Wednesday, September 30, 2009

I met Bernie Siegel!

This past Saturday, my mom and I went to Sturbridge, MA to participate in a workshop conducted by Bernie Siegel, MD. Bernie is a well known surgeon and author who works with cancer patients on the mind body connection. When I was first diagnosed I knew I needed to approach the situation holistically. I also knew, from helping loved ones with cancer, that Bernie's teachings could help me so I dove into his Love, Medicine & Miracles book to refresh my understanding of his philosophy. It helped me get into the mindset and. E the exceptional patient' - serving as my own advocate while seeking and receiving treatment from various physicians and healthcare providers. His message helped me stand up to the unprofessional staff at a local hospital when I went to have my port surgery (and walked out when treated badly). He helped me understand the power of intention, meditation, and imagery on the healing process.

When I was looking at Bernie's website one day and discovered he would be speaking not far from my folks' house during my visit I immediately bought tickets. I figured it be a huge gathering and there would be little chance of meeting him. I was wrong.

As mom and I approached the doors of the workshop room she spotted Bernie having lunch at his book signing booth where his son was working on book sales. The signing had not begun and nobody else was standing there so we approached so that I could thank him for helping me through this challenging time. He rose to his feet, walked around to my side of the table and gave me a great big hug. I purchased a few more books so that he could sign them for me and we chatted briefly before heading in for the workshop. We learned that Bernie's son runs a store in my mom's town and Bernie conducts a support group there monthly! It was amazing to meet them and now that I know about the group in Simsbury I will plan my next visit to allow me to participate and learn even more from Bernie.

For the workshop Mom and I found seats right up front. Bernie asked me, before he began, what I'd like to hear/learn about and I told him I needed help quieting/turning off the scary thoughts that creep into my mind and replace them with healthier, more positive thoughts. So he used that as an underlying theme and referenced it several times.

I know God put Bernie in Sturbridge when I would be nearby...and cleared the crowd so that I could meet him and get a much needed embrace from this inspirational man that day. I thank Him for this miracle and so many others.

Sent from my Verizon Wireless BlackBerry

Sunday, September 27, 2009

Knowing one's limits and asking for help

Preparing for this trip (to CT to visit family before the new chemo regimen begins) has been a good reminder to me that I need to be vocal about how I'm feeling and what types of help I need from others, including Bob. We had a dinner out one night before the trip and Cooper was a major handful and I was exhausted from just 5 minutes of following him around the restaurant when he refused to sit in the highchair. Bob didn't want to stay and eat (nor did I at that point) so we got the food packed up to go home. I think I blogged about this on Cooper's blog. Anyway, in the car on the way home, the discussion began about the process involved with getting onto an airplane, and I was panicking. I'm a seasoned traveler - by myself or with other adults - but I was terrified of this trip. If I can't chase Cooper around a restaurant for 5 minutes without feeling totally worn out, how would I survive having him in an airport as stand-by, non-revenue passengers (meaning, at the bottom of the stand-by list) if we don't get on the first or second flight options and end up stuck in the airport. Or, how will I manage to get me, Cooper, the car seat and our carry-on bag to the airplane and buckled in without help. I envisioned us getting to our row, placing Cooper in the airplane seat while I put his car seat in place and him jumping down and crawling around the plane while I fumbled and fretted. I envisioned his car seat wheel attachment thing helping us get TO the airplane but failing to fit down the aisle and leaving me having to find a way to carry him and his seat to the back row of the plane - which frankly would have been impossible in one trip. And this doesn't even include the visions I was having of what could happen at security. I explained my fears to Bob and he agreed that it would be too much for me to handle alone and we decided to use his employee discount to get confirmed seats (instead of stand-by) and to leave on the same day that Bob would leave for work so that he could ride the jump seat on the same plane as us on the first leg so he could help me, at least for part of the way there. I am so glad we did that because even with his help and even with Cooper being a great little traveler that day it was still hard and exhausting. The first flight had an airplane with a narrow aisle and sure enough that car seat and wheel attachment did NOT fit down the aisle so Bob had to carry it back to our seat. If I had been alone I think I would have turned around and just stayed home. Bob knew it would fit down the aisle of the second flight and our return flights (since the plane we would be on is the same one he flies and we compared the width of the carseat to that of his rollerboard suitcase) so he was confident I'd be able to manage things solo on that next leg of the trip. I wasn't so sure but I had no choice at that point since we were in Minneapolis. Unfortunately, there were no Delta or Northwest direct flights from LA to Hartford, otherwise we'd have chosen one. On a funny note, since Bob was on his way to work and was in uniform, he got a lot of funny, perplexed, looks from people as we walked through the airports and the plane - here's this pilot pushing the stroller through the airport and carrying Cooper down the aisle of the plane. One passenger even looked up and said "not THAT'S service!". Cooper was a good little traveler in spite of the fact that he barely slept the night before - we had to wake him at 3:30am to leave for the airport. He fussed the first half of the first flight but slept the remaining time. Then it was time for the second flight from Minneapolis to Hartford. I was sweating it - literally. But I managed to preboard with other disabled passengers and pull Cooper down to our seat where a wonderfully sweet flight attendant was standing with her arms out to take Cooper while I got his car seat into the airplane seat. We got all our stuff stashed away and I was so proud that it was uneventful. Then someone approached and informed us that Cooper was in his seat. Ut oh. Turns out I put us on the wrong side of the row. I put on my "oh my gosh I'm so sorry" face which, combined with my glaringly hairless head, must have elicited some sympathy because everyone that was supposed to sit on the side we had settle into was happily flexible and willing to sit on the opposite side. Phew! Everyone was boarded but for some reason we were still sitting at the gate when the pilot announced there was a mechanical issue with the plane and that they were trying to determine whether to fix it or switch planes. Ugh. As soon as the pilot stopped talking, Cooper started wiggling and whining. But, ta-da! There was that wonderfully sweet flight attendant again, standing in the aisle with arms out saying "let me take him for a walk". I love this woman. She took Cooper up and down the aisle, and to the cockpit for a visit. I KNOW God put this beautiful woman, Edna Johnson, on my flight that day. About an hour into sitting there waiting we got another announcement - we were switching planes - everybody, passengers and crew, had to deplane and go to another gate which was very far away. This is where another miracle happened. When we got off the plane we discovered that the ground crew thought they'd do us a favor and transfer the strollers to the other plane for us. ;/ Unfortunately, I needed ours to get our carry on bag to the other gate without hurting myself or dropping from exhaustion. Luckily, Bob was standing there when we got off the plane. I had called to tell him we were delayed and that they were trying to figure out what to do and he stuck around at the gate to wait to see what the outcome would be - just in case. God bless this man! He helped me drag Cooper, the car seat, and the carry on bag to the next gate which was really far away. As soon as we got there we preboarded again, received similar help from the same flight attendants, and got on our way to Hartford. And, Cooper slept nearly the entire flight. Like I said - little miracles all around me. People really do want to help out but most people don't know how until you tell them - including those closest to you. There are angels who anticipate and see what your needs are, and I've been so fortunate to have a number of those come to my rescue since my diagnosis. Then there are those angels who need to be asked, but who will jump at the opportunity to help. But, neither type of person can help if you're not putting your needs out there in some form. We have to ask. We have to be willing to admit that we can't do everything for ourselves the way we once could. That's hard to do when you've spent your life being the helper, the caregiver of others, the independent one that supports themselves no matter what the situation. I had learned to ask for help during my bed resting pregnancy but it wasn't easy and although I've been in that situation before, it's not easy this time either. I don't like admitting that I can't be on my feet for very long or that I can't lift more than a certain amount of weight because I had so many lymph nodes removed and am now at risk for lymphedema, or that I have some cognitive impairment due to the "chemo brain" phenomenon. But, I have to. I have to admit these things to myself and others and get help so that I don't overdo it and hurt myself or cause myself stress which is known to make treatment less effective. And, although I'm doing very well on the chemo, it is affecting me in ways that make life challenging and sometimes I hide that fact from those closest to me so they won't worry or be afraid but I think this is causing some of them to forget that I have limitations and that they can't expect the same things from me right now. I get frustrated thinking I shouldn't have to remind them but then I realize that it's my own fault that I have to because I'm always saying how great I'm doing and not talking so much about the difficulties or effects that interfere with every day life (like the exhaustion, peripheral neuropathy and short-term memory impairment, things like that). I don't want to be a complainer because I really do feel so blessed and lucky to be doing as well as I am compared to people I know who have had, or are now having, a really really difficult time in their treatments. But I have to be honest with myself and others in order for me to get the help that I need. So that is my challenge - to remain positive and focused on what's going well while also being open about what's hard for me and what I need more help with (more rest -while awake and more sleep time, help carrying stuff, etc.). After all, I'm only half-way through chemo which brings with it cumulative fatigue and affects - so I have a long road ahead finishing this part and going on to surgery and radiation too.

Thursday, September 17, 2009

Chemo cycle 4, day 3 - halfway done with chemo!

Tuesday (9/15/09) I had my 4th chemotherapy infusion, followed up by a Neulasta shot the day after to boost production of white blood cells to prevent infection (as per usual protocol for each treatment). Both appointments went well and I'm on day 3 today which is the last day I take the precautionary steroids and anti-nausea meds. The steroids are annoying because they keep me up at night and make my head, face and neck red even though they cut the dose in half after cycle 2. It's not as bad as before but the part about keeping me up at night is a real bummer but that's OK it's just the first few days and then after that I just deal with my hot flashes and Cooper wakings to interrupt my sleep haha. :) I'm not complaining though, I promise - just updating. Prior to starting the 4th treatment, my blood work was run (standard procedure) to check my white and red cell counts...and they came back great - each treatment the #s are slightly lower than the previous but the doc says even though the levels are below normal for a healthy person, they're considered strong for someone undergoing chemo. Last time I had some stomach issues very early on (I think first night and into next day or so) but not this time thus far. No bone pain from the Neulasta either - I didn't even take the preemptive Aleve prior to the shot like last time - maybe I was feeling I didn't need it but I really just think I forgot (chemo brain) LOL....but so far haven't needed it...we'll see how the rest of the first week goes. This was the final dose of the first chemo series prescribed for me. Going forward I'll have the new regimen of carboplatin+gemzar for 4 cycles which are administered on day 1, day 8, then off a week and start again the following 2 consecutive weeks of chemo (instead of just one visit in the first series). I'm told that this cocktail could be harder but the doc seems to think I'll do well given how I've done thus far. I told him whether I fly through it or struggle through it makes no difference as long as they're giving me the best most effective cocktail for the type of cancer I had/have - what matters most to me is that we kick it's ass and if that means praying to the porcelain bowl for days on end, so be it. Survival is what matters here. Somehow this seems to amaze them when I talk that way - I don't know, maybe more often people are afraid of the side effects and I'm not saying I wouldn't be a mess if/when they hit me the way it's hit others I know or have read about - I'm just saying that I'd take that over a less effective approach/drug that would allow the cancer to spread or come back. I can't remember if I posted what other side effects I had last cycle so I apologize if this is repeat info...I'm too tired to go back and read what I posted (sorry). So, basically it was fatigue (worst yet), ongoing eye twitching, chemo-brain forgetfulness and occasional silly mix-ups like putting something in the frig that didn't belong there (can't remember what it was but just that it happened - there's an example right there of the forgetfulness), and I dropped and broke two things from slight tingling in my hand/fingers on one hand but was reminded that adding the glutamine supplement to my cold drinks could stop that initial sign of peripheral neuropathy from progressing and sure enough it did correct it which is really good because if it had progressed they might have switched my dose or change the drug or whatever because that can become an irreversible condition - scary. Now, it's possible I'll have it come back or progress with the new cocktail in the final treatments but we have to just wait and see. But for now it appears resolved. I didn't have much leathery mouth like the previous 2 cycles so that was nice though it wasn't horrible when I had it either...just weird. Oh and a little bit of strange pelvic aching (not painful, just weird and weird physical feelings just make me nervous now so I mention everything to the oncologist when we meet and he examines me if he thinks he needs to check it out) which I presume is related to the shutdown of my ovaries - I mentioned it to the doc and he seemed unphased which is good. I also had 3-5 days of tightness in my throat gland area this past week so he felt my glands and didn't feel anything bothersome which was a relief and said I was probably exposed to something and am fighting it off. Lastly, I'm carrying about 5-7 lbs of water retention which is typical with chemo especially if you're not nauseated and vomitting and it can increase over time so I'm sporting a puffy chin/neck (and a little bit all over but not too noticeable except when getting on the scale) which isn't so lovely but it'll go away with time after treatment is over so I'm not concerned about that. So I think that's it...all manageable and tolerable - praise God!! I had a great meeting with my sister breast cancer warriors in my support group today. I love these women - they "get me" and I "get them". There are just some things that only someone who has been there or are going through it now can truly understand. I will really miss being with them the next two sessions due to my upcoming trip to CT. I depart on support group day and will be away for about 10 days so will miss the week after too :(...I'm gonna miss it but I'm going to really enjoy the cooler temps, crisp fall air that will greet me and Cooper in CT...but most of all I'm psyched to see family that I haven't seen in quite some time and to finally properly celebrate Cooper's first birthday, even if we're 4 months late doing so. OK...I'm pooped and Bob is home tonight (yay!) so it's time for some quality time and much needed hugs. Thank you all for your support, love, prayers and's instrumental in keeping my spirits up which is key to my progress. So, thank you, so very much! Love, Julie

Saturday, September 12, 2009


Wrapping up cycle 3, small miracles, and plans (LONG)

In just three days I'll receive chemo cycle 4 and will be halfway through my chemo treatments. So far, I feel really good. I feel strong and fortunate to have had very minimal side effects and those I have had have been manageable, especially with the support and assistance from family and friends to which I'll be eternally grateful. The hardest part for me in cycle 3 has been the fatigue. It really hit me like a brick wall, and early on in the cycle too. Everything I did exhausted me - even walking down the stairs in the house. But I refused to let it change my life and keep me from being the mom and wife I need and want to be. I pushed forward and through it. Sure, I cried - a lot even. I called and texted Bob while he was away and whined and cried about how tired I was and how hard it is at night when I'm alone and just need decent sleep but can't count on getting it because Cooper doesn't consistently sleep through the night. I prayed and prayed for strength to push through the fatigue and for more opportunities to get the sleep I needed. And as soon as Bob got home from his trip and took over with Cooper things immediately got better and I got the sleep I needed and felt so much better. Cooper is sleeping better - still getting up 1-2x per night but mostly just once unless he's teething (which he is again right now ;/). Last Sunday was a test day for me though. I was determined to get Cooper to church with me since I'm trying to find a church home here and I need to visit a few before I decide where we will go each week. I had a plan and was excited to visit a church I had researched and got Cooper and me dressed and ready to go. I buckled Cooper into his car seat and I got in and went to start the car and it was completely dead. No lights came on at all. My car is only 3 years old with less than 40k miles on it and had JUST been serviced. I got out, took Cooper out of his seat and he started to have a tantrum because he LOVES to get out and about - he has much better days when he spends half of the day out of the house and he's easier for me to handle that way too since I can put him in his car seat and then the stroller and know I don't have to chase him around, especially now that he's walking. So we came back in the house, called roadside assistance and waited for the tow truck to arrive for a jump start. I turned on the TV and there was Joel Osteen, a preacher I know of but whom I haven't followed - nor have I ever sat and watched worship services on television...until that day. I watched the last half of the service on the television and was amazed to realize that I was hearing the EXACT message I needed to hear that day. I knew at that moment that my car was MEANT to be dead that morning so that I would hear what I needed to hear. I am amazed by these small miracles I experience every day - that probably happened pre-diagnosis but I just wasn't paying attention. I am now. The truck arrived and they got my car started and I was instructed to drive it or let it sit running for 30 minutes minimum. By then it was Cooper's nap time so I decided to put him in the car seat and start driving around to see if I could find a couple of the churches I wanted to visit. We were too late for the service but I could at least get prepared by knowing their locations and what the parking situation is like. After all, I needed to drive for at least 30 minutes, but with Cooper napping it had to be more like an hour or longer - so I drove and drove all over town. That's when a second miracle presented itself. I got lost in a section of town I wasn't familiar with and as I was turning a corner I spotted a sign with the name of a church I had visited with my friend, Kristy, the week prior. I had hoped there was a sister church in my area (the one close to Kristy is nearly an hour drive for us) but I couldn't find any info about it online and had planned to call the church in her area to ask about it but hadn't gotten around to it. But there it was! A branch of their church right here in town - just 3 miles from home and I found it "accidentally" -- well, I don't believe it was an accident at all. I noted the service times and decided that's where we'll be going this week - so tomorrow morning that's where we'll be. The week after we'll visit another church, and then yet another the week after that before making my decision as to where our new church home will be. I say farewell to chemo cycle #3, my prayers have turned to focus on two treatment related requests: first, that cycle 4 is as manageable as the previous 3, and second, that the new chemo drugs that I'll be receiving for cycles 5-8 will also be tolerable and successful. The new drugs are known to be much harder to take, with more side effects than the drugs I've had thus far. I'm determined to leverage my strength, my faith and my support network to get through it, no matter what it may bring. I want and NEED it to work - my God-given, liquid gold, cure juice. Before I switch over to the new chemo drugs, we're going to make a trip back east to visit with family. Since we don't know how the new chemo will affect me and I'll be on it til just before Christmas (then comes surgery then daily radiation for 7 weeks), this is really my only chance to get Cooper back there before the height of flu season occurs. He and I both are highly susceptible to things like that so we want to get out there now and introduce him to my extended family members and FINALLY give the poor kid his first birthday party which he never had since his birthday was immediately following my double-mastectomy surgery so we postponed the party we had planned for him. It will be wonderful to see family that I haven't seen for many years...and for them to meet the loves of my life - Bob and Cooper. It'll probably be a hard trip for me since I have to get out there on my own with Cooper while Bob is working, but he'll meet us there and travel home with us which will be good. I'm nervous about traveling but excited too. I know that once I get there I'll have a ton of help with Cooper so I'll be able to get the rest that I need, day and night. Just a couple days after we get back from the trip I will start the new chemo regimen which will either be Carboplatin + Gemzar, or Cisplatin + Gemzar. I'm waiting on the guru (Dr.Glaspy) to get back to me with what he feels is my best shot. I am thanking God every day and night for the countless blessings He bestows on me. My faith has not been consistent in years past but it's always been there and now it is among the most critical components of my cure equation. He got me through so many incredibly challenging times of my life and this is another time I know and trust that He will carry me through. He's already given me the most amazing support network of family, friends, colleagues, doctors, nurses and medicines for my fight...I just know and trust He will finish the job and cure me. My friend, Cindy, gave me a Bible verse to keep with me and it is posted by my bedside and helps me every day. Thank you, Cindy! It says... "I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear, I will help you." Isaiah 41:13 I wouldn't be human if I wasn't afraid - sometimes I am absolutely terrified. But I have faith, hope and determination that I will be OK, no matter what. He will make sure of it. Love, Julie

Saturday, September 5, 2009

A special promise

This afternoon I brought Cooper to his room for a nap. He was tired but he didn't want to nap and tried to wiggle out of my arms in the rocking chair where we start put naps and bed time. He even signed "all done" three times to make his point. But mommy knew he needed a nap so I stood up and held him close and began to dance with him and I looked him in the eyes and said "Let's dance." and he smiled. I told him "We will dance today and we will dance on your wedding day. Deal?" He smiled again and then put his head down on my shoulder and fell asleep.

I love him so much. I fight for him. I will live for him. Nothing and nobody can take me from him. That's all.
Sent from my Verizon Wireless BlackBerry

Thursday, September 3, 2009

Get a massage AND help find a cure!

Massage Envy is partnering with Susan G. Komen for the Cure to raise money for Breast Cancer cure research. On September 15th, get a $35 massage and $10 of it will go toward the local affiliate of Susan G. Komen for the Cure. Here's the link to their site with details. Who doesn't need a great massage, at a great price, that could help save lives too!!!???