Sick and Tired

I have been under the weather for almost two weeks now. This past weekend I spent almost all of it in bed sleeping off this crud. I don’t know what it is and it tends to worry me. As much as I hate to see other family members ill, I’m really glad they all have what I have–it means, in a way, that this is probably not cancer related. It is just kicking me in the butt much harder than everyone else. Then Justin came home with a letter from his school saying that there was a confirmed case of H1N1 Flu present in his school. It really wigged me out. Lots of disinfecting, sanitizing, and handwashing going on here.

I had my yearly physical last night. I sat face to face with the woman who didn’t listen to my moans and groans for a year and just thought I was in need of Xanax or Prozac or both. I know she felt bad, but instead of rubbing it in, I just filled her in on how the year has gone. I wish I wouldn’t have been overtired and wiped out from my huge cold. It makes me more emotional and when she was asking me big questions, I just couldn’t help it, I started crying. God, I wish I wouldn’t have done that. Then, she thought she was right in her initial assessment of what kinds of medications I should be taking. That made me even more upset because why can’t someone just cry anymore without someone thinking they need to be in a doped up state just to relate to what’s going on in their lives. She has put me off to the nurse practitioner all year–since my diagnosis. I’ve been mad at this doctor for a year. Last night I was just too tired and feeling like crud to tell her how I felt about that. The one thing I was really hoping she would help me out on was my request to have an ultrasound done. She wouldn’t. I cried. Again.

Do I think I need an ultrasound? I don’t know. Do I want an ultrasound. Yes. I worry constantly about this metastasizing to my ovaries or my uterus. Pap smears only detect cervical cancer and I will admit–that as unpleasant as those exams are, there are worse things and usually they never bothered me much. Last night–my first one since all this has happened to me–was more anxiety-ridden than any other I had ever had. I had to sit on my hands so she wouldn’t see them shaking. What if? What if something comes back on that? It’s been 7 months since my initial diagnosis–what could happen in that time frame? I know the tumor that was found was said to be a grade three–most severe–even for as tiny as it was and that it was multiplying very rapidly. Could other radicals have found a host by now and be multiplying elsewhere?

Could it be that this is the reason why I am soooooo exhausted anymore? I just can’t believe that a few months ago I had been working and studying 20 hours a day and getting 4 hours of sleep–if I was lucky–every night for three years. Now I can barely see straight come 7pm.

Is my body once again growing and feeding some dragon inside me? Without anyone willing to let me have an ultrasound or pet scan–how will I ever know? I would just like ONE of each–a baseline–to know where I started and that way if I was feeling symptoms of something they would have a marker of where it has come from. Especially now–when Jeff may be losing his job and that will result in a loss of insurance benefits–which makes me pre-existing almost everywhere else. While I have the insurance–just let me do it! Why can’t the doctors code it so it doesn’t look like it was routine? Why does it have to be assumed to be–especially when the initial cancer diagnosis is the underlying reason for wanting one in the first place. I just don’t get it. It makes me so angry. It makes me cry, because I just don’t feel like I’m being heard or that I am just another cancer patient. Trying to “live my life” as my first oncologist told me to do is nearly impossible at times. Its not the same. I don’t think it ever will be no matter how hard I try to carry on with a smile on my face. It just masks the deep pain I feel over the unknown.

Then again–would I really want to know? What if the scans came back and I was glowing like a fire cracker? Would I really want to see that? Would that make me even more overemotional? Probably. But–why wait until you have symptoms–then it’s too late. Wouldn’t you want to know if you have a huge brain tumor or spots on your lungs, or tentacles wrapped around your ovaries? The quicker you can have surgery and cut it out–the better your chances–right? I know it all sounds irratic, but these are the thoughts that keep me awake at night. It’s hard at times to forget, and I make it harder on myself when I don’t follow my nutrition regimine that my nutritionist has worked with me on all summer. Or when I forget to take my Tamoxifin. Major guilt trip. I feel like I have some sort of control with those things or with the exercising, but I am still partly in denial and not being consistent. I have not fully jumped on the bandwagon–I did early on, but now I am falling off and being drug by the cart. I know I need to recommit. I know.

Could it be the Tamoxifin that’s wiping me out? I know it has played a part in my early menopause and with that–could that be making me so tired? Speaking of the Tamoxifin, I tried to see if I could have the doctor’s office prescribe all 5 yrs. worth of meds. in advance. I am terrified that we won’t have insurance and I will not be able to even afford the cost of my prescriptions each month. I have no idea what the cost is, but it doesn’t hurt to ask, right? So, I called there and I didn’t even think about the shelf life factor until the nurse pointed it out. She also really sounded odd and then she told me that they could only refill the Rx monthly so that individuals would be less inclined to sell the drugs elsewhere. Oh my gosh, great, now my oncologist’s office thinks I’m a pill pusher on the black market somewhere and I will be watched for that. It made me laugh in a way and then I realized that there are probably thousands of women in just the same boat I’m in–if not worse. Think about all the women in third world countries who don’t get the Tamoxifin. Then, I think about how I live in America and I will be considered pre-existing here pretty soon–unless an insurance miracle happens and Jeff gets a new job without a pre-existing condition clause.

Is it that it takes a very long time for your body to recover from chemo–(even though I only had one full treatment before becoming severely allergic and going into respiratory arrest)? how long does it take before your energy levels return? Do they?

Is my body fighting against something or just trying to still heal? I know 6 months later, my body is still not draining the lymphatic fluid correctly. Only two lymph nodes were taken out in surgery and my body should have, by now, compensated and learned how to move the fluid through my body. But it still pools under the scar tissue in my chest and it is painful. Weirdly–the whole top of my chest is numb–all the nerves severed, but deeper–around the muscle–it’s still terribly painful. How long will that last? Will it last forever? Is it my body trying to tell me to lay down and get vertical so the fluid can move better? Is my body just working overtime? I do worry about that lymphedema every day and knowing how its pooling in my chest doesn’t help my worries. The surgeon doesn’t seem too worried although in my 2nd followup with him two weeks ago, he was concerned about the continued pain factor I’m having. He didn’t suggest anything, though–so I guess I just live with it.

Will I ever feel the same?

Will my psoriasis ever go away? It seems to be worse these days and that was one of the first indications that I found that alerted me to something being wrong. I know stress exacerbates psoriasis and I am truly amazed I am not covered head to toe in the stuff. Be thankful its just on my elbows, right?

Is the constant stress of the cancer, my self-image, my oldest daughter, how everything is affecting my younger children, my husband’s impending job loss, the uncertainty that will bring to us financially, the loss of benefits, the mounting medical bills for me and for Jasmine, the stress on our marriage and all of our relationships just taking its toll and no amount of counseling can really fix ALL the triggers at this point?

Once this metastasizes–it is really hard to detect if it goes to the ovaries or to the uterus. Why can’t we just schedule a hysterectomy at this point. I’m really inwardly wigging out about this and even though my new oncologist doesn’t want to start “butchering” for no good reason especially when the genetic tests have all come back fairly positive–I can’t help but think–Isn’t cancer a good enough reason? I suppose if I wanted it done badly enough and threw a big enough temper tantrum–I’d get my way–but am I just being over reactional about it? If I’m no longer using the stuff–take it out. That’s three less places for this to land and I will know that I am not going to die from those associated cancers.

Sigh. Sometimes my brain gets so ramped up with these thoughts that they just spew out onto the page. I have to keep coming back to my bible to try to help quiet myself. My goal of self-quieting has been a hard one to tackle this year. I think it also gets revved up as my doctor visits start coming. I will go see the plastic surgeon tomorrow to talk about reconstruction–something I totally didn’t think I was ready for, but with the possibility of losing insurance and the fact that they will now pay for a boob job–I’m going to talk about the options. It may not even be an option, but I have to go and check it out or I will be mad at myself if I let the opportunity slip away. Next week, I see my oncologist for a 3 month check up. I hope we will look at bloodwork and see if anything shows up there. I don’t know what I should be asking him at this point because I just feel like everyone wants me to “live my life”. If any of you have any questions I should be mulling over for him, please let me know. I would welcome them whole heartedly.

I received my long awaited call from NAFCC (National Assoc. for Family Child Care) that my long overdue national accreditation observation is about to happen. I have been working on it for two years. I applied for the observation the end of December 2008. Normally, you should get a call between 4-6 weeks to schedule the observation. Here we are 9 months later and I will finally undergo this on October 6, 2009. They have been swamped since revising their re-accreditation standards and since I am a newbie, I guess, I was not a priority. I often think of what that would have been like should I have gotten that call within the normal time period. I was just getting diagnosed with breast cancer. I would not have been ready for that at all. Looking back, I really am surprised I made it through the summer and really glad that this observation is coming while the house is quieter. I guess I should be grateful that it is happening after my mastectomy, after all the big rowdy boys went off to school, after a regular naptime had been re-established for the little ones, and after my head came back from Bizarro World.

Since this call came through, I haven’t been able to think about too much else in the past week–including the cancer stuff and I have truly welcomed the break. It makes me realize that when I am working on something I’m passionate about, I get a lot accomplished————(Why can’t I get truly passionate about my cancer?)———- I’ve been going through all my checklists making sure all my T’s have been crossed and my i’s have been dotted. I have a book that takes me a few hours to get through each time because I am really focusing on doing my best. I have been through it several times and plan on several more read throughs. I spent all last week working on my parent teacher conferences and getting those in order. I was glad to get them all done so I could move on to more paperwork that has been lagging. I screwed up my classes this year, but I am not going to screw up this. I have worked too hard. I want to be able to look back on 2009 and know that despite the huge setback, I was able to accomplish this major accomplishment. Usually centers or schools or colleges are accredited. It isn’t that often that in-home providers become accredited. So, I am working day in and day out right now and everyone in my family has their very own honey-do lists. I’ll get there slowly, but surely and quite honestly, I’m ready–its just the details I’m going back for. Tons of details, but it will all come together.

I’ve also been allowing several college students studying at St. Ambrose Univ. to come tour my environment. This is good practice for me as they are able to give me fresh eyes. They are students studying to be teachers–how I wish I could go back to school–but I am not ready yet. Maybe next year. Maybe this is why I was supposed to ultimately take the break from my college courses this year. To ready myself for accreditation. To make sure my head was still in the game. I can honestly say that I was in a perfect position to give up on everything I had worked for professionally. Just chuck it and spend my days playing with my family. It was a summer where I was re-evaluating everything in my life and trying to figure out if things were still working or if they needed changing in some way or another. When I look at my chosen profession, I can’t imagine doing anything else. I love working with kids. I love where I work. I love the tools I get to work with! Some people provide child care as a means to an end, a temporary job while their own kids are young, but me–it really drives me. I absolutely love what I do and when I had really looked at all the reasons why I do what I do, I realized my head was ready to take on the observer that would come spend the day with me. If I could just shake this illness now…

We celebrated my son’s 6th birthday this past week. Time flies. I asked him what the best present he got was and he looked at me and told me it was me and that he was super happy I wasn’t dead. “Gee, thanks, babe–I love you too” is what I responded with. ­čÖé I’m grateful I got to see him turn 6 and I am glad I’m not dead yet. Lord knows how I’ve worried over that all summer. So, I’m grateful I’m alive. I’ve survived my diagnosis for 7 months now. Almost a year. That’s an accomplishment in and of itself.

I have begun a Wellness class at the YMCA. It is 12 weeks of free personal training–2X/wk. for 1 1/2 hrs. each eve. The best part–its free! I get to work with a personal trainer for free for 12 weeks! I missed the first class because I was sick two weeks ago. I went to both classes last week and thought I was going to die each night. I began working on my WII fit on the off nights, but this cold/flu is really pulling me down. I am so happy for the outlet and MAKING ME a priority. I have met a handful of other breast cancer survivors that are in various stages of their disease or treatment and I just know that will be instrumental in my mental comeback. I think being able to dedicate time to working out will also help me release those endorphins I haven’t seen in a very long time which will help relax me, help me sleep better, make me feel like WANTING to recommit to my nutrition plan again, making me WANT to be more consistent with my med taking, and maybe inthe process, I will lose the 30 pounds I’ve tacked on. UUUGGGHHH! I am bigger than I was when I was pregnant with Jordan (she was the biggest baby)! Could it be the Tamoxifin that is helping me pack on the weight? I know that stress will pack on the weight also and I am surprised I’m not morbidly obese. The added weight make me more sluggish so, I have to lose it.

My other major concern is that I’ve been told that estrogen is stored in fat and since I’m sporting my own personal flotation device around my mid section these days–I need to find something to help me deflate it. I have to lose the weight–I worry every day that the hormone that is feeding my cancer is setting up shop and getting comfy in my fat. Ok–who am I kidding–I also want to lose the weight before my next class reunion next summer–I was so worried what everyone was going to think about my hair–now I just want to walk in and have everyone think, “wow, she looks great for having cancer”. I know. I know. Completely immature and shallow, but who wants to come back after 25 years looking like crap? Yes, I know all the stuff about the inner beauty, outer beauty, lasting beauty stuff, but when it comes right down to it, I really just hope that all my beauties are playing on a level field by then (and I really hope I drop 30 pounds!) :). I’ve run into a few friends from high school, they all happen to be nurses. They have all said I look good–my color is good and since they work with sick people all the time, they can tell when a person is sick. I guess I’ve got that going for me. Problem with that is–I’d rather have hair and a boob–omg–I just did it–I said something very generically–I take that back–let me be specific…

I’d rather have a headful of healthy, blonde, soft, stylishly coiffed hair that I could seductively whip around should I be in the mood for some lovin’, be able to pull it back when I’m feeling playful, and be able to run my fingers through it to tousle it and have that wind blown look that most women dream of. And–I’d rather have two boobs–the same size–preferably a little lifted and energized looking with a natural looking nipple tattooed on the new one. I used to wonder about having bigger boobs and although I wouldn’t mind them a tad larger, I’d now just be happy to look like I did. So a perky 34B would be great. Afterall, it’s not the size–it’s how you package them! I think that’s it–have I forgotten anything? Please feel free to let me know if that wish needs a little more something something. I will be checking out the silicone stockroom tomorrow. Wish me luck!

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A Work In Progress

“Get your shoes on–you need to come with me” I stated matter of factly as I walked in the house. My husband, who was playing the new Tiger Woods WII golf game I gave him for Father’s Day looked up and wondered what was going on. I moved directly toward the cupboard above the kitchen sink where I kept all my meds and as I opened the door, I knew exactly what I was going to need–Vicadin and Ibuprofen–And a lot of it. I figured with what I was about to do, I needed to get a jumpstart on curbing the pain factor.

I have never been a big “taker” of things. I am a lightweight. I admit it. I never liked that feeling of the room spinning, dry heaving from drinking too much, or the next day’s hangover. I hated not being in control–(there we go again). However, after my mastectomy, I found that my pain tolerance was off the charts. I was also in extreme emotional distress and I was very glad for those pills which helped keep me out of it for two weeks straight. I had a few Vicadin pills left over from my mastectomy and decided I was going to take advantage of them on this evening. I popped two of them and 4 Ibuprofen, grabbed my debit card, my camera, my hubby and away we went.

I wasn’t nervous at all as we drove. Jeff asked, “what’s going on?”.

I simply stated, “I’m going to get a tattoo”. He couldn’t believe it. Me. The pain wimp.

“You’re joking, right?” he said.

“Nope”, I replied.

“Where are you putting it?” he came back with.

“On the nape of my neck”, I said.

“Geez, that’s gonna hurt like Hell. I’ve heard that’s a really painful place to put it”, Jeff said.

“I’m not worried about it.” I smiled.

“You’re never gonna go through with it”, he looked at me smirking.

“Watch me”, I retorted.

We drove into the parking lot of the Scorpion’s Den, a local tattoo parlor. Ironically, the building that houses the business actually used to be my husband’s late grandmother’s house. He can remember playing in the house when he was a little boy. He was amazed at the changes and began to talk to the owner about which room used to be used for what. The owner asked him to bring in a picture of the house or the rooms and he was very interested in framing them and hanging them in his business.

While the men were talking, I went over to the scariest looking guy there that night. I struck up a conversation with him and showed him on the computer the image I wanted. As he sized up the image and traced it out on the transfer paper, I took a few minutes to look through some of the artwork. I couldn’t believe I was about to do this. I had always been against tattoos–personally. I am all for freedom of expression and didn’t care what anyone else did, but for me–it wasn’t a statement I wanted to make. I had never felt like “owning” anything like that before, but what that girl said to me in the wig boutique changed my mind. I was also beginning to think that maybe, just maybe, I had grown up a little too much. Its hard for me to explain because anyone that knows me–knows I live in a kid’s wonderland–literally. I play with kids, teach kids, hang with kids, laugh with kids, chase kids, swing with kids, paint with kids, etc. How could I be ‘too’ grown up?

Since I am entrusted with kids each day, I maintain a very high quality childcare in my home–one of the top in Scott County, IA. Since my business is kids, I’m not just asked to play with the kids, I am also obligated to teach them and to guide them in making good choices. I have to be an example to them–a good role model. So, in almost 14 years of providing care and having a ball doing it–had I essentially grown up and forgotten what it was like to really just have fun and let loose–lose control–personally–on a leisurely level? Maybe if I did drink a small glass of wine each evening I wouldn’t be wound so tight. Maybe if I made it a point to spend time laughing with girlfriends instead of pouring myself into my classes I would remember how it feels to loosen up. Maybe if I just went and got a tattoo, I could say to myself that I hadn’t forgotten the rebel inside of me.

There were a few other justifications, as well, for getting the tattoo.

1. It was a symbolic outward representation of the disease I was fighting.

2. It was a daily reminder that I needed to live life fully because we never know what is going to be thrown in our path.

3. It was my acceptance into the club–the one I had been fighting against for months. My VIP stamp of sorts that bound me to other women that had gone before me and would come after me.

4. It was going to be in a place that would be out of sight when my hair grew back so it wouldn’t be a nuisance should I ever be interviewed for something that might affect future endeavors.

5. The place I was going to put it–ahhh–the nape of the neck–during chemo–while I was bald or my hair was very short–it would serve as a sort of spiteful gesture to those that would look at me and question or whisper behind my back why I looked the way I did. Yes, this one is completely childish, but it also gives me the biggest laugh. It was a fact–I was going to lose my hair–something I was fiendishly upset about. The kicker–I would lose it right at the start of this summer’s pool season. I had counted up the days on the calendar. I had circled the day the pool opened. It was always circled each year–my family lives for that day. The thought that I was going to be a uniboob mom this summer was excruciating enough but to think I would also be bald was enough to leave me sobbing for days on end. I pictured in my mind people at the pool looking at me from the front and averting their eyes, or staring disgustingly at me. I pictured them pointing and whispering to their friends to look at me.

I also pictured turning around so they could see a large pink ribbon tattooed to the back of my neck and without having to turn around to see their expressions, I could see their faces melt into sorrow and then they would feel bad for pointing and staring or laughing at me. They would get it. Instant guilt trip. I win. ­čÖé My childish mind had come up with the perfect solution to combat what was about to be my toughest summer on record and I loved the idea!

6. I knew that things were aligned perfectly for me to get the tattoo on that day. In two days, I would be sitting in my new dentist’s chair as he put me under for my root canal and to also fix the 5 cavities. I knew I would go home from that with a lot of antibiotics and so if the tattoo should become infected over the course of 48 hours, I would have enough penicillin to help put that back into submission. I also knew the antibiotics would help everything heal faster and so–if ever there was a time to get a tattoo–today was the day.

7. Most importantly, my chemo was going to start that upcoming Thursday. In 5 days I would be sitting in a chair while poison was being infused throughout my body. I knew my oncologist would not allow me to have a tattoo after I started treatment. My white cells would be shot from the drugs and if I developed an infection from the tattoo, then I would be in big trouble. So, it was now or never.

8. Last, but not least, I had been told that if I would ever consider a reconstruction, the new boob would have the areola tattooed on. That’s how they do it. Wow. I never knew that. I decided I certainly didn’t want my first tattoo to be that of a nipple!

When it was time to go back to my room with Jesse, I gave my hubby the camera and told him to take a ton of pictures. I wanted to remember this rite of passage. I never wanted to forget this moment in my life. I felt like it was a very visual way of me “owning it” and that it was also a way of me being able to move forward. Jesse’s appearance complete with tattoes and body piercings didn’t scare me. I was a bartender for 15 years and I was able to comfortably joke around with him. I think that surprised him from the woman he probably mistook for being conservative and sheltered.

We talked about the ribbon itself. I told him I didn’t want it to look perfect. I didn’t want it to have clean lines or neatly trimmed edges. I wanted it to look “Torn and Tattered”, “Worn and Weary”, and I also wanted it to look like a “Work in Progress”–because that’s exactly how I felt. I told him, “I’m a Work in Progress” also and I hoped someday in the future, when I truly feel in my heart that I have beaten this cancer that I would come back and write the word “Survivor” underneath the ribbon. Jesse looked at me and said, “Awesome”.

He shaved the back of my neck, placed the transfer on it, and gave me a mirror to check it out. I was so excited. He showed me where to sit and he went to work. With my head bent forward over a cushion I joked with him about life while Jeff captured it all on film. I listened to the buzzing of his tool and could feel the oddest sensations–some of which were slightly painful, but tolerable. I could visualize how he was outlining the ribbon and where he was filling it in. I could feel him going over certain areas repeatedly for extra shading. I could feel him trail off the ends of my ribbon to make them look frayed. It was so meditative for me and I won’t lie–I was so glad I took those Vicadin beforehand!

I knew we were getting to the end and I was glad because I was beginning to grit my teeth each time he rounded over the top of the ribbon. I was also making a low, gutteral sound each time the vibrating needle came close to the base of my skull. You know what it feels like if you put a massager on the top of your head? That’s what it felt like in a weird way only with pain involved. The vibrations from his needle would come up the back of my skull and travel all the way across the top. I couldn’t help but think what it must feel like for some people who get their whole skull tattooed–wait–I don’t want to know about that–I was ready to be done. And just like that–we were. I stood up and looked at it in the mirror. I couldn’t believe it. Jeff came and told me, “Good Job” and gave me a quick kiss. I was in awe. I loved it. I absolutely loved it. It was a part of me now. There was no escaping it. I was branded for life.

A Work In Progress

A Work In Progress

There are new pics over in Flickr Photos. I spent way too long trying to get them in chronological order–it just wouldn’t work. They are going from last to first?? Click on more pictures and you’ll see the album sitting to the right–that is in order. I am letting go of it so I can move forward. Enjoy.

Started Tracking on 12-1-09

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