Sometimes that is all you can do. This is my journey through breast cancer and ovarian cancer. Some choose to battle cancer in a private manner, I choose this as my forum to share this life altering part of my human experience with anyone that may be interested.
Tuesday, December 28, 2010
All clear!
Now I am transitioning into a new phase of being a cancer survivor. My medical team now monitors me. This area is vague and grey, kind of that in between. Pema Chodron a Buddhist nun and author claims this is the space in which inner peace is found. Lucky me cancer delivered me hear on a short nine month journey, I don't feel all that peaceful. Exhausted and elated maybe but not necessarily enlightened. In all seriousness this place I am in is a little unsettling. I have a blood test once a month to monitor my ovarian cancer. I will have a blood test quarterly to monitor my breast cancer. I will see my oncologist every 3 months providing all blood tests are normal. In 6 months I will have another PET scan to make sure all is still well. My oncologist said to watch my skin for any type of red fungus looking type outbreaks. Due to the type of cancer I have I will not have to take any oral medications to prevent a recurrence. I take this little tidbit as a blessing. The less pharmaceuticals that are pumped into my body the better. It is still kind of weird, my friends and I have spent so much time in the chemo recliners. Then it is over just like that, it is like the end of a relationship, no break up sex to commemorate the event, it is just finished.
I still have reconstruction procedures over the next few months. Next Friday I will have my implant exchange. That is right the silver lining is about to arrive. I will have new perky breast mounds put in on January 7th. I have adjusted to the expanders but am looking forward to my new soft breasts. Of course I will be nipple free, for a few more months. That procedure will be scheduled in a couple of months. Then of course I will have areola tattooed on some time after that. The journey continues......
Sometime during the last 8 months I read that chemotherapy adds 10 years to your age. The toll it takes on your body is pretty severe. My hair is returning I have a 5 o'clock shadow on my head. Hair on the rest of my body seems to be returning sporadically. I have quite a few pounds to shed as a result of all my steroid filled treatment. This journey is probably going to be longer then my cancer quest as the quest for good health is never ending.
A few weeks ago my friend Matt and I went on a little mountain bike ride. For all you locals it was only the Peavine trail. For my readers who don't know the area "a very mellow ride along an old rail road track with minimal change in grade". The ride was only 8 miles on a beautiful sunny day. The 4 miles to Prescott Valley went pretty smooth. Upon arriving at the Iron King trail head in Prescott Valley I turned around to see the slight grade we had just come down to realize I was completely out of my league. I was at the half way point, my saddle was already sore I was not quite sure how I was going to make it back. I have plenty of will just no muscle to speak of. My friend Matt was so patient as I huffed and puffed my way up this long slow grade. For those of you who think I am being mellow dramatic, I was pedaling so slow a jogger almost caught up to me. Rather then allow such an embarrassment I quickly sprinted to the next bend where I could rest without being lapped by the jogger. Recovering my health is going to be my real journey, tearing something down is so easy building something is so much harder.
Through out this all it still makes sense to drink water and breathe.......
Monday, December 20, 2010
PET scan anyone????
I had a PET scan on December 10th. This was not one of my finer medical moments. I had a lot of anxiety surrounding this test. All the treatment and surgery comes down to these results. My human brain can't help but wonder, is the cancer gone? did the chemo work? am I really finished? In preparation for the test I eat no carbs the day prior. I swear this gives me some kind of sugar withdrawal headache the night before the test. I of course don't take any medicine for the headache, even though they say it is okay. I personally feel like the less variables in my system the better. There is of course no medical reason for me to come to this conclusion, I try to just hydrate the headache away.
The next day I am allowed only water prior to the test. So I go strolling in the office determined to be my optimistic self. I have the scan done at the new SimonMed facility in Prescott Valley. My appointment was scheduled at 9:00 I arrived right on time. Then preceded to wait for one hour in the lobby. This flagrant abuse of patient time is something I find very frustrating. I attempt to keep my irritation at bay but it is kind of hard.
Finally around 10:00 I get called back. I am feeling rather confident in my ability to handle these medical tests like a grown up. Dan the technician is quite nice he takes me back to a holding area. First he tests my blood sugar to make sure it is within range. I take the finger prick like a champ. Next Dan locates a nice plump vein in my left arm and inserts a small butterfly. He flushes the line with a little saline, I get that nasty taste in my mouth which I get every time I have a saline flush. This is all pretty routine up to this point. I notice Dan has a little thing on his finger and I make some comment like "are zip-tie rings the latest accessory in the medical field?" He proceeds to tell me it is a radiation badge, designed to make sure that he is not exposed to to much of it, since it is harmful and all. Dan then leaves the room only to return with a giant metal syringe full of radioactive glucose that he will be injecting directly in to my veins. Somehow this situation is not comforting to me. My body decides to react with a loud ringing in my ears, I then start sweating profusely, then my vision starts to go in and out. I let nice Dan know that he needs to recline the chair and I am about to faint. I think this little episode lasts about a minute. I manage to not pass out completely. This return to my old reaction to medical treatment has me wondering if my Dr. phobia has improved at all? I start to calm down and Dan removes the butterfly and wraps my arm with some tape.
Now the next phase of the testing begins I have to sit calmly in this little dark room. I am cozied up under a blanket with my shoes off. I am supposed to sit here for about 45 minutes. I am determined to be calmer then I have ever been. This is the most important test of my life and I certainly don't want to F it up by moving to many muscles. Luckily there is a flat screen TV in the room, a little mindless TV to distract the mind could be helpful in this situation. Unfortunately it is set to TLC and "A Baby Story" marathon is on. I do not have a remote control this is not good. Now I was a fan of this show during my pregnancies. There is a time in every woman's life where a show like this could connect you to the miracle of childbirth. I however did not feel that way on this particular day. I was sure watching one woman push during delivery was causing my own pelvic region to contract. I decided to ignore the show and manage to dose off for most of the next baby story. I awoke to a brilliant young woman who had managed to carry her second child to full term without even knowing that she was pregnant. Watching someone claim such a thing really does aggravate me on some kind of primitive level. How could I possibly relax with this kind of torture?
Finally Dan comes to get me and set me up in the tube for the scan itself. This is another part of the test where I get to be absolutely still again. Only to make it more fun this time I get to lie flat on my back. To make it interesting I get to hold my hands up over my head. Lucky for me my mastectomy and expanders made all my chest muscles super tight. I feel like a spring loaded mouse trap. With out complete concentration my arms could snap up at any moment. Dan proceeds to move the platform that I am on in and out of this machine. It looks like a large block with a cylinder in the middle. The room is a cool 50 - 60 degrees. Thankfully I have blankets over me, he does however forget to cover my bald head. Time to relax this will only take about 30 minutes or so. Great, my nose starts to itch just as the test begins. Now I am really starting to enjoy myself.
So I somewhat chant my way through the test drink water and breathe, drink water and breathe....you can do this..........
and it works I finish the test by about 12:30. There would be no results until I saw the Dr. the following week.
the rest of the story is coming soon.....
drink water and breathe..........
Tuesday, December 7, 2010
Chemo log 17 - over at last
My last chemo went off without a hitch. Liette and Matt spent the day with me. They brought lunch and we played cards, I lost every hand of cribbage. Someone forgot to tell them the girl with cancer is allowed to win. I am thinking about putting together a chemo companion rule book after this all said and done. My friend Dani also stopped by with a celebratory basket full of all kinds of goodies. It is so nice to feel all the love and support that I have.
After treatment I picked the boys up from their play date and headed home for an early evening. My Dad phoned a couple hours after I got home and told me that my grandma Heatherbelle had passed away earlier that morning. My family knew that it was coming, she was after all 96. Grandma Heatherbelle lead quite a full and blessed life. The love and kindness she showed to everyone is something I will always admire and keep close to my heart. She was also a great romantic and would write the sweetest poems about love. So in addition to celebrating my last treatment I am also celebrating the rich full life of my grandma and all the love she shared with the world. We will forever share November 24th as a special day.
It is great to know that I have completed treatment. I am however only celebrating ever so lightly. I am at an in between stage. I have a PET scan scheduled later this week. They will take images of my body while a radioactive glucose is pumped through my veins. This test will confirm that I am cancer-free. So I am holding off the big celebration for the final word. It is wonderful to have the month off from treatment and know that my body will feel better with each passing day. I remember how scared I was just to get the PET scan before. Now eight long months later I can kind of gauge just how far I have come. All the treatment I have had leads up to this one test. I am probably more scared then I have ever been. At this point in the journey I have effectively managed my fear of the test itself and most things medical. It is the results that have the power and I want closure on cancer, I want my images to show my port and expanders and nothing else. I of course have no control over this and it will be as it will be.
My heart was heavy with breast cancer worry as the media is flooded with the death of Elizabeth Edwards. What an amazing woman and mother. The loss her family has experienced just brings me to tears. I have tried to give very little power to the fact that this disease that I share with so many women is deadly. I am not in denial, I just think hope is vital to strength and healing. I feel intimately connected to the sadness of all women who have lost their battle with breast cancer. We all will have to face our own mortality.........cancer patients have been forced to face theirs sooner then most would like.
On a lighter note the holiday season at the Rouette household is in full swing. The boys and I hung outdoor lights yesterday. This is something I have always wanted to do and never done. The results are great, so gaze at our hilltop in the evening if you are in the area or hell just stop by for an eggnog our door is always open. We purchased our live-potted tree and plan on decorating it tomorrow it only stands about 3 feet tall, but is soooo cute . Mason is going to be in his first Christmas pageant this week, I don't think he will have a speaking part but we have been practicing the carols in the car everyday. Then of course there is Mason's birthday party this weekend. We will be celebrating the big 5 which is impossible to believe. All this is happening this week in addition to a PET scan, work and school. No wonder I keep telling myself.....
drink water and breathe...........
Tuesday, November 23, 2010
Chemo log 16 - eve of my last treatment
For all that have been keeping up chronologically, the boys and I have recovered from our colds and such that began to plague our household around my last treatment. We all have a little lingering cough but that is nothing compared to how sick we all were. At any rate we are all pretty healthy and tomorrow I go for my final chemo treatment.
Many thanks to all of my supporters, the last month or so has been pretty tough. I appreciate all the cards, meals, movies, house cleaning and everything else. Without the help of so many these last few months would have been unbearable.
Part of me feels like in addition to helping with preparations for our family Thanksgiving (my mom is doing most of it) I should also be preparing for my last treatment. I am not sure how exactly, I am kind of in a state of disbelief. I am overjoyed that my body was able to handle the chemo as well as it has. But I am exhausted, chemo has been a long hard road, physically, emotionally even spiritually. The medicine is designed to kill all fast growing cells. I believe it kills them and so many more. Chemo strips you down, one hair at a time. Sometimes I feel that all that is left are my eyes and they are a portal into my soul. It too has been along on this trek and it to has been changed. It is hard to explain what it is like, loss does not quite encapsulate what I have been through. Chemo is a gift that gives by breaking down my body. It is kind of a paradox, this loss I am experiencing is truly a gain for the rest of my life. I guess that knowledge doesn't make the journey any more fun. Thankfully I am able to remind myself along the way that this is exactly where I am supposed to be.
I guess this leaves my preparations for my last chemotherapy much like all the others. I pack up my chemo bag, books, knitting, cribbage board, netbook, and blanket. I head there wrapped up in all the love and support that I have had along the way. I realize how lucky I am to be alive, to be receiving treatment, grateful that my body is tolerating them so well.
Oh yeah and I am completely fricking thrilled that this is my last one.
Drink water and breathe.....
Saturday, November 13, 2010
Chemo log 15, REALLY sick
It started the week before Halloween. Wednesday, October 27th my son Corbin was in bed until 1:00 PM. This has not happened in his entire life. He was some kind of sick. Conveniently my family Dr. is closed on Wednesday. I swear since I became a mother my kids are only sick on Wednesdays or Weekends. So I wait to take Corbin to the Dr. on Thursday.
Since I so love going to the Doctor I went for my scheduled lab appointment with Dr. Vu. I would not have been able to go if not for Mary who came to the rescue. She came over and watched Corbin sleep for a few hours while I was at my appointment. Not to many are willing to watch your kids when they are so sick. I told Dr. Vu of the illness I had going at home and he said to wash my hands often and it should not be a problem. I believed Dr. Vu and was on my merry way.
Thursday, October 28th, Corbin is still really sick and I get him into the Dr. that afternoon. After examining him the NP decides he has strep. She offers me 2 options, door number one is antibiotics for 10 days or door number to is a shot. I opt for door number 2, he is so sick and it just gets them better that much faster, not to mention the stinky pink antibiotic for 10 days is no fun. Now the only person in the known universe that hates shots more than myself is my son Corbin. One time he was so terrified by a flu shot, he bit me. So why would I put my 1st born through this? Because I feel he was that sick. Drastic times call for drastic measures, so myself and 2 nurses pin him down to give him the injection in the butt. He is not pleased, but it is over in less then a minute and with the exception of the slight limp he is no worse for the wear. My family is now on the road to wellness.
I feel fine, Corbin is improving, Mason has shown signs of tiredness but we are not going to get sick. That of course only lasts until Saturday morning when Mason decides it is his turn to be sick, he spikes a fever and passes out for a few hours in the middle of the day. Are you kidding me? I still feel okay, and the boys go to their fathers house for the rest of the weekend. I will rest up, I do not want to get sick.
My immune system fights admirably until about Monday afternoon, when a head cold starts to settle in. Tuesday afternoon I had a nose bleed that I swear was a tumor in my sinuses that had ruptured. I am about ready to call the Dr. when the bleeding finally stops (I am talking 5 minutes or so). I think the blood loss weakened my immune system to the point of me officially getting sick that evening. No fever just lots of drainage, coughing and generally feeling crummy. Wednesday it gets worse but I am still not totally laid up. At this point I call the chemo office and they say come in as scheduled the Dr. will decide.
Thursday, November 4th, I felt pretty crappy, dropped the boys off at school and headed for the chemo office. I had mixed feeling about treatment. I did not want to postpone treatment, if I am going to be sick I might as well be double sick right? But, I didn't want to be incapacitated and end up in the hospital. I guess the Dr. knows whats best. I will leave it in his capable hands. Dr. Vu looks in my throat and says it is probably viral. We proceed with treatment and he sends me home with a Z-pack in case I get worse over the weekend.
Treatment is extra sad for me this time. I was sick, so I must have been a little more tender then usual. It seemed crowded lots of VERY thin people, clinging to hope. New people recently diagnosed with cancer, "that feel great". I was very cold during this treatment and it is the one time I forgot to bring my own blanket. I end up sleeping until Jen arrives with lunch. I never sleep while there either. Kind of strange all around, the chemo brain, the cold, the sadness it all kind of left me in a fog.
Dinner was provided by my friend Salli that evening so after picking up the boys I only need to head home and put my feet up. Salli you could not have picked a better day, I was exhausted beyond belief by the time I got home that afternoon. I turned in around 8:00 PM with the boys, and I fell asleep instantly. Only to be awake from about 1:00 to 4:00 AM on my steroid high. My body just keeps responding to all this medicine that is running through my veins and these sleepless nights have been consistent at least. I wake up Friday still believing that I am not going to get REALLY sick and I head to work.
By this point I am kind of in shock that I have completed 9 out of 10 chemo treatments. I can't believe that I am already here. This cancer journey has been so fast I don't even know where the last 7 months have gone. This realization gives me a little buzz that I ride throughout my day.
Hooray the end is in sight!!!!!!!
By Friday night I finally succumb to this illness that I have been dancing with for the better part of a week. I proceed to get sick, my head hurts, my throat hurts, I am coughing, my bones hurt I have it all going on. I spend another entire Saturday on the couch. The number of times I have done this in the last year is just maddening. This particular Saturday is the worst one yet all the tea, juice, water and rest doesn't seem to be enough I am just miserable. I blow through a couple of boxes of Kleenex. I put off taking the antibiotic the Dr. prescribed, I am waiting for my mucus to turn a particular shade of green, I don't think chartreuse is really a green do you? This must be viral, it can't last much longer, how much snot can I produce anyway. I am a cancer patient doesn't that count for something?
Sunday morning I wake up and decide that I need soup. I have been sick enough it was time to get off the couch. So I take myself to the grocery store where I load up on tea, juice, and Kleenex. I proceed to make a giant pot of soup. Half way through this process I realize I don't really feel well enough to be doing this but who stops in the middle of a pot of soup. That evening this illness comes back with such a vengeance, I finally take the antibiotics. I don't care at this point I will take anything that will make me feel one iota better. Funny the bone pain has not been quite as severe as the last couple times, or maybe this rotten cold is just a distraction?
In between coughing fits and blowing my nose....drink water and breathe................
Saturday, October 23, 2010
Chemo log 14 Sick, Lame and Lazy.......
Treatment 8 of 10 was during the week of fall break which made for less scheduling conflicts with the boys. Wouldn't you know the one day I can relax at the chemo lounge and not have to rush anywhere to pick up kids is the one day they are actually ahead of schedule??? WTF... kind of felt like one of those zen life lessons about having more time when you are not busy rushing. So due to fall break a new friend was added to my chemo dance card, my friend Dani brought lunch and came to spend the afternoon with me. Unlike all the other friends Dani has recently begun her own cancer journey so she can relate a little more to what I am experiencing. Like so many things in life no two paths are the same, cancer treatment is even more varied from case to case and Dr. to Dr. Dani and I passed the afternoon playing cribbage, which I don't know if I have mentioned to anyone is the best card game of all time. I have only played this game with a small handful of players (4 total and 1 is deceased) so it is a joy to find someone new to play with. She even introduced me to a new game called Kings Cribbage which was like a cross between Scrabble and Cribbage, totally fun. My treatment was finished early, I was not ready to stop playing.
The treatment went well no real side effects during. I was very tired from the Benedryl drip and nearly took a nap. Dani and I passed the time quickly with the games and we were on our way before I knew it. I felt so good afterwards I talked Dani into stopping for gelato on the way home.
We stopped at this little Bistro/Coffeehouse/Pizzeria over in Prescott Lakes. Can I just say my gelato and cappuccino were absolutely perfect. After our little treat we walked to the beauty school next door to book some beauty on a budget. We planned facials for Saturday and headed for home. It was a pretty fun day all things considered.
I got home and just settled in. I did my usual post chemo shower and prepared for a quiet evening. I was tired but could not sleep, probably a combination of steroids and cappuccino. I finally fell asleep around 10:30 that evening. Only to awaken around 1:00 AM to a horrible case of heart burn, which eventually lead to me puking 3 or 4 times. This would be the sick and lame part of my story. I had not experienced nausea or vomiting since my last A/C treatment. My simple mind felt I was past that part of this journey. The good news is I was able to eventually drift back off to sleep after the puking. The next day I woke up feeling pretty good and went to work.
That particular Friday was pretty busy at the restaurant. Good because we are making money and it keeps my mind off the possibility of being sick. Bad because it take a lot of concentration on my part to multitask these day. Not to mention I occasionally get whiny and think I need to be "resting" This would be the lame and lazy part of my post. The truth is the day seemed pretty manageable, I felt tired but hell what single mom isn't?
I proceeded to come home from that Friday shift around 4:00 PM. I did not leave my couch or bed until 6:00 PM on Sunday. I was completely wiped out, I heated meals out of the freezer. I slipped in and out of consciousness for 2 full days. How did I feel you wonder? Awful does not quite describe the pain that I was in. There were times that standing would cause me the most horrible bone pain, at times I was even shaky. Some moments I wanted to cry from the pain, my mind is fine and no other real symptoms so I find this "bone" pain rather irritating. It hurts so bad I can't seem to Jedi it away. Vicodin did help to take the edge off, but it was still there lingering in the back ground. Totally lame, I was so miserable I even cancelled my beauty school facial. Spending an entire weekend doing "absolutely" nothing makes me crazy. I couldn't even muster up the focus to blog.
Fortunately "this to will pass" and I rallied enough strength to go out to dinner Sunday night with a friend. For me it is always that step in the forward direction that gets me out of my cave and makes me feel like I am healing. I need to stay busy and engaged in life around me. I am only willing to give cancer so much power over my life and 2 days is my current limit, even that I give begrudgingly.
Monday it is back to work as usual, only just a tad slower, there is a certain cumulative effect of the chemo and I am thankful I have only 2 treatments to go.
Thanks for following along.....
Drink water and breathe.........
Thursday, September 23, 2010
Chemo log 13 Live from Arizona Oncology
Live from Arizona Oncology, this place is heavy. So am I for that matter, all the steroids seem to be working. I am packing on lots of lean hard fat. The staff here is very nice, and seems quite knowledgeable. The other patients are friendly and I chat to pass some time. Small talk seems strange when everyone you are talking to is so very deep in the trenches of fighting this horrible disease. So I am feeling a little strange. The chemo makes me a little light headed, I don’t have the concentration. I am here talking to patients that are on a similar path to me, yet I am missing something.
So what is it that seems to be weighing me down? Hard to decide exactly which point is getting under my skin. Kate delivered lunch to me today. Yummy sandwich from Pangaea, followed by even better carrot cake muffinsJ I am tired but I cannot sleep. I doze a bit and then am wide awake. Time is on my mind, time to accomplish things, time to rest, time to have fun, time, time, time. I spend a lot of time in one place during treatment. I don’t have the concentration to read too much, I dose off. I whip out the net-book and my patience is at an all time low for technology. A net book is a perfect metaphor for my foggy brain. It operates sloooowly from lack of use. I think about my schedule often. Where the boys are supposed to be, where am I supposed to be?
Always the “why” follows me, I am not sure why I can’t get a handle on juggling life and cancer. I always try to return to the present moment, this is the only place I have in common with everyone else. While I am here I “drink water and breathe”, I am not here often enough. Chemo has taken me out of my body and put me somewhere in the periphery of my own existence. Reading that sentence sounds incredibly strange but I think that sums it up.
This post is almost “live from chemo”, they don’t have wireless there so I am home finishing it up. So far I feel a bit flashy, but the fog in my head seems to be clearing.
The greatest news of all is that I have completed 7 treatments I have only 3 more to go!!!!! I am thinking of raffling off my last 3 spots so if any one is interested, and wants to get in on the action just let me know.
Goodnight to all….. drink water and breathe
Sunday, September 12, 2010
Chemo log 12 one hair at a time
With out my posse captivating me, I spent the better part of the morning chatting with other patients. Really kind of touching to connect with others that have this disease. Kind of tough, the longer I do the cancer dance the more I see how many lives are affected by this horrible disease. It feels like an epidemic. I can't read the newspaper, watch TV, or just talk to someone with out the Big C word (I mean cancer:) coming up.
I have a friend close to me who was diagnosed with breast cancer in August, she is 38. She underwent a bi-lateral mastectomy on September 10th. The only thing that comes to my mind is WTF!!!!! She is surrounded by love, and is doing very well after surgery. It feels like a dream to me that we are both facing this disease at the same time in our lives. Chemotherapy will start for her towards the end of the month. It seems like a life time ago when I was at this point in my cancer fight.
On the soccer field on Saturday I met the mother of a friend and she is a breast cancer survivor. She has recently finished 3 years worth of treatments and reconstruction. I wanted to rejoice for this woman. I was so happy that she was at this point in her battle and doing so well.
In the oncologists office, I run into a friend and she is with another woman that is at the beginning of her cancer treatment. We talk about Dr. Vu, port placement and general office gossip. I don't even know what kind of cancer she has. I know that she has been very sick and will start treatment soon.
Another friend had her final breast implants put in this last weekend (hip,hip, hooray). This however is not the end of treatment for her as her breast cancer is metastatic. She is starting a new journey into the world of 2nd opinions to see if there are better treatment options for her and her family.
There is another mother at my son's pre-school who is a breast cancer survivor also. I haven't spoke with her at length. I know that she has completed some treatment, surgery and reconstruction. Her hair is pretty short and things seem very recent for her.
I guess cancer is wearing me down. I feel like it is stripping me down one hair at a time. Loosing my eyebrows is starting to change my face. Losing my eyelashes is allowing dirt and dust to get in my eyes. Losing my nose hairs (not so bad visually) is allowing me to inhale all sorts of irritants. The weekend after treatment I had pretty severe bone pain. This pain was not attributed to the nuelasta shot as I did not receive it this last time. I am stiff and tired most of the time. All my ranting reminds me of a quote I read in a Pema Chodron book "Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us." This is not the 1st time in my life that this quote has brought me peace. There is so much learning and loving that comes hand in hand with this disease. Though I am surrounded by love the majority of this journey is a solitary one.
Thank you for being here with me, drink water and breathe...............
Sunday, August 29, 2010
Chemo log 11 my first dose of carbo/ taxol
Part of me loves to get back to the routine. I love to see the boys learning and growing. School is that place where my boys start building their own lives and I am enjoying watching their minds just take it all in. I however am not a fan of the morning rush to get us all to our destinations in a timely manner. I probably say "quick, quick" a million times every morning. My schedule is pretty tight from the moment I leave the house until we return around 3:00. The good news is it leaves us plenty of time in the afternoons and evenings for homework, dinner and even a little fun.
My first dose of carbo/taxol was on 9/12. My dear friend Jen went along for all the chemo fun. This new regime was suppose to take 4 hours. I factored for 5 hours just in case something came up. We arrive a little before nine and I am the only one in the whole place for awhile. I let the nurses know that I am on a tight schedule and would they plug me in as quickly as possible. I don't start treatment until 9:30.....I don't have much wiggle room. I remind them again that I really need to be on my way by 2:15 at the latest. It is not only me, but Jen has to be home to get her kids off the bus and we only have one car. I tell myself to breathe as I get hooked up to the pre-meds.
I think I start off with a giant dose of Benadryl. This could either wind me up or make me drowsy. The purpose of this drug is to lower the chances of my body having an allergic reaction to the chemical that the taxol is suspended in. I really love the sound of that, so during the drip drip drip of the Benadryl I start wondering if my body is going to have some freak reaction to the next IV. Nothing like feeling the anxiety build, this 5 hour tour is off to a great start.
The pre-meds go off with out a hitch. Now I get to see if I am going to have a reaction, they start the drip off sloooow, and I mean slow. Seriously Jen and I are watching and there is a good 20 seconds between drips. I of course call a nurse to make sure it is working properly, she reports yes, they speed it up in stages to make sure you don't have a reaction. I am a practical person, and this little bit makes no sense to me. This was like slowly taking my IV up to cruising speed for fear of a reaction. It apparently takes 2 hours for the drip to be advanced to its maximum rate. Great, I am not going to be finished until around 3:15. Time to call in reinforcements to pick-up the boys, and get Jen back to town. Thankfully Kate had a free hour to drive to PV and pick up Jen. They in turn helped with the boys and aunt Dan-Dan stepped in to help too. I love how the chaos just works out and I am so blessed to have the help of some really wonderful people.
Physically the treatment seems fine. I get my nuelasta shot on the way out the door, this is suppose to boost my white blood cells after treatment. I head home around 3:30 my kids are there waiting for me and I am worn out. I never know if it is the chemicals or the emotional toll that is so exhausting. I put something easy together for dinner and I turn in early with the boys. However, this treatment gave me insomnia, though I am completely tuckered out I can not sleep. My mind is zooming with all the toxins in my blood and sleep eludes me until about 2:00 AM.
I rise and shine the next morning and get the kids to school and myself to work. I don't feel that horrible, just dead tired from no sleep and there is a little chemo-fog in my brain. I make it through the day without any serious side effects. Towards late afternoon I start to slow down, by evening I am ready to collapse and the bone pain sets in. That's right my bones hurt, and joints too. This could be a side effect of the chemo or the neulasta. I spend the entire weekend on aleve and advil. The anti-inflammatories barely manages the pain, every step I took was very tender. At least I wasn't throwing up too, so I do have that going for me.
By the following Monday the pain had subsided. My energy levels seemed to be returning quickly. I start to feel pretty good. I have been walking in the evenings with the boys and the exercise helps clear my head. I am at this point with my physical body where I don't know how to read the signs very well. My joints hurt and I wake up stiff everyday. I am not sure if it is from the added activity, or the medicine. Like so many question I probably will never know.
Another side effect of the new chemo is that I am starting to lose my eyebrows and eyelashes. The fallout is slow but definitely happening. These two features are way more important then the hair on your scalp. It will be interesting to see what my face is like without them. I can always draw on eyebrows, but I have never been really good at this with my eyebrows as guides. The results could be a little scary. In the end all the hair will come back. I am grateful everyday that my body is coping with all the medicine as well as it is.
Tomorrow I am off to Scottsdale to see Dr. Berardi for the final check on my expanders. We are thankfully up to size and I will not have to be making all these trips to Phoenix every week. I will have to live with these uncomfortable expanders until probably sometime in December when my permanent implants will be put in. Hooray for new boobs, I never thought that Santa would be putting those in my stocking. Jen is going to the Valley with me tomorrow so I will have some company, and we get to go out for a nice lunch.
Thursday 9/2 I am scheduled to receive my 2nd dose of carbo/taxol. It seems like this ride just doesn't slow down. One minute I am at the Dr. for a lump and the next minute I am here, halfway through treatment for cancer. Wild, at this hour it feels kind of like a dream, I have travelled into the unknown for the better part of this year and I am still on that train going full speed. I guess that doesn't make me so different from anyone else. We all move forward into the unknown, all we can do is enjoy today.
I am thankfully up to the present.
Drink water and breathe.....
Monday, August 23, 2010
The pressure grows....to get current
Sunday, August 15, 2010
We finally arrive in San Diego
I am getting closer to the present and we have officially arrived in San Diego……
Our plan was to arrive with enough time on Wednesday to allow for some beach time. We checked into the hotel and there was some type of mix-up our 1st room had a king size bed. That was not going to work we needed 2 doubles, the boys were way to big for all of us to fit. The room got sorted out in about a half-hour. The room was beautiful over looking the marina. I forget how green the plants are when you are near the ocean giant birds of paradise were everywhere on the grounds. The weather was cool and overcast a nice break from the summer weather in Prescott.
I ask directions to the beach from the young surfer bell-hop and he quickly has us on our way to Ocean Beach. Timing is everything and ours is great we get beach front parking and it is official we have arrived. The boys change into their swim trunks in the back of the mini-van (extra point for the mini). There is a sandwich shop across the way where we grab some sandwiches and more caffine and we head to the beach.
The day is sunny, windy, and absolutely freezing. The kids of course do not care they are jumping and playing in the waves. If the beach was not full of others doing the same thing I would have had the boys heads examined. None of that matters though there is something completely joyful and rejuvenating about being on the ocean. I could spend the rest of my life sitting on any beach watching my boys play, this is what it is all about.
We stayed at the beach for a couple hours and headed back to the Island Palms. The Blue Wave restaurant had a bottled wine special and the kids could eat for free, things always have a way of coming together.
Thursday, August 5, 2010
Legoland here we come...............
One knows that they have aged or rounded a significant corner in their life when, you want to borrow a mini-van for vacation. Now I do have cancer and have undergone a chemo regime that may have altered my cranial chemical composition some how. None the less I found my self swapping my SUV for my mom's minivan for the Legoland trip. I had visions of the kids being towards the back, and Dani and I being able to walk back give them snack, settle any disputes, maybe even have a press conference, kind of like air force one, only a tad smaller. The minivan had lots of potential and I was anticipating it being a vital new member of our trip.
The mini arrives and the seats are in the two forward positions. Not exactly the plan, but oh well, the boys will be closer to me for the 7 hour car ride, I like intimacy. The cargo area is vast and as we are only going for 3 nights, loading the car is a breeze. The perfect excuse to pack absolutely everything you don't need, because you have the room. What the vehicle did lack was some kind of fabulous organizational tower that might fit between the two captains chairs to hold transformers, legos and all of the other kid entertainment in a tidy fashion.
My SUV had this perfect catch all, it was known as the back seat. The bench would function as shelf, storing all manor of toys in a delightful pile. Then it would transform to net, when they would take up a game of back seat tennis throwing various toy back and forth to each other. I don't advocate this particular game and toys have only been thrown one time in the backseat by my children EVER..... The bench can also become the wall, the boys when on each others nerves can pile things on the bench high enough to prevent them from touching each other. That's right the backseat of the SUV would allow for the boy to be a little more hands on, they could actually reach out and touch each other, a definite need for brother to brother antagonizing.
The final word SUV vs. Minivan, for this particular trip not so important. If we had it for last years 12 day National Park trip it would have made a huge difference. That would be my practical opinion, or perhaps I am not of an age yet that can fully appreciate the benefits of the minivan.
The minivan was loaded the evening of July 27th. We scheduled a departure of time of around 6:ish. When I vacation I add the ish so I don't feel like we are on a grueling fun "schedule". Getting up two hours earlier then normal is bad enough, I would hate to have the added pressure of being right on time. Thankfully Dani appreciates and understands that this open time line makes for way less stress when traveling.
The official departure time is 6:45 on the morning of July 28th, I have made bagel sandwiches for the road and we are off. The morning is cool, overcast and peaceful. I love traveling on days like this not to bright just calming. The first "How much longer until we get to San Diego?" rang out around 6:48 AM. We fielded this question with the utmost patience for the remaining 6 hours and 57 minutes. The actual number of times can not be reported in the blog as I don't want to negatively impact my readership.
The 1st stop was Quartzite. Sleepy, blazing hot desert community, that apparently is a mecca for the snowbirds. I have never been through when the snowbirds are in, but I have witnessed remnants of there nesting. They are empty plots of lands with about a 100+ APS poles sticking out of the ground in some kind of grid format. The high end ones have a cement slab with pole, the lower rents just have a little desert floor, "bring your own turf" is on the flyer. This vacant RV park is usually arranged around some type of office/clubhouse/mini-mart/bar/restaurant. The signs usually read "Best HH 2$ ritas", "Pasta dinner 5$", "STK dinner $7.95, free coffee", "Dancing Sat. nite". Perhaps this is the birthplace of texting? These cultural hubs are what truly fascinates me about Quartzite, I am so curious about what the hell goes on in these places. Someday when I am limited on material I may blog about the mysteries in the desert. What about the giant rusted fishing pole? I could go on and on. Our stop is not at any of these wonderful mysterious places as they are "CLOSED, for season".
We stop at McDonald's. The All American chain/rest-stop for my family. Thankfully they are only serving breakfast and I don't have to buy my kids a happy-meal just to secure the latest in Marvel Comic characters recently released from their Chinese prison. It is crowded and funky, and not in a good way. We escape with only purchasing a large carbonated beverage for the next push to Yuma.
We are drawn across the street however by a sign, large and painted by an elementary school child that reads "REALLY GOOD JERKY". I have to find out who thinks this? and who writes signs like this? and jerky after all is a road trip staple. We take our lives into our own hands by walking across that 6 lane road in Quartzite, nothing says vacation like 18 wheeler leap frog. Before we enter the building we go into this Arizona Bedouin style shop, that has all manor of things. Dani buys a sun hat for $3. Every thing you would need to fix or accessorize an RV is under one of these tarp constructed buildings, also enough tarps for you to start up a desert gift shop of your own. I really wanted a yard frog on a metal stake whose arms wobbled in the wind, but I refused to part with my 5 spot so early in the vacation.
Next stop jerky shop, it had quite possibly the coldest air conditioning my little bald head had felt.....ever. Kind of felt like a meat locker now that I think about it. One wall was filled with all manor of dried meat. Another wall was filled with over priced candies. The final wall was filled with all types of marinated olives, I have never wanted a martini so bad at 9:30 AM in my life. If there had been rows of vodka behind the cash register I would completely understand why snowbirders come here, this is mecca. Alas these are not my vodka days so we stocked up on "provisions" and hit the road. By the way if you are passing through Quartzite, and you are in to that sort of thing, the sign was right "REALLY GOOD JERKY".
Now I must blog rush to get to the present I seem to be slipping....farther and farther behind......
Drink water and breathe.....
Another speed bump.......
I should get up to the present in the next few posts, this was the last week of July.
It took a few days to bounce back from my last A/C treatment. Then I began to notice something was not right with my left breast mound. I initially wrote it off to changes because of the infection I had earlier in July. It looked a little smaller then the right. They have been noticeably different due to tissue loss because of the excisional biopsy. It seemed even a little smaller then normal, I of course do not want to believe this. So I have to make some choices, do I call my Dr. or do nothing until I come home? There was no sign of infection, no redness or fever. The implant is filled with saline, I have been injected with it regularly in the last 4 months. I felt good, and what was the Dr. going to do? I doubted he would be able to patch an expander in my chest, I figured he was going to want to remove it. What if he couldn't put a new one in? Would I have to start expansion all over again? I so did not need to deal with this when I should be going to Legoland. So I decided to go on vacation and deal with the breast mound when I got back.
Sometimes you have got to go for fun..............I just told myself it was going to be fine, it's only saline.
drink water and breathe...........
Wednesday, August 4, 2010
Chemo log 10 my final A/C
On July 14th I received my final Adriamycin/Cytoxin treatment. Dr. Vu okayed me for treatment even though my immune levels were a little low. I was very happy to receive treatment as this would allow for my vacation plans with the boys. This treatment was very different from the 3 previous treatments. The first 3 treatments seemed more like "cafe" treatments, me and a girl friend chatting, playing games, with the occasional interruption from the chemo nurse to change drugs.
I was at the end of my chemo cycle and apparently was really worn out. This treatment started with my port not functioning properly for a blood draw. This regularly happens with my port, so I wait for the lab nurse to draw my blood. I was the 1st patient there, during the time they try to draw my blood out of my port a line forms for the lab nurse. Are you kidding me?? Now I have to patiently wait for her to stick a needle in my arm. The chemo nurse volunteers to draw my blood to expedite the process. What the hell, I am all for efficiency. Now Julie seems like a competent nurse so I am not more anxious then usual until I see the beads of sweat on her brow. I gently remind her that I am terrified of needles and would she please be extra careful. I swear she pulled out my arm and closed her eyes and jabbed! She of course completely missed my vein which is the size of the Mississippi River, so she leaves the needle in my arm for about 10 seconds. I think she thought that my vein might magically jump over the 1/2 inch and pierce itself on the end of the needle. I finally told her to remove the needle and I would wait for the regular lab nurse to draw my blood.
We were not off to a good start. When I finally get plugged in and treatment begins, I just find myself very emotional. My eyes had been tearing occasionally and I thought it was a result of treatment. I later blamed it on my excessive use of sunblock. On this day I think it was a combination of sunblock and emotions. My final treatment of A/C was a milestone. I was one weary traveler, this was the end of my six weeks of this particular medicine coursing through my veins. Hard to explain it Kate and I just sat and chatted for the duration of my treatment and I found myself tearing up the entire afternoon. It seems like I had saved just enough energy for this treatment and I was done. I was not taken over by overwhelming sadness just a tender sorrow that I can't quite explain. I felt fragile, and my body did too. I didn't think I could physically handle one more of these treatments. The clincher is that I haven't had it so bad, some people SUFFER through this. I was definitely off my mental chemo game.
Kate and I went to lunch after chemo, Indian food....................hmmmm sounds like it might not be the best idea. Kate dropped me off after lunch where I began to sleep it off. Thank heavens for my air conditioner I would not have survived this summer with out it. I crawled into bed and began napping. I woke up to some severe nausea around 5:00, at which point I threw up all of my lunch, the Indian food was certainly not a good idea. I took a pill drank some water and crawled back into bed. This was as bad as it has been. I felt like I was at maximum toxicity, in my mind I could smell the toxins running through my body. I just kept guzzling water and hoping that it would stop.
It took me a couple of days to bounce back from that treatment. I did however get clearance for vacation with my next type of chemo not starting until the 1st week in August. Time to heal, take my own advice and drink water and breathe.....
Look out Legoland here we come.
Sunday, July 11, 2010
Chemo log 9 - boob alert
We enter into the Medical Complex, greeted by that friend to all air-conditioning. The elevator ride is always a highlight for the boys and they take turns pushing the buttons. We enter the office and the strategy is divide and conquer. Corbin is to sit tight in the waiting room, armed with his LEGO Starwars book. Mason is to come back with me to my fill. Mason and I go back when the nurse calls. I am not really sure how this part is going to go. I have done this fill thing so much, but not with my little boy. I remind myself that this is a medical journey, one that the boys are on as well. There is more fear in the unknown for myself as well as them. I put on the robe, Mason instantly asks "Are you going to take a nap mommy?". I could of sure used one at that moment. We wait together like every Doctor visit of his life, this is really not so different. Dr. Berardi arrives in a few minutes with the saline, we have our customary chat. He and I are not in 100% agreement on when to stop filling the expanders. I want small and perky, his vision is somewhat larger.
The fill goes pretty much as scheduled. Mason asks a few questions, "Does it hurt Mommy?", "Why does it look like a bow and arrow? (the butterfly used for the fill)", "Does that make them bigger?" We are all sitting in the room and chatting, Dr. Berardi makes a comment like " It's like filling up water balloons." Mason thinks that is hilarious, and he feels very big for being a part of this. After my fill Dr. B notices my left breast mound is kind of red and splotchy. He didn't seem to notice it at the start of the fill. I wasn't to worried, I told him I walked through an inferno to get to the office, and my general Dr.'s office anxiety was probably heightened with both the boys being with me. He asked me if I had any chills or felt feverish??? Not really, I leave with orders to watch for redness, fever and chills.
The boys and I stop for lunch at our favorite Vietnamese restaurant. I start to feel horrible, food doesn't taste good, it's hot I am tired. I try to relax and get the boys to eat. We then make a quick stop at the import store for mom, and we start heading home around 12:00. We have to stop in North Phoenix for a bathroom break, great, it's only a 112 outside. I check my breast there and it is red and hot. I tell myself to calm down it is only the heat and I drive home. We arrived home around 3:00, I am completely spent. Thankfully my friend Dani is at my apartment when we get home and she helps my unload the car. I go directly to the couch and take my temperature 99.5. I call the Dr.'s office and he immediately calls in a prescription for an antibiotic. Dani to the rescue, she goes to the pharmacy to pick-up my prescription and a pizza for dinner. I call my oncologist to make sure the new prescription will not interfere with my chemo. It's official I am under the weather, I call in sick to work for Friday. Then I begin to sit and try to get better............ I have really been doing to much of this.
This is the first health scare since I have recovered from my original surgeries. My temperature hit 101.5 at one point and that is the magic number where they hospitalize chemo patients. I really didn't want to be admitted to the hospital, who ever really does? I also did not want to delay my next chemo, that was scheduled for the following Wednesday. Then of course there is the worst case scenario with the expander infection, that of course would be removing the expander and starting the whole process over............... This very serious course of medical events caused me to hunker down and heal. How exactly do you do that? The only things that seem to work are take your medicine, sleep, eat, drink water, and breathe (of course). Seriously it's like trying to sit around and watch my hair grow. Very boring with a side of dull. By Saturday (7/10) my infection had not improved enough my Dr. put me on and additional antibiotic. My friend Jen came over and helped clean my apartment, fortunately for me cleaning is not on the list of how to heal quickly. Later her husband and boys came over for a little swim, and to hang out with my boys. I appreciate the help and the company as do my kids. I am well enough to sit around and do a little something, just not much. Jen invited us over for a little BBQ for dinner, very casual, food and trampoline time for the boys. I have become that dinner guest, the one that eats and will take my dish to the kitchen but no longer am able to help with the clean-up. Jen and Danny don't seem to mind and their help to my family is priceless.
By Sunday (7/11) my infection seemed to be receding. I know this because I was told to outline my infection with a sharpie so that I could monitor it better. My fever had been managed with Tylenol, but the redness in the skin was still there and it was still hot to the touch. Once again, another day of laying low with the kids, waiting to get better.
Monday (7/12) I took my second trip to Phoenix in 5 days. I am told to pack a bag in the event that I need to be hospitalized because of my infection. The next line of defense is IV antibiotics....hmmm thanks but no thanks. Luckily Dr. B feels like the oral antibiotics are working, I need to take them for 14 consecutive days, I can handle that. He is however not sure whether I should have Chemo on Wednesday. I am suppose to talk with my oncologist and see how he feels. More medical wondering on my part. I am determined to get this A/C Chemo under my belt, it is the last of this type and I have scheduled our summer vacation for the last week of July in hopes that I will be strong enough to handle the rigors of LEGOLAND.
Tuesday I return to work after what seems like the longest weekend of my life. My day is pretty ordinary and I have very little stamina after such a sedentary weekend. I just keep thinking, heal, heal, heal, I really want to have chemo on Wednesday......what a mantra but treatment makes you feel that way.
Wednesday (7/14) finally arrives and Kate is my chemo buddy. I am scheduled at 8:30 in the morning. I have a power-port in my chest which is used to administer the chemo and draw blood. It seems whenever they try to draw blood it doesn't work. Drawing my blood is the first course of events, so the Dr. can go over the results and give me the yea or ney for treatment. There is the usual attempt to draw blood via my port. Followed by me waiting for the lab nurse to draw my blood conventionally. This part makes me anxious, even typing about it makes me gaggy and nauseated. One nurse tried to draw my blood and missed the vein.........aaargh.............I don't have the stamina for this. Not to mention it is pretty painful. Finally the regular lab nurse draws my blood, slight prick and I focus on other things and it is pretty much over. The whole time I am praying please let me have treatment today, please let me have treatment today.
Drink water and breathe.....................
Sunday, July 4, 2010
Chemo log 8 crummies in the tummies
The sleep was fitful, full of discomfort but the kind that is on the cellular level. It is hard to explain how I feel, not quite feverish, just generally unwell. The only thing that seems to help is time. I basically slept from about 3:oo until the next morning. I awoke Saturday feeling much better.
I forced myself to rally Saturday morning and take the kids to the 4th of July parade. I was on the fence whether I should go or not. The parade is usually steaming hot, a big no no for chemo patients and lots of sunshine another big no no. We would of course have to walk there and back and I don't have the strength to carry a kid if necessary. It seems like I am always having this conversation with myself "relax take care of yourself" or "live a little", I opted for the live. I made sure to stroll slowly to the parade. The weather was absolutely perfect, a slight breeze prevented us from overheating, and a sunhat that was more like a personal umbrella protected me from those wretched UV rays. I have these great beach chairs that sit low and have backpack straps, I packed down one for me and the boys carried our picnic blanket down for them to sit on. We took down some snacks and a couple bottles of water and were ready to jump in on the festivities. We found a little gap in people across the street from Cupper's which seems to be the general area I have always viewed this particular parade. We settled in and began spectating. Parade watching is one of my favorite spectator sports, you wave, you clap, you stand for military veterans, you cheer, you laugh, you get to see all our politicians and if your really lucky they will give you toothbrushes with there names printed on one side with "God Bless America" on the other. I don't really know what it is about parades that touches my heart, maybe it's the participants putting it out there to be a part of this community??? I love to see all the families come out to watch. I love the propaganda, I got a reminder to sign the boys up for soccer(I actually need this), an invitation to a gem show (free rocks for the kids), flyer for the Prescott BBQ days (I didn't even know this existed) and flyers and stickers for every politician running for office anywhere in the state of AZ. I love that they want to shake your hand, and that they want your vote. Now mind you I am not that easy and it takes more then a handshake to get my vote. I like to size up the politician, and the posse he brings with him. I could go on and on with my political parade theories but that is all they are theories. JD Hayworth was one of the heavy hitters for the parade this time around, and he looked even less trustworthy in the flesh. It takes a lot for him to pull that off but he managed it, I of course would have denied the handshake if I had been given the opportunity, but graciously accepted the toothbrush :) Then there is the candy thrown at the spectators, the kids love this part. The boys wave their American flags frantically anytime some one comes by with a basket of something in hopes that they will have candy. Once they get the attention of the very red faced parade walker, sometimes said person will run over for the candy hand-off, these are usually mature parade people who realize that hard candy can be lethal if thrown. Then there are the younger parade participants who just toss the candy in the general direction of random spectators, generally these tosses land a few feet shy and there is a frantic mob of children scrambling for any treasures. They are treasures for certain a blueberry dum-dum some how tastes better when bounced of the pavement. There is of course a certain amount of risk with being a spectator. My boys have scrambled out past the safe zone for a lone piece of candy, only to have a parade volunteer reprimand me about the dangers of large animals, and slow moving vehicles possibly squishing my children. It's a chance we take though, year after year. Parades are also about the anticipation, you never know what's coming down the road next and the Prescott 4th of July Parade is two full hours of fun.
I kind of went off on a little tangent there......
Did I mention it is also very important to drink water and breathe................
Tuesday, June 29, 2010
Chemo log 7 hair, hair, every where
Adjusting to life without hair has been rather smooth. I have taken to going out with just my bald head, it is also way to hot. One benefit of no hair is never waking up with a bad hair day. The downsize to shaving my head is that a very short stubble remained, maybe around an 1/8 of an inch. Some how I reasoned in my brain that cutting it short might prevent me from losing this hair. What it actually prevented was me watching longer pieces of my hair making this mass exodus from my head. I guess for my psyche and plumbing that is a good thing. The fact remains that I had a full head of stubble falling out (currently 1/2 remains). This stubble has transformed into splinters of dark coarse Asian hair that I need to remove from my body and clothes with a lint brush. The ironic part is that my thinning hair feels like a Velcro patch, that's right folks anything I put on my head clings to my hair in a weird and uncomfortable way. This makes bandanas and hats feel strange too. If I lay on my pillow "against the grain" of my hair it tugs and pulls. I also have a new super power, it's like "spidey sense", my head is a giant cluster of nerve endings that have never really been exposed to a wide variety of sensations, maybe it's like my third eye. My first shampoo was down right erotic, every draft breeze, or heat pocket I sense immediately. Sunblock has been added to my morning routine, my newly exposed scalp gets a dose of 55 SPF, I can't begin to imagine how horrible a sunburn would be. According to Dr. Vu I should be avoiding the sun altogether, my chemo makes me susceptible to "very ugly brown spots" that can occur from the sun. He repeated this phrase to Jen and I multiple times at my last visit so he must be very serious about it, I will just have to take him at his word.
I went swimming for the first time since my surgery. I didn't really swim I just prepared my arms for the idea of swimming. The amount of changes my chest and shoulder muscles have gone through became very apparent. Not only do I have my own personal flotation devices, the muscles all around my expander's are SOOOO tight. Dr. Berardi put 100 cc into my right expander which makes us even, sort of. There is less tissue on this side so the implant sits higher. All I want is balance the only way I am going to achieve this is through some very painful massage. The recent fill left me in so much muscle pain I had to take a percocet just to be able to sleep. I could barely bend over to tie my shoes. Now knowing my body as intimately as I do I think some of the pain I had post-surgery was due to the expanders and reconstruction. This stretching of the pectoral muscle over my implant caused a lot of the pain I had getting in and out of bed. For me the pros still out way the cons of reconstruction directly after mastectomy. My breast mounds still have my skin (less the nipples) over them, I look down and see familiar moles some how they are comforting. I do however feel my physical recovery from the surgeries may have gone quicker had I not elected to have reconstruction. Emotionally the expanders have given me the freedom from mastectomy undergarments and prosthetics. This meant for me an easier time accepting all the changes in my body. There is a higher risk for complications due to infection with the expanders, all things one needs to think about when making a decision like this. I never thought about any of this when I made the decisions for my surgery. I wanted to streamline everything and figured my body would figure it out. I got lucky, my surgical team encouraged this route and it turned out to be the right path for me. The great news is my trips to Phoenix will be reduced, I am almost up to my desired "size" and will not need to expand much more.
Enough for now I need to get some sleep.............
catch up on some blogging, drink water and breathe.......
Sunday, June 20, 2010
Chemo log 6 so much for my hair
Chemo log 5 hair today and gone tomorrow
The boys are healthy and fine Corbin is growing so much. He actually did a portion of his wellness check-up without me and totally chatted with Dr. Moyer like a big boy, I guess six is officially big.
The American Cancer Society sponsered a "look good, feel good class" that I attended last Wednesday. They gave out tons of awesome make-up. I met many women in various stages of cancer. We all did little make-overs with all our new product and then tried on wigs and hair wraps. Girly nights are fun even if the women all have cancer. When my treatment is complete I may try to volunteer, in some capacity to an organization like this. Feeling good about yourself is just another powerful tool in the fight against cancer.
Thursday morning I made a quick trip to Scottsdale to see Dr. Berardi. Diane was able to go down with me which made it so much more fun. She got to meet the famous Dr. Berardi. I am within 100cc of balance on the boob front. The stretching is getting to be more and more uncomfortable. I will probably max out around 500 cc. Once my new boobs are up to size I will just have to wait until after chemo to have my permanent implants put in. Until then I have to deal with these uncomfortable rock-hard balls on my chest. Diane and I rushed home after a quick bite to eat.
Diane and I hit every red light on the way home from Scottsdale. I don't mean most, I mean every. The universe was sending me a large message on patience. We got back so close to my appointment time I could not even take Diane back to her sister's house.
So I left Diane with my car to fend for herself. My friend Jen comes to pick me up to take me to my chemo appointment. We hit every red light on the way to Prescott Valley, imagine that???? the patience message continues.
We get to the Dr.'s office and it is just a little bit of chaos. I expect to get plugged in right away. Apparently they have to do labs. They tap into my port, 1st nurse can't get any blood, calls the other nurse over, she gets it to work. They draw my blood sllllooooooooooooooowly, that's right apparently it is a little thick today and doesn't want to come out quickly?? Are you kidding me even my blood isn't moving effiiciently. Then I have to see Dr. Vu, I just saw him a week ago, I can't imagine much has changed since then. This is however the order in which they want to do things. He checks me out, it is like the time before only a week later. Then clears me for getting plugged in, FINALLY. Then we sit and wait for a nurse to get to us, there must be at least 5 other patients in the chemo room. So we patiently wait until a nurse can get to us.
Then there is my dear friend Jen who has yet to come to chemo before and she doesn't really have her sheilds up if you know what I mean. I look over at Jen and I wonder if she is going to be able to handle this. It is intense, you walk into a room of pretty sick looking people. IV bags are hanging everywhere and then there is that smell.....I forgot to prep her. I know how I feel about places like this so I can sympathize with others. But Jen was awesome she settled right in, we read magazines, talked, laughed, and of course played scrabble. I am officially 2 -0 we won't mention the actual score.
Thank heavens patience was my lesson for the day because the chemo nurse apparently didn't check the IV bag. About an hour into my first solution she realized I was getting saline and not chemo, oh joy, this put us an hour or so behind schedule and I am totally hydrated and need to pee alot.
Can I just say drink water and breathe..................
Monday, June 14, 2010
chemo log 4 - hair still here
I am off to work, I need to remember to drink water and breathe.......
today it is after my cup of coffee.
Friday, June 11, 2010
Chemo log 3 - Insomnia my new pal
Since my surgery in April I have not slept like myself. One could argue that I am no longer my "self". I have had major surgery, been diagnosed with a serious disease, and had natural hormones removed from my life. I could not be sleeping for a million reasons, and I guess it doesn't really matter what they are. To address this insomnia I am either faced with a serious commitment to meditation or throwing myself at the mercy of the pharmaceutical companies. My heart says "meditate Sarah, the way to sleep is through the calming of the energies within". My mind says "take a pill Sarah, it is the path of least resistance", yes that is my mind putting a zen spin on the pill thing, never doubt the power of your mind, very tricky indeed. I don't like taking pills and I have enough "medicine" running through my veins. So I did nothing. Friday and Saturday of last week I slept through the night, my body must have known I needed a little more shut eye.
Sunday, June 6, 2010
Chemo log 2 - It's official this sucks
My friend Kelly came by with a Bountiful Basket, for me and the boys. Lots of nice organic fruits and vegetables for the price. She also stayed, cleaned my refrigerator, and did my dishes. Another of my many reminders that the universe just has a way of providing the things I need.
I started to freak out on Saturday, 6 months of feeling as rotten as I did just seemed more then I could handle. This was the worse I had ever felt, and it didn't feel progressive it just felt rotten. Certainly more then the boys could handle and I wasn't even "sick" yet. What would happen if all the possible complications came about how would I manage? Hello, self take a deep breath and drink water and breathe. Food did not seem right in anyway but I forced myself to eat what I could, fortunately I was able to drink plenty of water.
To be honest some of this not wanting to eat and cook bit might have something to do with the fact that summer has come and it is a blazing inferno outside. Thankfully my friend Joe came to my rescue (for about the hundredth time) and installed a window air conditioner in my sanctuary. It effectively cools the upstairs for the boys and I. I am suppose to stay cool and out of the sun while receiving treatment. So comfort will be maintained the price will be some paltry sum to APS and of course learning how to sleep in a jet engine. If it sounds like I am whining I assure you that I am not. Life is full of miracles, usually created by the goodness of those around you.
Sunday I awoke a bit tentative. Dani came by and helped with the breakfast dishes and general upstart of the day. My goal was to go to CVS pharmacy, and the grocery store. It took until noon for me to pull myself and the boys together for this outing. The phone rang and my friend Mary offered to take the kids and I out to lunch. I was not interested in food but the kids needed to eat and I needed to get out of my house. I was still feeling pretty slow but I thought I would try. I told Mary I would pick her up. Some would wonder why Mary would not pick us up, in a addition to the car seat situation for the boys Mary is celebrating her 78th birthday, it is high time that she was picked up by whomever would come her way, and of course I have never ridden before with her, now was not the time to start my heart being in it's weakened state and all :) Happy Birthday Marnie, we love you.
So Mary tagged along with us to CVS and then took us to Prescott Brewing Company for lunch. Now normally I go to the pub and want a burger, the "Triple Threat" is my new favorite, it is a beef patty, battered and fried jalapenos and 2 slices of the best bacon in the world. I am not kidding this bacon is heavenly, I love most bacon, but this is in a class all it's own. Apparently they smoke it themselves at the pub with some special blend of wood chips and jalapenos. It creates this smokey, chewy, crispy, salty, spicy blend of pork goodness, I have NEVER tasted bacon this good. The pub also has great homemade rolls to choose from to have this ultimate in burgers created on. How quickly I forget I am a vegetarian, and though I love vegetables, my stomach is in no way going to endure a portabello mushroom burger or a "Triple Threat" for that matter. I end up ordering the fish, mashed potatoes and coleslaw. Yes, I know fish is not a vegetable. I need to eat whatever my body is willing to receive at this point, and it sounded like it might go down. I was wrong and fed the fish to the boys, but like with all my stories there is a silver lining. The mashed potatoes with porter gravy were quite possibly the perfect comfort food. Real red potatoes smashed with the skin on, with a deliciously rich porter gravy on top, you could taste a hint of the beer it was made with, kindling my fondness for things alcoholic in this dry time of my life. Pretty complex little side dish which may become a staple in my life. Being out with Mary was an absolute life saver, sometimes you just need to be around people to be reminded that life and the world outside goes on.
I have to get to work and still have so much more to share.............if I keep at this I will eventually type faster.
Today I still have a foggy headache, but have the ability to move.
Drink water and breathe............