Sometimes You Have to Let It All Out

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!*

*Story to follow tomorrow. I AM okay.

The Eye of the Hurricane

Chemo is a lot like a hurricane. A hurricane takes a toll on everyone in its path. You prepare as much as you possibly can beforehand. You board up windows and doors as a barrier between you and the storm. You stock up on food and water to keep your health up during the storm and the aftermath. You stock up on batteries, candles, and flashlights so you can see your way through the darkness during the inevitable power outage. Have you prepared enough? Are you ready to ride this storm out? Worries and fears set in mixed with readiness and preparation; now, it is just a waiting game.

The hurricane hits and it is too late to change your mind. Should you have run? Should you have hidden? It is too late because you cannot leave now. For better or worse, you are in this. The wind and rain pound your barriers over and over and over again. Sometimes a window breaks and the wind and rain find the weak spot and attack. You try to patch it up and block it with another barrier. Sometimes it works, but sometimes the wind is too strong. So, you have retreat to another room with the barriers still in tact. If you are lucky, you stay safe and ride it out calmly. If you are not one of the lucky ones, you may have a tree break and fall on your shelter. Then, there is a big hole in your barrier. You just never know if you are going to be one of the safe ones or one of the ones who has to fight through the hurricane. 

Finally, the eye of the storm is upon you. A break in the storm. You step outside, dig deep, and find what you need around your house to fix and patch the holes. There is a calmness that sets in and it feels good. You have changed your strategy and strengthened your barrier and you are hopeful that you will survive. There is even a bit of sunshine to make you feel warm. You can exhale and breathe normal again for a moment. You are feeling rejuvenated and stronger. This is what you needed because your barrier was cracking and you were ready to give up. But, the peace and quiet from the eye only lasts a little while. Soon, the clouds start to spin again overhead, the wind picks up a little, and you realize that the second part of the storm is coming fast. It is time to go back inside, hunker down, and wait out the rest of the storm.

The second half of the hurricane is deceitful and tricky. It seems a bit calmer than the first half. It is less windy and you find yourself getting a little complacent. Maybe this is not so bad. But, for the unfortunate ones, it turns out to be silent, but deadly . During some hurricanes, the tide is high and the flood waters start to creep into your neighborhood. As the water rises, you have to change your plans or you will drown. You feel overwhelmed and scared, but you know you have to fight. You are one of the unlucky ones who has to fight for your survival with everything you have in your stockpile. You fight to keep the flood waters from breaking your barriers. The water keeps coming, but you fight to get to higher ground. You fight to survive. You fight to live. 

At last, the hurricane is over. The wind and rain are finally gone. The flood waters have receded. The animals are back; the birds are chirping. The sun shines like it never has before. You go outside, hold your arms out wide, and spin, just enjoying the moment. You assess the damage and see what is left. It is time to clean up the damage, pick up the pieces, and rebuild. There is a lot of hard work ahead of you, but that is okay. Why? Because, you made it. You survived. You lived. You are a survivor. You are alive and healthy. You beat the hurricane....and it feels great.

So, how does this relate to cancer and my chemo treatment? You just have to read my other blog entries to see that I have already survived the first part of the hurricane and did as much preparation as I could. Where am I now? Currently, I am in the eye of the storm. But, the clouds are coming back quickly and the winds are picking up. I'm not sure how the second half of the storm is going to affect me. I believe it will happen just like my little story above. I will have to fight hard, but I will get through it. And, I will spin with my arms open wide like nobody's business when this is over. But, like I said, for now I am in the eye of the hurricane.

The Eye of the Storm.

I was supposed to have chemo #3 on Friday, August 23rd. But, that did not happen. I was too sick with my bronchitis and the doctor ordered more fluids, antibiotics, steroids, and anti-nausea meds. As you might expect, he was pretty upset that he had not been informed of my condition. I had called repeatedly and was even in the building for blood work and no one did anything to help. No one returned my calls even though I left messages stating that my doctor wanted to be informed of any more sickness on my end. The day I went in for blood work, a nurse practitioner came out and told me there was nothing they could do and if I wasn't better, I needed to follow up with my general physician. So, my very angry oncologist (I'm sure the nurses got an ear full) gave me my fluids, etc., sent me home with directions to call him directly (on his personal cell) if I get worse, and postponed my chemo for two weeks.

These two weeks have seen me getting better slowly. I slowly got an appetite back, got my taste buds back, and stopped getting nauseous. My hair has even started to grow back during this break from chemo. I have more energy, less pain, and, I dare say, I almost feel well. But, here is the problem...this is just a tease. I feel better just in time (three days before) to begin chemo again. And, instead of being half way through, I am still only a third of the way through with the 'nasty' chemo. This has been a nice calm and my body definitely needed it. I am not sure that my mind needed it, though. There are positives and negatives about this lull. I was feeling pretty down and this gave me time to rebuild my inner strength. But, now I am worried about the fact that I still have over half of my treatment left and concerned about how horrible it is going to be if the first third was this bad. I don't know. 

All I do know is that I am as ready as I am going to be for the rest of this battle. We have changed tactics and plans and prepared differently for the next session. My oncologist is scheduling me to get fluids, anti-nausea meds, and steroids twice a week the first week after chemo. Hopefully, this will keep my nausea down to a minimum and allow me to actually function and not get so sick. I feel rested and stronger and ready to fight. This would not have happened without my bronchitis and this break. So, I go for Chemo #3 on Friday, September 6th. And, I am as ready as I can be for this second half. I am ready to fight, to head to higher ground, to survive. I am ready to live.

Chemo! Need I say more?

Yes, it's been awhile since I've updated everyone. Yes, I've been avoiding it. Yes, there's been ups. Yes, there's been downs. Yes, a lot of the time I just couldn't get on the computer (thank goodness school started). Yes, I've been too sick to post at times. Yes, I'm alive and surviving chemo. But, the question I can't answer and the main reason I've avoided this is...do I make this next post, this first chemo post, a positive one or a negative one? Do I let you into my thoughts or just tell you the facts? Really, it's not a negative vs positive, I suppose. It's more of a play by play factual post or let you deep in my thoughts post. I still don't know as I'm typing this. Much as I do when I'm painting, I'm going to just start and see where I end up. Maybe that's the best way to do this. ***deep breath***

I started chemo on July 12th. I go in for my third session tomorrow and I'm terrified. I'm not sure I've ever been as scared of anything before in my life. Seriously, I don't want to go. If I could skip it, like one can skip school, I'd bail. Can I call in sick? For the next year? I don't think I've ever had to go through anything so hard or painful in my life. I mean, I guess I'll survive. I always do, right? I'm the survivor, right? ***deep breath***

So, chemo #1. David and I walk into the cancer center feeling a little lost and unsure. They direct us this way and that way as we begin the preparation. First, we get blood work done and get the port prepped for chemo. Ouch! Then, we head to the chemo waiting area. This takes forever. I didn't realize I had to wait so long to get the actual chemo. The chemo upload is actually not a big deal. I sit in the chair with a pillow and blanket as the nurse changes each bag of medication out as they empty. David plays on the computer. We both play Candy Crush (I'm known as the expert there and the employees bring me their phones to help them beat levels.) I make David get me food which aggravates him every time. A few hours later (6 hours the first time) we finish and go home. Wow, first chemo down and I feel fine.

I continue feeling fine the first few days and I'm excited because I had plans to visit my sister and now I can visit her. I head to her house feeling pretty good; a little nauseous, but feeling good. The first thing to really change is my tastebuds. Absolutely nothing tastes good. This was expected, but so different to really experience it. That's really the truth with it all. Everything, all of the side effects, are expected, but there's no preparing you. It's an entirely different thing to go through it and actually live it. My sister tries her best to take care of me as I fade quicker and quicker. I'm beginning to think I made a mistake coming here. I just want to be home. I head home after days of lounging around miserable with an upset stomach (nausea and diarrhea). As I'm driving my vision goes blurry. What the hell? Later, I go see my eye doctor and he tells me it's normal for chemo and it may go back to normal after I finish the treatments. My oncologist says it may be permanent and I may need glasses after chemo is finished. Oh, joy.

As the weeks go by, I go from okay to worse. Nausea, upset stomach, body aches, etc. Unsurprisingly, my first blood work shows that my white cell count is extremely low. Now, I get to stay home under lock and key. Oh, fun. We wash every fruit, vegetable, hand, body that is coming near me. I'm stuck at home, but I'm surviving. I begin my hair loss countdown. Yes, Montana thinks I'm crazy. "You can't predict when you are going to lose your hair, Mom." I tell her that I've read that it generally happens between Day 10 and Day 14. So, I start my hair loss watch on Day 10. My hair starts coming out in clumps on Day 14. I was right and Montana was wrong. It was itching and burning and coming out in clumps. So, I do what I do best. I take control and shave my head.

Chemo #2 is upon me now. As the days creep up, I find myself scared. I really don't want to feel sick again. But I can get through this, right? The chemo day, itself, isn't too bad. They have trouble accessing my port and have to get a bigger needle. The doctor adds more nausea meds to the process. We hear my name as the nurse and the medicine guy discuss how much of the meds and how long it should take for them to enter my body. She pours them in pretty quickly, which upsets David tremendously. I mean, one would assume the doctor said one hour for a reason, but she believes that it should be given in the 'usual' thirty minute regimen. Ah, lady...there's nothing 'usual' about me. ***deep breath***

This is where it gets tough. The truth? I haven't had one 'feel good' day in the entire three weeks since Chemo #2. Within 24 hours I'm feeling nauseous and the tastebuds are gone. By Tuesday evening (4 days out) I'm so nauseous I want to die and that is with the six anti-nausea meds the doctor prescribes. Diarrhea and constipation at the same time. Who knew that's possible? Okay, maybe not at the same exact time, but from one extreme to the next within an hour of each other. I hit every side effect that's common as well as every side effect that is rare. Chills and fever? Check. Body pain? Check. Weakness? Check. Nausea? Check, check, check. Hair loss? Check. Taste changes? Check. Low white cell count? Check. Fluid Retention? Check. Diarrhea? Mouth Sores? Check, check. Fatigue? Check. Now for the rare ones (10%ers like me). Abdominal pain? Check. Constipation? Check? Peripheral neuropathy? Big check. Muscle/bone/joint pain? Check. Headache? Check. Back pain? Check. Infection? Check. Flu-like symptoms? Check. Cough? Shortness of breath? Rhinitis? Check, check, check. Insomnia? Dizziness? Check and check. You get the point. ***deep breath***

Thursday night (Day 6) I find myself getting chills and running a fever. David is so worried that he tries to warm me up by loading me down with blankets and getting under the covers with me to use his body heat. I call the doctor the next morning and go in immediately for more blood work. The white cell count is low, but not so low that he wants to put me in the hospital. He does send me to the infusion room to get fluids, nausea meds, and antibiotics. After that, I feel a little better (not well) for a couple of days. Then, by Monday I'm sliding downhill again. I head to my family doctor on Wednesday to get checked out. She says I have a bad cold and adds a few days to my antibiotics. She also gives me a steroid shot, antibiotic shot, and B-12 shot. Oh, exciting. I have one day of feeling a little better before the coughing starts. On Friday (Day 14), I go in for more blood work to check my counts. My white cell count is back in the norm, but the lab technician is worried about me being sick. The nurse practitioner tells me that there isn't much she can do and to go home and see how the weekend goes. Of course, it doesn't go well. I head back to my family doctor on Monday after coughing up neon green phlegm, etc. She is worried that I have pneumonia. Fortunately, it is just bronchitis. Yes, when it comes to me, we are happy when it's 'just' bronchitis. I get bronchitis every August like clockwork. So, more antibiotics and another antibiotic shot later, I'm still not well. ***deep breath***

Chemo #3 is tomorrow. And, like I said, I'm scared. I haven't gotten well from the last one yet. I thought I got a week of feeling better. Where is it? Is it under the bed? Is it under the car? Where is it? I guess this is where I share a little. I'm really terrified. I don't remember ever being so scared before in my life. If I didn't have so many loved ones, especially my kids and husband, I wouldn't do it. I'd back out and take my chances. I'm not sure, for the first time in my life, if I'm strong enough. Maybe I'm a baby. Maybe I have it that much worse because of my other health issues. I don't know. It really doesn't matter. All that matters is that I find a way. So, yesterday I decided to stick it to cancer. It was a small, tiny battle, but it felt good. And, yes, I'm paying for it today; but, it was so worth it. I snuck off to the movies. I didn't let my husband and daughter know because I knew they'd stop me. I'm sure the theater was filled with germs, bacteria, and who knows what else. But, I didn't care. All I cared about is that the movie I've been waiting to see for two years got released yesterday and I was going to see it. Cancer has taken a lot from me these past four months and I wasn't letting it take this. So, I headed to the movies two days before my next chemo puts me out of commission again. Sad to say, I felt like this is the best I'm going to feel through the rest of this process (bronchitis and all); and, I damn sure was NOT going to miss this movie because of cancer.

So, maybe I still have a little fight left in me.  Maybe that movie was what I needed. I'll keep fighting. I don't have a choice. Too many people I love are counting on me. But, I won't lie and say I'm not scared anymore. What I will say is that Chemo Sucks!!!!!!

The Surgery That Just Keeps Going

As I sit here healing and waiting, I realize that I've only mentioned my mastectomy in passing. I have a habit of downplaying the actual cancer treatments, tests, appointments in lieu of talking about my emotions, children, and day to day activities. I think this is because I really don't want cancer to rule my life. My life is about so much more than the constant appointments, medication changes, diagnoses, etc. However, I'm feeling the need to write down everything today so I can remember things clearly, and so I can share my experiences with everyone. I mean, this surgery has gone from a blip on the radar to a full-fledged submarine, attacking from the depths beneath me. It IS the surgery that just keeps going...

On Thursday, May 23, 2013, I headed to the hospital with my husband to have my Bilateral Mastectomy. As we walk down the hall toward the surgical waiting room we pass a woman crying hysterically in the hall while a doctor consoles her. Not a great image to have burned into your brain before going into surgery. Although David and I don't say a word or look at each other, we're both thinking the same thing...did this woman lose someone during surgery? Okay, let's focus on something else, anything else. I head back to the pre-op area and get myself prepped for surgery. Before surgery I head to the Neonuclear department to prepare for my Sentinel Lymph Node Biopsy. They inject a blue, radioactive substance into my breast, surrounding my nipple. This may be the strangest procedure/experience yet. Awkward! They wheel me back to my pre-op room and I spend the next hour or so being extremely bored and hungry with David. Finally, it's my turn. They inject me with the magical 'time to go to sleep' anesthesia and roll me away.

The procedure, itself, takes approximately five hours. I'm glad I'm not the one waiting. David eats, plays on his phone, worries, etc. He gets a bit of a scare when he gets paged around twenty minutes into the procedure. They tell him that they just wanted him to know that they've begun. Really? You had to scare me like that just to tell me you've started? Like I said, glad it wasn't me waiting. If the procedure was bad, the recovery was worse. I don't wake up from anesthesia well. I've learned it's because of my Sjogren's and there's just not much I can do. It takes longer for me to wake up. The first thing that I'm aware of when I awake is that I'm sick to my stomach. Nausea takes on a whole new meaning. They give me a patch before surgery to help and they give me dose after dose of Phenergan when I wake up. This need to throw up (I never actually do throw up...that'd be too easy) battles with my need to quench my thirst (another lovely Sjogren's side effect) for hours. I suck on one tiny ice cube to soothe the pain in my mouth and throat only to throw my stomach into fits of pain. Recovery takes four very long hours. Because I'm in recovery after visiting hours, David has to wait in the waiting room, only getting to see me for ten minutes every hour. It's a rough, stressful four hours for him.

Finally, they move me to a room. It's 8:30 pm by the time I'm settled, awake, and not nauseous. I talk to a few people on the phone, including my sister. I just want to see my kids, please bring me my kids. Montana, already en route, shows up first. We visit for a little while before she heads back out so I can rest and try to eat. I drink some chicken broth and lots of juice. David catches me up on the surgery and recovery. He tells me that the tumor has doubled in size. It's now 3 cm, but the doctor successfully removed the tumor with the breasts. Finally, my sister comes into the room. Wait. Where are the boys? It's after visiting hours so the security guard won't let the kids up to see me. David is with them now. What? That's sooo NOT happening. I need to see my boys and they need to see me so they can know that their mom is okay. My sister can see that I'm upset about this and finds a nurse. The nurse saves the day and lets the security guard know that it's okay for the kids to come up. We visit for a few blurry minutes...yes, I'm still heavily medicated and everything happens in flashes. The boys are quiet, but you can see that they are happy to see me. My three-year-old nephew sits beside me, lightening the mood. He gets a hold of my phone and takes pictures that I found a couple of weeks later (I think he has a future in photography). Thanks to him, I have a record of my surgery.

On May 29th, my sister brings me to my first post-op appointment. Dr. Boehm tells me that the tumor did, indeed, double to 3cm. Therefore, my new diagnosis is Stage 2A Breast Cancer. He can't actually tell me if it grew in size in this last month since my initial diagnosis or if all of the imaging tests were wrong. Yeah, right...ALL of the tests were possibly wrong? Clearly, it grew and he just doesn't want me to worry. My sentinel biopsy showed that my lymph nodes are clear...no cancer detected. My HER2 is definitely positive and I definitely need chemo. The drains have to stay in until they get under 40ml for a 24 hour period. Everything looks great, let me take some staples out, etc. See you next week. And so begins my continuous post-op appointment life. June 3rd...drains stay in, more staples removed, see you next appointment. June 10th...drains stay in, more staples removed, see you next appointment.

Actually, June 10th sees the creation of a new beast. After I get home, one of my drains loses suction. Hmmm, I don't think that's supposed to happen. I call the doctor and he has me come back in to see him. He believes he took out one too many staples because there is an open part of my incision. He stitches it shut and watches the drain to make sure it has suction. See you next week...if only it were that simple. On the late afternoon of June 11th, I find myself with no suction in the drains again. I call the nurse and she sets me up for an appointment the next day. June 12th...open incision, more stitches.

On June 17th, my drains are removed, and the rest of the staples are removed as well. Yes, yes, yes. Now I can enjoy the rest of the days of my dad and uncle's visit. There's still an open incision, but my surgeon believes it will heal with some antibiotics and time. It should be healed in time for my chemo. Let's cross our fingers because that hole looks big to me. The drains are removed early, but I can't have chemo with the drains in so my doctor believes it's better to remove them. Ding dong the drains are gone. I leave excited and ready to do a dance. I bring my dad and uncle to a boardwalk and local park in search of alligators and enjoy the rest of their visit. The more I do, the more I worry about that open incision. It doesn't look like it's healing and I decide I better sit and rest until it heals. Stupid hole holding me back.

Finally, June 21st, Chemo Day is here. This is my second attempt at beginning chemo and I'm ready to get the show on the road. The first appointment, scheduled on June 7th, was postponed because of my surgery postponement. This is fully understandable because I needed four weeks to heal from my mastectomy. I've had my echo cardiogram baseline done (right after surgery...not fun) and am ready to start the treatment. Not so fast....that open incision is causing problems again. No chemo for you. Ugh! Seriously, I knew chemo was going to get postponed because of the gaping hole in my incision. My oncologist looks pretty shocked at the size of the hole and calls my surgeon. He thinks it should be packed and my surgeon thinks it needs to be left open to heal. Hmmm, this is fun. I really hate this hole.
So, he postpones my chemo for two weeks. He wants to give the wound time to close up and heal. If it's not healed, he's going to try something he's never done before. He'll start the Herceptin part of the treatment before he begins the actual chemo part. He really doesn't want to wait to attack the her2 in my body, so he'll try something new just for me. What? Experimenting with a new treatment just for me? Of course we'll have to do something new just for me. Did I expect anything less?

On June 24th, I head to another post-op appointment. I'm so tired of these. My surgeon checks out my nice hole and a couple of other troublesome spots on my incision. As soon as he looks at the open incision, I can see the worry in his eyes. Yep, that's my large hole. It's not going away. He thought it was closed more when he looked at it last week. He believes the incision has grown and is worried. Clearly, it's not healing. He suggests surgery to close the hole and repair the other spots. He wants to do the surgery the following day. Hmmm, that soon? Another surgery for me...oh, joy! I leave the office, call my husband, sister, and everyone else and start making plans for surgery. Who's going to take me? Who's going to take Tristen to his appointment? Who's going to keep an eye on Logan and make sure he's fed? Just another day in the life of Steenie.

On June 25th, David and I head to the hospital for surgery again. Pre-op waiting again. Nausea patch behind my ear, again. Surgery, again. Post-op problems, again. Actually, this post-op experience was a new one for me. Gone is the nausea. Gone is the dry mouth and throat. Instead, I'm faced with an entirely new post-op hell. I wake up as I'm leaving the operating room. I awake to my teeth chattering and my body shaking as they push me through the hall. I'm freezing. As I'm in and out of consciousness, I'm aware of the nurses running around and talking with a sense of urgency. I'm freezing. They throw blanket after blanket on me to warm me up. I'm freezing. They put this cover over me and tape it to the mattress and wrap my head with blankets. I'm in a cocoon and I'm freezing. This is getting weird. Then, they start blowing hot air into the cocoon as I drift back to sleep. I wake up many times and try to convey to the nurse that I'm still cold. I'm freezing and there's an oxygen mask on me. What's going on with me? As I continue to drift in and out I hear phrases, like "...really cold in the operating room...", "...hypertension...", and "not breathing on her own...". When I'm awake and warm, they move me to post-op and I share this with David. He thinks I'm crazy. I ask the nurse and she says the anaesthesiologist wrote high blood pressure as one of my known problems and she doesn't know why they wrote it if I don't have high blood pressure. She thinks I'm crazy. This is all so weird. (No, I never get the answers to this mystery.) Anyway, I'm released from the hospital and sent home for recovery and spend the next days resting, healing, and just scared to move out of fear of re-opening my wound.

Side note...on June 27th, I go to my checkup with my rheumatologist. I complain about the numbness in my right thigh and how it's turned into pain since my first surgery. He orders an x-ray of my back and increases my medication dosage. On July 1st, I receive the results over the phone. Yes, I have Osteoarthritis in my lower back. Physical Therapy would be the normal course of action, but is postponed indefinitely because of the chemo. The nurse believes there is no way I can manage therapy while going through chemo, so I just need to manage the pain and symptoms with anti-inflammatories, ice, heat, and salt baths. Damn you, Cancer! Later, as I tell my oncologist about this diagnosis, he tells me this means he doesn't want to do the immunity booster shots as planned because the shot can cause bone pain and will cause problems with my arthritis. This means I definitely can't go back to work during chemo. Damn you, Osteoarthritis!

On July 1st, I head to post-op appointment #562 (at least, that's how it feels). Finally, it seems we're heading for the top of the mountain. The incision looks great and the gaping hole is gone. The dreaded drains come back out because they are below 40ml already. The skin looks healthy and healed. Everything looks great. My surgeon removes most of the stitches and the hole stays closed. He tells me that I may have to have fluid removed with a needle, but he wanted those drains out for chemo. That's okay, I'm just glad they are out. He wishes me well with chemo and tells me he thinks I'm going to have no trouble with the side effects. I tell him my oncologist thinks otherwise because of all of my other health issues, but that I'm hoping it's easy for me as well. He then tells me that he thinks I've faced a lot of adversity in my life and that this will be no problem. It does feel good to have someone with that much confidence in me. His nurse always makes me feel good, telling me that I'm the exception (and, meaning it in a positive way...haha) and that she wished everyone had my spirit. So, I leave this appointment feeling stronger than I have in awhile. I CAN get through all of this. I WILL get through all of this.

On July 5th, David and I pack my chemo bag and head to the Oncologist's office. The lab tech puts my port catheter in and draws blood. Is this really happening? Next, we see the oncologist. I explain about my emergency surgery (apparently, it's an emergency when they bump everyone and schedule you so quickly on the surgeon's non-surgery day) and show him my incisions. We talk about my arthritis and what it means for my treatment. He's relieved that I say I'm thinking I won't go back to work. He'd planned on that shot to boost my immune system for work and the arthritis throws that out. So, now it's a "definite" no work instead of a "maybe" no work. I can live with this...spend the next year focusing on my health. Not a bad thing. Decision time...do we start chemo, or at least Herceptin, or do we postpone again? "Hmmm," he says. "I'd really like to see what happens when all of the stitches are taken out. What do you think?" What do I think? I think I'm over postponing life. "I see no reason not to postpone a week. I see nothing that is urgent...blah, blah, blah...let's wait a week." Crap...another week of my life on pause. "So, let's schedule your chemo for July 12th." Crap...I'm supposed to head to my sister's that weekend and my birthday is on the 15th. So, I ask him if I'll be up for driving to Atlanta and he tells me to pack my nausea meds and be prepared for fatigue. Yes, I can still go. One thing I don't have to postpone.  I'll deal with the rest.

So, now I wait. The new story of my life. Seriously, David and I have talked about it and I'm really okay with this last postponement. Instead of starting the Herceptin first and waiting three weeks to begin the other chemo, I'll be able to start all of it at once. It's worth the wait this time. My next post-op appointment is on July 10th. My surgeon will remove the rest of my stitches and will make sure the hole is gone for good. My incision looks great and I don't expect any further complications from the surgery. Soon, this battle will be a distant memory.

Whew, it's been quite a climb to the top of this mountain peak. Of course, there are more mountain tops to climb in this mountain range that is cancer, but I feel like I've made it over the highest peak. I've removed the cancer tumor from my body. That's quite a feat. I've healed from two large incisions created from the removal of my breasts...no small feat. I've met the beast head-on and sent it defeated and scared, whimpering in the shadows.

 As I continue my fight, I can't help but feel on top of the world right now. The rest of the mountain range looks like ant hills in comparison to the peak I just climbed. I may face more obstacles and complications in the future battles to come, but I'm feeling great and I KNOW that I will win this war.

Father's Day

Every year we celebrate Father's Day by cooking out, giving presents, letting dads know how much we love them. You know, the typical Father's Day. We post the pictures of us with our dads on Facebook letting them know how much they mean to us. As wives we ensure that the kids have gifts to give the dads. We give the typical golf equipment, clothes, shoes, grilling accessories, etc. Perhaps we even get a little complacent in our celebration of the wonderful fathers out there. Well, this year Father's Day is different for me.

There's no celebration, no grilling, no gifts this year for my husband, the father of my children. It's hard to plan, shop, and wrap when you're still recovering from a bilateral mastectomy. This week has been a rough week in my household. I still can't clean, cook, shop, etc. without my incision opening or the drainage doubling. Sitting on the cancer chair....that's my life now. To say I feel like crap about it is an understatement. This sitting and resting process is killing me. My husband says he's okay with doing nothing and I know he means it. That's why I married him. He is the most loving, wonderful man I know. His concern and love for me is endless.

Even though we aren't celebrating today, he has had quite a grand weekend and I at least have that to soothe me. On Friday, he became a disciple of Grandmaster John Graham, Sr. in the art of Wu Chu Quan. It's a huge honor and I'm so proud of him. On Saturday, he tested for his 2nd degree black belt under that same system. I was unable to attend because of the complications from my surgery. My daughter saved the day by texting me pictures and videos from her iphone. She has such a wonderful heart. I thought about ignoring my husband (he was the one who insisted I stay home) and heading to the gym to watch him anyway. In the end, I didn't go because I didn't want him to be worrying about me instead of concentrating on his forms. He's that kind of man...my health is more important than anything to him.

I've been doing a lot of thinking these last few weeks and as Father's Day approached, I started feeling more and more the weight of this holiday. As I've said before, I'm a realist and the meaning of Father's Day has taken on a deeper meaning this year. As I sit and think about the future, I can't help but think about the day when I leave this world. I know the percentages, the odds, the statistics of my survival from cancer. Yes, the percentage of survival is high with Stage IIA. But, anyone who knows me can attest that the odds are forever stacked against me. Find the small percentage and that's where I belong. I'm a rarity, an oddball; hell, I swear I'm an alien life form unfit for this world. So, what happens when I'm gone? I used to worry about how I had to live until my kids were adults. Where would they be without me? How would they survive? Doesn't every mom worry about this? It's not even about the cancer, but more about being a mom and wanted to be with your children forever because no one else is good enough to raise them.

Well, I have my answer...they will be with their dad and they will thrive. They will grow into a beautiful, successful woman, and fine, responsible young men. As much as I want to be there for their entire lives, it just may not happen. No one knows the future and I have a lot of obstacles in mine. My husband is the most hands-on dad I know. He's there for our children in every way possible. He took my daughter in as his own from day one and has been an important part of her life. He went to every softball game, coached her, spent hours practicing with her. Her successes have been his successes. And, he's equally involved with the twins. He watches soccer games, attends award ceremonies, helps with homework. He's teaching them to be men, to respect others, and to work hard. There's no better role model and no better father out there.

So, when I'm gone, whether it's from cancer or some other thing, I know that my kids are in good hands. They will be with their dad. That's what Father's Day is to me now...celebrating the man who holds the future of my children in his hands. Maybe it's a little strange that I'm not showing him love and appreciation in the common Father's Day ways, but I feel like I'm giving him something more. I'm giving him my confidence. I'm giving him my approval. I'm giving him my children. As a mother, I'm celebrating the love of my life, father of my children, and letting him know that he's the future of our children and I'm at peace with that.

Happy Father's Day, babe! Thank you for being the best dad in the world, and thank you for your endless love. You are my rock, my life, my future. I love you!

I'm Ready to Get Off This Ride

I know it's been awhile since my last post. It seems I'm not very good at keeping everyone updated. Part of this is because I've been healing and recovering from my Bilateral Mastectomy. Part of this is because I have so many thoughts running through my head that I don't even know where to begin. And, part of it is because it's summertime and who can get the computer from two gamer sons? So, if this post is scattered, it's because my brain is so scattered right now.

I had my Bilateral Mastectomy three weeks ago. It's been a long three weeks. A little side story...I'm a closet Keeping up with the Kardashians fan. It's the family dynamic that keeps me watching. All families have their drama, but at least they come together as a family. I love that about the show. One of the things I think is interesting is their Peak and Pit sharing. So, I'm going to take that from them as I've had many Peaks and Pits in the last few weeks.

Peaks
The breasts are gone, along with the tumor. I expected to feel some remorse or feel uncomfortable without the tatas. I mean, I had huge ones and they've been a part of me for quite some time. I'm having to go through my shirts because some make me look like I'm wearing a muscle shirt, but I can't wait to find a new wardrobe that works with my new look. I feel confident and even proud to show my badge of honor. I'm going to be a breast cancer survivor and I have nothing to hide. I'm a warrior and proud of the sacrifice I've made.

A sentinel biopsy was done on the auxiliary lymph nodes and the results came back negative. It's a great feeling knowing they haven't spread to my lymph nodes. I feel like that's the kiss of death. The lymph nodes scare me as I remember the cancer spreading to my grandmother's lymph nodes. It's a relief.

I cut my hair before surgery in preparation for chemo. I mean, it's shaved using a 3/4 guard. And, the funny thing is, everyone is loving it. I'm enjoying the freedom of not having to fix my hair. I can shave it into a mohawk if I want to be a little crazy. At first, it took a little getting used to, but now I'm really digging it. I donated my hair to Pantene's Beautiful Lengths. I even inspired a friend to cut hers short and donate it in support of me.

Speaking of support, the love and concern everyone has shown has been amazing. I feel blessed to have so many people in my life who care. I'm actually not good at showing my emotions and it feels weird having all of these people show me love. It's been more than I could have expected and I appreciate every one of you.

Pits
The tumor is gone, but it doubled in size. Now, I officially have Stage IIA Breast Cancer. That's scary. My survival percentage just went down 10%. It took about a week for that to sink in and for me to really think about it. I became depressed, sad, scared, and angry. Why me? I try to avoid that question, but I think one just can't help but ask it at some point. Did it grow or were all of the tests wrong? No one has an answer. I know it's Her2 positive so it's aggressive. It doubled in size in one month. What would my outlook be if I hadn't found it until my annual checkup in August? I cried, I yelled, I wished I were dead. Thank goodness for my husband. He was there for me even though the same thoughts were going through his head. He kept saying it was okay. That was the word he got from some reading material. Honestly, the okay bit drove me crazy. Every absurd thing I threw at him was returned with the same okay. Finally, I threw the what if I killed myself...is that okay? No, that's not okay. Not that I would kill myself but the okays were driving me crazy. Of course, he did make me laugh in the end. It's amazing how he helped me go from crying and yelling to laughing. As he says, it's okay!

The drains from hell are driving me crazy. Three weeks later and I still have the darn things in. I feel like they are attached for life. I'm pretty sure I'm having an allergic reaction to the plastic. I have to clean the tube sites daily and re-bandage because of the pain, I have soooo much drainage. I'm supposed to get them under 40ml in 24 hours. I'm holding steady at 70-80. The surgeon is taking them out Monday no matter what because I start chemo next Friday. I can't start chemo if I still have the drains in so they must go or I'd have to postpone chemo and the doctor doesn't want that to happen because of my active her2. So, there's a very likely chance that I will have fluid buildup and have to get a needle stabbed into me to drain the fluid. Oh, joy!

As if the drains weren't enough of a problem, I have a two inch area on my left incision that refuses to heal. The surgeon had to put stitches in after the staples were out because when I move my left arm it creates a hole. I can hear the air enter and feel the drain when it stops getting a suction. I've been to the surgeon three times this week to get areas stitched. I'm pretty sure my being a redhead is part of the problem. I don't heal very well. It's a slow process. Add my Sjogren's into the mix and this is what I end up with...an open incision.

Today has been the worst day so far. I had a few great days and spent them out doing things. I went to the park with a friend. I want to the tattoo parlor with my daughter and bestie. I went out to eat. Basically, I left the security of my house and went out into the world. What a mistake. I started feeling bad yesterday. My right side started bothering me. The drainage doubled overnight coming in at 158ml for the day. I started feeling light-headed and nauseous this morning. My head was pounding and my side was hurting. I started running a fever of 100.7 and felt like I was dying. My arms and legs started tingling and I felt like I have the flu. I took some tylenol and that broke my fever. I took my Sjogren's and Fibromyalgia medicine and that helped with the tingling a little. No, I haven't called a doctor because my surgeon is in surgery all day. And, I don't know which doctor to call. Is this an infection? Is this a Sjogren's episode? Did I catch the flu? Knowing my luck, it's a combination of all three. We'll see how I'm doing in the morning. I may call all of my doctors.

Stand Tall
So, as you can see, I've had a lot going on lately. It's been a roller coaster ride for sure. I'm ready to get off now though. And, I haven't even started chemo. I think if it weren't for the support of my friends and family, I wouldn't make it through this. I'm amazed at the lengths they go for me. Me? It really is strange to me to have so many people who care. I had the friend who cut her hair, too. And, I had my bestie and daughter get tattoos in support and love for me. Even through the pits, I've had some great peaks. I really just want to say thank you to my loved ones. I couldn't fight this cancer without you!

Here's the tattoos my crazy daughter and bestie got for me. It was a fun night and I love them both even if they are crazy.

                   

Not My Daughter, You Bitch!

"Not my daughter, you bitch!" I don't think there has ever been another sentence written or said that captures the emotions of a mom more than this sentence yelled by Mrs. Weasley in Harry Potter and the Deadly Hallows. Such a seemingly simple statement, yet it emulates every emotion I feel when I'm worried about my children. Love, anger, fear, protectiveness...a fierce need to destroy anything that would harm my child. J.K. Rowling managed to convey the message in one sentence, "Not my daughter, you bitch!"

Yesterday I had my follow-up with my Oncologist...and, yes, I did eat beforehand this time. We were there to get the results of my BRCA tests (genetic tests) and my PET Scan. I went in there feeling a little defeated and just anxious about getting this all moving. My insurance company had dealt me a blow last week by sending me a letter stating that they wouldn't cover my PET/CT Scan because I have Stage 1A instead of Stage 3 Breast Cancer and I was feeling pretty pissy about it when I headed to the doctor. How mad I was about their decision and the work I have ahead of me during the appeal was in the back of my mind as I entered the doctor's office. I was also anxious to get our battle plans drawn. All of the results were in and it was time to map out our course. Finally!

The first thing my doctor told me was that the BRCA tests came back negative. What? Wow! Really? I couldn't believe it; we were expecting another positive. I didn't realize how much those results meant to me. As I processed the news, I exhaled deeply like I'd been holding in a breath for weeks. My muscles relaxed like they'd been tight with worry instead of tight because of my Fibromyalgia. The doctor then moved onto the PET/CT scan. He brought us into his office to show us the images. They found another small lump in the left breast that they believe is not cancerous, but it doesn't matter because the boob will be gone soon. The BRCA test is negative. I have one intramammary lymph node that is cancerous. But, it's in the left breast, too. It doesn't matter because the boob will be gone soon. The BRCA test is negative.

Finally, we have a plan...
My doctor set up an appointment for me with my oncologist surgeon for Monday. We will schedule a bilateral mastectomy for as soon as possible. I informed my doctor that I WILL NOT have surgery before May 15th. Why? I WILL watch my daughter walk during her graduation. Missing that moment is not an option. Four weeks after surgery, I'll begin twelve months of chemotherapy. I'll have six rounds of TCH (Taxotere, Carboplatin, Herceptin) Chemo given in three week intervals. After that I'll continue the Herceptin Chemo every three weeks until I finish my year. I'll take a hormone pill throughout treatment and beyond. Ok, great...the BRCA test is negative.

My doctor could have told me that I was terminal and there was nothing that could be done and I would have been fine. I was emotional all day yesterday and couldn't really pinpoint why. I looked at chemo caps, planned for a hair cut, and added dates to my calendar. I was ready for all of this. Why was I on edge and ready to cry? I realized this morning that it all comes back to that BRCA test. The outcome of the tests wasn't going to change my prognosis or my battle plans. But, we expected a positive result. It's negative...we won a huge battle!!! I have a messed up body, immune system, etc. We've made jokes about how I need to transplant my brain and heart to another body. We've hoped that I didn't pass down all of my defects to my children. It was a joke until I was diagnosed with breast cancer and found out there was a breast cancer gene that can get passed down to your children.

The average woman has a 12% chance of developing breast cancer in her lifetime. A woman who has inherited the BRCA genes has a 40-85% chance of developing breast cancer in her lifetime. That's crazy! And, that's scary. That's why nothing else the doctor said yesterday mattered. Knowing that I haven't passed down the 'cancer gene' to my daughter is the best feeling ever. I could die tomorrow and feel like I won the war. Cancer CAN NOT have my daughter!

My children are my life. It's as simple as that. If they live, I live. If they are happy, I'm happy. If they are scared or in danger, I'll protect them (And, by that I mean I will do whatever I have to do to protect them...be warned!)

I don't think I can put into words how much I love my daughter and what she means to me. Some people may think it's strange when they see how close we are. I'm her confidant as she is mine. She's my best friend and my daughter. There's a fine balance that we've manage to achieve while teetering on the line of friends and mother/daughter. I will ground her in a heart beat and I will listen to her heartaches without judgement. We had a pretty tough beginning and we've been through some rough times together. The good times and the bad times; there were plenty of both. When she was five, I was broke trying to make it and take care of her on my own. That Christmas she asked for a tv and said, "If there's enough money I'd like a barbie doll, too." So grown up and mature for an almost six years old. She was already trying to take care of me. After David's head injury, we kept each other strong. She was only ten and had the weight of the world on her shoulders. I held her while she cried and she held me while I cried. Sometime after that, her dad's kidneys finally gave out. After months of dialysis, he received a kidney. I held her while she cried and told her it would all be okay. She's made her mistakes through the years; it's all part of the growing process. Even through the mistakes she made, I held her and told her how much I loved her. I protected her and never judged her for her actions. With each life lesson she's learned, I've been there to support her and love her. With each illness I've had, she's been there to comfort me and love me.

Through all of our troubles, we've had each other's back. I love her and she loves me. I'll protect her as she will protect me. It's something fierce, our emotions. I feel like my daughter has held the world on her shoulders too much and for too long in her short life. I've tried to shelter her and protect her as much as I could. The thought of her odds of breast cancer increasing because of a gene I passed on is...there are no words. How do you explain the emotions, the fear, the worry that you could have passed something on to your child that could harm her in the future?

 On May 15th, my daughter will graduate from high school with honors. She'll begin her own path (forever intertwined with mine) this fall as she heads to college to pursue her degree in Occupational Therapy. No matter where her path takes her or where mine leads, I will rest easy knowing that her path is her own. She is free and clear of those BRCA genes and will have a chance at a long, bright future. The battle is already won!