldn't lift my arms over my head and couldn't really hug my three little kids or pick them up. When my 3 1/2 year old felt the drainage tubes, she seemed confused. I tried to be very open and matter of fact that they were no big deal. I asked her if she wanted to see them. I only showed the bottom of the tube which hung by my waist...she was totally freaked out for the rest of the night. It was very depressing. I couldn't help myself or console my daughter. Not great. Then, a few days later she told me she didn't like me anymore. I told her that I was sorry to hear that but that I still loved her very much. Oh, didn't that kill me.

Plus, I'm drugged out from pain killers, I have to have my husband drain my tubes twice a day, I cannot find a comfortable place to sleep at night, I have foreign material in my chest (chest expanders) that felt uncomfortable AND I was unable to take a shower for two days after the drainage tubes came out and I had just come home from the hospital! What a nightmare! AND i was trying to pretend that I was okay and everything was was rough.

Thankfully, I had my drainage tubes taken out just 6 days after surgery and was able to take a shower two days later. Still, barely able to get my arms anywhere over my head, after doing my exercises 5 times a day, I not only took my first shower, but I somehow ambled my arms over my head enough to wash my hair. I looked like crap but I was so proud of myself!

By a month I was able to put my arms entirely over my head and by six weeks I was picking up my kids and doing everything pretty much normally. Sleep is still a little rough on my sides, but I can remember thinking that I'll NEVER be able to sleep on my sides again. Only two months later, I can do it!!!

When I talked to the surgeon a week after my surgery, she was very optimistic that they had gotten rid of all of the cancer. I had a small invasive ductal carcinoma, 9 mm all in, and it had not spread to my lymph nodes. My cancer surgeon said they were waiting for some other test results to come back, but she was fairly certain I was not going to need chemotherapy based on the size of my cancer.

But my cancer was smart. And I passed a test I would have rather failed. I tested positive for Her2Neu...some protein that tells cancer to grow like the 6 Million Dollar Man - stronger, faster, harder - I was going to need chemo. The thought wasn't that I did have cancer still in my body, but if, on the off chance a microscopic cancer cell got into my bloodstream, it would land somewhere and grow like weeds.

When I got that news, I was devistated. I could handle new boobs, but poisoning my body with chemo, I just couldn't deal with. I didn't want to lose my hair and look and feel sick. I have three small kids, I don't have time for this! Well, more about this later, but here's the positive spin as I can see it:

1. I never have to wear a bra again (unless I want to). These ladies stand upright and, while I don't have the final implants but just expanders, they do look quite nice, and nicer than I had expected!

2. I don't have cancer in my body and I don't have to be paranoid again that the cancer will come back in my breasts because there is no more breast tissue for cancer to return! Yes, I still have to worry about a microscopic cancer cell, but I no longer have big pieces in my body.

3. I don't have to wear a bra ever again and they already look good!

4. I will be around to dance at my grandchildrens' weddings!

5. I will be here to bug my husband forever and ever!

I count my blessings for how well things turned out if they had to with having cancer:

Having the miscarriage I had last fall was not only a sanity saver (4 kids under 5 would have been nuts for me!) but a life saver. I would still be pregnant today with a tumor growing if I had not had the miscarriage...and I would have put off taking care of myself for at least a few more years while I was taking care of a newborn...who knows how big the tumor would have been by then!

My husband losing his job with money in the bank was a godsend. He has been the family's rock since this happened to me. He wasn't thrown into this quickly, he had been home a few months to know our routine and make sure the kids were well adjusted during this time.

They got all the cancer out because there wasn't much there to get!

I ask myself daily what I did wrong to deserve this. I know I will never know but I still feel like I pissed off g-d and now me and my family have to suffer, but I also know that I cannot go back but go fowrard and I hope that by doing so strong and with my head held high, at least I'll come out on the other side a happier and better person than I had before...