Think you're having a "bad hair day"?

If so, please think instead of all the millions of children, men, and women who are having a NO hair day as a result of going through grueling cancer treatment. 

I was one of those that really didn't care too much that I had to lose my hair. I even shaved it all off before it fell out so that I could donate it to a good cause (Locks of Love) before it disappeared on me.  In a way, I found being bald liberating. I didn't have to wash or condition hair, didn't have to shave my legs or armpits, and didn't have to blow-dry either!  But, I did have to contstantly fear sunburn on my sensitive scalp and deal with itchy hats and scarves to protect my noggin.  When I couldn't bear to be seen bald I had several lovely hair pieces to choose from thanks to a great wig store in town (Godiva's Secret). But at home I had to deal with my head being freezing cold at night while laying on cold sheets in an air-conditioned house which of course needed to be kept cold because of the crazy intense hot flashes I was having (chemo-induced menopause).

Part of me wanted my baldness to be seen by others in public - I wanted people to remember that cancer still has no cure. The other part of me dreaded having to relive the horror of my situation by answering questions or seeing people stare at the sick bald lady with the one year old in tow. 

One year ago today I shaved my noggin for the last time. For those that don't know this, your hair still does grow a bit in between chemo treatments. Not all chemo causes hair loss but many do - mine did.  Anyway, the in-between growth was patchy, sporadic and a bit creepy to be honest. So, it had to be shaved off and I would use Bob's electric razor to shave it once per week throughout my treatment from July - December 2009.  On Dec.17th, 2009 I shaved it for the last time (my final chemo was on Dec.15, 2009) before heading to a photographer's studio to have my photograph taken.  Crazy, huh? 

I wanted to document how I looked. I wanted to remember about as much as I wanted to forget. So, here I am, on my final "NO hair day", one year ago.

Photographed by Lee Brubaker Photography

Praise the Lord that I got through a full year post-treatment and here I am just a week ago at a park with my son:


Photographed by Amber Katrina Photography



Thank you, Lord, for your mercy and salvation! I'm so grateful for your healing power and unconditional love. Thank you for leading me back to you. For the brilliant medical care and coverage. For my compassionate employer. For the amazing and supportive family and friends you've placed in my life. For the new perspective. For the daily gifts and miracles. For using me to spread your great news. For every second of precious time.

Psalm 118

1 Give thanks to the LORD, for he is good;

his love endures forever.

2 Let Israel say:

“His love endures forever.”

3 Let the house of Aaron say:

“His love endures forever.”

4 Let those who fear the LORD say:

“His love endures forever.”

5 When hard pressed, I cried to the LORD;

he brought me into a spacious place.

6 The LORD is with me; I will not be afraid.

What can mere mortals do to me?

7 The LORD is with me; he is my helper.

I look in triumph on my enemies.

8 It is better to take refuge in the LORD

than to trust in humans.

9 It is better to take refuge in the LORD

than to trust in princes.

10 All the nations surrounded me,

but in the name of the LORD I cut them down.

11 They surrounded me on every side,

but in the name of the LORD I cut them down.

12 They swarmed around me like bees,

but they were consumed as quickly as burning thorns;

in the name of the LORD I cut them down.

13 I was pushed back and about to fall,

but the LORD helped me.

14 The LORD is my strength and my defense;

he has become my salvation.

15 Shouts of joy and victory

resound in the tents of the righteous:

“The LORD’s right hand has done mighty things!

16 The LORD’s right hand is lifted high;

the LORD’s right hand has done mighty things!”

17 I will not die but live,

and will proclaim what the LORD has done.

18 The LORD has chastened me severely,

but he has not given me over to death.

19 Open for me the gates of the righteous;

I will enter and give thanks to the LORD.

20 This is the gate of the LORD

through which the righteous may enter.

21 I will give you thanks, for you answered me;

you have become my salvation.

22 The stone the builders rejected

has become the cornerstone;

23 the LORD has done this,

and it is marvelous in our eyes.

24 The LORD has done it this very day;

let us rejoice today and be glad.

25 LORD, save us!

LORD, grant us success!

26 Blessed is he who comes in the name of the LORD.

From the house of the LORD we bless you.

27 The LORD is God,

and he has made his light shine on us.

With boughs in hand, join in the festal procession

up to the horns of the altar.

28 You are my God, and I will praise you;

you are my God, and I will exalt you.

29 Give thanks to the LORD, for he is good;

his love endures forever.

Breast cancer sister warriors powwows

Every Thursday I go to UCLA to join other breast cancer survivors, currently in treatment, for what I like to call the sister warrior powwow. It's a wonderful support group with several women from all walks of life, and all types and stages of breast cancer represented. These women are amazing. They get it. I need them. I love them. Occasionally a few of us get together for lunch and laughs after our group meeting is over. This past Thursday we had a really good laugh when three of us walked into a restaurant, took off our hats and looked at each other and realized that we represented the three stages of chemo hair - gone while in chemo, just starting to grow back 6 weeks post-chemo, and the cute pixie cut about 6 months post-chemo. We had the server take a picture. As I was preparing to post this I realized that the three of us in the picture below are currently all the 30-somethings in the group. Love you, ladies!

Jessica, Julie, and Tira January 28, 2010

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!

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

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.

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.

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.

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

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.

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.

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.

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.

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

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).

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

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...

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

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.

Knowing one's limits and asking for help

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

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

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