Weathering the storm

It's been just over a month since my last post. A lot has happened and I just haven't had the inspiration to write lately. My hubby and I drove to Oklahoma and took his ailing mom home in the care of Hospice where she died 9 days later, in her own bed. It was difficult seeing her hang on for so long, refusing medications to ease her transition to the other side. She finally gave up the fight on February 13. That trip was a mix of emotions, ending with anger and frustration at the greed and insensitivity of family members. But we have decided to put those people and that part of our life behind us and keep moving forward.

I missed a chemo treatment while we were out of town and honestly, I haven't felt so good since I started treatment. But all good things must come to an end, I returned home to a new chemo regimen. My Taxol was causing an awful rash since I tapered off of the nasty steroids, so I was switched to a drug called Abraxane. All I gotta say is, I'm glad I wasn't on this drug through my entire treatment because it's side effects are worse than the other. I now have no eyelashes and very few eyebrows and 5 of my fingernails are only attached by a small amount of skin. I keep them polished so as not to see the damage underneath but it's really painful to accidentally catch them on things. I'm gonna end up having to tape them down or just rip them off and start growing new ones. Either way, it's just one more thing that makes me look like a freak.

I have adapted to the "no-hair" thing and I even go without bandannas most of the time now. I'm comfortable being bald and people's stares no longer get to me (except on a rare day of insecurity). But this "no-eyelash" thing has me freaked out. I LOOK like a cancer patient now. There's no denying it. There's no chance that I could be mistaken for a girl who just decided to be a rebel and go bald. Nope. I have had some success with drawing my eyebrows on with a makeup pencil but my attempt at false eyelashes has failed miserably. They look fake and all I can see in my visual field is eyelashes. So I've resorted to being a hermit, only leaving the house when necessary. I currently have an excuse to stay home as I'm either having a huge issue with the blooming plants and trees or I have caught a cold. And adding no nose hair to my list of dignity-stealers causes my nose to constantly run off my face.

I've never been much of a TV watcher but since being home-bound and constantly exhausted, I've managed to become addicted to NCIS and NCIS-LA. Not to mention, I'm now a huge fan of Bethenny, Dr. Oz and Ellen. However, I'm not sure how long I can stand not working and being a recluse. I love being outdoors and I miss people. I crave non-children contact. I spend a lot of time on my back porch in my swing which will suffice for now but I seriously need adult interaction!

There is a light at the end of the tunnel. My last chemo is tomorrow and then the healing will begin! This is a huge deal.  It means my hair can start growing back. It means I can go in public again without worrying about what I might catch. It means I can start exercising again and lose all of this weight I've gained by being inactive for 5 months. It means I can start my tissue expansion again in my chest and finally have surgery to get my new boobs! It means...I can get my life back! Not my old life, because that's not possible. Having cancer gives you a new perspective on life and you can never go back to your pre-cancer life. I guess what I mean is I get a new life to start over. I don't know what the future holds. But I've learned to deal with what life throws at you and that nothing is ever easy. This is, and will continue to be, the toughest fight of my life. I continue to surprise myself with what I can handle. But I know I'm stronger than cancer.

Rock vs. Hard Place

Yup, this describes my life. There are a bunch of quotes that can describe my life right now. "What doesn't kill you makes you stronger" is one of the best! But right now, the shit is hitting the fan and it's coming from all directions.

We thought it was tough when my husband's father got very sick and suddenly passed away when we had just started college 5 years ago. Nope, we can top that. Not only am I battling cancer and some really annoying chemo side effects (can you say mood swings and rash from hell?), but now my husband's mom has gotten very sick and we don't have a good feeling about her outcome either. Only this time, we are 960 miles away. And we have to rely on a non-medical minded brother with control issues for information. As nurses, my husband and I have specific things in our minds that we need to know in order to process the situation. The brother is our eyes and ears in the hospital and "She's stable" and "there's been no change" is simply not a good enough report of the situation in that ICU room. You see, his mom had a bad heart attack over the weekend. Later that day, she had a stroke which has had devastating effects. And now she's developing pneumonia. This triad of events in a frail, elderly, compromised person is not good. We know this. We are prepared for the worst. She is a DNR. She doesn't want to have CPR, she doesn't want to be on a ventilator, she doesn't want to be shocked. My husband wants so desperately to be there. He needs to see her, needs to see the numbers and reports, needs to feel the situation out. She is not able to speak so he can't talk to her on the phone. Frustration doesn't even begin to describe the feelings in this house. But as nurses, we are crafty. And we have connections.

You see, we went to nursing school in Oklahoma. We have nursing friends in Oklahoma. The people in Oklahoma are a very friendly bunch and will go out of their way to be of assistance. That's just what they do. We now have friends in that ICU who understand what we want to know. What we need to know to make informed decisions. We also have friends that will go whisper in mom's ear that they are friends of ours and that we we are thinking of her and that we love and miss her. We have friends that are willing to go see her and Skype or Facetime with her so that we can see her and actually TELL her these things. Us nurses are a tight group. Tighter than family apparently. And that's just fine. Because friends are the family that you get to pick yourself.

The hardest part is trying to figure out when we should go to Oklahoma. I am currently working from home and my job is flexible so that isn't an issue. My husband however is scheduled to work the next 5 out of 6 days and has very little vacation time. So we are trying to figure out what is the best thing to do. Do we just pack up and go so that we get to see her and know we got to say goodbye just in case she doesn't recover. Or do we wait for something devastating to happen to make that trip, never getting to say those last words to her face. Could my husband be at peace with this? In addition to these difficult decisions, there's the issue of my weekly chemo treatments. I've talked to my Oncology NP and she says if I have to miss a treatment, it'll be ok, we will just have to add one on to the end of treatment. But we don't want to miss if we can help it. Our decisions right now can be described in one sentence...Rock vs. Hard Place.

Words cannot express how sincerely thankful we are for all of our family and friends who have sent out prayers and been such support during all of our trials lately. We couldn't do this without you. You keep us going, keep our thoughts as positive as possible and just genuinely warm our hearts. Thank you. And please continue with your prayers. If we end up making this trip, the weather is really yucky in that part of the country, so please also pray for our safe travels as well. And to our friends "on the inside", THANK YOU for taking care of Nana as we call her. You have no idea what your help means to us.

Guilt is an evil bitch

“What are ya in for”, she asked, half joking.

“Breast cancer. And you?” I replied.

“My husband has esophageal cancer. Today is his first chemo.”

“Well, welcome. The nurses here are wonderful!” I feel as if I should have shown them around the unit. "This is where the blanket warmer is, you'll need those. And the snacks and drinks are in here. A must see site on the unit tour is the bathroom, as all of the fluids being pumped into your veins have gotta go somewhere." But I sat in my recliner and since they were here before me, I figure they've been given the million dollar tour. 

I never thought I’d be able to consider myself the veteran. The pro. The mentor, of sorts. While our cancers are completely different, the man in the chair next to me and I have a something in common. Two of the dreaded “C” words…cancer and chemotherapy. I was on my seventh infusion, he on his very first. He didn’t talk much but when he did, he had a good spirit, even making jokes. By looking at him, he didn’t appear to feel very well. I found out that he had already undergone a surgery, as had I. And judging by his thin, frail-looking frame and gaunt face, his appetite and nutrition were not great. But his wife was very nice and chatty and curious and come to find out, is also a nurse…in my very own hospital where I work. Nursing is a small world, cancer even smaller. We passed the hours chatting, the man’s wife and I. I know their professions, how many children they have, where they live and where they work. We discussed the importance of a positive attitude and how devastating this diagnosis can be. I never asked their names and they never asked mine. It didn’t matter I suppose. I’m sure I will see them again. Everyone I have met on my cancer journey is in my life for a reason. I truly believe that. I’m sure we will connect again.

For the past 7 weeks of treatment and the 10 weeks prior to that recovering from my surgery, I have done everything in my power to remain as upbeat and positive as I claim to be. Of course, I had bad days where I just wanted to cry and sometimes did, but usually it was over something as trivial as a misshapen pancake which I threw in the trash because it looked weird. Not once have I worried about whether or not I will survive this. I will survive it. Not a doubt in my bald head. And now that I have FINALLY been approved for FMLA and can use the paid time off work that people have donated to me, I find myself less inclined to go into work. Before, working was all I could think about. Well not working in and of itself, but receiving the paycheck. The bills don’t pay themselves, ya know! But now that I can get paid for being sick (as it should have been all along), instead of putting on the brave face and pretending that I feel fine, I can now be as sick as I am, as sick as I feel. And sick is a relative term. It doesn’t always mean puking your brains out or running a fever.

For me, sick is: a nasty cough which makes me gag….all the time, a stuffy nose that bleeds 10 times a day, a constant headache, skin that’s so dry and chapped that it aches, my buzzed hair hurts, my scalp is dry and itchy, I have sores in my mouth and my nose, diarrhea has taken over my life, I’m ALWAYS cold, my eyes burn and itch, my fingers and toes ache and are sometimes numb, my joints ache, I can’t walk up the stairs in my house without becoming winded, and my memory sucks ass. Ohhhh and let's not forget the awful acne that one would only see in a Proactiv commercial. Individually, these things wouldn’t be a big deal. But when you feel these things day in and day out 24/7, it really wears on a person. And I find it harder and harder to remain upbeat, the further into treatment I get. But the mom/wife in me forces me to get up and get kids off to school, attempt to clean the house on occasion, run errands and do the normal things that a mom and wife does. Guilt is an evil bitch. If I don’t do these mom/wifey duties, I feel guilty. If I don’t go to work and help pay the bills, I feel guilty. No one has made me to feel this way. My family helps out, and continue to take good care of me (when I let them). It’s the guilt inside me as a woman, a mom, a wife, and a nurse that drives me to the point of insanity and exhaustion to prove that I can handle it all. Why do I do this to myself? The simple answer is…I don’t know how NOT to.

I tell myself things could always be worse. My cancer could be worse, my treatment could be worse. I could be like the guy in the chair next to me and have a much less positive prognosis. And that would suck. Maybe if I were sicker, I wouldn’t feel such guilt. I probably wouldn’t care. I know there are medications to ease pretty much every symptom that I have but what do you take to get rid of guilt? I expect too much of myself, I realize this. No one else has these expectations of me. Everyone tells me to take it easy and let myself heal. I know they’re right. It’s hard to change a personality trait that’s so engrained. Stupid type “A” personality. I guess I just have to take this hurdle like I take everything else...day by day. 

They're Coming To Take Me Away Ha Ha....

Fair warning....I'm one pissed off, emotional bitch who is coming off steroids and fed up with the whole FMLA system. So if you don't want to hear me rant and rave and cuss like a sailor, leave now. 

Since I was diagnosed with breast cancer and started chemo, people have commented and praised me for my positive attitude and undying spirit. And I try to maintain that image. Because I whole-heartedly believe that a positive attitude is everything, especially when dealing with cancer. But this week I have been tested to my limits and beyond, and my positive spirit is currently being flushed down the toilet. 

I started back to work last week. Not doing full RN duties, but helping out in employee health and giving flu shots and on my unit by answering call lights and passing meds and stocking cabinets. It's good for me to be back to work, both for my mind and for my checkbook. I only work 24 hours a week, per doctor's orders and I didn't even make that last week because I was so exhausted and this week isn't off to a great start either. While my side effects aren't horrible, they're enough to make me tire quickly. I'm so torn on being back to work because I need to work both for my mental sanity and for financial reasons, but am afraid I will catch some God awful illness from some patient or family member. Work is a very sore subject right now. 

So when you know you are going to be out of work for a surgery or whatever, you apply for FMLA which protects your job while you are out. I submitted my paperwork as requested and had my mastectomy. For 6 weeks after surgery, I was in a narcotic, anti-anxiety and nausea medication fog. Apparently in that time, my FMLA company requested paperwork from my physicians to certify my condition. My number one priority after surgery was NOT making sure that I checked my mail and responding to all correspondence. So when I didn't return such paperwork, the company called me. I then fished through the mail for the paperwork. Unbeknownst to me, it had already passed the deadline. I submitted the paperwork to all of my doctors. Well if you know doctors, they're very busy people and so are their staff members. When I did finally get the paperwork back, some of them were incomplete so I had to send them back to be completed. Obviously, a very long process, especially when the holiday vacations and conferences keep the doctors out of their offices. Finally I received all of the letters and returned them to the FMLA company, over a month late. So the process went along and I received a letter stating my FMLA was denied. Ummmmm, I've been out for 10 weeks for surgery and treatment for fucking CANCER!!!!! Why would they deny me. Their reason....they didn't receive my paperwork by the due date. Mind you, the due date was less than a month after my surgery so apparently my primary goal after surgery should have been to concentrate on the paperwork I didn't even know that I received because I was too doped up to give a shit and recovering from major surgery for fucking CANCER!!!!! I asked my caseworker at the FMLA company if I could appeal it. She told me that the company that I work for has a policy that they do not accept any appeals related to FMLA. Bullshit! So I emailed the FMLA rep at my work and asked her about it. She said she forwarded my case to her manager who continues to uphold the denial. This manager person is very lucky that I don't know where they live. The reason that this approval is so important is not just to hold my job. I have an awesome manager and know that I have a job to come back to...someday. The reason that this is important is because I ran out of PTO after 4 weeks. Some fabulous people at work have graciously donated their hard-earned PTO to me. However, my company has a stupid rule that the "compassionate PTO" that is donated is not available to the employee unless they have an FMLA approval. So I have since applied for "intermittant" FMLA leave since I'm back to work part-time and on a modified status. I found out today that that was approved. OMG can you imagine? I actually got approved for something! I looked at the letter, and the start date is 2/4/14. Ummmmmmmm, last I checked, it's January. And I went back to work 1/6/14. I've now left a message with the caseworker at the FMLA company to see what the hell that's about. Because I'm SURE this will again hold up the processing of the compassionate PTO I'm so desperately waiting for. Herein lies the problem and reason for my rage. So for the past 3 paychecks, I have had zero dollars and have had to physically go pay for my health insurance since there was no paycheck for it to come out of. Which brings us to another issue...

I planned on going back to work after my 6-8 week recovery period from the surgery. But low and behold, in December I found out that despite previous discussions that I may not need chemotherapy, I indeed WILL need it because my cancer was more aggressive than initially thought. Fantastic. And my doctor didn't want me to go back to work until we saw how my body would tolerate the chemo. Oh and because chemo lowers your immune system, he really didn't want me in the hospital with the nasty bugs that people come to the hospital for. I called my HR department to ask if we could switch the insurance to my husband, who is also a full-time RN there. Ya know what I was told? "Well if you would have called us within the first 30 days of your surgery, we could have made the change but now it's too late." Why must everything be done in that first 30 days? I don't understand!!!!!! I didn't know I would be out of work this long in the first 30 days goddamit! Needless to say I'm disgusted with the policies and politics of the hospital. 

Someone suggested a while back that I apply for the employee emergency grant fund to help pay my ever-mounting bills. So I did. And of course that process didn't go smoothly either because despite dialing the fax number on the application, it was not the correct fax number which then prolonged THAT process. Long story short, I received a denial for that as well today. Their reason? There isn't enough money in the fund to accomodate all of the requests. Oh but they were so generous as to give me other resources that may be available such as low-cost housing assistance. I don't need to uproot my family and move to section 8 housing you assholes! I'm a highly educated person who is just needs a little help with bills this month. Kick me while I'm down. 

On a positive note, I've completed my 6th chemo treatment, half way done! And I am thankful that I have a mother who has helped us out financially and to the generous friends and family who have donated to our numerous fundraisers recently so that we don't have to lose our house or vehicles. Otherwise, I may be writing this from the ghetto in a 1 bedroom section 8 house. That's the only positive thing I have to say at the moment because these steroids are wreaking havoc on me, despite being tapered down this week. I feel like shit and I can't catch a break and I'm angry. And this is when I lose myself and have a nervous breakdown. 

And by the way, I like being bald except that it's cold. And I'm not brave enough to leave the house while bald. 

That is all...

And They're coming to take me away Ha Ha
They're coming to take me away ho ho he he ha ha
to the funny farm where life is beautiful all the time, and I'll be happy to see those nice young men in their clean white coats
and they're coming to take me away ha ha
-Dr. Demento

Bald is beautiful...so I've been told

Happy freakin' New Year! I'm happy to say that 2013 is over! I spent the ordinarily festive occasion of the changing of the years at home with my family and was in bed by 9:30 p.m. Of course sleep didn't come until almost 1:00 a.m. thanks in part to the steroids from my chemo treatment that day but mostly due to the fact that my teenager was out with friends. As the hubby and I listened to the scanner for motor vehicle crashes that involved teenagers, I ponder why I even let him go out on such a notoriously crazy and sometimes deadly night. You want to give them freedom to make their own decisions but are terrified of the consequences of possible mistakes. Needless to say, I feel fast asleep once I heard the door shut and his big feet climb the stairs. Being the parent of teenagers is tough!

I don't ordinarily make New Year's resolutions. I believe they set you up for failure. So this year I have made a "try" list. I will "try" to be a better friend, I will "try" to live a healthy lifestyle and exercise as much as possible and I will "try to do things that make me happy. Less stress that way. That doesn't mean I take the challenge any less serious, but when I have a bad day, or a bad week or a bad month, I can always say that I will "try" to do better tomorrow. Less pressure. So far, I'm off to a good start. I walked my dog today. And I went shopping for scarves and makeup which made me happy. So, yay me!

Yesterday marked a milestone in my chemo treatment. I shaved my head. Well actually, my husband shaved it for me. My hair had been falling out in large clumps for a few days. It got so thin that I could see my scalp and I couldn't style it at all. So I took the bull by the horns and had my hubby shave my head. As much as I thought I was prepared for the event, I was terrified. The thought of losing a huge part of my identity was really scary! I've always hated my hair. Like most women do, we all want what we can't have. I've always had thin, straight hair that was bland and boring and I always wanted long brown locks. But all of a sudden, that hair that I hated became really important to me.  I've seen plenty of pictures of women going through chemo with their beautiful bald heads and thought, "I won't look like them, I will look like a freak." My husband gently shaved all of the hair off my head and I felt it fall down my back. Then it was my turn to shave his head. I told him it wasn't necessary but he insisted on being bald with me. "We're a team and I've got your back", he said. When I looked in the mirror after it was over, I wasn't as freaked out as I had imagined I would be. He kissed me on the top of my bald head and told me how beautiful I look. I couldn't ask for more than that.

As I took a shower to wash all of the hair off of my body, I noticed how strange the water felt hitting my head and running down my body. I wonder how long I will try to wash my hair or tuck it behind my ear before it hits me that it's gone. The next thing I noticed when I stepped out of the shower was how damn cold it is! Geez, how do my bald male friends not freeze to death? I took extra time to apply make-up and put on nice earrings and I have to say, I didn't hate how I looked. It felt so liberating to be bald! I can't say that I'm totally comfortable going out of the house without my head covered but I did snap a selfie of myself and my bald hubby and posted it on Facebook. That took a lot, because I'm so self conscious about my appearance. I received the most loving comments and support a girl could ever ask for. It's such a confidence booster to have people that you haven't seen in 25 years tell you that you look beautiful. But what's even better, is hearing it from those closest to you. With the exception of my 9 year old son who says I look creepy and is afraid to touch my head, I've had such positive responses to being bald. It's not a look I would do just for fun, but I gotta say, I'm going to enjoy the low-maintenance life for as long as it lasts.

Tomorrow I go back to work for the first time in 10 weeks. I won't be doing my normal RN duties and I won't be on my own unit the whole time and this will be the true test of my confidence. I'm hoping to be able to work as much as possible so I hope my chemo side effects remain tolerable. I need to go back to work, not just for financial reasons, but for my own sanity. I need to get back to some type of "normal" life. I'm blessed to have a job that works with me and will find things for me to do but also understands if I can't come in one day because I feel like crap. My old pre-cancer life seems so long ago. I guess that's the great thing about being human...we adapt. Because, what choice do we have?