Thursday, April 29, 2010

Sabina the beautiful

She rocked the surgery and kicked cancer's ass. We love you, Sabina!

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Wednesday, April 28, 2010

Quoted

In the past couple of months I've been honored to be quoted by a couple of organizations in press material. It was kind of a thrill to learn that what I had to say was of interest to these groups. Most who know me know that I am barely ever at a loss for words, on any subject - and those who don't know me can just ask my husband how often I'm rendered speechless or on what topics I don't have an opinion and you'll probably just get laughter as a reply. Most recently, I've been quoted on the UCLA Jonsson Comprehensive Cancer Center website. The center has a Facebook page where they asked how we challenge cancer and my response was used on their website. You can read it here. I was also quoted in a press release by The Non-GMO Project when they reached asked fans of the organization (on Facebook) why they were fans. My response to the question is among the small number of fan quotes that made the cut for the press release which you can read here. I joked with Bob about me becoming famous and I expected him to make a crack about it going to my head or my 15 seconds being up but instead he said he wasn't surprised and that this is nothing compared to what he expects to see me doing in the years to come. I love him so much! :) I pray frequently that God will use me as He sees fit. I'm ready to perform His will and pay it forward wherever I am needed. Whether it be a comment or something much bigger, like the book and website projects I intend to complete. I'm gearing up, listening carefully, and ready to fulfill His purpose for me, whatever it may be.

Tuesday, April 27, 2010

Prayer request for Sabina

Friends and family, A new friend of mine, Sabina, is about to undergo a bilateral mastectomy on Wednesday. Sabina and I met in March at our oncologist's office where she recognized me from pictures on my blog! She has been following the blog for some time now and she is in treatment for triple negative breast cancer. She finished her chemo and is now going in for surgery. Would you please include her in your prayers for a successful, complication-free, surgery and a quick and strong recovery with excellently clear pathology results? Thank you so much for your prayers and positive thoughts for Sabina. Father God, Thank you for bringing Sabina into my life. In Jesus' name, I ask you to fill Sabina's body, heart and mind with your light and your love, protecting her from harm and guiding the surgeons and nurses decisions and actions to perform your will while she is in surgery. Lord, please whisper in Sabina's ear to let her know you've got her back - you've got this. Help her to ease her mind of any anxiety and fear and find peace in the trust and knowledge that you are with her every step of the way, as you have been for me. Show her she is not alone and that she is surrounded by your love. Thank you, Lord, for your grace and mercy. Amen.

Saturday, April 17, 2010

Warriors worry too

Being a cancer survivor is a miracle gifted to me by God. Having a warrior attitude, being as positive as possible, changing my lifestyle to the point it's hard to believe that sour jelly beans were a staple of my diet and now I won't toch them - these are all God's gifts to me too.

But I'm human. Fallen. Susceptible to the attempts by the enemy to cause fear and doubt. And believe me when I tell you that the devil is determined. That bastard creeps into my mind once in a while to wreak havok. I hate him. But he will never win because my life belongs to God.

Over the past couple of weeks I have noticed a piercing pain in the back of my head, always in the same place. Not constant but occasional and lasts long enough to make me sit down and worry. Perhaps I had these pre-BC, I don't remember. But I've been told by the most brilliant docs around that I should pay attention to my body, jot down timing of unusual pain/discomfort, and report it if it persists.

Yesterday I woke up with a major headache. The kind that is typical for allergies or a cold. No worries there other than where did I put that Tylenol. Within a few hours that piercing in the back returned. I sat down and suddenly remembered how a few months prior to my diagnosis and and a couple of times since I've had episodes of seeing illuminated spots like an aura - like an aura migraine only minus the migraine. Crap!

So I cried. And I cried. I couldn't help but think that the whore (cancer) must have invaded my brain. It was Friday night and none of my docs would be in their offices. Besides, iwe are leaving Sunday on a road trip so that we don't waste Bob's unmoveable vacation dates. More about the trip later. Anyway, even if doc would order a CT it won't happen til we get back. I refuse to let unknown fears rule my life.

So I prayed. Father God, please wrap your love and light around my body. Saturate me with it, from the inside out. Please take my worries and fears away so that I can carry on performing your will and purpose for my life. Thank you, God, for protecting me and carrying me out of darkness. I am yours. In Jesus' name, Amen.


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Monday, April 12, 2010

New surgical plan: a smaller boob and nips delayed

This afternoon I met with Dr.C (aka Dr.McHotty) to take a look at my post-radiation construction site (aka my boobs) and figure out what we are doing on May 18th, my next surgery date (besides the hysterectomy by Dr.H, of course). The original plan was that I'd be getting a couple little minor fixes to achieve better symmetry and have nipples created. My left breast has been larger than the right since the original surgery last June. This is due to natural post-surgical swelling, but also lymphedema swelling that comes and goes. Now that I'm 3+ weeks post-radiation, we see that the implant on the radiated side did well. In fact, the excess skin/tissue at the bottom pre-radiation tightened up and lifted which is great as that would have been a "fix" for the next surgery but now wouldn't be necessary. However, at the top and side of the breast I am noticeably larger than the other side and it doesn't appear to be settling down. Since lymphedema is something I'll deal with for life, this swelling will always be an issue to some extent. He gave me three options. I can only remember two of them hahaha (thank you, lingering chemo brain!). One was to accept the lack of symmetry and proceed with the original plan to just clean up and get nipples. The other was to replace the left implant with a smaller one to achieve symmetry and do the nipples a couple months later. I could hear Bob's voice in my mind asking things like "can she still get it all done in the current plan year (which ends June 30th)?" and "will the smaller implant look smaller than the other side when the swelling is calm?" and "can we still do the hysterectomy and breast surgery the same day even though we're now exposing the implant?". I forgot to ask the first question, but I can call tomorrow to find out how much time must pass between the implant swap and the nipple surgery. I didn't bother asking the second question because I feel that he wouldn't suggest it as an option for correcting symmetry issues if he thought it would just create a new case of asymmetry. The third question was my main concern as the hysterectomy is my first priority right now - I want it done before my cycle returns, and I read something in my chart last week that made this more important than everything else (more on that later). Dr.C explained that normally they won't do hysterectomy or other OB/Gyn surgery at the same time as implant surgery because the OB/Gyn surgery is generally considered "dirty" in terms of infection risk. However, since they're doing it with the DaVinci robot and that part of my surgery will be performed last, after the breast surgery is done and closed up, he is comfortable proceeding. So the new plan for May 18th is to replace the left implant and proceed with the hysterectomy. Nipples will be done after I'm healed and the port will come out when the nipples are done so that I can use it for the next Zometa treatment if I get it before the nipples are done. I'm happy with this plan even though that means I won't have the nipples as soon as I had hoped. But I know that the smaller implant will feel better and less alien and uncomfortable when I have swelling since it won't feel like it's under my chin and in my armpit and I'll be less self conscious about being lopsided (since I won't be anymore) and will not have to hide it with layers of under garments like I do now - this is a big deal as summer approaches since most of our summer involves triple digit heat around here. So that's the plan! Dear Lord, thank you for blessing me with such brilliant and compassionate physicians! Malachi 4:2 But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall.

Tuesday, April 6, 2010

Infused, felt up, thumbs up! Long update

This morning I went in for my first Zometa infusion. It went smoothly and was much quicker than chemo infusions were - just 30 minutes. ;) However, anyone that knows me knows that I can't go to the cancer center without finding sister warriors to chat it up with and of course catching up with all my favorite nurses. I updated Dr. Barstis on the Zometa coverage (that it's covered by my prescription benefit plan) and he was thrilled. I also mentioned that one of my friends back east got hers covered based on getting a bone density test that revealed her as having osteopenia (precursor to osteoporosis) which is pretty common for post-menopausal women (which I now am - have been menopausal since chemo began in July and will be from here forward since the ovaries are coming out next month). I swear that I saw him mentally kicking himself as the words came out of my mouth and he immediately agreed we should get me in for the bone density test since I very well could have that situation and then the administration of the Zometa would be covered as well. So tomorrow I call the imaging center to see if I can get in asap to have that quick test done. Thank you, Anne, for sharing that very helpful information with me this morning :) One of my favorite sister warriors was there - a beautiful woman named Theresa - with her hubby who has been there every time I've seen her there. I'm so thankful to God that He has blessed Theresa with such a supportive and loving husband. I always enjoy talking to them both when we are there at the same time. Today I gave Theresa one of the pink bracelets that my awesome friends Nicole and Diana had customized with my blog address on it - my sneaky and amazing friends were selling the bracelets in the early days of my diagnosis to help raise money for my out of pocket medical expenses (thank you, ladies - I love you so much!). During a recent road trip and visit to see Diana and her family in Arizona Diana gave me a big stash of the bracelets to take home with me so I put a few in my goody gift bag that I bring to every doctor appointment. Why am I jabbering on about this?...well I was thrilled to get a blog comment from Theresa just now since she saw the blog address and came to check it out. We've chatted during our visits to the cancer center but had never exchanged contact info and now she knows how to find me and she has a great blog too that I can now follow. I thank God every day for blessing me with the many gifts He has given me including allowing me to meet so many wonderful people on this crazy journey. Theresa is battling a recurrence of triple negative breast cancer. Please keep her and her family in your prayers. I asked Dr. Barstis to examine me to feel for anything in my nodes under my arms, across my chest and in my neck. Most times that I'm there he pulls up a stool next to the chemo/infusion chair to chat with me and I hardly ever was examined during my 6 months of chemo but my sister warriors who were being treated elsewhere were being examined at every single chemo infusion. I was only getting checked if I expressed a concern or mentioned a funny feeling. I was put in a private room and Dr.Barstis checked my neck, shoulders, my armpits, my sides and the top of my back and said he didn't feel anything abnormal. Sigh of relief there because I was telling him how I sometimes feel little pea sized bumps on my chest and it just freaks me out. He told me that I should just call and come in to be seen any time I feel something that worries me rather than wait til a scheduled appointment. I assured him I wouldn't wait it out if I wasn't going to be seen within a couple of days but he said I shouldn't have to even wait that long and worry myself sick. I agree. ;) Before leaving I asked how often I'll be scanned (PET/CT) and he said every six months the first year and then annually after that for the first 5 years. He told me that with triple negative the recurrence risk is high the first 3-5 years but that if I can just get past the 3 and 5 year marks without a recurrence I'm golden. My next PET/CT scan will be in August since I had one in February. After my visit at the local UCLA cancer center I headed down to the main UCLA campus in Westwood for my follow up visit with my surgical oncologist, Dr.Chang, who is the Director of the UCLA Revlon Breast Center. It's standard to have a 3-month and/or 6-month follow up with the surgeon but I hadn't been back since my 2-week follow up back in the summer. I saw the nurse practitioner first and she gave me a good feel up too - cool, twice in one day haha! I told her what I told Dr.B about feeling the little pea sized bumps and feeling panicked and how I've had to force myself to keep my hands off my body at night time since I end up laying in bed unable to sleep and not able to schedule a check-up since all the doc offices are closed at 2 am haha. She told me about their proactive follow up program and suggested I enroll. I would be checked by them every 3 months with a physical exam and get checked up on by the psychologists whom I know through the support group program and the physical therapist (for lymphedema) who I have also met and who works with the specialist I've been seeing. She said any time I have a concern or worry about something I feel I just call or show up and someone will examine me and act as needed. I enrolled and booked my first/next follow up appointment for 3 months from now. I saw Dr.Chang and she examined me too - that's 3 times in one day - woohoo! LOL ;) She reiterated what Dr.Barstis told me about the triple negative recurrence risk in the first few years. She said at 3 years without a recurrence my risk goes down by 80%! At 5 years it's another huge step down. She said that TNBC (triple negative breast cancer) mostly disappears not to rear it's ugly head again if you can get past that magic 5 year mark without a recurrence. Cool. I told her what I've been doing to reduce my risk - the lifestyle changes - avoiding chemicals/toxins, boosting immunity with major diet changes and the supplements that Dr.Hardy recommended, exercise and managing stress with meditation and relying upon my support network and my faith. I know this doesn't mean it can't happen - I know a number of women personally who currently are battling recurrences in spite of doing all they knew to do to minimize their risk too. There's no guarantees. But if I can confidently say that I'm doing everything we know of that may help then I won't have any regrets (or not many anyway haha). My big challenge at the moment is improving my sleep at night. Cooper had a great week of sleeping through the night last week but it has unraveled and he's up several times a night again. Ugh. I'm not sure why but it *might* be a return of (or new strain of) the stomach bug we all had because everyone we visited with in Arizona has since been sick with some strain of the bug and of course Cooper threw up on the way home from that trip and then again the other night so that might be it. I hope and pray that he returns to the good sleep pattern I had a glimpse of because I felt great when I was getting 5-6 consecutive hours of uninterrupted sleep. Now it's more like 2 hours at a time separated by Cooper screaming and making demands requiring intervention. ;/ I'm also trying to incorporate guided visualization meditation into my daily routine because I haven't been doing it often enough - have just been doing it when I am panicked or worried. And the exercise is progressing with longer and more challenging walks on a more frequent basis but I need to push myself harder to ensure I get my heart rate up for a full 30 minutes or more and do it 6 times a week instead of 3-4 times that I'm doing right now. One more bit of news to report. On my way home from UCLA this afternoon I got the call from the OB/GYN surgeon to confirm my next surgery date. I WILL be getting nipples and having a complete hysterectomy (removal of uterus, cervix and ovaries) on May 18th! I will also have them take my port out. I considered keeping the port for the Zometa infusions but since those infusions are just 30 minutes long and only every 3 months, I think I'll have it taken out so I can feel more "normal" again and can compare the feeling on one side of my chest with the other (when I check myself out it helps to compare both sides so that if they feel different there's more reason to question and raise a flag but if they're the same then that means less reason to be concerned but I can't do that on the level three nodes that are on the chest front because the port is in the way). I also feel that saying goodbye to the port is important to my psyche not just to feel more normal again but to say that I'm done and won't need it anymore. I don't want to keep it "just in case". Sure, having it would make Zometa infusions easier and less painful (though I plan to still avoid the pain by using numbing cream on my arm when we switch to that infusion location) - but I want the universe to hear me loud and clear that I am done with cancer and don't need this port for treatment anymore. Besides, Blue Cross better be grateful that I'll be saving them so much money by combining three surgeries into one - that's right, nipples, hysterectomy and port removal - each usually gets it's own surgery but I'm doing it all at once, lowering costs and reducing my exposure to anaesthesia. Oh yeah, I'm a warrior! LOL :) Big day! No wonder I'm pooped! Off to bed for me! But not before giving thanks and credit where it's due. Thank you, Lord, for this and every day. Thank you for the countless blessings you have bestowed upon me and my family. Thank you for the amazing care and support that I receive every day. Thank you for my incredible family, friends and everyone that you bring into my life. Thank you for revealing yourself to me. Use me, Father, to perform your will and purpose for my life. I am here, at your feet, with empty cups to be filled. Thank you, God, for loving me. Love, Julie PS - Dear cancer, I'm done with you. Goodbye.

Monday, April 5, 2010

I'm quoted in a press release...

...here it is... http://www.nongmoproject.org/2010/04/05/non-gmo-project-facebook-fanbase-surpasses-10000-members/ If you'd like to learn more about the importance of Non-GMO please read the Non-GMO Project website at www.nongmoproject.org. Our food supply is currently in danger and we need to get educated and demand better for the current and future generations.

And next comes Zometa...

I start Zometa treatment in the morning. It's a biphosphonate drug to strengthen the bones. It's been used for people with osteoperosis and breast cancer that has spread to the bones. Neither of those uses applies to me though, thank you God! However, recent studies have shown promise for the drug to help avoid cancer spread to the bones and since I was triple negative and thus don't qualify for any of the great advances that my Estrogen+ and HER2+ sister warriors are benefitting from, my docs and I have decided we'll use whatever we can to give me any possible advantage. The side effects are considered rare and mostly minimal so we feel the benefit outweighs the possibility of the potential side effects. There is one major nasty side effect possible - it's called osteonecrosis of the jaw (basically means death of bone tissue). I am not in any of the known risk groups for this condition but that doesn't mean it can't or won't happen. I am determined for it not to happen and one way I can help prevent it is to keep my teeth and gums as healthy and infection-free as possible. I will have to avoid major dental work while on this medication and possibly for a few years afterward since the drug has a very long half life. This is an expensive medication that most insurance companies refuse to cover and mine being no exception. We were about to pay for it out of pocket at the tune of $1300 per dose with doc prescribing me to receive it every 3 months for 2 years (IV administration). However, another miracle occurred and we found out that my prescription coverage company covers it and my portion is $40 per dose! Thank you, God! So, my prayer request is for God to protect my body from rogue cancer cells that may have survived all my treatments and to protect my bones and jaw from the negative side effects of Zometa. I have a lot of plans to accomplish while I'm still here and I hope and pray that God's plan for me is to carry out those plans in my earthly form. I know that it's not up to me and only He knows his plan for me so I ask Him often to reveal it to me so that I can perform His will and give this life the most meaning possible while I'm in it. In addition to starting Zometa tomorrow I also will go to UCLA to have a follow-up meeting with the surgical oncologist that surgically removed the cancer from my breast and lymph nodes last June. I plan to have both her and my oncologist (in the AM) feel me up pretty good because I often feel little bumps in my chest below the clavicle area that freak me out. It's amazing how I used to be reluctant to disrobe at doctors' offices in years past and now I'm quickly getting topless and asking the doctors to feel around and make sure things feel normal. That's just part of the new normal I guess. *sigh* I have a friend who just had a bilateral mastectomy after a MRI revealed some lesions that they weren't able to safely biopsy the normal way. She tested positive for the BRCA gene mutation and decided that she would go ahead with the mastectomy regardless of whether it turns out to be cancerous or not. She had her surgery last week and is now anxiously awaiting the pathology results to determine if she can be considered done now or if any treatment will be necessary. I'm praying that she is done with the craziness now and I hope you'll join me in praying for her too. I also pray that her recovery is quick and free of any complications. I'm still waiting for word on my surgery date - I keep harassing the two surgeons' offices because my husband needs to bid his May schedule and we need to know when this is going to happen so he can request time off at the time of the surgery since I'll be spending the night at the hospital and my mom needs to know when to arrange to fly out to help me out the first week after surgery. I also need to figure it out so I can effectively plan my exact date for returning to work. Unfortunately I think they're ignoring the phone when my number appears haha. Don't they know who they're dealing with!? hahaha :) Wishing you blessings of good health, love, and God's favor, always. Love, Julie

Thursday, April 1, 2010

Full house

Three triple negative, two HER2 positive warrior sisters - all 30-somethings.

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