Monday, August 31, 2009

Girlie parts = trouble makers (TMI warning) - LONG

And now for today's the thoughts I'd wanted to blog this past week slowly percolate up to the surface...sorry this is so long and sometimes TMI...but it's my blog haha :) So...I've decided I no longer want most of my girlie parts. I already had both breasts removed and replaced (annoying reconstruction still in progress). Sure, when the reconstruction is over I'll have a perky set that will never again require the use of an underwire bra (or any bra for that matter - yay!)...but getting to that point has been annoying. These "tissue expanders" that stretch my breast skin get filled up with saline. They're very large expanders that cover the entire span of the breast area so I can feel them top, side, and bottom. They have metal and magnets in them which are used to pull the valve to the surface so that more saline can be injected into them for further expansion/filling. I can feel them with my hands but I can't feel myself being touched by my hands - still totally numb nearly 12 weeks after the surgery. The actual expansion injections don't hurt at all - they put a numbing cream on the skin which as I said is already still numb and they pump saline in and my chest feels tight for a few days from stretching the skin and then repeat as desired every few weeks til you reach the goal size. I've had two expansions and will probably have one more and then after chemo and before radiation the expanders will be swapped out for implants - that'll be my next surgery. Knowing that the next step after chemo is a breast surgery, I've begun to really think about all of my girlie parts. The benefits, the risks, etc. Some initial reading about how removal of the ovaries can improve breast cancer survival longevity and prevent ovarian cancer has led me to think that my next surgery will involve more than breast implants. I don't know if it can all be done at once but I've decided that I no longer want my ovaries, uterus, or cervix. I want them out. Just like I wanted both breasts removed to eliminate cancer's playground, I'm realizing that the f***er's playground is expansive and connected and that there are real risks to keeping unnecessary parts. I've noticed lately that the medical community tends to be very conservative when dealing with breast cancer patients - perhaps in response to women who feared being disfigured (which no longer happens by the way) by a mastectomy or who hold strong attachments to their female parts/organs as if it defines them as women, or perhaps it's driven by a desire to minimize costs - I don't know (and these are topics that are far too complex for me to approach right now while discussing my feelings on my own girlie parts). Whatever the motivation, I found it evident early on when two different surgeons (one crappy one and one phenomenal one) both told me my cancer could be removed via a lumpectomy but when I responded along the lines of "oh hell no, we're taking these suckers off", their tune changed as if I had just delivered the best news they'd heard that year. I could tell that my surgeon (the phenomenal one, of course) was relieved and impressed that I wanted to be aggressive by having a bilateral mastectomy. Maybe she knew from the questions I asked that I had done my homework and didn't need her to lay it out for me (though I wish she would have anyway). She's truly among the best in the country and I am glad she was my surgeon - I'd choose her again in a heartbeat. But I wonder sometimes why she and other surgeons I've been hearing about aren't more forthcoming about the aggressive options available and their pros/cons, the studies that can help guide us - even though many contradict one another - all of this is powerful information which can enlighten and confuse - but nonetheless should be brought to the table before go-time, in my opinion. Since beginning this journey I have met many women battling breast cancer - women of all ages and backgrounds. It amazes me how many women are steered in the direction of the lumpectomy, and how many take that route only to find themselves having a mastectomy later on either by necessity or by choice. Certainly there are many women who have successful lumpectomies and those that have mastectomies that still don't fare well in their battle - I'm not saying one way is right or wrong since nobody really truly knows. However, my aggressive personality and intense desire/will to be alive to see my son grow up and become a man and father does make me surprised when I hear a triple-negative or HER2 positive BC diagnosis is being treated conservatively when we're dealing with some of the most aggressive forms of breast cancer with higher rates of recurrence. The idea of this shit coming back or taking residence elsewhere in my body scares the crap out of me so I just keep thinking of how to do whatever I can to avoid those outcomes. It is an individual choice, one made with the fear of death at the forefront of one's mind. You just can't imagine what it feels like to be faced with such decisions until after you've heard those words "You have cancer." Add the element of not being an expert on the subject at hand and being totally dependent upon the knowledge and experience of others who themselves don't have the critical answers. It's daunting beyond comprehension. Then you start considering all the possible side effects of surgeries, chemotherapy, radiation - it's a lot. If you were to read the drug inserts for chemotherapy and thought for a minute that you'd experience all those side effects you might convince yourself you'd be dead by dawn the next day. I was terrified before I started chemotherapy because all I kept hearing about was how sick it makes a person, how it is basically poison. And I remember watching David, a boyfriend of mine who died of cancer in 1998, go through it - it was horrendous. But in order to beat cancer I have to fight it with what's available. I just have to trust my doctors, nurses, and myself to do everything possible to protect you from side effects and benefit from the "God given liquid gold cure juice" as I like to call it. It's scary, so I understand why some people may want to avoid some types of treatments available. But I want everything they've got - I want to live and I'll give up a lot to achieve that goal...A LOT...including my girlie parts (and perhaps much more if it would help). To be clear - I respect EVERY cancer survivor's decisions and opinions on their own medical decisions/choices - only you and your doctors can know what's best for you in your situation - I am not an expert - just a very determined, angry and scared warrior wanting to unleash every available weapon on this f****er. I hope nobody misunderstands my comments to be a criticism of their choices in any way since that is not my intention. I remember my first consultation with my oncologist - the talented Dr. Glaspy. What a brilliant man he is. I remember my conversation with him about my ovaries - keep 'em or ditch 'em - and how he felt the answer may need to depend on the BRCA1/2 gene test results - or not - depending on how I felt about it. I remember though that regardless of the test results, the ultimate answer he gave me was to ditch 'em (though timing was discussed and he thought it could wait til I started menopause if the gene test came back negative). Well my gene testing was negative, but the more I read about the connection between breast and ovarian cancer and the survival rates of the latter due to most cases being detected too late, I'm totally certain I want them out of my body, pronto. So, if my ovaries are going to go, I may as well get rid of my uterus and cervix too - I already know my cervix is trouble - I had precancerous cells removed from it many times in my twenties, which I later learned is the reason I ended up with the condition "incompetent cervix" during my pregnancy with Cooper. Well, if you know me, I don't accept incompetence in just about any aspect of my life so I think it's time they get "laid off" because if it's not competent then it does me no good any other way, so....cervix, you're fired! LOL. My girlie parts don't define me - they only hinder me from realizing my full potential as a mother, wife, daughter, friend, sister, cousin, niece, mentor, a cancer survivor. So I want them out. Unless someone presents me with evidence that taking them out would actually increase my chances of cancer recurrence or spreading, they're coming out. Now I just need to sit down with Dr.Glaspy and figure out how to make it happen and when. Ok, now that's off my chest I'm taking a nap. God bless you, my friends and family. I love you.


It's so unlike me to go nearly a week without blogging - I'm sorry to keep you waiting. I've had a running blog post in my mind all week long but every time I have a moment to sit down without having to worry about what Cooper is getting into I realize just how exhausted I am and I ditch all else in favor of sleep. Of course, now that I have time to blog while the sitter is with Cooper, I can't remember what it was I wanted to blog about - except, of course, how tired I am. It amazes me how I can feel so strong one day or one week and then BAM feel like I've just walked off a battle field. It's not like I'm winded or out of breath - just tired all the time (and feeling pretty emotional as a result). I can do things, and am keeping up, but it's challenging. I am doing what I can to get sleep whenever possible but the challenge is that I never seem to get more than 2-3 hours at a time before being woken either by Cooper, the dog, a hot flash, drooling on myself (lovely visual, eh?), etc. Falling asleep and staying asleep is difficult because of the residual steroid medication from the first week of each chemo treatment and the hormonal changes from chemo-induced menopause. Once awoken, it takes forever to fall back asleep. Seems that every time I finally reach a deep sleep I'm woken by something. It's incredibly frustrating and probably incredibly detrimental to my health, although I'm used to it from Cooper waking up every 90 minutes the first year of his life due to his health issues and medications. Even when Bob is home and can be in charge of night time duty, if Cooper wakes up and cries I wake up...even if I sleep downstairs on the couch - it's mommy radar. So how do I deal with this? Two things: first, as SOON as Cooper goes to bed I have less than an hour to do any non-sleeping things needed and then I MUST take a pill and go to sleep because it's the first 4+ hours of his night that he is least likely to wake me up. Secondly, every time Bob comes home from a trip (or at least every other time), I need to spend a night at a hotel where there is no risk of mommy radar going off. I did that once last month and it was the best night of sleep I had in over a year and I felt human the next day. But, it's no longer about feeling human, it's about my survival - I need adequate sleep to keep my immunity up and maintain my warrior status to beat this blasted disease. The sitter is here today and I have no appointments, thankfully. I'm going to spend the day in bed and sleep as much as I can. I'm checking email, blogging a little, checking FaceBook, and watching a little TV, but that's it. Shortly I will take a pill and go back to sleep and hope to get a really long nap. Bob will be home tomorrow night, thankfully. I miss him and need him here. So all weekend long I've kept thinking "I wish it was Tuesday." Today I'm thinking "thank God tomorrow is Tuesday."

Tuesday, August 25, 2009

Cycle 3, Day 1: 3 down, 5 to go!

I've spent the last couple of days focused on getting sleep and rested. Thankfully, it's been a successful quest. I posted to Cooper's blog about it this morning while I was getting my chemo infusion (click here to read it). Sorry for not copying it over, but I'm late for my nap :).
At my appointment today, Dr.Barstis discussed the differences between Cisplatin and Carbopatin since I'll be getting one of them, along with Gemcitibine, for chemo rounds 5-8. Cisplatin has a tendency to cause more side effects (mainly nausea) but might be more effective against triple negative breast cancer...although Carboplatin might also be deemed more effective. We agreed that he would contact Dr.Glaspy and discuss it with the understanding that my position on the matter is this - I will take ANYTHING that is deemed the most effective, regardless of side effects (as long as said side effects are not life threatening of course). Some people would choose fewer side effects and that's OK - this is a personal/individual choice that every patient needs to make for themselves after getting educated on the subject. But for ME - I want all guns ablazing in my fight even if that means praying to the porcelain gods for a week of every month (although Dr.B didn't seem to think I'd fare that badly since I haven't had nausea at all thanks to the anti-nausea drugs I get days 1-3).
We also talked about my return to work, again, because Dr.B is very concerned about my not getting solid sleep DAILY and he's concerned about the effect of adding more responsibility to my plate when I should be working on ensuring I get the sleep thing under control first. Chemo related fatigue usually has a cumulative effect and since I have 5 more to go after today we don't want me to set myself up for problems. I learned that the fatigue I've been experiencing is more related to the chemo than to my son's annoying sleep patterns - although they certainly go hand in hand - a perfect sleep deprivation storm, so to speak. So....we discussed a couple of alternative options to the plan we last agreed upon and I'll be deciding on that tonight and get my revised note from him tomorrow when I go in for my Neulasta shot and then I can call and let folks know what the new plan will be. I'm so grateful to my employer for being so compassionate and flexible during this critical time. I know that many people are not nearly as fortunate as me. I thank God for this and the many other blessings He has sent me.
Also, I've officially met my deductible and out of pocket maximum for the plan year (our plan year is July 1 - June 30) -- so $2k within the first 2 months of the plan year. This is after meeting those same deductibles and out of pocket maximum amounts within the LAST 2 months of the previous plan year (May and June) $4k in 4 months. This is with GREAT health insurance benefits (for which I'm very very grateful). From now through June '10, I just pay office visit co-payments - phew!!
OK...I'm an hour late for my nap and the sitter is leaving in 10 minutes - ugh - BUT Bob is home so I'm logging off and catching some quick zzzz's - doc's orders! LOL ;)

Thursday, August 20, 2009

All I want to hear from the pharmacy tech/clerk...

...are things like "Good morning, how are you today?", "Is there anything else I can do for you today?", "Would you like to speak to the pharmacist about your prescription(s) today?" and "I wish you well" or "Have a nice day". I do NOT want to hear "go to this website to learn the truth about cancer" or "I hope you're using alternative therapies because that's the only way you can beat it" or "I've cared for three cancer patients and the only ones that made it were the ones that pursued alternative therapies." I especially don't want to hear this from 1) someone I do not know, 2) someone that has no medical, holistic, or pharmaceutical degree, or 3) someone that is saying this to me over the pharmacy counter while others can hear it and when all I said was "I'm here to pick up my prescription." SERIOUSLY, why is it that some people have to ruin a person's day with this kind of unsolicited, unwanted, and unprofessional "advice" during the most stressful time of a person's life - as they are fighting for their life?! Dear Laura (pharmacy hag that said these things to me yesterday), While you may truly believe you are being kind and helpful to those in my situation, please reconsider saying such things to me and others like me that come to your counter. Assuming that we haven't already considered any and all available options to fight the battle against this deadly disease is quite insulting and hurtful. You nearly ruined my afternoon yesterday with your inconsiderate and inappropriate comments about my cancer treatments. I did not ask you for medical or holistic treatment options or advice. I simply asked you to ring up my prescription and yet you chose to violate my privacy by reviewing the nature of my prescription, looking at my bald head, and then making statements about my treatment plan in front of other customers (isn't that a violation of federal law anyway?!). I am quite confident in my physicians, surgeons, and holistic practitioners and the plan they have me on but there's always that occasional fear and doubt a person with cancer will have and comments like yours only stoke the flames of fear and doubt at a time when we need to be positive and confident. I have just made a call to your manager to inform her of your unprofessional interactions with me since yesterday was the THIRD time you have done this to me. I asked her to instruct you to discontinue such inappropriate interactions since you are indeed violating patients' privacy. I told her I'd keep my prescriptions there as long as that never happens again but if it happens one more time I'm transferring out to another pharmacy because I don't need that nonsense right now. I hope you will begin to think about how your comments make the customers feel and if you feel you need to disseminate information about alternative treatments you should do so in a more appropriate setting where people are actually soliciting such information. Thank you, Julie Olsen

Tuesday, August 18, 2009

Tired today...but ever so grateful

Cooper and I had a terrible night last night - he woke up crying every hour from 8pm-2am til finally I couldn't take it anymore and brought him to bed with me. He kept whining and squirming so at 2:30am I remembered that the pediatrician said he might be that way from the shots he got yesterday (prevnar and flu shots) and to give him Tylenol to take the edge off - apparently the Prevnar shot goes deep in the muscle and causes a good 24 hours of irritation/aching and fussiness (joy! ;/). Once I did that he slept til 6am. Needless to say, I'm totally exhausted. The sitter was here from 8-4 today and during that time I had a bunch of things I needed to get done but only one thing on my list got done because my cell phone/blackberry decided to drink a couple drops of the neighbor's sprinkler water as we walked past their driveway last night on a short walk. Seriously, there were TWO OR THREE DROPS of water on the device which I wiped off immediately. Well, apparently that was all it took to kill the device. I spent about 2-3 hours this morning trying to solve the problem of what to do about getting a replacement. Seems like it'd be simple, right? Well, I don't want to waste anymore time expressing negative feelings about how this process went down today but I will just say it was ugly and disappointing at first. BUT, there's a happy ending - there's a Verizon wireless account rep named Robert who restored my faith in humanity when in my last ditch effort to find someone that would understand why it's not acceptable for me to be without a cell phone for a period of 1-3 weeks (long story about that time frame having nothing to do with Verizon) and Robert made it his personal mission to help ensure I got a replacement overnighted to me - he went out of his way to pull strings to make it happen. He understood that someone undergoing chemotherapy should not be out without a phone - what if I have sudden and dangerous side effects without warning while I'm out of the house on my walk? Besides, what if the sitter needs to reach me about an emergency related to Cooper while I'm at a doctor's appointment or support group? Thank you, Robert from Verizon! You are my hero today because by noon tomorrow I will once again have a functioning phone/blackberry that will enable me to leave the house knowing I can call for help if I need to. So back to the tired part...I was exhausted from the minute I got out of bed this morning. I wanted so badly to crawl back into bed when the sitter arrived but I knew I had to deal with the phone issue which then took hours to resolve and then I still had to accomplish SOMETHING on my list of things to do so I managed to do the little touch-up painting in the home office - filling in the little spots that got missed by the roller when my dad painted the room, and painting the strips of cable covers that are on the wall hiding the flat panel TV and under cabinet lighting cords so that they blend in with the wall better. It took maybe 20 minutes to get that done and I had to sit down and catch my breath from being on my feet. That worried me. I've been doing so well and then I have these days where I can't manage to eek out 15-20 minutes on my feet. But I'm grateful...because in spite of the fatigue and the frustration of the morning, I am not nauseous and I don't have mouth sores and I still have my eyebrows and lashes...these are small but happy victories that keep me smiling. And I'm grateful for the love and support of sooooo many people. This afternoon when the sitter went home, my dear neighbor and friend, Femme, came by to take Cooper for a walk so I could get dressed and take some deep breaths and rest before I go to a cancer patient support workshop tonight "Look Good, Feel Better" where I'll learn how to care for my skin while on chemo and radiation. I'm able to go to this workshop because another amazing neighbor and friend, Susan, will be watching Cooper for me while I go. Thank you, ladies - so much! Exhausted, but ever so grateful. That's my day today :). Here's to hoping that Cooper sleeps better tonight so I can sleep better and longer tonight too because I sure do need it. Blessings to you, Julie

Saturday, August 15, 2009

Cycle 2, Day 12: Twitch, brows & lashes, and what was I gonna say?

My little annoying eye twitch has returned. I had it in cycle 1 too but I don't think I mentioned it because I wasn't convinced it was related to chemo since I've had that on and off in the past during stressful times. Funny thing is that it came back just about exactly the same time in the cycle as last time. It's not a big deal and I'm certainly not complaining about it - it is better than the watery eyes I had last time - though I wouldn't be surprised if I see that return in the next week since that's about the time in the cycle it appeared last time. My brows have begun to thin out considerably. I woke up one morning last week and looked in the mirror and thought to myself "did I just have my brows waxed?" and then I saw my bald head and laughed as I realized wax has nothing to do with my brows. Kind of like when I was in the market the other day and actually stopped and picked up a bottle of shampoo! I laughed, put it down and kept walking. Thankfully I realized I didn't need it BEFORE getting to the checkout stand. I had a good laugh from it though as I wondered whether anyone stood by watching the bald chick look over the shampoo selection. heehee. My lashes are slowly disappearing. Slowly though. Each morning the past few days I've found a new empty spot on the lash ledge where a lash or two once resided. It's kind of weird to see that. I hope that the loss of lashes is very slow not just because of the whole aesthetic thing but more importantly because they're protective of the eyes and I really don't want to have to put fake lashes on every day - what a pain that would be. But, if it comes to that I will do it - I think. There was something else I was going to blog about tonight but I forgot. Which is kind of funny because that is happening to me a lot lately too - forgetting stuff. And, that, my friends, is what they call "chemo brain". UGH I was so hoping that I would escape that not so lovely side effect because I like to think of my brain as my best asset. I remember during pregnancy and for several months after Cooper was born I suffered a similar thing that is often called preggo brain and there was a study that came out around that time that showed that womens' brains actually shrink during pregnancy and then it takes a while to grow back to its normal size afterwards and it was related to the forgetfulness that pregnant women experience. Well, chemo brain is also a well documented phenomenon and thankfully I'm told that just like with pregnancy, things go back to normal later on. It just kind of sucks that it's begun already since I'll be doing chemo through the end of the year. Oh, now I remember what I was going to say. Bob and I have been working on remodeling our home office. It was a big mess before - with big bulky oak furniture that took up the entire room (which is the 3rd bedroom of the house). There was a big L-shaped desk and a wall of open bookcases that overflowed with our books, files and nick-knacks. In spite of the large furniture, there was never enough space for both of us to be in there working at the same time so when we were both here and in need of workspace I always ended up at the dining room table. Besides the fact that having that room be only an office meant we had no guest room so when my folks were here they played musical sleep stations - mom would sleep up in my room with me when Bob was away and dad would be on the couch and when Bob was home they would both take the couch because they found the air mattress in the living room set up to be not as comfortable and certainly not private. I felt terrible that we couldn't provide a more private and comfortable place for them to sleep. Anyway, the goal of the remodel is to turn the room into a dual-purpose space. We got IKEA home office furniture and wall-mounted cabinets so that the office portion of the room would take up just half the room and then the other half of the room would accommodate a decent sized futon or similar fold-out bed. And, while my dad was here he built me an amazing desk at the window to get back workspace lost when we moved the L-shaped desk out of the room and replaced it with a smaller desk. We had a window seat which basically was useless space so he tore the window box out and built a desk across it instead. It has an upper and lower surface so that I can store paperwork and other items just below the desktop. It's super nice and my dad worked so hard to create it for me and it turned out beautifully. We hired a guy to come mount the wall cabinets today and they look fantastic. Bob is in there now mounting his small flat panel TV in there and getting all the office equipment placed and connected. Once the office half of the room is all set up we can start the search for the right guest bed/futon. I'm going to first look for a used frame to save some money and get a new mattress/cover for it. Thankfully we were able to do this little room over on the cheap because although we needed to do it, now isn't exactly the best time money-wise with all these medical bills rolling in. Before I say good night, I'd like to give a shout-out and say special thanks to my friends Nicole, Melanie, and Brittany in Utah. They organized a team for their local Relay For Life and raised over $1000 toward cancer research this weekend. They walked all night long and into the morning in the pouring rain, in honor of me and others they know who have been affected by cancer. I'm so grateful to them for their dedication to the fight against cancer. Thank you, ladies, so much! I love you!

Wednesday, August 12, 2009

Cycle 2, Day 9: Farewell to my folks - for now

Today is a bit of a sad day for me as I just returned from dropping my parents off at the airport. I know they need to get home and sleep in their own bed and spend time with other family and get back to their normal routine. I would want to also after being away for the summer. And I know it was hard for them to leave too because they're worried about how I'll handle things without the extra hands. I worry about that too. I know I'm going to handle it just fine. I have wonderful friends and neighbors nearby who frequently offer their support and help. But it will be an adjustment not having two additional adults in the house 24/7 to help when I felt tired or needed to go catch some fresh air and clear my head on a moment's notice. And, there's nothing like having your mommy and daddy there to throw your arms around and get a much needed hug when life is so scary and uncertain, like it is now. I have the most amazing parents. They dropped their lives completely - including work and family commitments to come be here with me. Like my mom said this morning on the way to the airport "There isn't anything that could have kept me away." I'm so grateful for their love and support - they've always been here for me and my brother, no matter what. I'm truly blessed and I'll never ever forget that. They'll be back. They're even talking about returning in a month. I'm not sure they'll want to leave the comforts of home so soon though so Bob and I are going to find a way to schedule time for me and Cooper to spend a week or two in Connecticut with my family in the fall. I have two cousins that run in-home daycare so we'll look into leveraging their help during the weekdays while I'm back east so that I can still work while I'm there and have the extra hands and family support at night and on the weekends since things could become more difficult as I get through more cycles. So, I hold onto the fact that I will see them again soon - whether it be here or there - and that keeps me from being really upset about them now being on their way home. I love you so much, Mom and Dad! Words cannot express how grateful me and Bob are for your love and support. Now on to update about how I'm doing otherwise. Cycle 2 continues to be very least it has been with the round the clock help I've had here at home. I haven't had to do a lot that would exhaust me other than be up at night with Cooper when he was sick this past weekend and since then. It will be a good test for me this next week or two to see how I do without the extra hands to pass Cooper around to - particularly when Bob is away. We have a great sitter for the weekdays, but it's the nights and weekends that will be the big test - to see if I get enough rest when Bob is away and I'm solo with Cooper. It's good to test those waters now while I'm still on medical leave so that I can assess how it goes before I jump back into work. Which brings me to another group of people to whom I'm forever grateful - my employer and colleagues. I am so incredibly fortunate to work for the most amazing company, PwC. Not only do I have excellent medical benefits that are preventing me from financial disaster due to medical expenses - but they are so incredibly supportive and compassionate about my situation. They want me to come back strong and well and thus they want me to ensure my return is timed appropriately and won't negatively affect my treatment regimen in any way - assuring me that they'll be there for me when I'm ready to come back. That is priceless. I'm beyond grateful. I want the world to know that PwC truly is the best place to work (and believe me, I've got plenty of well-known past employers on my work history to compare them to). My colleagues at PwC are amazing - they contact me regularly to check in, sending notes and cards that brighten my day. I love you guys/gals! Today my prayer requests for those of you that pray for me is as follows: - Heavenly Father, please safely return my parents to their home in CT today - Jesus, please cradle my son, Cooper, in your love and light and protect him always from harm - Lord, please cure me of cancer forever (I know it's a tall order, but God can do this - I just know it!) I thank all of you for your continued prayers and positive thoughts. I know your prayers make a difference for me - I feel it every single day through the strength and courage you help to bring to me through those prayers. I love you. Dear cancer, You're not welcome here...please find your rightful place in oblivion. I have so much work to do in this lifetime that you just have no place in it anymore so please say your goodbyes. And if you think you're gonna hang around you'd better think twice because I'm only on round 2 of 8 of this liquid gold and then I'm gonna blast your a$$ with some radiation too for good measure.

Saturday, August 8, 2009

Cycle 2, days 4-5: doing great, but Cooper's sick :(

I've been feeling really good other than being exhausted from being up all night for a couple nights with Cooper who has come down with strep throat. :( I posted all about it to Cooper's blog. I've been concerned about the risk and effect of me catching it but the oncology nurses have assured me that my white blood cell counts have been great due to the Nuelasta shots so I should be OK even if I do catch it but they do want me to call the office if I become symptomatic and to keep an eye on my temperature and notify them if I get a fever. The first 24 hours that Cooper was sick I wore a surgical mask when holding him and also when I him to the pediatrician and my hands are dry from washing them so much. Thankfully I haven't had any symptoms and I am hoping and praying it stays that way. As for chemo side effects for these past couple of days - no new ones, and the ones from last time have stayed away too! Even with the lack of sleep from Cooper keeping me up the past couple nights, it's amazing how good I'm feeling other than feeling tired (and a bit grumpy from being tired). I mentioned this to my friend Michelle who is my chemo nurse and I joked with her asking her if she's sure the stuff (chemo) got into my body or if the dose is right. She said some people do really great with it and others just have a really tough time and some cycles will be great and others could be hard or awful. My only complaint is I have gained about 5-6 pounds back in less than a week's time even though my diet and activity hasn't changed so I think I am having the chemo water retention thing a bit. I'm not concerned about it though since I had lost about 10-12 lbs after my surgery just from changing over to a new organic and high protein diet and I have plenty of clothes to wear that fit me if I end up hanging onto these pounds for a while. Anywho, I'm happy that rounds one and two have thus far been good to me, with the second being easier than the first so far when comparing cycle days and I'm keeping notes (woohoo!!). I'm sure the exhaustion and lack of rest from caring for my sick baby boy is going to catch up with me if I don't do something about it asap so right now I'm going to log off and take a nap while the sitter is here watching Cooper and my folks are helping me out with the backlog of household chores that none of us could get to the past few days due to Cooper being sick and clingy and everyone being so tired due to the lack of sleep at night these past few days. This cycle isn't over yet but I'm happy with how it's going so far. I have 6 more to go - that's a lot. Many people end up with just 4 or 6 total. But I'm celebrating all the little victories along the way since we never know what we'll come upon down the road. Kind of like how this situation popped up - just when you're not expecting it - so smell the roses, enjoy the fresh air, play with the baby, cherish the good moments of all kinds because you just don't know what's around the corner, do you? Now I'm going to take a much needed nap. Love and blessings to all of you. Thank you so much for being here for me through this!

Me holding Cooper at the pediatrician's office on Wednesday

Thursday, August 6, 2009

Cycle 2, days 2-3: good so far

Day 2 is usually a breeze since the prerequisite anti-nausea meds and steroids keep me feeling good and that was true this cycle. Had the Neulasta shot and proactively added Aleve to minimize the related bone pain I felt big time on day 3 of cycle one..only took one this time (2 last time) and so far its working well and here on day 3 (when things start getting hard) I'm not in any pain. I think probiotics are helping avoid the tummy stuff too (it's early to say for sure but good so far) yay!

While getting the shot yesterday the nurse saw the flushing on my face and neck from the steroids and spoke with the doc who approved cutting the dose in half :). I as even able to fall asleep last night but didn't stay asleep because Cooper is sick and was up all night with fever and sore throat. He was seen by his doc yesterday and she has us using baby motrin and tylenol rotated to get his temp down so we did that all night and didn't get much sleep. I have to wear a mask while I hold him until we get his strep throat test results back which hopefully will come in today.

Thanks for all the notes and blog comments and FB comments - keep em coming because they help keep my spirits up :).

Blessed and grateful,

PS - my friend Katie's dad, Pat, is going through chemo and radiation simultaneously and that's some rough stuff and he is experiencing a tougher time and could use our prayers for an easier go of it. Please add Pat tp your prayers and positive thoughts in the coming days and weeks ahead. Thank you!

Sent from my Verizon Wireless BlackBerry

Tuesday, August 4, 2009

Cycle 2-Day 1: "That's normal"

Just back from my 2nd chemo infusion (6 more to go) and it went even smoother than the first :). The first time they weren't able to draw blood from my port and had to use my arm which was fine but I was hoping it wouldn't become a trend and thankfully they got it from the port today. Then, within a few minutes I was informed that my blood work looks "perfect" and we could proceed. I popped my Emend pill (anti-nausea med #1) and then they started the first infusion of benadryl, anti-nausea med #2, and steroid. After that came the Taxotere which takes about an hour, followed by Cytoxan which takes another 30 minutes. I envisioned the medication as God-given liquid gold cleansing my body of any bad cancer cells.
The first time I went in the doc had suggested that I take an Ativan in advance so that I wouldn't be anxious and upset. I was super sore from the port placement the day before so I also took a Percocet for the pain. By the time I sat down for the infusion I was high as a kite! LOL Bob was laughing at me as I slurred my words ever so slightly - just enough for it to be noticeable - he's lucky I didn't sign him up for an infusion LOL. This time, I didn't need the Ativan or the Percocet. Instead, I used numbing cream over the port site a couple hours before the appointment to lessen the pain of the needle puncturing the skin above the port. It helped but didn't entirely eliminate the feeling but that's OK it was over quick.
Dr.B came in to chat with me about the effects I experienced in the first cycle and he indicated that most people on this cocktail experience similar effects in subsequent cycles (in other words, although each person may react differently, their reaction is likely to repeat over the cycles they receive) so we're hopeful and optimistic that things will continue to be as manageable as they have been thus far. I did have some bad days where I was just exhausted and achy but I'm OK with that. I can work around that, on many levels. I have amazing friends and family who have been here to help too which has made those days easier to deal with.
While chatting with Dr.B, I told him I've had pain in the bottom tip of my ribcage on the left side and that when I run my hand over that area I can feel something that moves as my hand passes over it - something that is not present on the right side. I noticed it just over a week ago and have been silently freaking out about that and praying hard that it's not you-know-what and visualizing the shrinking and elimination of it if it were you-know-what. Dr.B felt it and said it is a nodule that is on both sides in that area and when the area is sore or if it's irritated by excessive touching or an injury (surgery, being kicked by a 13 month old, etc) it will enlarge...he continued and said "that's normal." Music to my ears! Phew!
Anyway, I brought the laptop to the appointment this time since I knew I wouldn't be all doped up on anti-anxiety and pain medication haha and was able to be online for a bit which helped time pass quickly. I even sent Bob over to the hospital cafe to get me a snack and he returned with some yummy cookies. Thanks Bob!
I didn't have any adverse reactions to the infusions - another victory. :)
And, just like last time, I was blessed to have Michelle as my chemo nurse. She is so awesome. I love that I've known her for nearly three years as a friend and a neighbor before she became my chemo nurse. She has such a gentle and caring touch and we get to chit chat and make plans for upcoming get-togethers too. I love it and I love Michelle!
I believe my extra prayers last night for a smooth infusion appointment really helped (along with all of your prayers too - thank you so much)! Everything went super well. God is great!
After we left, we made a pit stop at Whole Foods for some supplies and then we headed home. I'm determined to have a manageable cycle just like (or even better than) the first.
Love and blessings to everyone!

Monday, August 3, 2009

Resting up for round two

I took a beautiful 2.75 hour nap today (thank you, Mom & Dad!) to get some much needed rest before my next round of chemo which is tomorrow morning. I'm really hoping that round two is similar to the first since the side effects were manageable (annoying but bearable). I found it interesting that the side effects were spread out over the three weeks. They were most bothersome in the first week, but lingered into week two and three - thankfully they were less annoying as time went on until the third week when I finally felt really good - just in time to start all over haha! We had a nice weekend in San Diego - trying to be sure I take advantage of the really good feeling days. We took Cooper to the zoo and to Sea World. I did pretty well since I had the stroller to lean on, and the outrageously expensive food outlets to stop at when I would start to wear out. Cooper's favorite things he saw were the monkeys (which he has been imitating ever since) and the manatee tank with the giant manatees and beautiful fish. My favorite is always the orca/killer whale show...they are so beautiful and amazing. I think it's funny how baldy (me) and the baby are the only ones that didn't get a nasty sun burn this weekend because we used baby sunscreen 50+ spf. I'm ready for my next dose of liquid gold - that's what chemo is to me - God given liquid gold that is going to cure me of any radical cancer cells floating around in my body. Look out, bitch, we're coming for ya! :)