Being a survivor

When I was first diagnosed and treated, I had no idea what a survivor went through. After finishing all of my treatments it still felt odd to have others refer to me as a "survivor". It is now, only 2 years later, that I am finally able to look back at the road I traveled and marvel at the fact I did survive.

I take pride in being a member of this horribly elite club. What is it that Groucho Marx said, "I don't want to be part of a club that would have me as a member"? This is not a club anyone wants to join, but for those of us unwilling members who make it to the end, we are stronger for our journey.

It is especially at this time of year, that being around the time of my birthday, that I begin to wax nostalgic at my journey and actually find myself missing being able to use my, "I am just not up to it" excuse that was a small perk available for riding the "gravy train" of cancer and chemo.

It also makes me wonder if I get credit for the times I "survived" having to deal with family trauma-drama? I guess not. Apparently everyone has family issues but only some of us have those issues exacerbated by internal medical issues. Oh well, this too shall pass......like a kidney stone.

Head Down

They keep yelling at me in bootcamp to run with my head up. I find myself looking down at the path directly in front of me. I find that I prefer to see the steps in front of me then to look up and realize I am not even close to the end of my journey. It seems to be a habit I developed while doing the whole BC thing. Rather then realize that the whole process of 3 surgeries, 8 doses of chemo and 6 weeks of radiation, would take a whole year to complete, I tried to think of just one thing at a time. How much longer to the next procedure? How many doses had I completed and how many I had remaining. By keeping my eyes on only the next procedure/dose/step, I was able to stay focused and not panic. It is the same when I am working out. By keeping my eyes focused on the next few steps I can keep going at my slow but steady pace.

I am not the fastest, but I always finish, even if it is in last place. I accept this. The other thing that helps motivate me is the fact that I am almost twice as old as everyone else in the class. I could be their mother. Considering my age, condition and myriad of medical issues, I think I am doing pretty damned good. I hope to use this momentum to keep going and lose some serious weight. I sat on my fat ass long enough for 3 people, so it is time to get moving and stay moving.

Bringing up the rear

I started my first day of fitness boot camp and I have to say I hate the person who invented this shit. My worst fears were realized when I was, in fact, the fat lady who was the last one to cross the finish line. We ran 1/2 a mile, had our introduction to boot camp, ran another 1/2 mile, did 40 deep knee bends, 30 sit ups, 20 push-ups, and 10 of those frog things where you drop down, kick your legs up and hop back up. After that, we ran yet another 1/2 mile. I will neither admit nor deny that I kept an accurate count of my calisthenics, but I did as best I could. I was the last person to cross the finish line by a good 3 minutes and I am happy to report that they cheered me on. I explained the whole cancer/chemo (gravy train ride) thing, and I further explained that I would not quit but I would do the best I was able to do and that was not going to make me first across the finish line. I found the running hurt the lungs more then it tired out my legs and the push-ups were hard on the upper body after barely lifting things for a very long time.

That which does not kill us will just hurt like hell for a very long time. I will go back for more punishment on Wednesday and Thursday this week. I have 3 classes a day for the next 4 weeks.......really??

The huge things

After I finished posting yesterday it dawned on me that it appeared I had blown over the huge things by focusing on the little things. By huge things, I mean the people and things, that to me, made a huge difference in my life last year. Every single person who took me to or from chemo, or who took care of me over a chemo weekend, that was HUGE in my book. My sister Amy was my angel without whom I would not have been able to do anything last year. It reminds me of that footprints on the sand story and trust me, hers were the primary footsteps. I really do now know what I would have done without her help. I felt like I left things unsaid because those who were there with me knew that they had my undying gratitude. It took a village to raise this idiot.

Stuff and hairy arm pits

I can honestly say the ONLY thing I miss about the chemo was no shaving. I know, TMI! The funny thing is that when I actually looked in the mirror yesterday I realized that the patch of hair under the armpit on the side that underwent radiation is about the size of a golf ball, while the other side is 3 times as long and wide. It is like that armpit now extends down to my bra line. It also made me realize they had stretched the skin down when they did the reduction, but it is just another weird thing.

I now have a pan of lasagna in the freezer and it seems to have been done just in time. It is now 12:46pm and as of 10:45 they had changed the start time of my new project to 3:00pm today. Fortunately, Nikka (who lives next door) is working as well so we can ride in together. Misery loves it some company! I am not complaining that they keep changing the date and time, but the emotional yo-yo crap is tough on the spirit. Again, it is not confirmed but I may or may not be working for one weekend, this weekend, project to end on Sunday...who knows?!? All I do know is that will likely screw up my unemployment and I will wind up making less.

All the news...

Yesterday was a visit with Dr. B, who says I seem to be doing well, but she is concerned that my white count was down a bit since my last blood work, last month. It is still "normal", but it went down so she is scratching her head. Dr. B also confirmed what Becky's mom said about being "tired" or bone weary for months following radiation. I feel like I did at the end of chemo, but only at night. I don't seem to feel as tired during the day, but the minute my ass hits the couch after dinner, I am toast. This, like shingles, could go on for almost a year after radiation. Like I said, the good thing is I seem to be ok while I am moving, but just crash at the end of the day.

I went to the dentist today and they put an actual filling into the root canal tooth after finishing (?) the root canal?? They just seemed to keep drilling on it and I think this was their fourth or fifth go at it. Either way, it was deemed "finished" and I was told to get a crown. Between the intake work and the crown, it should cost me about $650 at the UIC dental school. That is on my list of shit to do after the paychecks start coming again.

Roommate issue is still up in the air and I re posted the ad. I have 2 possible people coming to look at the place in the next 2 days and we shall just have to see. Tomorrow is the radiologist and then I am done until I seem my regular doc next month for my annual physical.

Damn them!

As anyone with tomato plants knows, this has been a lousy summer for tomatoes. It seems it has not been hot enough to get the tomatoes to ripen. I FINALLY had one large beautiful looking slightly pink tomato that I have been watching for weeks now. I found it laying on the ground today. Those damned squirrels took a few bites from it and left it to rot. Damn them! Did I mention I now have the cutest looking baby squirrel begging for nuts as well as good old Chippy? It is the cutest thing. Apparently its mother never taught it to bury some of the nuts because he just likes to sit out there and eat them. Miss Kitty thinks it looks adorable as well, or is that tasty?

Fatigue. Lately I have been more tired then I recall being with chemo. It is not just a day or two once a week, but a long-term lingering sort of fatigue that seems to take me over. I am desperately trying to decide if this is some sort of mild depression, being jobless and all, but I don't think it is because as many times as I was jobless in the past, it never manifested itself like this. Prior bouts of melancholy were more mental in nature and not really physical at all. I believe there is a huge difference between being lazy and being physically tired. Either way, I really, really, really need to get back to work.

Wow, time flies.

I bumped into a friend on the street the other day who inquired as to whether I would be attending a friend's birthday celebration over the weekend. My response was one of surprise because I was convinced we had just celebrated that birthday no more then 6 months prior. When he insisted it had been a year, it hit me square in the chest like a ton of bricks. It HAD been a year almost since the first mammogram on Sept. 27, 2008.

The first mammogram was done on a Saturday morning at Loyola and I knew when they called me back on Monday morning at around 8:30 am for a follow-up mammogram that the news was not good.

I have now spent almost the entire last year with my head down looking a just the next step in the path and never once considering the amount of time or distance to the end of the race. I was focused solely on making it through each little ordeal and over only the very next hurdle. It was almost a month between mammograms and another month, almost, until the biopsy. Through both surgeries, chemo, and then radiation, I never once looked up to see how far I had gone or how far I had yet to go.

Last night, during a conversation with a stranger about the whole journey, I was asked if I had learned anything from all this or if this had changed me. I had to admit I had not really thought of much of anything except for surviving until the next step. I did learn that I could endure almost anything (think horrifying experiences with needle biopsy and MRI), and to try desperately not to panic or worry but to merely go along when times are really rough, but I supposed I should sit back and see if I really "learned" anything from this.

I guess time really flies when one is riding the gravy train. Now that I am finally looking up and looking forward, I need to set some life goals and work towards achieving instead of merely surviving. Today is the first day I don't have to worry about what next. What a long strange trip it's been.

The hair issue

The hair is beginning to come back in and I must say I was lulled into a false sense of hope when it started to come back platinum blonde. My mother says it was the hair color I was born with and I was hoping this meant a do over for hair color. Alas, it is now officially coming in grey and white. I am starting to get eyebrows again and they too appear to be grey and white. There are a few hairs growing on my legs yet nothing in the armpits. The fuzz on my head is enough to warrant a washing now and then but it still takes only a swipe of the towel to be dry.

Of course, the first real hairs to come back were the black ones on my chin.

Last dose, last dose, last dose!!!

I finished my last dose of chemo on Thursday and I must say I am relieved. The feet and hands are numb and tingly (like you walked all day and your feet are sore), but other then the general overall fatigue, I feel pretty good. I spoke to the doctor about recovery times and Dr. B said I should be back to eating raw fruits and veggies in as little as 2-3 weeks. I just have to buy things I can wash in soap and water for a while, which means no lettuce or other hard to really wash items. I am hoping to be back on track before the fresh cherries are gone for the season! It might take 2-4 months for the hair to come back but that is the least of my concerns.

Still no word on sleeping arrangements for radiation, but it is only 5 weeks and hell, I lasted 8 weeks in boot camp! I am scheduled for a mammogram, blood work-up and a follow on with Dr. B on July 15. Hopefully, I will be back to fruits and veggies and the mammo should be clear!

Overwhelmed...

This weekend I had a pity party for one. Friday night it poured and the wind knocked down half of the tree in front of the house. Between the storm and the city outside cutting the trees in the road up to let the fire trucks pass, it was a dark and stormy night. Saturday night, as I was getting ready to go to bed at 9:30, I smelled what I thought to be something burning on the porch. When I went outside to check it out, I came back in to discover the power was out. Going outside, it was obvious that the power was out for blocks. So, it was a dark and not stormy night but I find it difficult to sleep without my fan going so it was another rough evening.

For those who don't know, my desktop computer crashed. I was thrilled I had the laptop for back-up, but the laptop does not want to acknowledge the existence of the internet. I want to say the wi fi card is missing(?) and every time I try to boot up the wi fi, the system reboots. I tried plugging it into the external modem so it could use my broadband connection, but it seems my laptop is only acknowledging the existence of wi fi and dial-up. So, I am at the library typing this to try and stay in touch.

It also seems that the paperwork I sent to Cleveland, which I was told I would need to send after waiting on hold forever to speak to a live person, to start my share of Cliff's retirement, was not the correct paperwork so that could now take months to work out.

This week is my last dose of chemo and I am planning to spend it alone. I have tolerated the last few doses of the new chemo and after the last weekend, I don't know that I am up to hosting "help" for the weekend....LOL

About 4 weeks after my last dose, I have to start radiation therapy. This involves going to the VA 5 days a week for 5 weeks. I have no car and the trip is about 2-2.5 hours each way on public transportation. I am supposed to be able to check into the nursing home on the grounds but was recently informed that I might not qualify.

My lease is up on Sept. 1 and unless I can find another roommate, I have to move as I cannot afford the place on my own. The thought of moving right after I finish all my therapy is in and of itself overwhelming.

Add up the jobless situation, chemo, radiation, retirement, no car, broke and probably having to pack and move very soon, and you can see where I might feel a bit overwhelmed. It seems that everything I could do to help, i.e. job hunt, apartment hunt, etc., could be done online, but it is hard to do it in the 60 minutes a day I have at the public library.

Dr. McCreepy & The wound

Totally unrelated topics, but I was posting, so hey, deal with it!

For anyone unfamiliar, I call the radiologist Dr. McCreepy. This man gives me the total heebie jeebies and creeps me out to no end. He seems obsessed with seeing and feeling my tits, both before and after surgery. He has never given me the break down of why I should or should not do radiation and never explained to me why I needed radiation after I had elected to do chemo. Every time I see the guy I walk away feeling like I need a shower. Amy can attest, the guy is a total ewwwww fest. It has nothing to do with the fact the guy is in a wheel chair, but the fact he seems to rarely wash his hands makes it worse.

After I told Dr. B (my oncologist) that I didn't see the need for radiation, she set me up with yet another consult with the radiologist. When I explained my theory about the fact that the site of the lump had been further cleaned out with the reduction surgery and therefore I saw no need to radiate that non-exist ant site, he simply said I was 25% more likely to get breast cancer again if we didn't radiate. I told him I was not up to another 5 weeks of radiation so my answer was no. He asked to exam me to check my lungs and heart and proceeded to stick his stethoscope under my bra. When he told me to loosen up my bra so he could see my breasts and, "see what he was going to be working with," I jumped off the table and told him my answer was no to radiation so there was no need to see my tits.

I had a follow-up appointment with Dr. B yesterday and informed her that if my choice was to have radiation with Dr. McCreepy or not have it at all, I would rather do without then go back. I explained the radiologist made me VERY uncomfortable, without going into details, and she said she would work on getting me a different doctor. The problem at the VA hospital is that they almost never get a case of breast cancer so there are few options for "experienced" docs. My guess is McCreepy has no real experience either and isn't getting any at home!

While they were unpacking and repacking the wound on my chest from the removal of the port, the nurse explained that because of the chemo, it may take months and months to heal. That means months and months of potentially no showers......REALLY??!!

How I spent my holiday weekend

As Becky reported in the last comments, she was called Thursday to rush me to Hines VA hospital as that thing in my neck was a pain in my neck, every pun intended. I had spent Wednesday at the VA seeing my oncologist and it didn't start really hurting until Wednesday night. OF COURSE it started hurting AFTER I saw the doctor. So, halfway through my laundry Thursday, while speaking to my friend Holly on the phone, I casually mentioned that the thing in my neck hurt. She very quickly asked if it was red and irratated looking, because she said, "Those things become infected all of the time." So, after rushing to the mirror to note the red line going from the neck almost all the way to the port in my chest, I called Becky to rush me to the VA.

One word I never thought I would hear a nurse say upon seeing the red line in my neck, "YIKES!" One look from the doctor and they were on the phone with xray to take the port out of my neck and to admit me for IV antibiotics. They drew blood and attempted to grow blood cultures. Long and short, I was kept from Thursday to Sunday. YES, I was able to ride that gravy train into 3 whole days of hospital food and round the clock nursing care. I should not forget to mention 3 whole days of mega antibiotics. While nothing grew in the blood cultures (meaning it had not spread to my blood), it did grow from the end of the cath in my neck, so apparently, I caught it almost immediately. GO FAST REACTING BODY!

I got stuck with a needle more times then a pin cushion and when go back on Thursday for chemo they will install a pic line (sp?). YEAH, more needles and poking and inserting. So, if anyone was wondering, that is how I spent my holiday weekend.

So it goes....

Certain issues appear to have at least subsided, but it doesn't mean that I look forward to each day's "adventure" in the bathroom. Nuff said.

The job appears to be dying, just not fast enough. While I appreciate the "days off", the rent must still be paid and there is no certainty to the income. Last week I worked exactly 10.4 hours....in one day. This week, it looks like there will be work for Wednesday and possibly Thursday and Friday. Considering I can work 1.5 of those days, it is not looking good.

That said, the math indicates if I am on unemployment, there is a good chance I will "break even" on child support or possibly be owed a few dollars a month. While it was never my goal in life to coast by on unemployment, there is something to be said for letting the body rest for a while.

I can afford to pay my rent on unemployment and depending on when the job ends, will be able to pay up all the utilities. I have very few "extra" expenses, and because I eat little that is fresh and not frozen (watermelon is realllllly working for me but I have to buy the baby ones and eat them in one day), I am living out of the freezer. Helps clean out the freezer prior to moving as well.

My last comment for this post is to again say THANK YOU to everyone in my life, and you know who you are, who have stood by my side and figuratively held my hair while I puked my way through chemo. Only one weekend of that so far and the next round of doses just makes your hands and feet numb and tingly. Something new and exciting to look forward to on this journey, and man, what a long strange trip it's been. Just have to keep truckin!

Worst weekend ever! and other stuff

WORST WEEKEND EVER!
This was the roughest one. Poor JW and Lara felt helpless as I spent almost the entire weekend in bed. I threw up for the first time, but am thankful there was little in my stomach to let go of. I threw up Saturday and again on Sunday, but it wasn't as bad as it could have been. The meds really help, but the mucus and overall feeling of having the flu (which thank GOD I haven't seemed to catch) make it rough on the body. I kept saying I do much better on the horizontal then the vertical....LOL I have lost another few pounds and slunk below the 200 mark. Wooohoooo I guess. NOT the way I recommend to diet.

So, it was the worst of the worst as to chemo. Lara and JW were both uber attentive and made sure I wanted for nothing. I feel bad for those doing chemo duty as all I have to do is sleep and pee and push fluids. The day after Holly had duty I wound up being checked into the hospital because they sent me home with not enough nausea meds. Trust me, it is nothing that anyone does or does not do, it is simply my body rebelling, but it has to suck to be the watcher.

NO SUCH THING AS ISSUE RESOLVED!
Let's just say I spent an agonizing 2.5 hours ish on the toilet Monday. Fortunately I had decided I was not up to going to work and was able to deal with the agony at home alone, well, alone after I kicked Lara and JW out to go visit his mom....LOL Poor JW wanted to know what he could possibly do to help and Lara simply told him, leave her alone with the phone near her hand :-) Still working on that. The VA sent me home with 3 huge drums of "regular flavor" "fiber stuff". OMG, I now know what they do with the industrial waste from paper making!!! I would not feed that stuff to the enemy combatants in Gitmo!! I would, however, feed that to Bush, Cheney and Rumsfeld :-)

HUMP DAY!
Today is my mid cycle check up and I am over the hump. If that last dose was the worst, then the rest of this should be a cake walk! Ok, a bad cake with crappy frosting and totally no taste walk, but you get the idea.

EATING RICE CAKES
Everything I eat pretty much tastes like nothing. I have taken to eating multigrain Cheerios because they are round and have no edges! That and the milk I put in it is pretty much it. Nothing else sounds good and NOTHING tastes like anything. Chemo kills the fast growing cells, which includes your taste buds. Drinking and eating food. That is what I miss the most.

I miss drinking!

Lara is coming to town this weekend and it brought to mind the fact that I miss being able to have a drink now and then. I don't really drink that much, never really did, but my I REALLLLLLLY miss my Friday night with the boys! I miss that glass of wine after a really rough day and I miss a good martini with dinner. Like I said, I rarely drink to excess but not being able to have a glass at all is just sad. My blood counts are such that with the new threat of swine flu and other nasty stuff, I just can't risk the exposure with the compromised immune system.

I will try to bring Lara and JW to meet the crowd at the evil tonight, but no promises.

Last of the nasties and comfortable shoes...

This is supposed to be the last of the "nasty, toxic cocktail doses" coming up tomorrow so I am battoning down the hatches and preparing for the worst. My friends are flying in from New Mexico and I told them NOT to breathe on the plane...LOL

(TMI ALERT) Having now gone two days in a row, and it being a bit less of an ordeal, I must say the advice of vaseline was worth it (and rubber gloves of course). When the nurse told me to do it I just said ewwww. When one of my best friends told me she tried it and swore by it, I gave it a shot. I draw the line at bare fingers though and invested in a box of rubber gloves. They also came in handy for handling raw onions to make roladen :-) I just find myself thinking that if I had more anal sex in my life, this whole thing wouldn't have been such a big ordeal....I KNOW....funny huh?

I love being beyond the age of truly caring about my looks. I am older, wiser, not a size two and can wear comfortable shoes. My feet are thanking me for switching entirely to gym shoes and the folks at work did NOT think I would actually need a doctor's note to wear them to work. For some reason, the consensus is that I am not faking it.

Like lemmings

I some times feel, and I have talked to two other cancer patients who said they felt the same way, that I am like a lemming. I find myself blindly doing whatever anyone tells me to do throughout this entire ordeal. I am told to stick my arm out to get poked for blood, to inject harmful chemicals/dyes, to perform procedures, and I find myself not questioning. If I were told that I was to wear copper wires from my ears, I would likely be walking around with copper wires.

I am told to take medications and I do. I have almost stopped reading the warning labels, except for the combo of sleeping pills, pain meds and sedatives they seem to have given me and appear to have given me permission to take. So far, I am only doing pain meds and sleeping pills to sleep. The pain meds because my boobs still really hurt at night and the sleeping pills seem to allow me to sleep all night without getting up 3 times to pee, which allows for better sleep. I mentally drew the line at taking the sedatives too, as they are supposed to help with the nausea, but just don't seem to mix.

I found myself leaving the hopsital after the last dose thinking I did not have enough nausea meds, but I also found myself not speaking up and asking, or rather demanding, more. Of course I wound up back in the hospital Monday when the meds I had wore out, but again, I was loathe to speak up. I have always made a list of questions to ask, but I find it almost too much trouble to ask. I am not giving up, but this battle got old very quickly.

All about the updates

Ok, poopshoot issues appear to be pretty much resolved. Thanks to modern meds, it is not quite the issue it was. That said, it is still not a regular thing and at least I am not ripping a new one. My body is producing less because my entire diet has changed and not for the better. GOD I MISS SALADS!

The hair thing is still what it is. Got none, just stubble, but takes me seconds to shower and towel dry. I don't give a rat's ass what it looks like, I don't have to look at it. I have to admit, I pull my hat off at times for the sympathy vote, like when I need a seat on the L. Hell, hard enough to stand up, so if it gets me a seat, not like I am faking it.

Kids issue seems resolved pretty much too. The boys are talking to me and know better then to cut off the hand that occasionally sends them money. For Ian's bday he will get unlimited text messaging on his phone. Costs me $20 a month and I let him know that is what he was getting. Apparently, without unlimited texting, I am ruining his social life. Whatever.......LOL

3 down, 1 to go of the bad shit and then 4 of the not so bad shit. I am seriously reconsidering radiation as the thought of being nauseous for another 5 weeks just does NOT appeal to me. Besides, they took most of the breast tissue anyways, and there is no "target" left. It would be different if they had not performed a massive reconstruction, but this way, I say they got it all or chemo killed the rest!

The scarf thing.

You see more bald chemo patients wearing head scarves and hats then you ever noticed before when someone you know is going through chemo. People you would have ignored in a prior moment jump out at you and tug at your heartstrings. There is simply a "chemo look" that evokes a sense of pulling at the heartstrings that is hard to explain. I have been told I am extremely upbeat for someone who is currently battling breast cancer and chemo, but I say what are my alternatives? So, the scarf thing. I cannot even pretend to speak for anyone else, but I have my bald head covered because I AM COLD! The low blood pressure does not help, but I am simply feeling the temp on my bald scalp. I never realized how damned much hair I actually had, although my hair dressers bitched about it for years, until it was all gone. I don't mourn the hair, but dammit, I found a new love for hats!!!!