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.


  1. Julie,
    You are amazing!

  2. Glad to hear you have your surgeries scheduled and also that the Zometa is covered. Good luck getting your bone density test in right away too. I'm so proud of you and will keep you in my prayers. And I will say some special prayers that Cooper starts sleeping better as well!
    Love You, Lissa

  3. Juile,

    I am so glad that you gave me the pink bracelet that had your blog address. I always hoped that I would run into you too at treatment. But I figured that once you finished I might not see you again. Your postiveness just has been an inspiration. This time around has been harder emotionally for me, so your smile and upbeat attitude has been good for me. I am so glad that the Lord had other plans for us to continue to run into each other, and to to be able to communicate now without just seeing each other at UCLA. I hope that your bone tests can be done quickly and that Cooper sleeps well for you!


  4. I'm glad to hear things are well!!! Sending love and hugs!

  5. on a "lighter note" which doc is doctor McHotty?