It's a big deal

It's a bigger deal than I thought. In May I was going to get nipples constructed and have my port removed during same visit as the hysterectomy. But the plan changed when the lymphedema swelling resulted in one breast being larger than the other so instead it became implant swap out, minor revisions for symmetry, and hysterectomy/oopherectomy and keep the port til the next surgery so I could use it for another zometa infusion.I was relieved even though the port gets in the way sometimes when trying to cuddle with Cooper and he presses on it or puts his head on it and that hurts or when the line up into my neck gets irritating and causes swelling which looks and feels like a swollen neck node on that side, causing me to panic even though Dr.B says it's ok.

This thing has been an incredible blessing - helping me painlessly (mostly) endure countless blood draws and 12 chemo infusions and 2 zometa infusions, and even used it in my two recent surgeries to get me asleep without discomfort. It has spared my arm veins from being mangled at a time when they would be vulnerable (chemo) and helped me protect my arms especially the left one with lymphedema since it can be poked (too risky for infection and swelling danger).

I've had two clean PET scans since finishing chemo - Feb.1st and Sept.7th so now it is time to say goodbye to my port. Praise God, I don't need it anymore! Every time I say, think or type that I begin to cry. Joyful tears. Maybe some nervous tears mixed in too.

Tomorrow morning I go back in for nipple construction surgery and the port will come out and the scar revised to clean it up (it's ugly/angry looking). As I was getting ready for bed tonight it finally hit me. I'm done (with cancer). Treatment is done (minus the zometa bone protection I will get quarterly for 2.5 more years, the quarterly blood draws and follow ups and of course the nipple tattoos as the final step in reconstruction).
I really am a survivor! From stage 3c to "cancer-free" in 15 months. Wow. Praise God!

I am living proof of the Lord's power and miracles. He woke me up and set me straight and I am listening (and learning). He showed me His work in my life daily through this journey (and ongoing) - with the most amazing support network (you included), the most loving and supportive husband so certain of my complete cure and healing, brilliant and compassionate physicians, nurses, administrators (except for a couple - remember my first attempt to get a port!?), a generous and caring mother and father who came to help whenever I asked...an incredibly supportive employer and team at work who patiently and generously gave me the time I needed to get well without the fear of losing my job or health coverage. The exact right caregivers at the exact right time for my precious Cooper. A bearable (albeit challenging) course of treatment with limited and tolerable side effects. My many friends, family and colleagues who wrote, called and sent generous thoughtful gifts to cheer me up and donations to fund breast cancer research in honor of me! Awesome neighborhood friends who checked in on me, brought meals, helped with Cooper and the dog, and kept me company when being alone was unbearable while Bob was working. God led me to my new church home and family a year ago where my faith in God and mankind has been restored and raised to levels I didn't know were possible. And, of course, He brought me to the bravest, most beautiful warrior sister survivors with whom I share an unbreakable bond for life.

These are the works of an almighty, merciful, forgiving and instructional God who has transformed me and I believe is using me and I am so amazed, so blessed, so grateful. Thank you, Father, for these blessed gifts. I am humbled, grateful and determined to become worthy of them. Please continue to use me, Father, to spread the good news and glorify you in my thoughts and actions. Guide me, Lord, and help me to not stray. Forgive me, Lord, when I do stumble as I often do. Take my worries and fears, Lord, and help me live beyond my own abilities and fulfill your will for my life. Thank you, Father, for your healing and your mercy for me and so many others.

Lord, please wrap my friends Michelle, Theresa, Tracie, Tonya, and Sue in your love and light. Infuse their bodies with healthy fighter cells and medical ammunition to destroy and eliminate the cancer that has taken residence in them. Give them continued strength, hope and faith in your promise and word and bring about complete cure and healing as I know you have big plans for these warriors here on earth.

God, please hurry and show us the cure for all cancers.

This, I pray, in Jesus' name. Amen.

Faithfully,
Julie

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.

Girlie parts update

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.