It's Been Three Months Since My Diagnosis

Time has gone both quickly and slowly. Three months seems both like a long time and like a very short time. I'm definitely experiencing a new normal. Cancer changed me physically. I have four new scars that I see every time I look in the mirror. I have a big dent from the lumpectomy. I am still numb in my arm pit and the back of my arm which I am still finding very annoying. I have a bump where the port is and a scar at the top of my neck that is visible with about everything I wear. Cancer has changed me financially. I would be doing pretty well right now but the bills have piled up so quickly that I am not sure every one will be paid on time. It's going to make the next couple of years a struggle anyway. Cancer has changed me emotionally and mentally. While I am emotionally exhausted from the struggle I feel like I am getting mentally stronger every day. It's made it much easier for me to see what is important in my life and I've been better able to appreciate the things in my life that are important to me and make me a better person. And I've been strong enough to make the choices needed to remove things from my life that don't deserve to be here and were not helping me be the person I can be. Cancer has brought me closer to my family and friends and has helped me see what phenomenal people there are that surround me, care for me, and love me. I am truly blessed and I hope I can some day I can return the sentiments. Cancer has also made my universe very narrow. I work and I come home. I feel like the world is turning out there without me but I know right now I have to focus on myself and all the things I want to experience and participate in will just have to wait a few months. I'll be back before too long.

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It's been a hard day. I am emotionally and physically tired. I don't think I did a very good job recuperating between session two and three or maybe being run down is just the nature of the beast as you continue on in the treatment. The pain and mental fogginess seem to be hitting sooner this time. I'm hoping a good night's sleep will help. It's made me melancholy this evening.

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And my beautiful favorite niece of my heart - I don't blame you for not wanting hair like mine. This time I want hair like yours! I think you should have your Mom seal you up in a box and mail you out here. HeeHeeHee!

Choices

Being diagnosed with cancer brings all sorts of choices into your life.

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The first choices are what to do for "treatment". I guess one choice would be to do nothing. Or another would be to avoid mainstream doctors and do non-traditional treatments. Or do both conventional and holistic treatments. One thing you learn fast as you try to choose what to do is that there are very few "if then" statements in cancer "treatment". It would be great if a doctor could say "if you do this then you will be OK" instead you get a lot of "if maybe then" statements "if you do chemo, maybe then you will be OK". I've been reading a couple of the breast cancer message boards since I was diagnosed and women really agonize over their treatment choices. Once you hear the words "it's cancerous" your choices are many and all of them suck.

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Once you decide to go with mainstream treatments, your first choice is what type of surgery you want, lumpectomy or mastectomy. With a lumpectomy comes radiation also. My doctor told me that my survival rate with both is about the same. I'm not a big fan of hospitals or doctors or pain so I naturally leaned towards the lumpectomy choice. It is less invasive with no extra reconstruction surgeries needed. I also was pretty sure it would be cheaper which when your life is on the line seems like a stupid reason to not do something but I'm guessing money plays a big role in a large percent of treatment decisions in the US. Christina Applegate on the other hand chose to have a double mastectomy based on her family history and results of DNA tests she took. I'm sure many other things went into her decision also that she hasn't shared with the general public. Now did either of us make the right choice for ourselves? We will never know. Even if we have a recurrence or if we don't have a recurrence, who is to say it would or wouldn't have happened anyway.

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Now if the cancer is caught early, there is no sign of it having spread, and test results come back favorably then the surgery / radiation choice might be about it for treatment decisions. Then there are all sorts of post cancer lifestyle decisions to make but that's a whole other topic. Hopefully I'll get to that point and we can all have a discussion about my aversion to veggies.

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But for me and for many like me, we are given the choice of undergoing chemo. While in the end this wasn't a hard choice for me, it was an agonizing choice. The list of possible side effects to chemo is really really long and has nothing good on it. In fact when you start chemo they have you sign a release that has the line "I understand that it is not possible to anticipate all side effects." It then goes on to a list of the worst side effects it can cause up to and including death. It also says "I understand that no guarantee or assurance has been made as to the results of chemotherapy and that it may not cure, control or improve this condition". So, not only can the treatment kill me, it might not even help me with the cancer thing at all. What kind of choice is that? Angel Nurse Nancy told me before the first meeting with my oncologist that he would be giving me a rate of survival percentage if I do chemo. She said that I needed to decide at what percent I would or would not do the treatment. Well, when you haven't had chemo before and have only heard about how hard it is plus knowing it might not help at all, it's hard to make that decision. I tried to decide at what percent I would not do chemo. 20%, 15%, 10%, 1%, .1%? It's your life you are deciding upon. Well, I love my life (but really so does everyone else so I'm not saying if you chose not to do chemo that you don't love your life but that's how I saw it for my decision) and I having not been in chemo before I couldn't imagine it would be worse than dying so I made the personal choice that unless he said chemo would not help me at all I was going to do it. Well, my percent came out at around 10%. If I was to undergo chemo treatments my odds of having the cancer return would be cut by 10%. That number seemed huge to me - of course I would take 12 weeks of chemo over increasing my chances of a recurrence by 10%. But that was me. For the pain, cost, time, and all the other bad things with it 10% might seem like a small percent to others in my position. Now that I am half (!!!) way through chemo would I make the same choice? You Betcha!! Six weeks from now or if the cancer does come back, will I still say that? I don't know. I've read about many many women who have had a higher percent than that and not do chemo and I've read about many many women who have had lower percents and did do chemo. Once again will any of us ever know if we made the right decision? Nope.

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Is any decision that we truly believe is right for us the right one? Yep, I believe that is true. I though have been (I hate to use the word lucky or blessed when it comes to my cancer so I just say) I have had it better than some women in that my decisions have been pretty clear cut to me so I haven't spent much time second guessing my choices and if I stay healthy I won't ever have to but so many cancer patients out there have many more gray areas in the treatment choices. I would think it would be very hard to not sometimes think "maybe I should have...........". Once again when it's a choice that has to potential to be life or death - yikes - no one wants to be in that position.

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One "if then" statement I have heard from a doctor is "if you get chemotherapy, then you will lose your hair". Yep - as you can see by the picture I've lost my hair. Another choice that is discussed on the message boards is how to deal with this. It seems like wearing wigs or scarves has been the first choice of many. I've seen many women - especially the younger ones - go with my choice though, just going around bald. I just hate having things on my head but I hate looking like this. In the end I went for comfort instead of vanity. Most of the time when I am out around strangers I have worn a scarf or hat but today I just went to town au naturel. Heck it's Breast Cancer Awareness Month and what says breast cancer better then a pink ribbon? Yep - a bald "cancer girl" walking around. I'll scare women into doing self exams or getting a mammogram. Pink ribbons make breast cancer seem pretty and feminine - I've learned it is more like putrid green, pain, and swelling. So, I'm just a walking public service announcement for early detection. Side note and another possible blog topic - why is there so much focus on early detection and a cure but hardly even talk of prevention?

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There is one choice I have to make daily though - it's a hard one and it's a very important one that effects my entire life. When I first wake up cancer is not the first thing I think of - I usually have a few seconds of being my old "normal" self. When I do remember it still takes my breath away and not in a good way. I think if I was standing up when I remember, it would take me to my knees. It's that unnatural and disturbing to me, it still deosn't seem real. Right then when it hits I have to make the daily choice. How am I going to handle having cancer today? I could crawl up in bed and not leave it and be all "woe is me". I could be angry / anguished and all "why me?" and take it out on all those around me. I could try to ignore it and shut down, not letting anyone in or showing any emotion. I could be full of dispair and think that I am going to die from cancer. Or I could chose to live life as fully as I can within the physical restraints I have right now; laughing as much as I can, not letting the little things get to me, enjoying the people around me, being thankful for the support I am getting, smiling at my bald self when I catch a glimpse in a mirror, loving my dog, enjoying the sound of the wind through the trees, chasing the ravens out of my yard, having some steaky goodness, reading good books, and just trying really hard to find the positive in the situation I find myself in. OK - so it's not really that hard of a decision for me but I can see how others in a similar physical situation but in a different life situation would choose one of the other choices. Who knows as I get further into my new life with cancer I might pick another view on my day / life and that would be OK but I hope I don't.

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We all make the choices that we think are right for us and we hope we get the chance to live with them.

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PS - one more item for my "Thank You For" list. Thank you for making fun of my baldness (Charliiieeee). I appreciate everyone who says I look good bald. I know though that you are just trying to be nice. Which is nice but I know better and it was great to have someone finally tease me about it. It's the little things...........

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PS again - I just got fabulous news! I hear there's going to be a new baby in the family! WooHoo. I am so so so happy for you two! Now my hair will have to grown back. It's bad enough I scare stranger's kids with my Uncle Fester look, I can't be scaring my cousin's child. Yet another way that Life is Great!

Tired, Sore, and Cranky

Seems like nothing went right today. We are even more short staffed at work after losing another employee today, I'm still sore from surgery (shouldn't I feel fine by now), everything I tried to do at work I screwed up the first time around, hospital bills are starting to show up (I'm paying them for what exactly!!?? shouldn't I at least get an "I spent thousands of dollars at this hospital and all I got was cured and this lousy T-Shirt" T-Shirt?), my home is busting at the seams because it is chock full of breast cancer pamphlets (I am so going to have a great big bonfire when this is all over), I should have called today to make an appointment to have a port put in before I start chemo (but I didn't want to call today - so there), I've looked and looked but I can't find a funny quote to start this post with (except "cancer sucks" but tonight I don't find that funny), I really really want a diet coke, I'm scared, I've killed all my plants, I can't find half the things I am looking for, I don't feel like I have any control over anything, I miss my friends, I've started five different books and don't like any of them, there is nothing on TV tonight except The Mole and it doesn't start for hours, it was cloudy all day but hardly rained at all, I'm having trouble sleeping, I can see a picture hanging crooked across the room but I'm too tired to go fix it, commercials are stupid, and I was wrong to wait before starting chemo. I could have started this week and would have one session done with and now the waiting is going to kill me.

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OK - take a deep breath. Tomorrow will be better. It is kind of funny reading through the list how maudlin and silly I sound. Geesh - if those are the only complaints for the day that I can come up with then I have a pretty darn good life! Tomorrow I'll list all the reasons life is good!

One Week Later

I know I know - all this whining and drama and that's all I have to show for it. Hey - I haven't had any Diet Coke since the diagnosis, I have all sorts of reasons to be whiny!

Let's Get Caught Up Quickly!

OK then - I had no idea how to find a surgeon in Flagstaff. I made some calls though and low and behold the decision was made for me. There is only one surgeon in Flag who is contracted with my insurance company. He was my guy! I met with him that Thursday. No idea what all was said but we scheduled a lumpectomy on the next Monday - July 14th. I did get to meet my Angel Nancy that day. One of the first calls I made was to the Cancer Center there in Flag. I left a message saying I had just been diagnosed with breast cancer and I had no idea where to go from there. Angel Nancy called me back that day and has held my hand through this ever since. She stayed with me during that initial meeting with the surgeon, has given me all sorts of great literature, and checks in with me every few days answering questions and making sure I'm feeling OK. No idea what I would do without her. She was diagnosed herself 10 years ago.

Surgery went well. My parents got here on the 10th and stayed until the 19th. Surgery day started early with blood work and surgery prep. Then it was a trip in my very own bed on wheels to something called Nuclear Medicine. Those of us now in the biz call it "Nuke Med". I was there so they could map my Sentinel Node which is the node the lymph ducts drain into and they test this node to see if there is any sign of cancer cells. They do a preliminary test while you are still on the table if they see cancer cells they take out more nodes and if cells are not found they are pretty sure that the cancer has not spread though the lymphatic system. Which in my naivety I thought it meant the cancer hadn't spread - Angel Nancy has since pointed out that cancer can spread in other ways - darn that sneaky cancer!! So, to find the Sentinel Node they shoot you up with a blue radioactive dye and then they put you under some sort of claustrophobic inducing scanner. You know the "don't move for the next 20 minutes" type of scanner. I counted 400 slow breaths and it ended up being not that bad. The shot of blue dye hurt like crazy though - luckily the assistant told me before hand that there would only be one shot. So, I sucked it up while he injected me and then gave her a look of terror when he said that he was giving me another shot. She apologized after he left saying she had never seen him give two shots. No idea what was up with that! Another interesting note - the radiologist with the big needle of blue mentioned that he had seen my name on the agenda of their cancer convention the next day. He said I was a main topic of conversation. So, an hour or so later and the Sentinel Node is found - call my sherpa and wheel me back to pre-op.

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There were Mom and Dad waiting for me - my stuff was even still there - no one had absconded with anything! I had a few hours to wait and all sorts of blue dye to get out of my body so a couple of trips to the bathroom with my little IV buddy, fashionable hospital gown with all the ties gone, and my lucky sunflower socks - I got to where my lucky sunflower socks during surgery!! I ended up earlier on the operation schedule than we planned so next thing I know I'm being wheeled away. Mom and Dad sure looked sad so I think I had the easy part! Surgery sure went fast from my point of view - I think I ended up being under the knife for a little over an hour. No idea how long I was in post-op but next thing I know I'm being told to get dressed and get out - woohoo! I never did get to talk to the surgeon again that day but Mom and Dad did and he said it went well. So, loaded up on Oxycodone and on our way home. Long ride home - every time I started to fall asleep I got nauseous. Took the next day off and slept it all off and back to work on Wednesday. Pretty sore - two incisions, one on top of my chest and one under my arm. On day two I decided to look and see what was going on - the doctor said he couldn't tell me until he got in there how things would look cosmetically afterwards so I was a bit nervous. I pulled up some of the bandages and remember the blue radioactive dye? Yeah - I was still blue. I couldn't tell a thing but it did crack me up! Ended up looking pretty normal but can't believe my cool biopsy scar has been incorporated into the lumpectomy scar.

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We met with the surgeon again that Friday. I was feeling good, had accepted that one way or the other I could survive 6 weeks of radiation, and was actually stupid enough to think "this breast cancer thing is way overrated, this is cake". He said all sorts of good news - no cells were found in the Sentinel Nodes, they got all of the cancer with good margins (healthy cells) around it, it was 100% estrogen positive (can means recurrence/growth can lessened with medication). Then he said that it was fairly large 2.9cms (over an inch) and that he was pretty sure I would need 6 months of chemotherapy. Talk about having the rug pulled out from under me. You would think after my previous two weeks I would know/expect/suspect/be in any way ready for - bad news. Nope - denial runs pretty thickly through my blood. Never saw it coming. Chemo?!! Six months?!! He pointed out that with all the other good news and with my age that we weren't talking about slowing the cancer down, we were talking about totally curing me with no recurrence. He said that if it was him he would not even blink at having chemo treatments.

Have you ever looked up chemo side affects? It runs into pages and pages. I won't even get into it now. Angel Nancy has since pointed out that until my ocnotype test results come back I am kind of in a grey area for chemo so it's not a given yet. The ocnotype test tells how fast my cancer cells grow. Chemo kills off fast growing cells so if mine are slow growers chemo won't help much at all. But one funny note on side affects - on one of the cancer sites I was reading about hair loss and their suggestions of dealing with it. Consider wearing more makeup and jewelry to draw attention away from your baldness. Yeah - I think that will work!

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OK - so there is where we are today. It's been two weeks since surgery and I am still sore but better everyday. Tomorrow I have my first appointments with my two oncologists. Yep - a month ago and I couldn't really tell you what an oncologist was and now I not only have one, I have two! A radiology oncologist and a medical oncologist. I don't think all of my test are back yet but I might have a better idea tomorrow of what the game plan is. Here's to no chemo!!