Tuesday, March 30, 2010
As a cancer survivor, my new life centers around three things: 1) God, 2) Living life to the fullest, and 3) Making lifestyle changes and decisions that will hopefully give me the best possible chance of staying cancer-free. Now that the major treatments are done and I'm in remission, the third item on the above list involves getting into a routine of healthy habits as well as seeking out medically available and appropriate choices based on current studies and my medical history. Last week I consulted with two OB/GYN physicians to determine the appropriateness of hysterectomy surgery and what it would entail. The reasons I've been considering this surgery are as follows. In my twenties I experienced years of abnormal pap smear tests that resulted in numerous procedures to remove precancerous cells. Now that I'm a cancer survivor I do not wish to retain a cervix with a proclivity toward developing cancer. And since ovarian cancer is most often found when advanced I do not wish to allow that to happen given that triple negative breast cancer is often correlated with gene mutations relating to breast and ovarian cancer. Even though I was negative on the preliminary BRCAI/II test, I chose not to have the extended testing which could have revealed a genetic mutation (I know of at least one woman personally that was negative on the initial test but positive on the extended test). I also don't need the hormones pumping through my body. Even though I had triple negative cancer (non hormone receptive) I'm not convinced that hormones didn't play a role in the cancer I had, particularly since I was injected with hormones for 15 weeks during my pregnancy a year prior to my diagnosis. Besides, I'm not going to carry anymore babies in this body - sad but true - so I don't need my ovaries, uturus or cervix anymore. They're being evicted. When I asked the two OB/Gyn docs and also my two medical oncologists why I would/should keep the girlie parts the only answer I got was relating to putting off menopause because of the unpleasant symptoms that it brings (flashbacks, for instance). I just laughed because I've had those since July when I started chemo and I know that's temporary - should last just another year or so at most and frankly I just don't care about that because it's not as bothersome as it was in the beginning. I asked them if having the surgery puts me at greater risk for disease and when the answer was 'no' I could only respond with "let's get er done!" Both Dr.N and Dr.H (the OB/Gyn docs I consulted) liked my logic and agreed it makes sense. Now on to the timing issue. As soon as possible is my answer and here is why - first, I want/need it done before my menstrual cycle has a chance to return, and secondly, I want/need it done at a time that creates the least amount of disruption to my life and those that count on me (family, work, etc.) since it entails a couple weeks of recovery time. I also want to incur the least amount of out of pocket expenses so that means before the end of the current benefit plan year (which ends June 30) since I've already met my out of pocket maximum for the year. I have no doubt that I'll be paying out the maximum next year as well for all the follow up tests and appointments and things I'll have over the next few years but I'd rather not have to put out $2k for a single day of care if it can be avoided. I also have another breast surgery that needs to get done this spring - I need nipples! So I had a brilliant idea - let's trade in the uterus, ovaries and cervix (and probably my port-a-cath too) for a set of nipples on the same day ;). Not only would it reduce the number of times I have to go under general anaesthesia, but it would lower the costs too. Basically I'm looking to combine three surgeries into one - what insurance company wouldn't love that!? Sure, that involves coordinating a couple of surgeons but we all know I don't take 'no' for an answer. So that's the current mission. I've been on the phone back and forth between Dr.H and Dr.C's offices to help keep the ball moving to get a surgery date coordinated with them both. I don't have a set date yet but it will be in May (no later) because Dr.H (the UCLA OB/Gyn I've selected to do it) is out of town the entire month of April. I love Dr.N (the OB/Gyn that delivered Cooper) but he doesn't have privileges at UCLA so I wouldn't be able to combine surgeries if he did my hysterectomy surgery, so that's why I've chosen Dr.H. During my visit with Dr.H he did an ultrasound of my ovaries. They are "as quiet as can be" and he said there are no egg follicles whatsoever. The lining of my uterus was so thin that he said he'd be surprised if there was a trace of estrogen anywhere in my body which means my body doesn't appear to be attempting to get my cycle/fertility back and that's a good thing (for me, anyway). He said that my uterus and other girlie parts in that region are surprisingly small for someone that has had a baby and when I told him that Cooper was born at 35 weeks he was not surprised - said he couldn't have grown much beyond that in such small quarters. Dr.H also said very complimentary things about Dr.N - said he has an excellent reputation. I told him I only let doctors treat me if they have an excellent reputation. He smiled. There are several ways a hysterectomy can be performed. I'll be getting completely laparoscopic surgery with the da Vinci robot. This will make recovery much shorter and will reduce the risk of adjacent structures from being negative affected given the size of my parts. Neat stuff. So that's the latest on the girlie parts. Once I have a date set I'll update everyone that needs to know first (family and work) and then I'll update here.
The New Anticancer Rules Building a strong immune system and destroying dangerous cancer cells is easier than you think. Check out The New Anticancer Rules from the book Anticancer: A New Way of Life on the author's website. Pass it on!
Friday, March 19, 2010
This morning was my 33rd and final radiation treatment!
When I arrived for my final treatment this morning I was surprised by my great friend, Jessica, and her beautiful daughter, Juliette. They drove all the way up from the beach to support me on this important and special day. Jessica brought me a pink boa and a tiara to wear in celebration.
She also brought me a pretty butterfly balloon, a gorgeous flower plant, and a beautiful crystal to help me make rainbows every day (because on the night before my last chemo there was a rainstorm and a HUGE rainbow here in town which I took as my sign that God was speaking to me and telling me everything is going to be OK). There was also the most touching card which I read when I got home and it made me cry like a baby. Thank you, Jessica!
I think I might have to wear the boa and tiara everywhere I go today. :)
So it's official - all of my major cancer treatments are completed! Bilateral mastectomy - done (6/12/09). Chemo - done (7/14-12/15, 2009). Clear PET/CT scan - got it (2/1/10)! Radiation - done (2/3-3/19, 2010). Everything I do now is the icing on my treatment "cake" - finishing up reconstruction, get a hysterectomy, and get zometa to protect my bones. Life is amazing. God is my hero.
I have the most amazing caregivers, family, friends and blog followers too :). Thank you all so very much for cheering me on, cheering me up, praying for me, and everything else you've done for me through this incredible journey. It has been such a wild ride.
It's hard to believe that the big stuff is done but I'm thrilled that it is. It's exciting and scary too but I'm going to dwell on the exciting. I have big plans for paying forward all the love and support and wisdom that I've been blessed with. I hope you'll stay tuned in while I continue to take steps to protect my body and share my learnings and musings with everyone. In fact, I'm going to need your input on some of the exciting projects I'll be working on to help raise awareness and help others get through their breast cancer journeys. So, please, stick around and see what I'll be up to because you're an important part of this journey too.
Always remember to live, laugh, love, and continuously learn. Follow your dreams and your heart. Honor yourself and your loved ones. Recognize the divine source that makes it all possible and celebrate, celebrate, celebrate life.
Wednesday, March 17, 2010
It's hard to believe that I'm just two days away from being done with radiation treatment. Going in every weekday for treatment hasn't been convenient but I've been so blessed with the most amazing team there, not to mention the incredible technology (TomoTherapy). Dr.Z, Nurse Grace, Therapists MaryBeth, Kit, and Joe, and the office team led by Lorraine are all so awesome - so friendly and compassionate. Besides, they appreciate my silly humor and the fun and quirky little gifts I leave for them most days. During the last week of regular radiation treatments I developed some painful red burns which I've been nursing with cool compresses and lots and lots of goo. The areas that are most painful are the crease underneath the breast and a large patch on the far left side of the breast under the arm. My skin feels rough/chaffed and stings like a bad sunburn. It also aches beneath the skin sometimes. I'm incredibly tired. My left/treated breast is swollen, making me larger on that side temporarily. Swelling is no stranger to me given that I now have lymphedema of the left arm. Thankfully, my arm swelling has come down quite a bit, but not completely. I'm sporting the compression sleeve all the time now which is not fun but I always remember that things could be much worse and I'm truly blessed to have gotten through this. So incredibly blessed. So incredibly grateful. This current and final week consists of the "boost" treatments - five of them - which are treatments focused on my scar site because apparently that is where recurrences tend to develop. These boost treatments are shorter than all the previous treatments which is a nice bonus. Instead of being under the beams for 7 minutes, I'm under for just 4 minutes during this final week. I've had three of the boost treatments so far and my final two are over the next two days. By mid-morning Friday I will be all done with radiation treatment, and with that being done I'll be done with all my major cancer treatment! I praise God for these miracles! After radiation is completed I will move on to have the remaining reconstructive surgeries as well as a hysterectomy and Zometa treatment. Sounds like a lot still to be done and I suppose to most that does seem like a lot but compared to what I've already been through I don't see them as very big things - more like finishing touches. I'm working with all the doctors and surgeons to figure out the best timing and whether we can combine surgeries to limit the number of times I go under and the ultimate amount of time spent preparing and recovering. We'll see if they cooperate with me ;).
While visiting my friend Jessica during her final chemo infusion I was approached by a patient in the waiting room who asked me if my name was Julie. When I said yes she asked if I was Julie Olsen with the blog! When I confirmed that I was she told me she follows the blog and recognized me from the pictures I've posted recently. This beautiful young lady was recently diagnosed with triple negative breast cancer and has the same team of doctors that I have and she was there for chemo today. A few minutes later we were all in the infusion room, cheering Jessica on for her final chemo and hearing about this other young lady's story. We exchanged contact information and we're looking forward to including her for our next BC warrior sister luncheon in the next week or two. I want to respect her privacy so I won't say her name until she gives me permission to do so. So, my new friend - please let me know if it's OK with you if I mention your first name or if you'd rather remain anonymous. :) We're thrilled to have met you and look forward to cheering you on as you proceed through your treatment journey. You are in my prayers. Praise God for the countless miracles in every day.
Tuesday, March 16, 2010
Wednesday, March 10, 2010
This morning at the radiation oncologist's office I ran into a gal that I used to see at the chemo center. We were both waiting for our turn with Esther when she recognized me and asked me if I was the one that gave her some mini cookie cutters during the holidays. Yup, that was me. I bring little gifts with me to nearly all of my appointments and I pass them out to patients and staff. I don't always have enough for everyone so on those days I try to give them to people who seem to need a pick me up. The cookie cutters were cute - real little ones with different holiday shapes and I tied a cute little holiday ribbon on them. Anyway, she told me that not long ago she was having a really stressful and tough day and her eight year old son grabbed the cookie cutters and brought them to her and suggested that they make cookies together to "feel better". She said they are the only cookie cutters they have and that they helped turn a horrible day into a fun and happy day for both her and her son. She said she remembered thinking about how I would have been really happy too knowing they had brought them joy. She was right. Hearing her tell me this today filled my heart with joy. It also reaffirmed for me why I give these gifts away - these silly little inexpensive gifts. Because even if they make someone smile for just a moment, they've served their purpose. But sometimes, like in this one case, they make an even bigger mark in someone's day - including my own.
Cooper and Bob have both since come down with all the lovely (not) intestinal symptoms I have been reporting - nausea and the other craziness - so we now know it wasn't the radiation causing it. We've all come down with the nasty stomach flu that's been sweeping the country. I STILL have it - it's been over three weeks for me now. Cooper came down with it a week ago and he's MUCH better now. Bob came down with it earlier this week and came home early from work because of it. I also had a head cold last week on top of the stomach flu. Frankly, between those two illnesses and the radiation fatigue I don't know how I managed to even function the past couple of weeks. Oh wait, I know - yet another miracle of God's doing. That's the only explanation I can come up with and I'm sticking with it. Dr.Z told me yesterday that if my stomach flu symptoms aren't better by the end of the week I will need to see a GI specialist to make sure everything is OK. Lovely. He recommended I get back on probiotics and Immodium to help things along. Check. On the plus side, I've dropped an extra ten pounds from the stomach flu. I'm down 21 pounds since mid-December - isn't that insane!? I now weigh about 5 lbs less than I did on my wedding day. I had to diet and exercise for something like 6 months to lose that amount of weight by the wedding and here I am not making any deliberate changes whatsoever since finishing chemo in December and dropping that weight in less than 12 weeks. Crazy! Well, as soon as my digestive track is normal I'm sure I'll put most of that weight back on when I'm able to eat normally again. In fact, I think I'll get started on that today at lunch because I'm meeting a couple of girlfriends at an organic burger place I just found out about down in West Hollywood. I plan to eat whatever I want (since they're 100% organic there) and I don't care if that means spending the following 10 hours in the bathroom haha. So a recalibrated list of radiation side effects includes: 1) Lymphedema, 2) fatigue, and 3) burns - very minor thus far. Dr. Z looked at my skin yesterday and said I'm doing far better than most at this point in treatment. I've completed 26 treatments and have 7 more to go. I praise God for the numerous miracles in my life every single day.
Tuesday, March 2, 2010
19 treatments down, 14 to go. In just the last few days I've begun experiencing a couple of new side effects - one expected, one not. The one I expected is increased pink/red color of the radiated skin. Thankfully it's coming on gradually but it is much more noticeable now and slightly uncomfortable - mainly the strip of skin just below the breast is where it's become sensitive. Dr.Z looked at it today and said that my skin is actually doing better than most do at this stage so that's great. Hopefully that will continue to be the case. The effect I was not expecting is nausea. Certainly not the level that I had with a couple of the final chemo cycles. The other digestive issues I was having earlier (which have since quieted thankfully) was bad enough. For the last three days I've been unable to consume much more than toast, crackers, fruit and hot tea. Of course, the chemo brain I'm sporting these days has led me to completely forget that I have plenty of anti-nausea pills in my medicine cabinet that I could have been using - I didn't even think of it til just now while composing this blog post. Anyway, I've been so hungry so I go into the kitchen to make a meal and find not much I can make that won't make me want to hurl. Even when I find something that I think I can handle I prepare it and then stare at it, push it aside, and then drop another piece of bread in the toaster while I boil water for tea. The thought, sight and smell of vegetables and meat makes me want to vomit. Bob has been a ginger ale pusher for a couple days and while I loathe the idea of consuming the sugar, I have found taking several sips at night time has helped calm my belly just enough to be able to ignore it for a bit. I sure am glad he is home right now while this is happening because when a wave of it hits me it forces me to sit down and clear my mind of food related thoughts, odors and images and the last two days it's hit me when I was about to prepare food for Cooper and had to have Bob take over. In the plus column, I've lost 5 lbs since last week and am now below my wedding day weight. haha! I'm sure once I start taking those anti-nausea pills tomorrow I'll get those 5 lbs right back. Fine by me. I need to get back to my warrior diet packed with veggies asap. I mentioned the nausea to Dr.Z today and he isn't convinced it's from the radiation but he wouldn't rule it out either since it's a known side effect of the treatment. He said that usually when someone has radiation nausea it starts from the beginning. I told him I'm not "usual" :) in any way. He agreed (because I've been charming him and the rest of the staff from day one with my fun and silly gifts and fantabulous sense of humor haha). Another plus column item is that the physical therapy and lymph drainage massage is working on my arm. Most of the arm has returned to normal - just a small section above and below the elbow is still swollen but has also come down. My therapist, Richelle, felt that the progress is sufficient to allow me to stop wearing the stiff padded compression garment around the clock - woohoo! I have to wear it at night but during the day I can swap it for the class 2 compression sleeve and guantlet. Richelle is fantastic, by the way (if you know anyone in southern CA that needs a great lymphedema specialist/therapist contact me and I'll send you her info). She is extremely knowledgeable, professional and personable and is sought out by physicians and patients from all over. We chat through every treatment session and have come up with a couple of ideas on how to increase awareness and education of the risks of lymphedema in breast cancer patients which is needed because most of the surgeons and oncologists don't educate patients about it enough to help them properly avoid it and/or recognize the early signs of it developing. I'm incredibly blessed and grateful for all the wonderful caregivers and tools in my cancer ass kicking posse and the friendship and support of so many. They all make such a difference in my life (and so many others') each and every day. Thank you, God, for these amazing blessings.