Tuesday, December 29, 2009

Did I say tonight? I meant tomorrow night.

Earlier today I blogged that we planned to have our Christmas celebration tonight. We charged the video camera and while Cooper had his afternoon nap I started to put together a great riding toy that cousins Missy and Nicole and aunt Susie had sent for Cooper (thank you so much!). I opened the box, grabbed the manual and right away I realized it needed to be charged for 18 hours before it can be used so I assembled it, plugged the battery in, assembled another toy and then made dinner. At first we were thinking we'd still go ahead and have Cooper open his gifts tonight. Once he was up from his nap we had dinner. About an hour later he got sick - all over himself and me. I'm not sure if it was something he ate (probably - there was at least one new thing he'd never had before - plus he'd been acting fine/normally leading up to getting sick) or if it's a virus that caused it. Either way, we want him to feel good when we have our family Christmas celebration so we decided to wait until tomorrow. Hopefully he'll be feeling better and at least we know his exciting new toy will be charged and ready for him by then too. I'm so excited to see his reaction to the fun things that await his discovery.

Gifts of all kinds

First, I want to say how wonderfully lucky and blessed I am to have such amazing friends and neighbors who have helped me and Cooper to celebrate Christmas in Bob's absence. Because of Bob's job as an airline pilot, he is almost always is away for the major holidays and he was away from the 24th until last night. We missed him and wished he were here with us but we had the best time possible with friends and neighbors who included us in their celebrations. We joined several neighbors at our neighbor Susan's house for Christmas eve and it was fantastic. Super great food (you're a great cook, Allen!), amazing company (we love you Cindy, Dan, Greg, Denise, Clare and John and all the kids!), and it was fun seeing all the bigger kids play with Cooper. Thank you, Susan and Allen, for including us - you are wonderful hosts and friends and we love you! On Christmas day, Cooper and I headed out to join our dear friend Kristy's house where we were welcomed by her awesome family and we had a super time getting to know members of her family that we had not yet met, and watching Cooper and Addison Shea (who is just 3 days younger than Cooper) get cozy. I can't wait to see the pictures Kristy took of Cooper and Addie kissing at the end of the party - it was hilarious! Kristy & family - thank you so much for including us in your family Christmas celebration. You are an amazing friend and I love you so much! Although we were apart from our own family on these special days - with Bob being away and my family being 3000 miles away in Connecticut - we enjoyed the gift of amazing friendship, love, and generosity from the most beautiful friends a person could hope for. Besides those we saw in person, we received phone calls, emails, instant messages from many many others wishing us a blessed Christmas and checking in to make sure we were ok since Bob was away. Christmas is over for most people now, but for us it continues now that Bob is finally home. We didn't open any of the gifts that we bought for Cooper or which have been sent to us by others - they are all still unopened under the tree. We are planning to have our family Christmas celebration tonight now that we're back together as a family. It'll be a beautiful and memorable evening here at the Olsen house. We have received gifts of all kinds this holiday season. Friendship, support, love, generous and thoughtful gifts under the tree awaiting their disclosure. The most important gift of all though - the gift of life - which we cherish the most. Bob is home safely, I am alive and doing well with treatment, Cooper is happy and healthy. I praise God for these miracles that surround us every day. Thank you, God, for these gifts.

Friday, December 25, 2009

Merry Christmas!

Merry Christmas! Happy birthday, Jesus Christ! I'm so blessed, so thankful, for all the countless blessings in my life - including all of you who support me on this journey. Thank you for your kindness, your compassion, your encouragement. I wish you all a very merry and blessed Christmas. May God bless you and your loved ones, today and always. Love, Julie

Wednesday, December 23, 2009

One week post-chemo, Christmas preparations in full swing

Thankfully, I am feeling a bit better each day. I am still out of breath quite a bit but it seems like each day it's a teensy bit less so. That is a relief because a couple days ago I was rethinking my decision about having a blood transfusion and yesterday I made some calls to find out what it would take to arrange for a private blood donation from a very generous friend who is O- (universal donor blood type). If each day continues to be a bit better then I will wait and have my numbers tested next week to see where I'm at before proceeding with a transfusion. If my red blood cell and hemoglobin counts are still extremely low next week then we will proceed with a transfusion so that I'll feel better and be more ready, stronger, in time for surgery mid-January. I've been very busy with work, getting ready for Christmas, and looking ahead to the next chapter of treatment (even had my first radiation oncology consultation yesterday - more on that later). I've baked more (cookies, brownies, banana bread, muffins) these past two weeks than I had probably in all my previous years combined. Doing so is not strenuous, allows me to sit and rest while they bake, and makes me feel productive and festive. Besides baking, I've finished wrapping the gifts, distributed baked goods to our beloved neighbors and friends, and even hosted a little get together "gold party" this week during which my friends and I made some great spending money by selling our unwanted jewelry to a rep from a local gold refinery - it was a lot of fun. Bob was home and helped do a lot of the legwork so that I wouldn't do more than I could/should handle. Esperanza was super helpful too, helping to clean up and do laundry while Cooper napped. We're so lucky to have her. Last night I had a few of the neighborhood teenage girls over for dinner (had lots of leftovers from the party) and to decorate the sugar cookies I baked. It was great fun decorating the cookies and watching Cooper have an absolute blast being silly with the girls. I'm excited to officially be on holiday break as of tonight and am looking forward to the fun Christmas eve, and Christmas day festivities we have planned. Staying busy helps me focus on the positive, staying rested while being so busy is challenging but important so I do my best to be both busy and rested. Sounds funny, doesn't it? Well, Christmas eve day is upon us now. I hope everyone is ready - or at least accepting of (and not concerned about) not being ready. :) I wish you all the most wonderful, safe, peaceful and love-filled Christmas. Cherish each moment and hold your loved ones close. God bless you! Merry Christmas! Love, Julie

Friday, December 18, 2009

A nice break at just the right time - the holidays

Now that chemo is done, I'm enjoying not having to make my way to the doc's office every morning for a shot in the rump (Neupogen). Don't get me wrong, I love the nurses and staff at my doc's office, but it's great to not have to plan every day around a doctor's appointment and even better not feeling like a pin cushion. So far, the side effects of my final cycle are similar to the previous one - mainly swollen and backed up salivary glands, overall body aches, and due to the anemia I'm extremely tired all of the time and frequently out of breath. I'm taking a decongestant to aid in thinning out my saliva to clear up the glands, and just taking it easy to prevent anemia related accidents or issues. I can't carry Cooper for more than a minute before I need to set him down and catch my breath. When we need to go up or down the stairs, I let Cooper go up and down with me right behind or in front of him which he seems to enjoy and prefer anyway. Thankfully, I have not had any dizziness - just shortness of breath and occasionally a teensy tiny bit of light headedness. If I still feel this way by New Year's I'll reconsider the blood transfusion, but I'm hoping that won't be necessary. This is the most tired and physically limited I've felt since the bilateral mastectomy surgery. Even though I'm definitely experiencing the "chemo brain" phenomenon, I do feel clearer and calmer than I have in a really long time - though I admit this is something that comes and goes - sometimes day to day. My sister warriors and I in support group often refer to this as the perpetual roller coaster. I've decided to get off the roller coaster for the holidays and focus on my family and friends, as much as possible, while also working on regaining my strength so that my body will be ready for the next big step in this process - implant swap-out surgery in January. Oddly enough, this type of "work" involves mostly sitting/laying around. Since I'm so frequently out of breath, I'm not able to do a whole lot other than slow stretching and strength exercises. I'm looking forward to resuming my walks but it could be a while before I'm able to and that's OK - just another goal for me to work toward. Keeping up with Cooper (who turns 18 months old on Monday!) is getting harder and harder these days when Bob is away so I've been lining up help on the weekends now in addition to the normal week day help so that I won't get run down and overwhelmed and Cooper will still get the stimulating play time he needs as well. I'm looking forward to this weekend very much. We'll be attending a neighborhood holiday party on Saturday. On Sunday I'll go to church and finish up on some holiday baking and preparations thanks to the much needed and appreciated help from Esperanza and Susan who will be helping me with Cooper this weekend. I'm not sure how much I'll accomplish and I don't plan to push myself - I'll just try to enjoy doing what I can and whenever I get too tired I'll rest and watch Cooper play because that always makes me feel better. When I was a kid I really loved the holidays. I have lots and lots of cousins and we used to all gather at one house on Christmas eve to eat, play and open gifts. As the years went on our families started going in different directions for the holidays for a variety of reasons that are not uncommon to most families - loss of key family members, people getting married and sharing the holidays with in-laws, etc. When that happened it just wasn't as much fun anymore and gradually I became one of those adults that sort of dreaded the holidays. I enjoyed seeing my cousins' children having a good time, and I enjoyed sending holiday cards out but that was about all the joy I managed to find during the holiday season and usually just looked forward to the holidays being done with for the year. I didn't think I was sad at the time but looking back I am pretty sure I was depressed every holiday season. A lot has changed since then. A lot. Cooper's arrival into our lives changed everything for me last year and now that I've had cancer we have even more reason to find joy in every holiday - in every day. That's why every day IS a holiday for me now, regardless of what is on the agenda, as I wake up grateful for another day and chance to live and appreciate all of life's blessings and challenges. Every holiday is a new milestone for me and my family now. Now, I cherish every day and every holiday like never before. I wish all of you joy, love, and laughter this holiday season and all throughout the year. Make every moment count!

Tuesday, December 15, 2009

Wow and woot!

I'm at the cancer center. I'm hooked up and receiving my final dose of chemo (aka God given liquid gold cure juice)! I'm so grateful. So blessed. So happy. Tears keep streaming. God is great.

I'm very anemic. 8.3. But doc is letting me decline a blood transfusion since this is my final dose and I have a good amount of time before surgery and radiation in case my numbers remain low and we need to get transfused or have any other interventions. I am getting a shot to aid in raising my rbc count but its effect is limited usually. I have faith that it will all work out.

Did I mention that I'm immensely grateful and blessed?

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Monday, December 14, 2009

Chemo cycle 8, Part A, days 3-4: Toughest of all

I remember, not long ago, posting an update during either cycle 4 or 5 and saying that I'd experienced my most difficult part of chemo yet at that point. I remember feeling a bit defeated - disappointed that I'd been experiencing that rough patch after having such a sense of accomplishment from sailing through it so well up to that point. Each time I have gone in for a chemo infusion, my doctor has looked at me and my numbers, raised his eyebrows and smirked at me and said things like "you are doing extremely well", or "you are handling all of this extraordinarily well" and I feel a surge of pride and accomplishment when I hear that. And I remember the horrible sense of failure I felt both times that I went in for cycle 5, part B, and was told I would not be getting part B because first my WBC count was too low, and then my platelet count was too low. The doctor and nurses had to convince me that it is a common occurrence and that it was surprising it took 5 cycles for it to happen to me. I remember thinking "but I'm an exceptional patient so why isn't my body cooperating?" (for those who are thinking that is awfully conceited of me to think/say, I want you to know it's a reference to a specific patient type described by Bernie Siegel in Love, Medicine and Miracles). I guess it's true that I'm an over achiever haha. Many times I hear from friends, family, colleagues, strangers even, that they don't know how I'm managing this while caring for a toddler and have a spouse that is away more than he's home due to his job, and working (albeit part time temporarily) - all while on a very aggressive chemo regimen. When I hear that I immediately think to myself "what choice do I have?". I suppose I really do have a choice - I could do what I've been doing which is look on the bright side, make every day/hour/minute count and do my very best to not let the situation negatively impact my life and that of my family's, or I could let the negative thoughts and feelings take over my mind and my body, allowing it an opportunity to manifest itself in many more side effects, keeping me feeling awful all the time, taking out my fear and frustration on those around me, etc. To me, that's not much of a choice - that last option just isn't an option for me since that is not who I am. When this cycle (8A) nearly brought me to my knees with the nausea, exhaustion, shortness of breath, burning belly and related digestive issues, and all over body aches and pain, I did my best to ignore it but it wasn't wanting to be ignored, unfortunately. I kept my commitments and I kept the anti-nausea meds close by at all times. I took extra naps whenever the opportunity arose, and I forced myself to eat even when I felt like I could skip food for a week. I was so glad I'd done the majority of my holiday baking and gift gathering and packaging before receiving this cycle because I doubt I would have gotten it done otherwise. The worst days were this past Thursday and Friday (days 3-4). Everything I did felt challenging, particularly because of the shortness of breath from the anemia - I was completely exhausted all the time. I didn't go out unless it was necessary or I had an appointment or support group scheduled. When home, I stayed off my feet, forced myself to eat and rest, and sought out distractions for times when I couldn't sleep to keep my mind off of how I was feeling. I had trouble drinking water and found myself giving in and drinking more ginger ale and fruit juice dilluted with water. I still felt crummy on Saturday but I was very happily distracted spending the day and evening with my "little sister" and her older sister who I took out for a day (had a sitter take Cooper for the day) and had the girls spend the night for a girls' night of homemade organic pizza, movies, and baking cookies :). Then Bob came home on Sunday and everything seemed/felt better by that point. I feel fairly confident describing those days as being the worst of my entire chemo regimen since this is my final cycle and Part B has always been easier to take than Part A - now let's hope and pray that continues to be true as I finish out this cycle tomorrow with my FINAL CHEMO INFUSION! =). However, Dr.B did warn me that the anemia could complicate things tomorrow if my red blood cell count dips down to an 8 (I was at 9 last week - he said my "normal" was trending 12-13 based on my numbers at the start of chemo) at which point a blood transfusion would be likely. I've been eating some spinach the past couple of days in hopes that it would help out here but we won't know until tomorrow when I arrive and they draw blood. I praise God for carrying me through this challenge and opportunity. Yes, I did say "opportunity", as crazy as that may sound. Love, Julie

Friday, December 11, 2009

Tech tested doc approved!

Normal! Yes! Praise God!

Apparently I may need some stronger help for my digestive system this cycle. Not surprising since I have felt like I've ben hit by a bus the past two days.

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The wait and the worry

This morning I had the ultrasound. Praise God the technician showed compassion and told me that things look normal (normal for menopausal status, that is) in the southern region. I'm sitting in the exam room waiting for Dr.N to come in and confirm that conclusion.

I remember the days of pregnancy ultrasounds. I got them every two weeks because of my high risk status with the incompetent cervix. Every visit brought fear and worry that I'd have to be admitted and/or the baby would be coming too soon. I trusted God to protect that precious baby and He did. I'm trusting Him now to protect me so I can be here for Cooper for many many years to come.
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Wednesday, December 9, 2009

Chemo cycle 8, part A - days 1-2

It's hard to believe that I'm nearly done with chemo. I've already received cycle 8, part A, and have just one more infusion (part B) next Tuesday and then the day after I'll get my final shot (either Neulasta or Neupogen) to boost WBC production and then I'll be done with chemo! Just before receiving #8A, Dr.B informed me that I'm even more anemic than last time and that if I go any lower when I go in for #8B next week then I will probably have to go to the hospital for a blood transfusion - he didn't want me to be surprised by it so he was letting me know now. ;/. They're working on getting insurance approval to give me another shot like I had once before for this but he said it's benefit is limited and it could take too long to take effect. So....if this happens my completion of this final chemo cycle could be delayed a bit. But I have faith that my body will do it's job...that my prayers and the prayers of so many of you for me will help me avoid a transfusion and delay. I also have faith that if I do end up needing a transfusion and getting delayed it will be what needs to happen as part of God's plan for me. So I'm not worried. When I went in for my shot this morning I joked with the nurses that I might just have to keep going in to talk to them even when I have no other reason to be there after chemo is finished. They said they won't mind at all seeing as I come bearing gifts every time I show my face there. The other day one of the nurses told me that some of the patients even come in asking "is Julie going to be here today?" :) That put a huge smile on my face. One of these patients was there yesterday during my chemo infusion and he and his wife conversed with me the entire time he was there. It was his final chemo yesterday and when they left (about halfway through my infusion), they handed me a paper with their name, email address and phone number and asked if I'd share mine with them so they could keep in touch. I was happy to do that. I have met some incredibly brave and wonderful people through this journey - many of whom I will always consider as part of my extended family now. Anyway, it's not like I won't be there plenty of times once chemo is over. I'll have plenty of blood draws, scans and exams, to be followed closely for the next few years, especially since the cancer was triple negative, making the first three years critical. And while the chemo chapter comes to a close, there is still lots of treatment left for me - most notably the radiation chapter which will have me in another doctor's office DAILY, M-F, for 2-3 months, beginning in February. Between Dec.16th and Jan. 14th the only appointments I'll have will likely be blood draws to evaluate my fitness for my next reconstructive surgery on 1/14, and consultations with both of my medical oncologists, the radiation oncologist, and the holistic M.D., to discuss my post-chemo path. It may sound like quite a lot in a month but really that's nothing compared with getting chemo 2 weeks of every month and daily visits for shots for the week following chemo infusions. I'm told by many of my friends who've gone before me that radiation isn't quite as difficult as chemo so that is nice to hear, although chemo wasn't too bad for me - praise God! So far, this cycle feels similar to the very first one. Today I woke with a burning sensation in my belly. Thankfully though, it didn't lead to the very unpleasant digestive symptoms that followed that feeling in the first cycle - at least not so far haha. I had a twinge of nausea that quickly went away once I took today's dose of Emend and Zofran in the morning and didn't need to take anything later in the day so that's good. My salivary glands are still not happy so I need to force myself to drink more water. I haven't mentioned this yet but for the past three weeks or so I've had some strange feeling in my pelvis area - not quite like period cramps, more like a twisting sensation that comes and goes. I mentioned it to Dr.B (my local medical oncologist) and told him I had an ob/gyn check up later this week and he suggested I get an ultrasound to have Dr.N (my ob/gyn) take a look at my ovaries and that region to be sure there isn't anything going on there - so I'm having an ultrasound on Friday to take a look. Dr.B said that chemo causes aches and pains all over and this could be just another location of that, but it never hurts to take a look and be sure. I love Dr.B. Many doctors would just assume it's one of those aches/pains but he knows this is not the time to assume anything - if there's something going on down there we need to know now. I trust that all is OK but I continue to pray and ask for prayers that is true. Thank you all for your continued support and prayers. I'm grateful beyond what any words can express.

Wednesday, December 2, 2009

Good news - no infection! :)

I had a follow-up visit with the ENT (Dr.V) today. They tested my hearing to see if I'm experiencing chemo-induced hearing loss (which would be irreversible!), and thankfully I am NOT - hearing is good. :) Next, doc examined my ears, nose and throat again and found no new signs of infection. He said the lack of new/progressive symptoms, combined with the fact that the decongestant is helping cut down on the whooshing/waves sound I'm hearing points to this being what I had hoped for out of the three possibilities -- chemo thickens mucus and my salivary glands are swollen from the mucus, causing a backup of it into the eustachian tube/canal. As long as we can manage it with decongestants and fluids (staying hydrated should help thin out the mucus), I should be able to avoid it turning into an infection. That's a relief! :) On another happy note, Cooper finally received his H1N1 vaccine this morning so he'll be protected from that craziness within 2 weeks of receiving it. It's nice to know we both finally have some protection from that hot mess.

Monday, November 30, 2009

Update - just back from the ENT

So...the verdict is still out on whether I have an infection -- ENT doc, Dr.V (who is very cool, I might add), says that it doesn't APPEAR to be one (I only have one out of three of the signs of a typical ear infection), but he said it COULD be the start of a sinus infection based on my symptoms and the redness he observed in my ear so they're all over me like flies on....well, you know. It also could be that the mucus in my salivary glands (from the chemo, and they're still swollen) could be backing up into the eustacian tube causing these symptoms and that could also lead to an infection. And a third, yet remote, possibility is that this could be the beginning stages of hearing loss brought on by the chemo I'm on (Carboplatin in particular) b/c it's a known side effect which unfortunately would be irreversible...so just in case I have a hearing test scheduled for Wednesday -- if they detect hearing loss they'll look at modifying the dose of my last chemo or something like that -- so now the prayer list expands to include stable hearing so I can get the full current dose of chemo for the last round. If I was to guess which of the three possibilities we're dealing with - I would guess the back up into the eustacian tube - b/c I have no other sinus infection type symptoms - no congestion or runny nose, no headache issue except a very brief piercing/jarring feeling when I stand up quickly, and I also haven't noticed any hearing loss, thankfully. So what we're doing about this right now is starting me on a high powered decongestant to see if that clears things up and if I still have symptoms in a couple days they'll get me in for a CT scan of my sinuses to look for possible infection because they'll want to treat it asap if there is one there. As a bonus, the ENT said he did not feel any angry or swollen lymph glands in my neck - that only the salivary glands were swollen - loved hearing that. I was due to have a boobie inflation appointment at 4 pm at UCLA today but when I called to inform them I was heading to the ENT to investigate the ear issue they said I needed to reschedule that because they don't want to take a chance at doing the inflation while there could be an active infection in my body so now I have to go there on Friday instead. My husband often tells me I'm too chatty sometimes - often sharing more details than is necessary - but I laugh at him and tell him that my chattiness and TMI sharing habit has actually saved me numerous times - today it saved me a roundtrip to/from UCLA (that's 80 miles roundtrip during rushhour in L.A.) and a possible unnecessary new health problem. So - listen up folks - there's really no such thing as TMI when you're dealing with your health and your doctors and nurses -- tell them everything because that's the only way they can help keep you on the right path. I wonder if any of you are thinking why in the world I would go in for another inflation when I've already declared I'm not doing anymore of those. Well, I MIGHT do an inflation if the doctor looks at me and says he needs more room to work to turn these puppies into masterpieces in January...but if he doesn't need anymore room to do that then I won't do any inflating because I'm fine with their current size or smaller. I'm really going in to have him tell me what he can do to fix the divets and stuff from my scars and other imperfections during my surgery in January -- because hearing what he can fix will make it a bit easier to appreciate the discomfort and unattractive appearance of these expanders.

Ut oh....possible infection ;/

The past few days I've noticed my ears feeling pressurized. Not painful or sore at all, just strange. The past 36+ hours I've been hearing waves crashing in my head, like waves at the beach, minus the beautiful scenery haha. Again, no pain or soreness at all. Yesterday, whenever I stood up quickly from a seated position my head felt funny - like a quick headache blast that would last for just a few seconds then things would seem normal again (or normal with some beach waves swishing around LOL). This morning when I went in to get my Neupogen shot from the nurse I mentioned the orchestra of ocean waves I've been hearing and next thing I know I am being shuffled into an examination room to see the doctor. Doc looked in my right ear and said "hmmm this one is severely packed with wax"...and then he switched to the left said and said "yeahhhhh....it's red...could be infected." He started to write a prescription for antibiotics but then stopped and said he wants me to see an ENT today to have them look at it to confirm infection because if it isn't he doesn't want me on antibiotics, and to have the right ear cleaned out. He said I need to be seen today so we can catch this early before it becomes dangerous (infection during chemo = not good) and that if I can't be seen today we'd resort to antibiotics. I have an appointment with the ENT at 1 pm. Fingers crossed and prayers being said that this ear thing is no big deal. I trust all will be OK but the word "infection" is a bit scary when you're on chemo.

Friday, November 27, 2009

Ever so thankful!

Every day is thanksgiving for me now. I give thanks every night, to God, for the countless blessings He has bestowed upon me and my little family. I am blessed with the most wonderful husband who adores and cares for me and our son - I love him so very much. We have the most amazing little boy who fills our lives with joy and wonder - even when he keeps me up at night, he fills me with hope about the future. We have incredibly generous and caring family and friends who love and support us. I have an amazing employer that provides outstanding benefits, flexibility, and the most compassionate colleagues and management team who genuinely care about me and help me focus on getting well. I have an amazing team of brilliant doctors and nurses at UCLA who treat me with respect and compassion, answer my questions, laugh at my jokes, and reassure me when I'm feeling scared and uncertain. We are so fortunate and grateful for our wonderful home which is located in the most amazing neighborhood filled with fantastic neighbor friends whom we love and appreciate so very much. The list goes on and on...I am thankful for so very much, each and every day. Life is precious and I appreciate every second of it. We spent our Thanksgiving Day with my wonderful in-laws in Orange County. It was a gorgeous day here in southern CA - in the mid-80's! We drove down to my sister-in-law's house where we had a FANTASTIC organic Thanksgiving feast with Dottie (my sister-in-law), Bob (my brother-in-law), Kim (my niece), and Grace (my mother-in-law). We even brought Hunter along (our golden retriever) to play with their dog who is also named Hunter :). It was so wonderful spending the afternoon with them, getting caught up, eating a fabulous meal (Dottie - it was so yummy!!), and watching Cooper run around like the energizer bunny exploring everything in sight. He loved running around their back yard and playing with the dogs. He especially loved it when Kim took out her acoustic guitar after dinner and let him play with it. Thank you so much, Dottie, Bob, Kim, and Grace, for making our Thanksgiving extra special this year! I hope everyone enjoyed their Thanksgiving Day and were able to reflect upon and appreciate the many blessings in each of your lives, this day and every day. Love, Julie

Cycle 7, part B, complete! 7 down, 1 to go!

This past Tuesday I received chemo cycle #7, part b. Thankfully, my WBC and platelet numbers were good...but I'm now anemic....so I was able to finish the cycle and am thrilled (and yet also terrified) to say that I have just one more chemo cycle to go! Wow! I'm excited to be nearing the end of this chapter knowing that I'm closer to being done with treatment, but terrified of being without the chemo which I view as a critical source of protection. I won't miss the daily shots in the patootie (neupogen) haha. It'll be great to get my hair back but I've said it before and will say it again - hair and other cosmetic side effects to all this craziness means nothing to me - living, and for a very long time, is what matters to me. I feel pretty good for having been through 7 chemo cycles - other than being super exhausted and losing my breath very quickly - probably because of the anemia. I received a shot for the anemia - but I can't remember what it was called and so far I still feel out of breath so I'm not sure when it's supposed to kick in or how it's supposed to help. I'll need to ask about that - it's so unlike me to not know ahead of time but I trust my doctors and nurses so I'm not concerned, more curious and wondering what I should be watching for (if anything) for side effects, benefits, etc. I realized today that I still have the eye twitch - have had it for a while now but I guess I just got used to it when it decided to stick around for a while. My salivary glands are still swollen, but not painful. My entire body is sore from head to toe - feels like I've been working out, even though I haven't been. My skin is really dry flaky so I have to be careful and keep my hands moisturized - mainly my left hand - to avoid cracking which could lead to infection, which could lead to lymphedema -- something I'll always have to pay attention to (forever). My left arm and hand quickly falls asleep and goes numb if I am laying on it even in the slightest bit while sleeping, so I have to really try to stay on my right side - again, due to having so many lymph nodes removed. Sleeping has improved, even though the hot flashes continue - they're not waking me up quite as much as they did before - or perhaps they are and I'm able to get back to sleep right away. So there it is...cycle #7 :). Thank you, God, for the liquid gold cure juice! Thank you, God, for giving me the strength and spirit needed to receive this treatment successfully and to tolerate the side effects so well. Thank you, God, for the most amazing family, friends, colleagues, neighbors, nurses, doctors, and all those you've placed into my life to help me get through this and for those whom I am supposed to help. I am so grateful to Him for all He has given me. Love, Julie

Thursday, November 19, 2009

Cycle 7, part A, day 3: A pain in the neck

Throughout this journey there have been many times where I've felt something and have kept it to myself for fear that 1) stating it would lead to a dangerous self-fulfilling prophecy, 2) it would unnecessarily worry those that love me , and 3) it would make me look like a bonafide, paranoid, hypochondriac. When I say "felt something", I mean it quite literally - like a pain or a bump or a swollen something or other. And, when I say I keep it to myself, I mean I don't talk about it much with anyone other than Bob (my hubby) until I get to my doctor and tell him and have him check it out - not that I would ever let something go uninvestigated because frankly from here til my dying day I'll be harassing my doctors about every little thing I feel so I hope they're ready for their new patient stalker. LOL Several times over the past months it's been the glands in my neck and throat. They have felt enlarged, swollen, and sore at various points. The big fear is that the c-word would be lurking in my lymph nodes/glands trying to march its way toward my brain or something crazy like that. For those of you who have never had cancer, these are the images and thoughts that occasionally pervade the mind of someone who has had it (it sucks). Each time I mention it to Dr.B he puts my chart and his pen down and takes hold of my neck and feels around and tells me everything feels normal and OK and I breathe a huge sigh of relief...at least until the next strange feeling or pain or whatever. A few times now I've felt like the glands directly under my lower jaw were not right - thickened and sore and sometimes it really bothers me for a few days to the point where it really begins to freak me out. So today when I went in for my neupogen shot I mentioned it, and they also happened to notice my temp was slightly elevated at 99.2 so they had Dr.B come talk to me and check me out. He felt around my neck and jaw line again and said that my salivary glands are swollen. That it is NOT my lymph glands (huge relief) and that it's a side effect of the chemo since it affects bodily fluids such as mucus and saliva, causing it to thicken and then it can start to clog the glands and can even cause an infection. He told me to take an Aleve and to drink more water and start sucking on sugar-free lozenges to help thin out the saliva. He said that if it becomes more painful (right now just sore) and/or if my temp stays above normal then to call in because they'll have to start antibiotics to fight what could be an infection. Apparently this is pretty common when you've been on chemo for a while. Another thing that's common is the all over aches and pains I'm experiencing - thankfully they're muscle aches/pains and not in the bone - well, except for the headache part which is skull bone pain from the neupogen (as that is the site that it seems to always want to produce the WBC in my bone marrow) but that only lasts about a day or two after the first shot in the series and then it lets up. But the muscle pain is a cumulative effect of chemo which tends to really start to annoy at about the 4th cycle or later - for me it really seemed to kick in and annoy me after cycle 6. Mine is sort of all over but the sites that bother me the most are my back, shoulders and back of my ribcage. I think it's time to go get a massage. :) So far, cycle 7, part a has been OK - a bit of nausea (not intolerable), swollen sallivary glands, and all over aches and pains, and ongoing fatigue, a touch of anemia. Again, all manageable. I had another great meeting of warriors today at UCLA where I attend a weekly support group for anyone in treatment for breast cancer. I almost said "women in treatment" but then had to backspace over it and say "anyone" because when I first joined the group there was a man there and we all know men can and do get breast cancer too. Feel your man's boobies, ladies! I was 30 minutes late arriving to the meeting because of student protests taking place on campus that caused traffic and parking snafus all over the place...I circled the parking garage for over 20 minutes before finally finding a spot...that's after navigating a packed freeway backed up near campus because students took to the streets and caused on/off ramp closures. ;/ I don't blame them (students) since their tuition is being raised by 32% - ugh! But I digress...so anyway, once I was finally there it felt great to be surrounded by women who understand and can relate to all the crazy feelings and fears I encounter along this journey. I wouldn't wish this on anyone but I sure am glad to not be alone in it.

Wednesday, November 18, 2009

Chemo cycle 7, part a - received :)

I forgot to post that I did indeed receive chemo cycle #7, part a, on Tuesday. My counts were great - WBC up to 7.3 - hasn't been that high since the very first couple of treatments. Platelets were over 250 and in the normal range, and the other numbers all looked pretty good for a gal that's had 6 rounds of chemo already. I am a bit anemic so they're awaiting insurance approval to give me a shot to remedy that and help me avoid a transfusion for that craziness. Speaking of insurance, mine has finally given in and paid for that breast MRI they were challenging. Lucky for them because the wrath of Julie is...well, they didn't want to go there haha. So I'm on day 2 of this cycle and here's how it's going so far...queasy but not horrible thanks to the anti-nausea meds which are taking the edge off - well that and ginger ale and toast. As has been the case previously, the first day of neupogen (today) brings forth a flush red tone over my face and neck. In the early cycles I thought this was due to the steroids and they did too...but it seems it's actually from the neulasta (back then) and the neupogen (now). I have the tell-tale bone pain back too - centralized in my skull, producing a headache and achy neck. Taking tylenol helped but not quite as much as an Advil or Aleve would do but I'm avoiding those drugs b/c of their effect on platelets since I have to have good numbers again next Tuesday to get part b of the chemo. I'm achy all over - back, neck, legs, arms - doc said that's typical for those that have been on chemo this long or longer. I'm OK with all of this - kind of makes me feel like it's working and doing its job. I'm not complaining at all. As I near the end of the chemo part of my journey, with just 1.5 cycles left, I am excited and nervous too. Excited to be another step closer to being done with cancer, but nervous and terrified that going off chemo would make me vulnerable again - it makes me feel protected right now. I'll need to work through that. The nerves are really working at regenerating under my armpits and while I welcome the return of some feeling - especially the left side where the numbness is insane from the lymph node dissection - the sharp pains and itchiness this process brings is not fun and makes me nervous. That, combined with the freaky dream I had the other night about finding another lump under my arm, just is driving me batty sometimes. I catch myself feeling my armpits frequently and at random times in random places - like the grocery store. I must look like a total weirdo standing in the produce department with a bald head and my hand under my armpit feeling for lumps that damn well better not exist. LOL This is yet another thing I'll have to work through. sigh. I put it all in God's hands. He will cure me and make me well and allow me to live to see my son get married and give me grandchildren. I believe in Him. I praise Him every night for the blessings He has bestowed upon me. I know He has given me the fighting spirit, the will and the resources to be my own best advocate, and put me in this place and time so that I would have the best support, the best healthcare providers, and the will to live and beat this disease. He has a plan for me and I'm ready to fulfill it, whatever it may be.

Tuesday, November 17, 2009

PLEASE ACT NOW! This is outrageous!

PLEASE write to US Preventive Services at the link below to tell them their new mammogram guidelines are total bullshit. They want women to stop doing self exams and are saying mammograms should not be done until age 50 except for those with strong family history of breast cancer. This is absolutely outrageous and sure to result in countless unnecessary and premature deaths of millions of women if this new guideline is enforced. WELL... 85% or more of new breast cancer diagnoses are in women with NO family history of the disease - like me. Women in their 30's is the fastest growing age group being diagnosed - like me. Younger women diagnosed with breast cancer tend to have the most aggressive forms of the disease - like me (i.e., triple negative and HER2+). We need to demand a retraction of the new guideline. Please! You can express your outrage at the following link: http://www.uspreventiveservices.com/contact.htm Thank you.

Chemo cycle 7, part a, is scheduled for today

If my counts are good when I arrive this morning, I'll be getting chemo cycle 7, part a, today. It's hard to believe that this is the second to last chemo cycle. I've been so blessed and grateful that it's been so smooth and has flown by rather quickly. I hope and pray the remaining two cycles will go smoothly too.

Saturday, November 14, 2009

Sleep - my catch 22

Some background info While pregnant with my son, Cooper (16 months old), I developed a condition called "incompetent cervix" and was placed on bed rest at 16 weeks for the remainder of the pregnancy and given weekly injections of "17P", a form of progesterone to prevent preterm labor which I was high risk for. It worked, and I was able to carry Cooper to 35 weeks. He did great, spent no time in the NICU, came home with us, but we soon discovered that he had severe reflux (common for preemies) so he couldn't drink very much at a time and had to drink small amounts frequently. He also had to be elevated for 30 minutes after drinking/eating to prevent him from choking if/when he refluxed following a feeding. For the first several months he drank every 2 hours. At night, the reflux seemed to be worse and he would wake up every 45-90 minutes all night long, every night. He also was sick a lot with reflux related respiratory issues - hospitalized twice for pneumonia at 3 and 4 months old - and every cold became a respiratory infection. He was frequently on antibiotics, steroids, and steroidal inhalers in addition to the Prevacid which I'm sure just prolonged and contributed to the sleep issues. We couldn't sleep train him until after the reflux was gone because stress and crying aggravated the reflux - he didn't outgrow it until 10+ months. Bottom line, in the first year of his life, Cooper only slept through the night (meaning for more than 5-6 consecutive hours), just 3 times and since it was such a rarity that I was convinced/worried there was something wrong with him so I didn't even sleep more than the usual couple hours at a time on those nights. I was sleeping for periods of 45-120 minutes at a time, all night, nearly every night, for over a year. As soon as I'd approach deep sleep, I was woken up. Fast forward to June '09 (and through October) When I met with my two oncologists (separately) I told them about the extreme sleep deprivation I'd been enduring, and the hormone injections received during my pregnancy. They agreed that the sleep deprivation certainly would impact a person's immune system, and that it's possible for hormone injections to increase a person's risk and/or feed an existing cancer, but they each said that it's unlikely that the cancer I had would have just appeared within the past year - that typically it takes much longer for it to develop, grow and advance to the point where it was discovered. It would be nice to know what caused the cancer, or made me especially susceptible to it, but we may never know. However, I knew that in order for me to be strong, fight, get through treatment, and give myself a good shot at avoiding a recurrence, I'd need to get a lot more sleep than I had been getting. So we began sleep training with Cooper. We had great success thanks to help from Bob and my mom, and were on a great roll - not sleeping through the night but at least getting 3-4 hour stretches of sleep which was a great improvement. But every teething episode, cold, etc. put us back to square one so it's been very challenging to get the sleep I've needed - especially with Bob being away so much. Eventually we decided I'd take an occasional night away at a hotel when Bob was home so I could sleep through the night once in a while even if Cooper didn't - I've done that three times so far. In mid-October I resumed working part-time. Getting better/more sleep became even more critical but Cooper's molars were coming in and taking FOREVER to emerge, causing him a great deal of pain. During the day he walked around smacking his cheeks while yelling "owwww", and at night he woke crying every 1-2 hours. FINALLY, last week, the 4th molar emerged and Cooper began sleeping through the night - and has for 4 consecutive nights now :) (I pray that I'm not jinxing it by announcing this haha). FINALLY, I have been able to sleep for 4-6 consecutive hours at night before being woken by a hot flash, or by Cooper. Catch 22 For most of the year, I had not been dreaming - or if I was, I was not remembering any dreams. I can count on one hand the number of times I woke up remembering a dream within the past 16 months. With more sleep comes the return of dreams. Normally that'd be OK, you'd think - right? WRONG. Out of the five dreams I remember having, 3 of them have been cancer related. Not cool. And, all 3 of the dreams I remember having since just before my diagnosis have been about cancer. These are scary dreams and I don't like it. I know and believe that dreams are symbolic, making me even more unhappy about these dreams. I understand that we work through feelings and anxiety in our dreams, but I don't like the direction of these dreams as they are not relieving my anxiety and are instead adding to it. I can't even tell you how many times I was feeling my armpits throughout the day today because of a really upsetting dream I had last night. This really pisses me off. I just want to say that I think it's freakin' BS that now that I can finally sleep for a good span of the night, I'm having these scary dreams. I think we can all agree that I've been really positive and doing the right things - juggling aggressive treatment, leveraging both medical and holistic healing techniques, taking care of Cooper, working, and managing the household. I very rarely complain...right? So when the f*** will I catch a break from the BS? Don't I deserve restful sleep? I mean, really!? Seriously!? I want happy dreams, damnit! ****we now return to our regularly scheduled ass kicking program**** Hey cancer, you're not allowed in my body, nor my dreams! Beat it!

Monday, November 9, 2009

Chemo update: 6 down, 2 to go!

I can hardly believe that I've already had 6 chemo treatments and have just 2 more to go before this part of my journey is completed. Wow! I've been so fortunate and blessed to have had such a positive experience with chemotherapy. I thank God every day for many things, including giving me the strength and courage to see every treatment as a happy blessing which fills my body with loving "God-given liquid gold cure juice" as I like to call it. I have had many side effects but all of them have been manageable and none of them could ever stop me from wanting more treatment. I know this is not the case for many people, including several people that I know who have been through this, so I know how lucky I am and I am extremely grateful. Cycle 6 has been smoother than cycle 5, due to the changes that Dr.B implemented - a lower dose for starters, and a switch from neulasta to neupogen to keep my white blood cell count up. There isn't anything they could give me to keep my platelets up so we'll just have to see where they are when I arrive next Tuesday (17th) for cycle 7 part a. However, Dr.H, the holistic MD from UCLA has recommended a supplement for me to try for keeping my platelets up - it's called Astragalus - so I'm going to start taking that today. This will bring me to 16 pills a day just in supplements (and it will go up by a few when chemo and radiation are behind me)! This is from someone that wouldn't even take Tylenol for a headache til it was so bad that I was seeing spots. That's OK though - my life has changed in many ways since being diagnosed with cancer and although I would have preferred a different catalyst, I know these changes I'm making are positive and healthy and will make me stronger.

Thursday, November 5, 2009

Giving & Receiving - a LONG post

I'm a giver. Always have been. Giving to others has always fulfilled me in ways that nothing else could. I've always wanted to be able to give more but life often got in the way so I would find an opportunity here or there and give - donate time, money, goods, etc to people in need, to friends and family members whom I love. I once moved cross country from Massachusetts to California to show a dying man whom I loved and respected (though hadn't known him all that well for very long) that I believed in him so much that I'd move (permanently) to be closer to him and help him fight cancer (sadly, he died 3 months later - that was 11 years ago). I'm a "big sister" and have been matched to my "little sister" since 2003 and I take her out as much as I can to fun places, out to eat, and I am available to her for support and friendship, keeping my word to her as a mentor. I sponsor friends, families and even strangers who seek support in fundraisers for worthy causes. I buy items at charity auctions - mostly things I don't even need (just ask my husband about a coral antique dresser now being used as Cooper's changing table in his room, or the many pieces of jewelry I've never worn but were purchased to fund a charity). I donate hundreds of dollars (even thousands in some years past) worth of goods each year to The Salvation Army, Goodwill, a local battered women's shelter, and the VA. I just sent a (very) small donation to the LA Regional Food Bank to buy 44 Thanksgiving dinners for the homeless, even though I am operating check to check right now with all the medical bills we're having to pay. I participate in community service events organized by my employer - renovating school buildings/yards, serving meals at the Boys and Girls Club each holiday season, served as a "cabinet member" for the United Way campaign at work, organizing team events to drive donations and service volunteerism, and allocating a sizable portion of my paycheck toward the charity to help "create pathways out of poverty". I always support the local school fundraisers and Girl Scouts too. I love to show my friends and family that I appreciate them by sending them tokens of love and recognition on special days - birthdays, holidays, etc. Sometimes flowers, cards, a gift basket or whatever. I especially love to give people things I've made for them - mainly handcrafted jewelry or accessories (I have a way with beads, I guess). Years ago I was addicted to cross-stitching/needlepoint and would craft things for people and have them framed professionally for holiday gifts. I have fun sending/giving people coupons for products I don't use but I know they do, or giving people things they need which I can no longer keep for myself (a win-win of course) - like when I moved out to California I knew I wouldn't be able to afford to buy a house for quite a while because of the home prices here so it didn't make sense to haul everything from my 4 bedroom CT home out to some dinky CA apartment and at the time my brother was engaged to be married and had mostly hand-me-down mix and match stuff so rather than sell all the stuff I wasn't planning to take to CA I gave it to him for them to use in their home/yard. I assure you, I am not bragging here - I'm no saint, believe me! I don't talk about this stuff very much to anyone (except the big sister part since I want others to become "bigs" too). I'm not even entirely comfortable posting what I've stated above but I feel that if I don't, then I'm not telling the whole picture of how I've come to this place of peace I feel today, right now. So I'll leave it there and hope you will understand, from reading on, how it fits in. I mention my history of giving because it occurred to me recently (during a support group meeting, actually) that giving to others makes me feel really good and that's how I ended up adapting a caregiver personality. It also has occurred to me many many times (since being diagnosed especially) that being cared for and receiving support and gifts feels wonderful too. In fact, the outpouring of love, support and gifts I have received since being diagnosed with breast cancer has been unbelievable to me. I am so grateful for every prayer, every card, every email and blog comment, and every beautiful token of hope and inspiration sent my way that it brings tears to my eyes every time I think about how fortunate I've been to have such generous and caring friends, family, colleagues, acquaintances, even complete strangers. I'm not convinced I deserve it, but it feels amazing and I am truly grateful. I will readily admit that my independent personality often makes it challenging to accept offers of help, particularly from those whom I don't feel I've done anything for in order to deserve their help in return - and even if I had, I still always tend to manage on my own because I always have and because I usually can juggle a great many things. Things are different now, albeit temporarily, in that it's hard to manage on my own. I'm beyond exhausted from the treatments and chasing Cooper around when Bob is away, I'm not getting enough sleep, etc. The new challenges and limitations I face each day and the frustrations they bring are an example of what I discuss with my breast cancer support group. Last week we were discussing who we get help from, how it makes us feel, whether we are surprised by who has (or hasn't) stepped forward to help, how our relationships have changed (if at all) by our new needs for help, or simply due to being diagnosed with cancer, etc. From the responses we shared, it seemed as though every woman in the room was a classic caregiver personality - caregiver of others (not of self). Our very wise therapist/facilitator reminded us that the feeling we get from helping others is the feeling others get when they offer to and follow through with helping us (duh!). The lightbulb went on that I need to allow (even force) myself to ask for help from others more often - giving them the opportunity to give to me when I am in need. As if that realization wasn't big enough, with a challenge attached, the therapist offered me great advice in response to a story I told about a recent interaction with a loved one that has repeatedly upset me over the years. She suggested that I serve as my own best caregiver and do for myself that which nourishes me, fills me with hope and love the way I would to do for others when caring for them, and detach myself from those who create stress and pain for me. You probably recall that I have mentioned I'm a fan of Bernie Siegel, MD. Bernie believes in and promotes the mind-body connection. He encourages people to spend time doing what they love so that time passes by without them noticing because that is when we're fulfilled and in a state of unity with our Creator. He teaches patients that our bodies have a very real physiological response to the "live" (or "die") messages we send to it. I want to send very strong "live" messages to my body so I am working on figuring out what makes me feel good, how to take better care of myself - in the same quality fashion I would apply myself if/when caring for others, and to ask for help from someone each week who can help me get some important healing needs met somehow. Anywho...while reflecting on these goals, I realized that I needed to make good on an earlier promise made to myself to get moving - walking actually - every day, whenever possible - and to bring along positive inspirational messages in the form of audio books or meditations on my iPod to remind me daily of the beauty, wonder and miracles in my life and to help me focus on healing and wellness. So far, so good. Tonight I asked my friend Cindy if she would watch Cooper for a couple of hours on Sunday so I can go to church and focus on the message and she agreed to help - thank you, Cindy!! My other friend, Michelle, who happens to also be my chemo nurse at the cancer center, is helping me by giving me my weekend shots of neupogen so I don't have to inject myself. Thank you, Michelle!! And, my friend Tara has been so great helping me get evening walks in on days when I wasn't able to get out earlier in the day with the iPod. Thank you, Tara!! As for the other goal - finding and doing what fulfills me - this circles me back into what I could do for others simply because of how good it makes me feel to help others. Thus, I'm on a giving mission. Inspired by a women I saw interviewed last month on NBC's Today show - Cami Walker - who wrote a book called "29 Gifts" on how a month of giving can change your life (and did change hers). I haven't read the book yet but the day I saw the interview I decided I would spend at least 29 days giving to others. I was in a down trodden slump for a short time recently until I saw this interview and began this project. I was really feeling down about my situation and scared about my future. I'm not saying that I'm not scared anymore - but that since I started focusing on giving to others I have found a renewed sense of hope and joy that I happily cling to. I mentioned on FaceBook recently that I was doing this project and one of my online friends, Patti, went out and bought the book for me! I received it today with the most beautiful note attached, along with a fantastic piece of artwork by her very sweet daughter. Thank you so much, Patti!

I've been deliberately giving gifts away since the week before Halloween. I will eventually post the list of gifts given out but for now, the bottom line is this - giving to others over this past week has helped me tremendously. It's helped me feel good, feel hopeful and feel like I'm making a difference by making people smile and feel appreciated. It's helped me get out of a scary funk I was in that could have sent the wrong messages to my body, and now I'm sending the right messages to it. So, if you want to feel really good, start giving - today. Just find little gifts - things, time, messages, etc...with no attachments or conditions...and give to strangers. You will be amazed at how wonderful it feels for both the giver and receiver every time.

Thank you for "listening" - having your eyes/ears here is truly a gift to me.

Saturday, October 31, 2009

Wednesday, October 28, 2009

Chemo cycle 6a: Finally got it!

After a 2-week delay due to low WBC and platelet counts, I finally got the infusion for cycle 6a today. Technically I was supposed to get cycle dose 5b but since 5a hit me so hard, Dr.B decided the 5b "boost" of Gemzar was not necessary and that we'd need to lower my subsequent doses so that they don't slam my counts so much so that we can resume the planned 2-dose cycles. This will also entail a switch from Neulasta to Neupogen for stimulating WBC production in the bone marrow. Unfortunately, that means going in for daily injections instead of getting one per cycle. That's OK though - the office is just 2-3 miles from my house and I can go in for when they open so it won't interfere with my day. What I do worry about though is the side effects of getting it daily - primarily bone pain. The remedy would be over the counter pain meds, but the problem there is that most of those interfere with platelet production so I'm hoping and praying the bone pain will either not be bad or will only occur the first dose or two and then not bother me like what happened with the Neulasta. If it becomes an ongoing issue, I'll be worried about my platelet count getting a double whammy from chemo and pain meds since there is no medication/injection to stimulate platelet production and the remedy for a dangerously low platelet count is transfusions. ick. Well, I give it over to God and let Him control what is meant to happen. So far, on day 1, I feel pretty good. Only a tiny touch of stomach upset but not enough to interfere with much. I do have a headache that's bugging me but I'm not taking anything for it just yet - waiting til tomorrow and if it's still there I'll take Aleve and that will address the headache and serve as a preventive for the possible bone pain effects of the Neupogen. Other than that, I'm good so far. Of course, the anticipated bad days are generally days 3-7, but the last cycle it started hitting me the first night and got progressively worse for 2-3 days, then day 4 things started to improve and day 5 I felt a lot better. So, we'll just see how it goes this time with the reduced dose. I wore a super fun hat that was made specially for me by a very dear friend of my family's, Mary Lee. Everywhere I turned - at the doc's office, the pharmacy, the market - people commented on how much they loved my hat and wanted to know where I got it. Mary Lee, you are super talented! Thanks so much for the fantastic hats - I'm loving them! The hat is shown in the picture above :) Time to get some sleep. Bob is on Cooper duty tonight since he doesn't work tomorrow but I do. I think I'll take the couch downstairs along with earplugs to try to not wake up when Cooper does cry - because I can still hear it when I'm in bed upstairs and have the earplugs in. ;/ Wishing you and yours a wonderful evening, and an abundance of blessings always. Love, Julie

Monday, October 26, 2009

Go platelets! Go platelets!

So I went to the cancer center this morning, prepared for disappointment. I had read online that although platelets can jump back quickly they probably don't go back over the 100 needed for chemo as quick as one week when you're as low as I was (26). WRONG! My platelets were 115 this morning! The prayers worked! Thank you!! What a huge relief that is - I was afraid not just to leave the house for fear of what could happen if I got into an accident or whatever, but I was afraid IN the house because I'm a bit of a clutz haha. While preparing dinner last night I was so nervous using a knife for fear of cutting myself while having such a low platelet count. But now I feel safe again haha. My WBC is lagging just a teensy tiny bit at 1.9 (was 2.3 last week, 1.4 the week prior). It generally needs to be over 2.0 to proceed with chemo. However, there's another number or two that they factor in and thanks to those other numbers, my 1.9 is good enough to move forward :). I forgot to ask what my iron level was but I'll find out tomorrow when I go back in for chemo. YUP, you heard that right - I'm getting back in for the God given liquid gold cure juice tomorrow! Woohoo!!! They're going to check my #s again in the morning for good measure but as of now, it's a go! :) I am thanking God, and I thank you all for your prayers! And, I'm drinking a lovely carrot/apple/pineapple juice mix today to help boost that WBC up a bit too ;). I'll post again tomorrow with more info on the game plan to help prevent and/or manage my counts proactively this next round (#6).

Sunday, October 25, 2009

Prayers for platelets...and other cells ;)

Monday morning I go to the oncologist for blood work and to meet with the oncologist. They want me to come in a day prior to my scheduled chemo appointment to check my numbers since they were so low last week. Last week my platelets were 26 (if they get to 20 or below, or if I start bleeding while they're as low as they are now I'll end up needing a transfusion) - they need to be over 100 to get chemo. My WBC count was 2.3 (up from 1.4 the week prior) - they need to remain above 2.0 to get chemo. My RBC count was 9.8 (below 10 is anemic) - if they're still below 10 tomorrow I'll be getting some expensive shot in the arse (I'm ok with that). I'm praying for platelets, white blood cells and red blood cells - for the numbers to be above the required amount to resume treatment. I'm also praying that I can continue to remain otherwise healthy, avoid the dreaded swine flu, and avoid any injury that might cause me to bleed since I don't have the necessary platelets for clotting. We're going through Purell hand sanitizer like water around here. I carry it everywhere I go and use it countless times per day if I'm out of the house to help avoid catching anything that could make me sick while my WBC count is still so low. My hands are getting dry and chapped so I have to also carry lotion to keep moisturized to avoid natural cuts/scratches. I'm feeling pretty good. Just tired. I have had a mild headache and all over body aches and pains (muscular) this week, which apparently is normal for this stage of chemo, and I can't take any pain relievers since they affect platelets, so I just try to not think about it and when I'm sitting still I massage my arms and legs and do some gentle stretching for a bit of relief. Bob was home for part of the weekend and helped me get some sleep by taking over Cooper duty at night and letting me sleep in Saturday morning (thank you, Bob!!!). He had to fly out Sunday morning though :( and Cooper was so upset when he saw Dad come down the stairs in his uniform. But once I managed to distract him we proceeded to have a productive day of running errands. I am really missing church while my counts are down...another reason I need them to come up quickly - I can't wait to go back. Today, Cooper decided not to nap until he finally passed out at 5pm ;/ and slept til 7:30pm. Now it's nearly 9pm and he wants to play play play...so it's going to be an interesting night haha. Well...I'd like to go forward with chemo cycle #6 this week if my blood work meets the requirements - that's what I'm praying and hoping for, as crazy as that makes me. Blood work on Monday, and hopefully chemo on Tuesday. Thank you so much for your continued thoughts and prayers. I'm so grateful for, and touched by, your love and support. Love, Julie

Friday, October 23, 2009

Warrior breakfast

Packed with protein...and totally organic...

3 egg (2 whole, 1 whites) kale and ff cheese omelet, shake (ff milk, ff plain yogurt, flax seed, glutamine powder, strawberry whey protein powder, and strawberries), and toast with strawberry jam which I share with Hunter (dog).

During treatment I need 88g protein daily...this meal satisfies half of that since I struggle to fit protein in later in the day. This also satisfies a fruit and veggie serving (kale and strawberry - kale for bc recurrence prevention), while giving me my daily flax seed for recurrence prevention, one of my 3 servings of glutamine to prevent progression of peripheral neuropathy (chemo side effect), and my max allowable dairy serving with probiotic digestive support (for chemo side effects).

And, yes, its yummy!

Sent from my Verizon Wireless BlackBerry

Thursday, October 22, 2009

Tattoos and zzzzz's

OK, not really tattoos, but if I squint really hard to blur my vision then I can imagine the bruises that are popping up all over my body as pretty tattoos. haha. I'm up to four bruises now and thinking I really really wish I could do something, besides pray of course, to boost my platelets so that I can guarantee treatment on Tuesday and stop being decorated with these not-so-pretty tattoos. I'll keep praying and squinting at my bruises to imagine them as something beautiful haha. Normally today I would be down at UCLA attending my breast cancer support group but my WBC count is still considered very low, making me vulnerable to infection, and one of my friends from group told me that last week a couple new members were present and both mentioned they had sick family members at home so it was good I didn't go last week either. It stinks though because it helps me so much to be there with my sister warriors and I miss them. Since I didn't go to the support group and is a non-work day for me, I decided it would be a day of sleep. So when the sitter arrived this morning I marched right back upstairs to bed and slept for 4 glorious hours, uninterrupted. Anyway, I can't remember the last time I slept that long (that's sad, and scary) uninterrupted - probably that first time I got a hotel room. Because, even if Cooper didn't wake me, the hot flashes usually will. At least with the hot flashes I can just throw the covers off, turn up the fan, turn over and go right back to sleep. Cooper's wakings involve getting out of bed, going across the hall and figuring out why the heck he's up and upset. I love him so much but night time is brutal for me, especially when Bob is away (which is more often than not). Now that I'm awake I'm working on finding answers to how I will get Cooper the H1N1 vaccine since he would be high risk if he contracted it (history of 2 cases of pneumonia and asthma symptoms since he was a newborn) and I would be high risk if he passed it to me. The pediatrician doesn't have the vaccine yet and is referring people to county h1n1 vaccine clinics in the meantime --- well --- there's now way we're going near one of those clinics with the #s of kids and parents that would be present - that would be like locking myself in a closet with sick people - not going to happen. So, I'm waiting for the pediatrician to call me back to help me figure out what we're going to do to get him the protection he needs. Lastly, I'd like to give a special shout out to my friend, Pat, who just completed his treatment and who has been quite brave as he withstood very painful side effects and infections and hospitalizations throughout treatment. Even through his very challenging treatments he took the time to communicate with and encourage and pray for others, including me. He's a beautiful person and I'm so grateful and honored to know him. Please include Pat in your prayers, asking God to heal his wounds quickly so that Pat can resume enjoying home cooked meals in place of a very inconvenient and unpleasant feeding tube that he is still dealing with. God bless you, Pat!

Wednesday, October 21, 2009

Chemo cycle 5b cancelled, another week delayed

First, I want to thank everyone for their prayers and positive thoughts that were put out for me. I know that the prayers worked because my WBC count went up from 1.4 to 2.3 by the time I arrived to resume treatment yesterday. Unfortunately, while my WBC count was rising, my platelet count was plummeting. The week before I was at 119, yesterday I was down to 26! In order to resume treatment, platelets need to be above 100. So, I was delayed another week. I was so disappointed and upset. The doctor and nurses are so wonderful though and they pointed out some very positive things before sending me home. First, my tumor marker - a protein in the blood that helps doctors evaluate the existence and levels of cancer - is low. It's at 14 when anything under 50 in a normal person without a history of cancer is considered normal and under 35 for someone who has had cancer. I would love to cling to this with glee but I know better than that...and I have internet access haha - so I know that there are false highs (and presumably false lows) with this measurement and that is why it's not used routinely in healthy people to detect cancer. I'm not saying I don't believe it - just that I am cautiously optimistic.

Another point made by Dr.B is that he thinks that the low WBC and platelet counts are evidence that we're "kicking the crap out of the cancer cells (and healthy ones too)" - and that's GREAT but it's also a concern (the healthy cell part) since we need for me to complete treatment and avoid complications as much as possible. So, what he said we will do is lower the dose of the chemo meds and switch me to Neupogen (the daily shot for raising WBC production) beginning next week. We're going to skip the "part b" of cycle 5 which would have been a "boost" dose of Gemzar (the secondary chemo drug I'm getting), and when I go back next week they will instead start me on cycle 6 if my platelet and WBC counts are considered reasonable for treatment. This will keep me "on schedule" and they're not concerned about me not getting "part b" since "part a" hit me (and presumably the cancer cells) so hard. *sigh of relief* Another discovery from my blood work yesterday is that I'm now anemic - right at the line anyway. The first blood draw they did had me at 9.8 for my hemoglobin (under 10 is anemic) but when they saw my platelet count of 26 they were convinced it couldn't be right and they took another blood draw from my arm, hoping that there was perhaps something strange going on at my port site. They just had the blood analysis machine calibrated so they knew the issue wasn't there. Well, the second draw hemoglobin came back at 10.1. Since it was over 10 they couldn't proceed yet with an injection that would address that but since I was 9.8 and 10.1 I was close enough that they are going to initiate the approval process with insurance to prepare for next week since I'll probably need it for sure by then. I'm not really sure what the injection is of so I'll be asking my friend Michelle (who is my chemo nurse and neighbor - love her :)) this week to remind me of the name so I can look into it a bit more. So that's where I'm at with treatment. Another rain delay haha. On one hand I'm really disappointed because I had hoped and prayed that I'd sail through this regimen the way I did the first series and stay on schedule. But on the other hand I'm glad to have a brief break now that I know how much harder these drugs are on me. I'm incredibly tired all the time. I'm short of breath going up/down the stairs or on my short walks that have tiny hills. I'm seeing the side effects of the low platelet count now when every time I bump into something I get a nasty bruise and now I'm paranoid about cooking (cutting mainly) since if I were to cut myself I wouldn't be able to stop the bleeding since my blood won't clot normally at this level. And I finally have the all over body aches and pains that tend to catch up to you when you have been on chemo for a while. It feels like soreness after running a race or working out really hard but all over, not just in select muscles that were worked out. But if I'm sitting still, in a safe place haha, I feel good (well, until a hot flash hits me but that's another story haha). Still tired, but good. I returned to work, part-time, last Friday. My team and management have been so wonderful. I'm so incredibly grateful for their support and flexibility so that I can continue focusing on my health but have something different than cancer to distract me and even make me feel useful and productive again. Certainly it's going to be a challenge sometimes with the fatigue, but I know I can manage it as long as things continue to go well with treatment in spite of these little bumps in the road. Thank you for your ongoing prayers and encouragement. I told Bob yesterday that with him being away so much, the connections I have with my family, friends and neighbors are so critical to keeping me going right now - keeping my spirits up and keeping me from falling into that dark scared place that follows me/us (anyone facing cancer) looking for a chance to take advantage of our vulnerability. But knowing that there are so many people rooting for me, praying for me, and reaching out to me encouraging me, that helps me be positive and be the tough bitch you all know and love haha :) Right? :) Because...

Monday, October 19, 2009

Carrot juice cocktails and to hell with quarantine

Ever since learning my WBC count was super low I've been on a mission to find things I can do to encourage the # to rise and to protect myself from possible infections or viruses particularly with that crazy H1N1 flu going around. Bob got on the internet in search of ways to up my number and concluded that I needed to up my protein intake which I could only laugh at since my daily intake is already between 66-80+ grams of protein (that's a lot, as recommended by my guru holistic med doc at UCLA). Then a friend of mine told me she had just seen Dr.Oz on TV talking about how carrot juice helped with the production of WBC so I got busy finding a way to tolerate adding carrot juice to my daily routine. ICK. Don't get me wrong - I love carrots. I enjoy snacking on them. But I just can't deal with drinking them. So I posted a request to Facebook requesting carrot juice recipes that would help disguise the carrot juice and I received lots of great suggestions. Today, I finally arrived at the combination I could actually enjoy - it's equal parts carrot, apple and pineapple juice. So, if it ends up not helping to raise my count I will at least not be upset about having to gulp something awful every day. But I got a late start with it, unfortunately. Since getting home from last Tuesday's appointment where I learned about my crashed WBC count, I've been on a self-imposed quarantine to avoid infections, colds, flu and the like given my increased vulnerability. It was much easier to stay home when Bob was home and could run out and get things I needed and to keep me company so I wouldn't feel isolated or lonely. But he had to head out to work Saturday morning so I faced a weekend of cabin fever with a toddler teething molars (B-R-U-T-A-L). I didn't even get to noon on Saturday before I found myself packing Cooper into the car to get out of the house. It was innocent enough, at first, as I decided I'd play it safe and stay in the car and just drive around while Cooper napped. I drove for over an hour as Cooper snoozed and then when he woke up I couldn't bring myself to just go home and found myself headed for Babies R Us to buy a play yard gate thingie. I decided that if I was going to be stuck at home we needed this thing so that we could create a big play arena in the yard which would prevent Cooper from running off to areas of the yard I didn't want him in, so that I wouldn't have to chase him since I don't have the energy - I am out of breath just carrying him up or down the stairs. Anyway, I was super careful, didn't touch the shopping cart, brought hand sanitizer and used it after touching anything, etc. I figured this outing scratched the itch to get out of the house and I'd stay put the rest of the weekend. Wrong. I managed to resist the urge to go out only until about noon and then we were up and out again and this time I headed to the food market to pick up a few things. To minimize my exposure to crowds/germs I went to a market I don't usually go to, specifically because they are never ever crowded - not even on the weekends - because they're so ridiculously expensive (Bristol Farms). I could only get a few of the things I needed because their prices were so absurd and then we headed home. On the way home I spoke with my friend who asked if it was safe for me to go out to dinner and I couldn't resist the opportunity to stay out of the house a bit longer and we headed to a local spot to meet up. We went early to avoid the typical dinner crowd and had a great dinner. Thank you, Tara, for helping me escape the miserable self-imposed quarantine tonight :). I'm hoping that my paranoia about catching something served me well enough the majority of the week and that I won't have reason to regret my little outings this weekend. Oh, I nearly forgot to mention that on Friday night I had such fun on Facebook with my online girlfriends who saw my post about the #beatcancer initiative to raise money for cancer research and they initiated a "post-off". Several of us chatted via our Facebook status updates - posting frequent updates that included "#beatcancer" to drive the fundraising effort. It was so much fun and I'm in awe - daily - of the amazing love and support sent my way from friends and family who believe in me and want to do whatever they can to help me and so many others who are touched by cancer. Thank you so much for all that you do to help me get through this. Finally, I have a special prayer request. Please pray that my white blood cell count has risen enough, and that my platelet count has remained high enough, to resume chemo treatment this week. I go back in on Tuesday at 11am pacific time, to have my blood tested and if the results are satisfactory then to resume completion of chemo cycle #5b. Thank you so much for your prayers and positive thoughts!! Love, Julie

Friday, October 16, 2009

I'm helping to raise funds to
#beatcancer, by blogging, tweeting
and posting Facebook status

Click here to join me!

Wednesday, October 14, 2009

Cycle 5b update: delayed by a week

My white blood cell count was too low to receive the 2nd half of my chemo treatment yesterday. I was so upset. The doctor had the nurse explain the game plan to me so here's what I remember - they'll have me go back in one week to test my numbers again and resume the treatment. They'll switch me from Neulasta to Neupogen which is a shorter acting drug that stimulates WBC production and I'll get that injected daily for a series of days following every treatment. The Neulasta is the longer acting version which I previously received once per cycle. So why is my count so low? Well there is a cumulative drop that occurs with chemo, and my numbers were dropping with each treatment as they expect will happen. The doc had the nurse tell me that it was actually surprising that this didn't happen sooner. Then there is the possibility that some chemo drugs just really hit you harder than others and that appears to be what is happening with the new chemo cocktail I started a week ago. Besides delaying treatment (thereby causing my treatment end date to be pushed to during or beyond Christmas and thus further delaying surgery and radiation treatment too), the other bummer about this is that I'm now much higher risk for an infection and I basically need to hunker down and stay home as much as possible to avoid coming in contact with things like the pesky swine flu (for which I now also can't get the vaccine until further notice). Bob, my sweet husband, says that I should look on the bright side and take this to mean that the treatment is working. I have to admit that when I was sailing through the first four treatments there was a fear that it seemed to be too easy to be effective. I even asked my doc a few times and he reassured me that doing well during treatment didn't mean it wasn't working. Although I'm disappointed by this news, I'm feeling OK. I'm super tired and I noticed last night that I'm out of breath by the time I get to the top of my stairs - just like I felt whenever I had to get up to go to an appointment or down the hall after a couple months of bed rest while pregnant with Cooper. The nausea I felt on days 2-6 has left me, thankfully. I wish there was something I could do and know that it was helping raise my WBC count but the nurses tell me there isn't anything I can do that I'm not already doing (eat healthy, rest, etc.) - although I know I need more rest than I've been getting these past few weeks so Bob and I are working on fixing that (for instance, we resumed sleep training with Cooper since our trip and other factors have disrupted his ability to sleep long stretches at night). In other news, I am returning to work (from home) Friday on a reduced (very) schedule. I have mixed emotions about this. I'm excited because I miss my work friends and the distraction that work will provide and get my mind off of cancer. Although part of me is worried that splitting my focus could be detrimental to both my health and my productivity. Despite my fears, I need to do it because the bottom line is that we can't afford financially the drop in pay that would result if I didn't go back at this time. If, however, we find it to become too much of a strain on me we will reassess. I don't think that will become necessary. Fortunately, I work for an AMAZING company that has been so incredibly supportive during this craziness. They have never pressured me to return before I'm ready - in fact they encourage me to take the time I need to get well and check in on me and send me encouraging messages and cards and gifts that remind me often how much they care. I am so truly blessed and grateful for their support and love, now and always.

Tuesday, October 13, 2009

Cycle 5b is a no go :(

White blood cell count is too low. Damn. Waiting for doc to come talk to me to find out what now. Ugh.
Sent from my Verizon Wireless BlackBerry

Thursday, October 8, 2009

Cycle 5a, Day 3 - survived first queasy day

On Tuesday I had my first dose of the new chemo cocktail (Carbo+Gemzar). I was excited to learn that I would not need the oral steroids on days 2-3 with this combo and realized the benefit of that omission almost immediately when I got home from the infusion, crawled into bed and slept for three hours. I woke up excited as I realized I wouldn't be spending the first five days following chemo wired on steroids. But by this morning it occurred to me that I was also losing out on the benefit that those steroids brought me - a feeling of strength and well being that carried me through that first five days which are usually the hardest to take with most chemo drugs. When I woke I felt heavy, worn out and uneasy in the tummy. I got up, took the anti-nausea meds and crawled back into bed. For past cycles I could/would just take the meds when I was ready to be up for the day and I never felt queasy or sick but took the meds preemptively as recommended by my doctor. This morning, I needed them just to be able to continue sleeping/laying in bed. Thursday is my breast cancer support group day and there was nothing that was going to keep me away from it since I had to miss the past two weeks of meetings while I was out of town. I really wanted and needed to be with my warrior sisters today - I needed to be understood in a way only they can understand. But I felt terrible and struggled to get out of bed. I decided to let myself stay in bed until I had just enough time to put clothes on, make my shake and head out the door. Poor Bob was worried about me driving because he hadn't seen me feel this crappy since all of this began. He knew I needed to get there. As soon as I walked into the group room I forgot about how I was feeling physically and I was glad to be there. We had a few new members and the meeting was spent almost entirely on introductions which was a bummer for me since I had so much I wanted and needed to talk about. When we ran out of time one of my friends from group asked if I had time to go get lunch and I was so relieved because she was exactly who I wanted and needed to talk to today about what had been bugging me. We had a great lunch and she was an amazing listener and supporter as I shared my frustrations regarding some recent events. I'm so grateful to my friend for being there for me - thank you, T! When I got home my tummy felt even worse than earlier, probably because of some not- so-smart lunch choices (I forgot that some types of food can make it worse and since I was feeling OK at lunch I forgot to be cautious). I took a mid-day anti-nausea pill (first time doing that) and Bob sent me to bed where I stayed until dinner time. I'm so grateful that he knew immediately what I needed (rest) and helped me get it without me even needing to ask. Bob took over with Cooper once the sitter went home so that I could continue to rest for a while. At one point I laid in bed and couldn't stand the thought of not spending time with Cooper today so I got up and got him dinner and spent a few hours with my two favorite men before putting Cooper to bed. I skipped dinner, afraid I wouldn't keep it down, until Bob handed me a can of organic lentil and veggie soup and told me I needed to eat something...so that's what I had before heading back to bed. I turned "Grey's Anatomy" on, looked at the episode description, watched less than one minute of it during which time a character threw up blood and then I changed the channel. There was no way I could handle blood and guts or cancer talk tonight. Then I picked up the laptop and began this post. For those who may be wondering why I refer to this chemo as cycle "5a" (not just 5)--my new chemo meds are administered in two doses, with a week between them. I go back in Tuesday of next week for the second dose (which I'll refer to as "5b")of this cycle and then will be off for a week and then I go back the week after for dose 6a and will continue that process until I complete "8b". Thus far, the fatigue and queasiness are it for side effects. I'm hoping and praying that remains true as I progress through this week and next. Despite how I felt today, I still deem the treatment to be a blessing and a success. I'm grateful for the medicines I'm receiving and view them as God-sent miracle drugs - even if they make me feel crappy. So when I reveal how I'm feeling, I am not complaining at all - just informing. I know that things could always be worse. I consider myself very lucky and very blessed.