Tuesday, June 30, 2009

Turned lemons into lemonade

After a horrible morning (see previous post) at Northridge Hospital, Mom and I stopped for breakfast on the way home from the hospital and decided we'd go home, take a nap, and then when the sitter leaves mid-afternoon we would take Cooper to the pool and just unwind. We spent a couple of really relaxing hours at the pool, watching Cooper putter around in his floatie in the baby pool which is so shallow that Cooper can touch the bottom with his feet while in the floatie. It's fun to watch him as he realizes he can move about all on his own without mom or grandma holding onto him. He wore himself out doing this and then proceeded to take a 2 hour nap from 4-6pm so of course we had to wear him out again this evening to get him tired enough for bed. Cooper is my pride and joy - my best reason for winning this fight. I love him so much. While relaxing at the pool my mom pointed out that this morning's mishap and the new procedure team/date gives me some time to breathe before the next procedure and treatment starting. Every week I've had something done which has brought more and different types of discomfort and that could be the pattern throughout the treatment as I discover which side effects I will experience. But between now and the 10th of July I won't be poked, yanked on, cut into, or injected. I can actually focus on healing more, on spending quality time with my family before things get even crazier. I was concerned that the earliest date I could get the port placement scheduled with the UCLA surgeon is just a couple days before chemo would start because I had read it should be placed 1-2 weeks ahead of time but the surgeon's assistant told me that was not true and that it could be placed and used for treatment as early as the same day. I will call the oncologist to verify that tomorrow but if that's indeed the case then I'm glad I didn't get it today, mishap or not. Next series of procedures now includes expander inflation on the 10th, port installation on the 13th, chemo starting on either 14th or 16th. It's a lot, so I'm glad to have this little break between now and then.

Horrible morning....but taking charge

This morning was a nightmare but I can't say I'm surprised because even the scheduling process for the port-a-cath placement procedure was disorganized and left me feeling like I was being lost in the shuffle. Last night I realized nobody from the hospital had called me to ensure I knew what I needed to do for prep or where I was going since I've never been there before (it's a small local hospital, NOT UCLA). This morning we got to the hospital and quickly realized we were dealing with another "C" team. They were totally disorganized and I was feeling invisible. We couldn't understand anything anyone said to us and had to keep asking them to repeat themselves. We were shuffled around because the outpatient admitting staff weren't there yet and the regular admitting staff were treating us like I was inpatient. They handed me instructions on how to prepare for surgery! Um...gee...you think you could have passed that information along BEFORE I arrived for surgery that day? Thankfully, I had done all the legwork on my own to find out what prep was needed (again, because nobody bothered to take proactive steps to inform me). There was another patient there awaiting instructions for admitting and we overheard him tell a staff member that he'd been there yesterday for surgery but since nobody told him how to prepare he had breakfast before arriving and when they asked him when he last ate and he said that morning he was sent home and told to come back today. Obviously they have issues there. Hopeful that it was just the admitting staff/process that was at issue, we proceeded to the lab for blood work. Well, nobody was there and I was told to sit and wait on a stool in the hallway! Someone showed up 5 minutes later and drew my blood but didn't bother telling me where to go next. We wandered back to admitting to ask "what now?" and they sent us up to the short stay surgery unit. That's where things got worse. I was given a gown, told to undress and put it on and then the nurse came back to take vitals. Another nurse came in to start my IV and she jabbed my hand so hard that I screamed in agony and began sobbing from the pain. I could not believe she hurt me that badly. I'm not a wimp either - I've had soooooo many IVs, blood draws, injections, etc. over the past 2 years and never before has anyone hurt me like that before. And, despite the agony she put me in, she still didn't even manage to place it correctly and had to remove it. I told her to not touch me anymore and with my mom at my side we discussed what we thought we should do. It was clear to both of us that the staff at the hospital were not highly skilled and didn't seem to care about the patients because not a single person looked me in the eye or asked me how I was this morning. No attempt was made to put my mind at ease about what I'd be having done. I had no confidence in their ability to keep me safe or comfortable so I decided I couldn't go through with it and to leave. I got dressed, informed the nurse we weren't staying and we left. On the way out of there, my mom reminded me that Bernie Siegel, the physician and author of the books I've been reading, would have recommended I leave - he stresses the importance of taking charge of your care and following your gut instincts and making sure you have confidence in your healthcare providers. It was good for me to hear this reminder because I was feeling as though I had overreacted, that maybe I should have sucked it up and gotten it over with. But as we continued to talk I felt better and better about leaving. If they didn't care enough about me to look me in the eye, greet me with compassion, or do a solid job starting the IV, then how could I trust them to monitor my vital signs after surgery, or to do the right thing for me if things went wrong? If they didn't bother taking the time to give me proper instructions prior to my arrival, how can I trust that they themselves are adequately prepared for their part of this process? If they don't take their jobs seriously, patients are at risk. So we left. I called Dr.Glaspy's (my oncologist) office and requested the name of a surgeon at UCLA to have it done there. Got a name, called his office and spoke with his staff. Got their fax number so that the local oncologist can fax the order to him instead. It looks like I'll now have it down on the 13th down at UCLA. When I had my bilateral mastectomy at UCLA I had full confidence in the nurses and doctors there. Their admitting process was smooth and at no point did I ever feel any worry that I wasn't in good hands. That's where I need to be. I know that the local doctor that referred me to the doc for today's procedure has confidence in the guy that would have done it today, but I don't know if he has any idea what a crazy mess the hospital staff is over there. I plan to inform him. I also plan to write a letter to the hospital we were at this morning to inform them of what happened and how it made me feel. I am so grateful that I was blessed with courage and guts to speak up for myself. I can't imagine how awful it must be for those that aren't comfortable speaking up when they feel things are not OK. Patients have rights and unless you exert them and trust your gut, you can find yourself in a lot worse pain or trouble than you started with. I'm glad I trusted my gut and walked out.

Monday, June 29, 2009

Ah...drain-free...and chemo scheduling

Drain #3 (well, technically it was #2, but it was the last one of three to come out) was finally removed today. Yay! The nurse kept acting weird and I finally asked her what the problem was and she said she was concerned we might be taking it out prematurely. I asked her why she thought that since she has been telling me for a week that once it's been putting out less than 30 cc per 24 hours it would be ready to come out and it's been under that threshold for 3 days now and she explained that once it's out there's no going back and that the only other way to get the fluid out if it accumulates is needle aspiration. I wanted to say "so what?" since I've been poked and prodded constantly for weeks now (not to mention spending 5+ months getting weekly needle injections during my bed rest/pregnancy) but she explained that since I have the tissue expanders in my chest there's a risk of puncturing them when needle aspiration is performed and if THAT happens I'd have to have another surgery to get them out. At that point I fantasized about looking her in the eye and telling her I hoped that would happen because I'm not too thrilled with these expanders - they hurt and yet they haven't even been inflated yet - they feel awful and I know it'll feel even worse when they start pumping them up to stretch my skin...at this point I'd love an excuse to say take them out and let me have small B cups - I'd be happy with that. I just kept quiet though - I don't know why, maybe it's because I was too wrapped up in the anticipation of the icky feeling of having the drain tube removed - it's like they're pulling your guts out. As soon as it came out, I started leaking! That didn't happen when the other two drains came out and the nurse was worried and started sopping it up with gauze. I reminded her that the threshold meant there's still fluid - that the other ones were removed when the same amount of daily output was occurring. She didn't seem to care. She gave me a bag of fresh gauze and tape to take home with instructions to keep it dry and clean and sent us on our way. I'm so glad I'm free of the ace bandages that were wrapped around my breasts and my waist 24/7. The breast area was wrapped to keep the drain tube close to the incision and my body and my waist was wrapped with an ace to use as a hidden pocket to tote the drain bulb around without having to wear a jacket or sweatshirt with a pocket and risk Cooper seeing the tube and pulling on it. It was uncomfortable, to say the least. As soon as those came off - even before the drain was removed - I felt better, free. In the morning I go to the hospital for an out-patient surgical installation of a port-a-cath in preparation to start chemo soon. It will take up more than half of my day. I will be so glad when that is over with and hope it won't irritate me all the time. ;/ I have my pre-chemo meeting at the local UCLA cancer center on the 7th - to go over how the chemo will be administered, how it could affect me, what preemptive medications I'll be given to combat common side effects, etc. Then, the following week I'll receive my first treatment. Before I start the chemo I am going to schedule a family photo shoot to mark Cooper's one-year birthday so the pics can be taken before I lose my hair. ;/ Gah! ;/ I don't care much about my messed up boobs or losing my hair, but I don't want to ruin happy Cooper milestone memories with cancer-related issues/reminders if I can avoid it. Hey cancer, you're really crimping my style - I hope you're scared as hell because I'm gonna blast you into oblivion!

Sunday, June 28, 2009

Gearing up for phase two

This past week of healing from the surgery has been good - have needed the pain and muscle relaxer medications only once per day, if that (I'm still sore and get tinges of sharp pain in some spots, numbness and tingling in others but compared with the first week it's a huge difference). I am still not cleared to pick up Cooper or to drive so I'm incredibly grateful that my mom, Janet, is here to help out. She's amazing and Cooper adores her. She's able to be here because of an amazing program at her employer where employees can donate unused vacation time (that they may otherwise "lose" if not taken by a certain date) to a bank of hours that employees in need can apply to receive for emergency situations. When my mom's boss heard about my diagnosis and that my mom needed/wanted to come out here to help me through this, he immediately submitted a request to get her a bunch of paid time off since he knew she'd exhausted her earned vacation time for the current year. It's an awesome program for which she and I are both very grateful. Anyway, I have one drain remaining on the side where I had numerous lymph nodes removed, but I feel fairly confident that I can have it removed Monday if we make the trek down to UCLA - and I think we will do that since the incision where the drain comes out is really bothering me - no sense in waiting til my Wednesday appointment down there if it's ready to come out. I also would like to have it be gone when I go in Tuesday morning to have a port-a-cath installed in my chest (another surgical procedure) - I'm sure the radiologist placing it would want it out before the port placement too. Anyway, it's something I'm NOT really looking forward to but has to be done. I just don't like the idea of having some hard plastic thing under my skin which can be seen and felt 24/7. I realize that the functionality of it will be of great benefit to me in that my chemo treatments will be easily administered without destroying the veins in the one arm I can be injected into, particularly since I'll be undergoing 8 cycles of chemo. It can also be used for blood draws which will occur before every treatment plus sometimes in between treatments. Still, the idea of this thing creeps me out. I have to ask the plastic surgeon or his staff tomorrow whether it's even OK to have it installed in my chest since I have the booby tissue expanders in. I think the other location option is in my arm - I'm not sure which would be worse to be honest. Besides getting the drain out, I have two other phase 2 tasks to accomplish Monday - call the oncologist to schedule my first treatment, and attend a support group. I am definitely planning to make that call. The support group I'm not totally sure about quite yet. Here's the thing - the group is for people that are "in treatment". It's not focused on a particular type of cancer, or those in a particular stage of illness, and thus I could find myself surrounded by reminders of what my disease could turn into rather than focusing on what it is now and the hope that it won't go further. I know there's value in connecting with others that have/had cancer - that's why I signed up with the organization in order to participate in their groups and services - but I think I am going to look for a breast cancer specific group (this organization doesn't offer one right now) that I can attend instead so that there is at least that aspect of commonality instead of walking into a group of all types, all stages, all everything. I just really need to channel my mental energy into positive, hopeful and determined states of thinking and that is challenging enough without being confronted with what I imagine I might find if I go to this group. There, I made up my mind. haha. Instead of going to that group I will look for a different one. I also need to look for a different therapist - the one I went to on Thursday was....well, let's just say she's not for me. I'm fairly savvy in the area of individual therapy and I know what works for me and what doesn't so I need to make some calls to see who else is nearby that might be a better fit. I haven't been getting the amount of sleep needed for a healthy individual, let alone a person like myself battling cancer and in need of a boost in immunity, so I'm taking steps to address that problem. We resumed Ferber training with Cooper this weekend and I'm thrilled that it's been quite successful and not at all painful as our last attempt was. I actually managed to eek out 10 hours of sleep last night - broken into 3 different "sections" with just minimal interruption time and that was amazing - that's the most sleep I've had in one 24 hour period in over a year! I had to help myself a bit by taking some diphenhydramine but it worked which is great because I really don't want to take prescription sleep pills since I do need to be responsive if Cooper does wake up. Anyway, I think the sleep issue is finally being worked out now that we've got Cooper doing much better (just 1-2 wakings per night compared with being up every 2 hours all night long before). That's good news :) Speaking of sleep....it's time to do just that. Good night!

Thursday, June 25, 2009

Breast cancer treatment research news:PARP Inhibitors

Here's an article about the PARP Inhibitor treatment research I mentioned in my previous blog post: http://www.medpagetoday.com/HematologyOncology/BreastCancer/14851. It'll be two weeks before we know whether or not I have the BRCA I or II mutation but regardless, the point is that a ton of productive research and treatment options are on the horizon with great promise. That's good news worth celebrating! Edited to add (to answer questions): Right now, the PARP treatment is targeted therapy for those known to have cancer from the BRCA 1 or BRCA 2 gene mutation (which I gave a large amount of blood at UCLA to be tested for and for research purposes) - I'll know in a couple weeks if I fall in that category. It will be interesting to see if I am or not because triple negative cancer often is associated with the gene mutation, but not always, but then again there isn't a very strong history of breast cancer in my family - my maternal grandmother and paternal great aunt. There is LOTS of cancer on my dad's side of my family but not my mom's side. However, even if I do, right now the treatment is only available through clinical trials for which I am not a candidate. But if the remaining trials do well and the treatment(s) pass the necessary tests, they could become available to patients needing it outside of the clinical trial setting within 1-3 years. Also, this is but just one of the new class of drugs being tested for use to battle breast cancer. There are approximately 50 active clinical trials in the U.S. for drugs targeted for triple negative breast cancer. I'm not sure how many drugs/treatment therapies are being studied across those trials, but the fact that they're doing it and have seen some promise, keeps me and others in my situation hopeful and eager to hear more about what's to come.

Yesterday's big day at UCLA

Another novel-length post ahead (sorry!)...thanks for keeping up with me. I'll try to be more brief in the future - I just really like to give the details in hopes that it'll help someone else somehow. We had a great day at UCLA yesterday! Bob and I headed down there at 6:45 am so we'd have plenty of time to battle L.A. rush hour traffic and arrive in time for my 8:30 am requested arrival time for the big meeting with Dr.Glaspy. I mentioned in a previous post that Dr.Glaspy is considered the guru, the brilliant oncologist, often referred to as the best in the country. Often times, brilliance can lead to arrogance, ego, and/or other unpleasant personality traits but I'm pleased to report that is NOT the case with Dr.Glaspy! When he walked into the room, I looked at my notepad and saw my #1 comment/question for him "tell him not to give me statistics or predictions on life expectancy - tell him I will decide that" and remembered that telling this to Dr.Barstis was successful and set the stage for the discussion. But suddenly I held my breath and decided to let this brilliant guru speak first. I decided in that moment I needed to let go and trust him, to trust God for putting me in this man's office, and see where it goes. Thankfully, it was a wise choice. He didn't discuss statistics or life expectancy AT ALL. We got right down to the business of discussing the details of this cancer, where it was found, what it is known to respond to and not respond to, and what customized cocktail the guru would be recommending for me. We discussed clinical trials too. At this time I only "fit" into one active study for triple negative breast cancer and it's for a drug called Avastin which has shown success in metastatic cancers (including breast cancer). We discussed the pros and cons of adding it to my treatment and we decided it was not appropriate for me because it would eliminate the ability to use a set of known successful chemo drugs (platinums) because of the way the study is being done, and also because in another study Avastin thus far has showed no improvement for adjuvent use in patients with colon cancer (meaning, for those whose cancers had not metastisized to other parts of the body), and there's always the chance that a new drug could negate or lessen the effectiveness of the proven successful treatment that would be given along with it. Although I won't be participating in that clinical trial, Glaspy confirmed what I had read up on regarding triple negative breast cancer trials - that the rest of them are for those with metastatic breast cancer (Stage IV - thank God I'm not in that category), and some of the drugs being studied are showing great promise and could be available in 1-5 years (in fact, a story about one class of drugs being studied was featured on NBC Nightly News last night. Another that showed success with triple negative breast cancer was reported on at an oncology conference just this month. They're still in early phase trials but nowadays that could mean new drugs becoming available in as few as 1-5 years, buying time for many of us with aggressive types of cancer shown to have a very high rate of recurrance. Long story made not-so-short (sorry!), the chemotherapy regimen that I will be having is very aggressive. It was selected by Glaspy for me in response to me stating that my goal is to "blast this f*cker* and it's rogue cells into oblivion and beyond". Glaspy beamed and responded "You're going to do just fine." :) Here's the plan: 4 cylces of: Taxotere + Cytoxan (TC), PLUS 4 cylces of Carboplatinum + Gemcitibine (CG). The TC is given every 3 weeks, and the then the CG combo will be given in two doses on day 1 and day 8 then off for 2 weeks then repeat until done. After chemo is done I will have radiation (daily treatments for a period of 4-6 weeks). I can start as early as 10 days from now. I need to have a port installed in my chest because of I have only one arm that can be injected into and the treatment plan would destroy the small number of injection sites on my arm and be quite painful and risk infection and other complications that can be easily avoided with a port. Besides the port, the final drain from the breast surgery needs to be out before we start - it should be out Friday or Monday. We are really impressed by Dr.Glaspy- not just his brilliance in his field, but also by his "bedside manner". And, at the risk of sounding arrogant myself, I dare say that I think he was impressed by me too. Why? Well...he seemed to really appreciate my spunk, my determination, and I recall a moment where my smile illicited a great big smile back from him. He even expressed that he could tell I am tough just by the early decisions I've made (bilateral mastectomy instead of single, and by expressing a desire to have the ovaries out too). I remember another UCLA doctor telling me that Glaspy is brilliant but they also warned he is "factual", "to the point", "doesn't beat around the bush". When I heard that I recall thinking to myself that I normally appreciate and respect that approach more than any other but that in this instance, where my life is potentially threatened, such an approach could scare the crap out of me and whittle away at my confidence and warrior status. Glaspy was factual, straight-forward, and to the point, but he was compassionate, confident in my ability to kick cancer's ass, but realistic about the need for multiple plans for the future paths that we may find ourselves on depending on how this first war on cancer goes. We discussed many other things - the BRCA gene mutation test (which I had yesterday afternoon while on UCLA's campus - results take 2 weeks) and how the results might impact my decision to keep or remove my ovaries...I told Glaspy they're coming out either way - results will just help me determine whether it happens in the next 1-3 years or whether I wait a few more years beyond that but either way they're coming out well before I reach 50. We discussed my intention to take an integrated approach to my treatment/wellness - combining medical/conventional treatment with nutrition, supplements, exercise, psychological therapy, guided imagery, meditation, etc. and I asked him "am I missing anything that should also be on this list?" and he said "Nope, you've got it covered." Bob chuckled. I asked if anything is off-limits (food, beverage, supplements, etc.) during treatment and he said "No." I asked qualifying questions about that since I'd heard and read that antioxidants can interfere with chemo and he said that was hogwash and that the effects of anything like that I could possibly take won't stand a chance against the chemo regimen I'll be getting. Wow. I asked him who the best holistic practitioner was and he said Dr.Hardy (who I promptly got scheduled with - seeing her next week). When discussing who would install my port, he explained how easy it is and how any schlub of a surgeon could do it and he said "even (insert name of first surgeon I consulted) up by Dr. Barstis could do it." I laughed, looked Glaspy in the eye and replied "Dr.S is not touching me." He cracked up and said "I'm not a fan of him either". Bob and I joked with him and said that had he walked into the office and just said that alone we'd have said "you're hired". haha. We were pretty stoked by this additional affirmation of our decision not to have Dr.S treat met and to instead go to UCLA. :) Glaspy agreed it makes sense for me get his regimen locally at Dr.Barstis' office (yay, no ego or politics from this guy either!) - there's the lengthy chemo sessions plus the injection required the day after so commuting to/from UCLA for that is crazy and unnecessary (double yay!). That was all before 11 am! Haha. We were down at UCLA til nearly 3 pm. Besides meeting Glaspy I was checked out by a nurse who confirmed my drain must stay in a bit longer and that my swelling is normal and healing is on track. We collected key paperwork from the surgeon's office for disability and also for a Brain MRI that I'll have next week to cover all the bases for baseline knowledge of my cancer. We visited Dr.Hardy's office, got me on her calendar for next week, and got another giant pack of paperwork to fill out - filled it out over lunch and returned it. And lastly, we spent 2 hours with a genetic counselor detailing my family history and having my blood drawn for the BRCA gene mutation test and UCLA cancer registry for research purposes. You'd think after all that a person couldn't manage to fit anything else in. Well if we're talking about ME, you'd be wrong. ;) We left UCLA, ran a couple errands and then I walked into my dentist's office at 5:30 pm for a pre-chemo teeth cleaning! I'm not a fan of the dentist but this is a necessary step because chemo can wreak havoc on the mouth. After THAT, I was officially TOTALLY EXHAUSTED! LOL

Wednesday, June 24, 2009

Tuesday, June 23, 2009

Forgot to mention...

...it feels good to finally have clean hair - stopped at the salon to have my favorite stylist wash and blow dry my hair since it's been nearly 2 weeks since it was washed!!!! I know, so gross! It was starting to smell really bad and I couldn't take it anymore. These sponge baths have been the pits and the hair, o.m.g., it was just time! So glad I did because I look and feel a heck of a lot better. Mom asked me why I didn't also have them cut it -- I laughed and said "why bother, it'll all be falling out in a matter of a few weeks/month anyway - I am going to enjoy my long, overgrown hair between now and then" LOL.

A great organization for people like me - you can help

Today I had my intake meeting at a local cancer support organization, WeSpark. I'm fortunate that this organization, which is privately funded solely through generous donations, has an office near to me. I took my mom along (she has to drive me since I'm not cleared for driving yet) and I'm glad I made her come inside because they have caregiver support groups and resources too - things we can actually do together while she is here visiting and helping out. I am amazed by this generous service and all they have to offer free of charge to cancer patients, survivors, and caregivers. If you are a blog follower that has wondered how you can help me and others like me, please consider donating to this organization or one like it near you. The sense of relief and comfort I felt going there today and knowing that I can participate in all these wonderful offerings they provide to help me through treatment and through this battle was so priceless today. Tomorrow is a BIG day. We will be at UCLA most of the day. First we'll meet with Dr.Glaspy - the head honcho of oncology, the guru of breast cancer, and the wizard of leading edge cancer research (or so I'm told haha). He will be directing my treatment plan. I'm excited and nervous. After Dr.Glaspy's meeting we head up to Plastics to visit Nurse Tammy who works for Dr. McHotty so she can look at my swelling to make sure it's "normal" and have her look at my remaining drain to be sure all is OK - we're not expecting this one to come out yet - not til end of the week - because it's still putting out more than the threshold amount of fluid -ick. After Plastics, we head over to the UCLA Familial Cancer Registry & Genetic Evaluation Program where my family's cancer history gets mapped out and documented and I give blood for the BRCA gene test to determine if I'm a carrier. If it turns out to be positive for either of the BRCA gene mutations which greatly increases a person's risk of developing breast and ovarian cancers, I will plan to have my ovaries and fallopian tubes surgically removed after my cancer treatment is completed. I already need to have 2-3 more surgeries for breast reconstruction over the next year, so I would plan to combine one of those surgeries with the modified hysterectomy to limit my "down time". If I don't have either of the two known gene mutations, I might have my ovaries removed anyway since ovarian cancer is very difficult to detect and spreads rapidly to organs nearby. But I digress... While at UCLA I also need to hunt down paperwork - an order for a brain MRI (to rule out anything there since the PET/CT doesn't look at the brain - which I did not know before), and my FMLA/disability paperwork that the surgeons are working on for me. Needless to say, it's going to be a looooonnnnggggg day. Wish us luck! :)

Monday, June 22, 2009

Much anticipated, and somewhat feared Monday gone right :)

Long update for a long day... This morning I was a bit alarmed that the last remaining drain was still filling up rapidly - something it started doing as soon as the other two drains were removed. I know it has to be less than 30 cc in 24 hours before they'll remove it. The day they removed the other two, all three were below that threshold, in fact they were at about 20 cc. But by Saturday morning the amount started climbing...so much so that by Sunday night I figured out there was 80 cc or so for the day/night. UGH. I called the nurse at the surgeon's office to report it and ask if there was any reason to be concerned - she said it is totally normal and it's compensating for the other drain being gone on that side. She said that if it tapers off to 30 cc /day or less by Wednesday it can be removed. If I'm at 80 or so now, I'm guessing this sucker won't come out til Friday. Oh well. Besides mild panic about my drain situation, we had a pretty big day planned. In the morning Mom and I met with an oncologist here in town, Dr. Barstis, who is part of the UCLA team and has an extention office here locally. I had a laundry list of questions but had to first inform him that I did not want to hear any statistics or predictions about the time I should expect to live - I told him, as I choked back my tears, that I WILL DECIDE HOW LONG I LIVE as far as this cancer business is concerned. I paused, expecting him to cop an attitude (as so many doctors would after a proclamation), and then sighed with relief when he responded "I don't believe in statistics...everyone is unique, and I agree with you that you will decide...." Yay! OK, once THAT was out of the way, I braced myself for the ego battle I also had anticipated - whether this guy would be willing to administer treatments to me under the direction of another doctor - the UCLA director of oncology in Westwood. You see, oncologists are like many other kinds of doctors in that each has their own way of doing things and set of beliefs. Two people with the exact same diagnosis could get completely different treatment regimens/drugs, sequence, etc just because of the experience/beliefs of the oncologist they go to. Thus, the patient needs to be educated in order to know how to choose which doctor's recommendation/regime to go with. I'm no expert at chemotherapy, but I'm a quick study and have done my homework on the doctors, the hospitals they're affiliated with, etc. And, even though I've never met the UCLA doc in Westwood, we are sure we plan to go with what he recommends, based on his reputation, the referrals, and other factors. So, before I could break the news to Dr.Barstis that we were there to ask if he'd administer the program that the other doctor recommends (so that I won't have to endure the awful commute back and forth between here and the UCLA center in Westwood), I was shocked to hear him say "I've looked over your case and I want you to know that we want to help and we think Dr. Glaspy should call the shots on this one." (Glaspy being the head honcho at UCLA that we're meeting with on Wednesday). This doc knew I was meeting with Glaspy this week - since they're both part of UCLA they can access all my reports/tests/consult and physician notes/appointments scheduled. I turned to my mother and got a kick out of the giant smile on her face....which matched the one on mine. So I said "So, you would be comfortable teaming with Dr.Glaspy and administering the treatments to me that he recommends but doing so here in this office close to home?"...and his response was a clear and resounding "yes, absolutely". He went on to say that Dr.Glaspy is brilliant in this area (aggressive breast cancer, triple negative, etc.) and that he believes him to be the best in the country. Oh heck yeah!!! Woo-hoo! Yeah, baby!! :) Doc said I should do very well - he commented on how great I've bounced back from this MAJOR surgery (and of course mom had to chime in to inform him I've looked this great since the day after surgery - love ya mom!) and reminded me that the cancer is out and now the treatments needed are protective - to eliminate any remaining cells circulating in my body to prevent further growths from establishing. He expects I'll have both chemo and radiation (as the surgeon predicted), and he explained why the radiation administered here is actually more advanced than the equipment down at UCLA's main campus (though they're in the process of getting their equipment updated it wouldn't be done in time for my treatment) - so I guess I'm lucky I live where I do since radiation is a daily treatment over several weeks. Woot!! My friend and neighbor is an infusion nurse at this local UCLA cancer center where we met with this doctor and I'm so excited that I'll be able to get treatments locally and have her smiling familiar face there when I go in and have someone I personally know and trust to ask questions if things come up. Treatment would start 4 weeks after surgery occurred - for me that is the second/third week of July. I'll have a port installed in my chest 1-2 weeks prior to that and Dr.Barstis gave me the name of a doctor that he felt does the best port installations so I'll be checking into getting that scheduled since that would need to be done 1-2 weeks from now. The port is critical for me especially now that I only have one arm that can be injected into (my left arm is off limits due to risk of lymphedema now that my lymph nodes are gone on that side). It would be installed under the skin up high on my chest and would be used to hook me up to the chemotherapy infusion bag(s) for the treatment process. It'll be a minor surgical procedure to install it, under local anaesthesia. It's kind of gross but it's the best approach for me so it is what it is. The actual drugs/treatment I'll be getting will be determined by Dr.Glaspy. We meet him on Wednesday. Dr. Barstis agrees that a holistic approach is critical for an effective fight. He approved of the vitamins I bought at UCLA and showed him to be sure there weren't any ingredients known to be detrimental during chemo. This prompted him to suggest that I get an appointment with Dr.Hardy at UCLA - she's a holistic doctor that is well known for her work with cancer patients in areas such as nutrition, supplements, and eastern medicine to supplement conventional treatment. Turns out that the vitamins I bought are the ones that the breast cancer boutique store clerk said were "recommended by Dr.Hardy" - at the time I had no idea who this Dr.Hardy was that she was so excited about when she sold me the vitamins. LOL. Tomorrow I'll be calling Dr.Hardy's office down in UCLA to set up an appointment. On a related note, I've been reading Bernie Siegel's books on the mind-over-body phenomenon and what you can do with meditation and visualization to enhance your body's healing process and last night I went to his website http://www.berniesiegelmd.com/, and found that his center is in Connecticut, not far from where my family is and where I grew up. They're doing a retreat for couples soon but there was no date posted yet so I sent them a note. Today I received a reply that they're planning it for the first few days of October. It just so happens to be days that I already had blocked off for vacation since that is when Bob's vacation time is - so they said they'd put us on the list and send me the flyer with details as soon as it is printed so we could sign up for it. Woohoo! I probably won't be done with treatment by then but I'm sure the docs can work it out so that I'll be between treatments so we can go. I'm so excited! It seems to me that everything is just coming together...I just KNOW I'm in the right place at the right time and that I have the best team possible working with me to kick cancer's ass. Between my determination, my outstanding medical team, and my amazing support network (you! :)), I am so ready to fight and win. That was all before 11:00am! By noon we were back home and welcoming my dear friend Nikky and her adorable 11 month old son, Junior, to our very first in-person meeting and playdate :). Nikky and I met online through a pregnancy support group and became friends quickly since we were both put on bed rest. She lives in northern CA and was down visiting some family and set aside this afternoon to spend it with us. We're so glad she did because we had great fun watching Cooper and Junior play together. I'll be posting pics from the playdate on Cooper's blog in the next day or so. Needless to say, I'm totally exhausted now. Once I post this, I'm taking a nap. Tomorrow: Intake appointment with a cancer support organization that hosts support groups, more rest than today, a bunch of phone calls, and writing thank you notes. :)

Sunday, June 21, 2009

Happy father's day! Happy birthday, Cooper!

Happy father's day, Bob! We love you and miss you and can't wait til you'll be home in a couple of days! Happy 1st birthday, Cooper! We love you so much!

Saturday, June 20, 2009

My Very Own Kung Fu Fighting Posse :)

How lucky am I!? Check out what my web board girlfriends put together for me - isn't this great!? I love you girls! You ladies crack me up and warm my heart every day! Thank you so much!

Plumbing and poor performers

I have plumbing issues. Not the kind you might think after a previous post about pain medication side effects (though we're not totally in the clear there either LOL), but rather the type where the sink is filled with icky water, the disposal won't run, and thus we can't use the dishwasher type of plumbing issue. We have a "home warranty" where we pay a fee annually and an insurance company dispatches contractors to the home for issues covered under the policy for a flat fee of $60. This issue is covered. However, I called the company on Thursday and here we are Saturday and nothing has changed. Each time I call the insurance company I'm placed on hold for between 25-60 minutes (that is NOT an exaggeration) and then when a "customer service" rep finally answers I'm told that the contractor has 48 "business hours" to respond before they'll reassign it to a new contractor but that they'll call the contractor on our behalf and get things moving. That was last night. I called again this morning at 11 am and after 37 minutes of being on hold I ask them for a new contractor's name/# since we haven't heard from the first one I'm told we have to give them until Monday night. Are you wondering whether to feel sorry for me or the gal on the other end of the phone at this point? If I were you, I'd feel sorry for her. LOL After a few choice words (thank you, miss for giving me someone to take my frustrations out on LOL), I informed her that I'd be hiring a private plumber, out of pocket, and then Monday or Tuesday morning when my husband is back we'll be firing the insurance company (canceling the policy) and replacing them with one that actually DOES what they're supposed to do. This incident reminded me of the experience we had with the first breast cancer surgeon we consulted. I did not hesitate to fire the poor performer. Recently I fired and replaced the gardener too (pre-diagnosis) for poor performance. Suddenly, I'm standing in my kitchen and I realize that I am one of those "exceptional patients" that Bernie Siegel writes about in "Love, Medicine & Miracles" (which I'm currently reading) - the type that doesn't take bad news laying down, that doesn't accept "facts" and "statistics" as applicable to me - the type that questions almost everything in search of the absolute best of everything, the type that fires physicians and other poor performers when they know they can have better. Whether it is a blown up garbage disposal, a poorly maintained yard, or a nanny that is late daily and referred to my child as a "pill" (yup, she was fired in March), there's not much that I can't control - not even cancer. So, while I will have moments, hours, maybe even a day of fear, doubt and grief (that I must be allowed to have), I'm a fighter through and through. I demand the best and I don't sit back waiting for others to do what needs to be done - I get it done. I'm kicking cancer's ass. I'm so going to beat this f*cker.

Friday, June 19, 2009

Love thy neighbors - I do!

I'm pretty certain that the best thing that's happened to me and Bob as a couple, besides finding each other, getting married and having sweet Cooper, is moving into this house, on this street. We are so incredibly blessed to have the most compassionate, caring, selfless neighbors who have become a part of our family through this crazy past couple of years that we've had. They were here for us when I was put on bed rest, and they've come out in force for us again since my diagnosis. The prayers, love, support, the food, the flowers, the prayer shawl, the candles being lit for me by one family all over Italy this week, the help with Cooper, the survival stories that give me hope and keep my spirits up, the treatment tips, and so much more! It's an endless stream of love for which I will always be eternally grateful. Cindy and Dan, Tara and Chris, Clare and John, Femme and Jim, Susan and Alan, Greg and Denise, Teresa and Elgin, Craig, Scott and Angel, Sarah and Scott, Michelle and Steve, Michelle and Mark, and all of your beautiful children who come to help with Hunter and give me great hugs and make me smile. Thank you, with all of my heart. I love you!

Thursday, June 18, 2009

A new day and another big day ahead

Today was a new day. A much better day than yesterday. Tomorrow will be even better since the drains that dangle from my breasts and which I have been toting around for a week now will finally be removed. They're so incredibly annoying (and gross) - I have to wear a robe with pockets to keep them from pulling out of my body and they itch where they come out and sometimes it burns too. I'm pretty sure the tightening and aching I feel in my chest is the drains too because the pain is originating from the drain holes and not the surgical incisions. Even if the drain removal doesn't eliminate the pain that remains, I'll be thrilled to have them be gone so I can trade in my robe and chest bandaging for a shirt instead. The bandages smell now that they've been on me for a week, and are falling apart too. Doc said I could take it off as long as I keep the drain holes dry and clean but that sounded like a challenge I might not be able to manage effectively so I've opted for the smelly bandage LOL. Thankfully it goes tomorrow morning. :) So, first thing in the morning I'll be at UCLA with mom in tow, having my bandages removed, the drains removed, and getting a refill prescription for the pain meds from the plastic surgeon, Dr.Crisera. After that, we meet with the cancer surgeon, Dr.Chang, to review the pathology (which we already know about), to get instructions for caring for my left arm which is at risk for lymphedema now, get a prescription for a compression sleeve for my arm for traveling or days with lots of activity to protect the arm, and a prescription for physical therapy which I know I will need a good deal of since I have numbing and other weird sensations in both arms ever since the surgery. Once we're done at UCLA, mom and I will head to the store to pick up a couple of new bras for me to use temporarily while my amputated breasts are in their pre-inflated stage (in 2 weeks they'll start pumping up the expanders to stretch my skin in preparation for implants that will be placed later on) since none of my bras will provide any support or smoothing under clothing since all of my breast tissue and both nipples were removed in the surgery. I'm not completely flat since the expanders are in there. I'm not at all freaked out about the strange appearance of my breasts (they really do look like amputated limbs too - very strange) - I was never really attached to them before and in a strange way it'll be kind of neat to see what it's like to be small in that department for a while. Don't tell Bob, but if I find myself enjoying being on the small side I might just put in a request for smaller breasts when it's time to resume reconstruction. I've always been large in that area - so much so that I had them reduced/lifted just 5 years ago because I found them to be such an annoyance and I've always dreamt about having small perky ones so I could occasionally go braless - well I guess my chance for that is here now haha. Anyway, I've had a few visitors today which was great. My friend, Tara, brought her friend, Candy, by to talk to me - she's a breast cancer survivor of over 15 years. I love hearing survivor stories :) She was so sweet and offered for me to call her any time. Thank you, Candy and Tara! For dinner we had my friend, Kristy, and her adorable daughter, Addie, over. We had so much fun watching Addie & Cooper play as they usually do. "Cooper & Addison Olsen" sounds wonderful, doesn't it? haha! Then, our sweet friend and neighbor, Sarah, stopped by too to chat about her availability to help out with Cooper on occasion (she's a nanny/sitter). I'm so incredibly blessed and grateful for everyone's friendship and support. I couldn't ask for a better support network of friends and family to be by my side throughout this journey. Thank you so much for being here for me! So...I march onward toward another new day which I know will be just as great as today, but likely even better - at least in the physical healing department which is key right now so that I can quickly move on to the next step in the cancer ass kicking mission. Thanks, everyone, for your support and prayers. Please keep it coming - you're helping me so very much and I'm so grateful. Love, Julie PS - Cancer, I have more friends than you do - so there!

Wednesday, June 17, 2009

Sending my love and prayers to Kathie

Kathie is a dear friend of mine. She was diagnosed with breast cancer less than 2 weeks before I was. Kathie's diagnosis is the reason I did a self exam and followed my instincts to go get checked more thoroughly. I credit Kathie and her diagnosis with saving my life by allowing me to find my cancer when I did, and not a moment later. Kathie has a new blog too so please be sure to check in on her and tell her you're rooting for her and praying for her. Kathie had her bilateral (double) mastectomy today. She is in the hospital recovering now. I love Kathie and I am praying for her speedy recovery and for her strength to fight this beast with me. Together, Kathie and I have always been a great team at work. Now, we are "the sisterhood of the traveling boobs". She's "righty" and I'm "lefty". She's "lumpy", and I'm "bumpy". Whatever silly names we come up with for each other, we are going through this together, from opposite ends of the country (she in FL, me in CA). Together, and with the love and support of our family, friends, colleagues and loving strangers, we are going to kick cancer's ass. I love you, Kathie! Congratulations on getting this first part of the battle behind you. You know I mean it when I say I know what you're going through. These next few days will be hard, but not unbearable. Stay ahead of the pain. Stay on top of the nurses and don't let them get you behind the pain. Speak up, scream if you have to. You have a right to have the pain under control but sometimes you may need to make strong demands to ensure that's so. You're a bad ass, just like me. But you have feelings too, just like me - fear, grief, anger. Allow yourself to feel these things and get them out. It's important to do that so you can get it out and then move back into ass kicking mode quickly and with vigor. Hugs to you and your Robert (yeah, we're both married to men named Robert LOL). We can do this! Love, Julie

F*CKING CANCER: Pathology is in :(

The pathology report is in. My left breast tumor was 2.2 cm, clean margins. I had 14 (yes, FOURTEEN) cancerous lymph nodes - O.M.G! They had removed 18 in total. Clear boundaries there, but O.M.G! The largest lymph node tumor was 4.2 cm. No cancer in the right breast or right side lymph nodes. This makes me Stage IIIC. Holy shit! I'm freaking out. I'm so angry and so sad. I feel like I've totally failed myself and my family by not finding this sooner. I'm terrified. I'm going to fight it hard. But getting more bad news is not helping my psyche. CANCER - YOU F*CKING SUCK SO BAD AND I HATE YOU. DAMN YOU!

Tuesday, June 16, 2009

Home sweet home

I'm home from the hospital. I'm glad to be home and glad that my homecoming wasn't as stressful as I had anticipated it to be. I was concerned that Cooper would react badly to me not being able to pick him up since he's definitely a momma's boy. If I'm out of sight he adjusts pretty quickly to other women caring for him, and to dad of course, but if I'm there and don't pay him the right kind of attention he gets very upset. Thankfully, he didn't wig out on me when I walked in. I sat on the couch and put a pillow in front of my chest to protect my incision locations and drain wounds from him in case he tried to climb on me. He stayed pretty calm and put his arms around me and let me shower him with kisses. I missed him so much. We have my nightstand and bed area situated with everything I'll need over the next few days while I spend most of my time recuperating and healing. I can get up and around and do basic things but the doctor wants me to take it very slow and help the healing happen quickly so that we can move on to the next stages of treatment and reconstruction without delays. And Mom is working on a grocery list of food items I want which help fuel the healing process. Mom and Bob have done a great job with Cooper while I was in the hospital. They got him to sleep in his crib which is just wonderful and seemed impossible the last couple times we tried to make that transition. This time we had no choice - he can't be in the bed with me while I'm recovering from surgery - with the wounds and drains involved it's a relief that he's in his crib now. He's not completely used to it but he's doing GREAT with it so far. He wakes up often but he's been able to put himself back to sleep half of the time. Bob and my mom go in when he doesn't seem to be calming himself down and they shush and pat him and if needed give him a sip of some water and he calms back down and goes back to sleep. It's amazing and a huge relief given our situation now. This week I will have two surgical follow up appointments - one with the reconstructive surgeon (Dr.Crisera) where the drains will probably be taken out (hopefully), and one with the surgical oncologist (Dr.Chang) where we'll review the pathology results and bone scan results and discuss next steps based on that information. I'm really nervous about this but I need to let go and trust in God. It's hard for me to do that but I have no choice. My mom is going to help me with this by working with me on some guided imagery exercises that will help calm me and help me focus on positive healing thoughts while I'm still laid up recuperating. Next week I meet with two different medical oncologists to discuss their recommended treatments for my type of cancer, stage, etc. So far, it sounds like both chemo and radiation are in my future. I'm OK with that and ready to get going asap so we can deliver shock and awe to any remaining cancer cells floating around my body. I'll also be getting my teeth cleaned next week since that should be done before chemo starts because of the dental side effects often experienced throughout chemo treatments. I need to clear this with the surgeons/oncologists before I go in but from what I've read thus far it's something that needs to be done so I have an appointment for that for next Wednesday night. Meantime, while I heal physically, I'm beginning to work on setting up help for myself in the mental/emotional aspects of this process. Besides the guided imagery work mom will do with me, I've been talking to local survivors (friends of friends) and now I'm working on scheduling an intake appointment with a local cancer support organization that hosts support groups for patients, caregivers, etc. I plan to participate in a formal support group, and will also be working on reintroducing myself to a local therapist for more one-on-one work so I can stay on top of managing the roller coaster of emotions I'm experiencing and expect to continue experiencing. I'm so incredibly grateful for the love and support of family, friends, colleagues, and acquaintances from all over. Your encouraging words and prayers mean the world to me. Thank you so much.

Monday, June 15, 2009

Breast Cancer Warrior Theme Song Needed

OK...I need a theme song -- have any ideas? Please send your suggestions - ideally if you can provide a link to an audio or video of the song from YouTube or another similar source that allows me to hear the song that would be great. And, tell me why you think it'd make a great theme song. If I choose the song you recommend I'll send you something special (so the first person to recommend a song if multiple people suggest the same one). Thanks in advance for your ideas! Cancer - I have a posse - you don't stand a chance so just give up now biotch! Love, Julie

I have the "bad" breast cancer: "Triple Negative"

The Her2 test results are in and are negative. Since my breast cancer has tested negative for receptors to estrogen, progesterone, and HER2, I'm considered "triple negative" and that's NOT a good thing. The chances of recurrance and spreading are very high and the effective treatment is limited since the hormone supressor therapies are not useful for this type of cancer. I'm still planning to maintain a positive attitude and to kick this cancer's ass, but it's definitely a blow to receive this news. We've read that this cancer is usually very responsive to chemotherapy which is good, but it's reach for treatment is limited when the disease has spread so now I worry about the fact it's spread to my lymph nodes and hope and pray to nowhere else. It's very aggressive. If you love me, don't bother googling it, it's not pretty. This just sucks. Please pray for me that the cancer did not spread beyond my lymph nodes. Even though my PET scan was clear, it only shows clusters of cells of a certain size and not small clusters that could be increasing in size. We also are waiting for the bone scan results to find out if my bones are clear or not of this craziness. Cancer, you SUCK. I hate you, fucker. Love, Julie

Cocktail hour in 6345

FINALLY! Cocktails! OK....maybe not the kind of carefree cocktails I'd LIKE to be having - you know, the kind you sip out of a fancy shaped glass while lounging on some sandy beach in a tropical locale - but this cocktail mix I just took is about as good as it gets from where I sit at this moment. Mine is a cocktail of muscle relaxers and percocet. It is believed that a good amount of the pain I'm having is from muscle spasms since my chest muscles were relocated during the surgery, but also because of nurse brutis' nonsense the other night - a painful combination of ouch ouch ouch that got old quickly. Thankfully, nurse brutis was alone in her mission to kill my spirit and make me feel like crap. All the others since her have been running around trying to make it better. Earlier this afternoon my plastic surgeon, Dr.Crisera, who is in charge of my care (since the reconstruction is a lengthy multi-step process that just began) came in and apologized profusely for what he heard had been going on this weekend with my pain. He asked for nurse Brutis' name so that he can follow up on that craziness (karma is a bitch, ain't it!?) :). By the way, Dr.Crisera is amazing (and adorable) so if you ever need reconstructive surgery in the L.A. area, he's your man. The cocktail is helping. We need to make sure I'm stabilized on the right dose of this cocktail before they send me home so they can be sure I'll be comfortable the next couple weeks before they start pumping up the new booby expanders and of course we need me to be comfortable in order to heal rapidly which is needed before I start chemo. So....I'm spending another night here. That's totally fine with me. Even though I'm woken every 4 hours for medication and vitals I'm getting more sleep here than I have in an entire year at home (no offense little Cooper pooper) and I really need the rest. Thankfully, Bob and my mom are doing a great job crib training my little guy at home so I have faith that night time will get better and better at home - meantime, I'm taking advantage of the screw up here and getting another night of rest with round the clock care. My blackberry kicked the bucket this morning and I spent all day trying to revive it - it's a good thing I'm a patient and not a doctor because poor mr.blackberry coded and expired in spite of my efforts. So now I have no cell phone access unless Bob is here (so, just during the day) - just email access via laptop. Then it took several hours of convincing the IT powers that be at work that it truly had seen its last day and needed to be replaced. A new one should be arriving at my house tomorrow. If you need to reach me while I'm still here - email me and I'll send you the # you can call me at here in my room. Cancer -- just because you're not hormone-receptive doesn't mean you have a free ticket to wreak havoc on my body - your boarding pass has been confiscated so beat it, jerk! Love, Julie PS - A few people have asked me about the sign above my head in my hospital room which reminds staff not to perform any procedures such as BP checks on my left arm. The reason for this is that now that I have 17 fewer lymph nodes on that side, I'm at risk for developing lymphedema which can be brought on by certain things and thus several precautions now must be taken, including not allowing injections, blood draws, or BP checks on my left side, among other steps that I'll be learning more about in my post-op education and therapy process.

Ah the indignities! (sound familiar?)

It feels like de ja vu writing about indignities - this time last year I posted an entry on Cooper's blog about the indignities of strict bed rest while pregnant. That list was far worse than the one I've begun to expose since opening my eyes this morning, so maybe you'll get off easy this time. Since Saturday, each "Care Partner" (person that wakes me up every 4 hours to take my vitals) has found a new way to ascertain whether I've had a bowel movement. It's become quite comical to watch the discovery process each of these folks goes through as they start their shift. First, I see them evaluating and logging the amount of urine I've left in the lovely measuring cup they've attached to the toilet in my room (which, by the way, takes up the entire opening of the toilet), then they come back to my side and ask me how much water I've had since they last asked, followed by an inspection of my food tray if it's still in the room to see how much food I've eaten. Then, finally, they come out and ask me "BM today?", or "#2 today?" and I pretend I don't know what they're talking about so they have to repeat themselves at least 2-3 times which seems to embarrass each of them. The first day I was here I hadn't eaten solid foods for over 12 hours. The second day they had me on vicodin which everyone knows prevents such digestive action, and the third day (yesterday) after being interrogated by blushing nurses about bowel movements I considered making an effort but then reconsidered every time I realized there is a giant urine measuring cup in the way which I can't (or won't) reach around and move out of the way since it hurts too much to move my arms in that way right now and I hadn't bothered inviting anyone to join me (would you!?). So, they're going to have to wait a bit longer unless they figure out they've made it impossible and take steps to remedy that. I'm not going to do their jobs for them although I probably could do it better than they do based on the way this weekend has progressed. Note to self: unless one can help it, one should never have themselves admitted to a hospital over a weekend when the C team is on the schedule. We had no choice this time - it was either have the surgery Friday or wait til July which we all know just was not an option for me (no way I was going to let cancer dance around in my body that long). I have a few reconstructive surgeries that will need to be done so I'll be booking those to occur earlier in the week when possible. Hey cancer - if you're lurking around you'd better start running because whatever is left of you is gonna be nuked into oblivion soon, ya bastard! Love, Julie

Sunday, June 14, 2009

Mr.Ying wants to give me a sponge bath

This morning I woke up in my hospital room to find Mr.Ying standing by my side asking if he could take my blood pressure. I told him he definitely could after I used the bathroom. He knew it would take a while for me to accomplish that so he stood outside of my room while I gathered up my drains and wrapped them in my hospital gown, got my slippers on and then carefully and slowly pulled myself out of the bed and headed for the bathroom. As I walked over there, Mr.Ying kept trying to ask me questions that he'd shout through the room door to me. I could barely understand him but later learned he was asking "Do you need help?", "Did you have breakfast?", and "Have you brushed your teeth?". He made me laugh. Once I got back in bed he said "Do you want me to give you a sponge bath?" as he stood there motioning one hand over his privates and followed up with "but you do this part." I couldn't help but laugh. I swear, my friend Diana must have sent this guy to me this morning to crack me up. LMAO. I thanked Mr.Ying for his offer and told him I'll wait on the bath til at least the next shift change haha. Mr. Ying helped me track down my morning nurse and let her know what time I should have my pain medication since last night Miss Vivian screwed me over by giving it to me late every time even though I asked for it ahead of time every 4 hours. At the suggestion of a friend who has been through a hospital stay recently, I'm going to ask the docs this AM if they can 1) put me on alternating meds b/c this one is wearing off at the 2.5-3 hour mark, and 2) put it on routine order instead of "when asked" because I shouldn't have to ask for it - I think it's obvious I'm going to be in constant pain - my tits and lymph nodes were just cut out of my body for crying out loud! For all my complaining about the pain med issue and sponge bath offer, I should be clear that I love this hospital - most of the staff are fantastic, the facility is super new and clean and nice to look at. I get room service that I order and am not subjected to whatever they want me to have and when - and all the rooms are private with a couch that pulls out for overnight guests (visitors are allowed 24 hours). The nurses stations have granite counter tops! OK, now back to complaining about the pain medication....I need more and I want it now. ;/

Saturday, June 13, 2009

Pain, frat boys, breakfast, and being tumor-free

I'm attached to a morphone dispensing machine with a button I get to press every 10 minutes as needed/desired. Yesterday the pain was so strong that I didn't think the machine worked so they upped me to the maximum allowed dosage. Since it builds up in the blood over time they said to definitely press the button every 10 minutes (doing so more often would not accomplish anything since it'll only dispense what I'm permitted to have, thank goodness). I felt like someone was standing on my chest with steak knives attached to their shoes which would drive deeper with every breath I took. This morning I'm finally feeling much less pain. It doesn't hurt to breathe anymore which is a huge relief. My room overlooks UCLA's fraternity house row. I can't see the frat boys though - what a bummer LOL. Just had breakfast - french toast, eggs, and fruit. I had NO nausea at all from the anaestesia yesterday which was a relief. :) Best of all, from all I can gather thus far, I am tumor-free now. :) Anyone that gives me any news indicating otherwise should hope to be wearing body armor at the time haha.

Friday, June 12, 2009

2 miracles in one day

This morning I had a successful bilateral mastectomy: left side modified radical mastectomy, and right side simple/total mastectomy, followed by expander implant placement. It took less than five hours but I spent six hours in recovery because my room wasn't ready. I usually don't have much patience for things like that but something special happened in recovery and I'd have been content staying even longer, because of Nurse Nathan. While engaging Nathan in chit chat, I learned he had a recent biopsy for suspicious cells/legions in his colon. Nathan told me, matter of factly, that he does not want the results and has no plans to treat it if the results revealed malignancy. I knew what I needed to do. I channeled all the love and support I've been receiving and showed it to Nathan. Told him how important he is...to his loved ones, friends, colleagues, and to me in my recovery today. An hour later Nathan had to move me which put me under the care of another recovery nurse. I worried a bit that he might not have liked my attempt to change his mind but he said he was sorry for the switch and that he was glad I was assigned to him. Hours later, when I was finally assigned a patient room, Nathan came to me to thank me and to tell me he changed his mind and he will fight it if it turned out malignant. He said he will never forget me. Wow. I can't tell you how much it meant to me to hear him say that.

We're at UCLA

We are at UCLA for my big day! We're waiting for the Admissions office to open (4:30am PT).

We are praying for a successful, complication-free surgery that eliminates all the pesky uninvited cancer cells from my body. We pray for the surgical team's strength, brilliance, skills, and compassion on this critical first day of my new life as a SURVIVOR of breast cancer. We thank God for His love, and for our amazing support network that is praying for me and cheering us on. We are grateful to all of you for your love and support. You know I will be on the blackberry as soon as I can be to post updates. :)


Love, Julie

Thursday, June 11, 2009

Bye bye boobies

Boobies. Knockers. Jugs. Tits. I once considered them to be among my key physical assets but then they got in the way (too big) so I had them made smaller. Then I got pregnant and they got huge again, and soon discovered that they didn't produce adequate nourishment for my sweet Cooper and had to accept their failure to function as God intended. A year after giving birth, they're heavy, saggy, and now one has cancer. My boobs have failed me so I am breaking up with them. I'm saying good bye to my boobs tonight. They'll be gone tomorrow. I have mixed emotions about this. On one hand I'm angry as hell - I don't care so much about losing my natural born boobs but I'm pissed about having cancer. I mean, WTF!? But then, if I'm going to lose my original knockers, I may as well get the door prize - a set of new perky replacements. They don't come without a steep price though. There will be other surgeries down the road. Replacement of expanders with regular implants, then later construction of artificial nipples (yup, I'm losing those tomorrow too). And, if my radiation treatments really mess up the implants (which happens in 50-60% of the time with implant reconstruction), another surgery to repair that. I could be facing 3-4 surgeries within the next 1-2 years. *sigh* Hey cancer, I hope you have your bags packed because I'm coming for you and it isn't going to be pretty because I'm mad as hell and I'm not gonna take it anymore!

Wednesday, June 10, 2009

Aggressive cancer calls for aggressive action.

For a week after first being diagnosed with breast cancer, I went from one diagnostic test to another. A breast MRI which revealed enlarged lymph nodes, a lymph node biopsy which revealed the cancer has spread to my axillary lymph nodes, a PET/CT scan that revealed it may also be in subpectoral lymph nodes adjacent to the axillary lymph nodes, a chest x-ray which at first glance looks "clear" but hasn't been officially read/reported just yet, and blood work with all results "within normal range". We met with a local surgeon for the first opinion and he helped get all the aforementioned tests ordered which was good, but there were things about him that we weren't comfortable with so we set up a consult with the best of the best in the west - UCLA's Dr.Helena Chang, Director of the Revlon Breast Center but it would be a week before we could meet with her. Meantime, we also met with a UCLA reconstructive surgeon that the first surgeon recommended, Dr. Christopher Crisera, and we really liked him and I was tentatively placed on the surgical calendar for the 16th (with him and the first surgeon) pending our meeting with Dr.Chang. Time was standing still. I swear that first week felt like an eternity. It took so much effort and energy to NOT think the worst and worry about where this shit may have spread and how it will forever change my life. Thankfully, I have the most amazing support network and two of my dearest girlfriends arranged a surprise girls weekend at my house this past weekend to get my mind off of it and to surround me with positive thoughts and love. Kristy & Diana - you are amazing and I love you! Within a week I not only learned I have breast cancer, but that it has spread to my lymph nodes and it is non-hormone receptive for two out of the three possible hormones (estrogen and progesterone), making this cancer aggressive. We're still waiting to find out if it is HER2 receptive (the third hormone) and we're hoping that it IS because that would create the ability to leverage a drug called Herceptin for treatment. If it turns out to be HER2 negative, that would make me "triple negative", making my cancer even more aggressive and less common than the other breast cancer types. Waiting and patience is not a strength of mine - I fully admit it. In a situation like this, waiting and patience is not much of a virtue - with cancer cells multiplying and possibly seeking new places to lurk, I'm on full-court press to get things moving to evict this sucker out of my body ASAP. So, every day since setting the appointment with the UCLA team, I've woken up eager to be another day closer to being in Dr.Chang's office to get the ball rolling. We did our homework and we want her on our team. Tuesday finally arrived and my mom joined me for the consult with Dr.Chang. Long story short, she's hired. There was going to be nearly 3 weeks wait time for surgery because of various doctors' planned summer vacations and then I remembered I had my cancer ass kicking boots on and pushed her, her staff, and the plastics team to get me in ASAP (because 3 weeks is NOT acceptable). They were skeptical that I'd get the two surgeons' schedules coordinated with an OR and get all the pre-op tests done in time. As of 4pm today, that's all done and now all I have to do is call Admissions tomorrow afternoon to get my arrival time/location for Friday morning. I am now super familiar with that medical building since I was up and down the elevators and halls (with mom in tow) so many times that I could work the info booth. haha. On Friday, June 12th, I will be having a bilateral mastectomy. That's right, I'm not messing around. The cancer playground is getting shut down and will be renovated with replacements too. If I get the BRCA gene test and find out I have that gene, then I plan to also have my ovaries removed at a later time. Aggressive cancer calls for aggressive action. I REFUSE to let this shit take over my body. Dear Cancer: FUCK YOU. GET OUT. STAY AWAY. Love, Julie

Initial Diagnosis: Breast Cancer

So....it all began when a dear friend and colleague of mine told me just a few weeks ago that she had breast cancer. I was shocked and extremely upset by this news. I immediately started remembering what it was like to watch my late boyfriend, David, battle and ultimately be taken by cancer in 1998. It was a life changing experience for me to be involved in David's journey. It taught me that it's never too late to do or be what you want to be - no matter what your age or past - as long as you're committed to getting it done. You see, David had been so many things in his short life of 44 years - a sheriff, an attorney, a speed skater, an investment sales professional and executive, and much more. And he was excellent at every one of those roles. He had determination, optimism, passion, in spite of being told he had 4-6 months to live when he was first diagnosed. 2.5 years later he was still fighting. I loved him and it was heart breaking to see him go through what he went through for cancer treatment and to ultimately lose him. I knew I hadn't done a self exam in a while, largely because it has been difficult to figure out what feels "normal" since my breasts have changed so much over the past year and a half due to the pregnancy and breast feeding and post-pregnancy changes occurring from the rapid increase then decrease in hormones. Regardless, it was time to check things out again. I proceeded with the self exam, which always just seems so crazy to me since you don't really know what you're feeling that should or shouldn't be in there and with all the hormonal changes and different times of the cycle that change the density of the breasts, I never really trusted that my self-exams were useful. I felt something small in my right breast but then couldn't find it again when I tried. I decided it was too important to ignore it and called my doctor. He told me not to bother coming to see him and that he'd fax a diagnostic mammogram and sonogram order over to the local breast imaging center. My appointment was Wednesday, May 27, 2009. I arrived for the appointment feeling good, feeling optimistic. I still couldn't locate what I had felt so I was convinced it was probably one of those fibroids that come and go with the menstrual cycle. I figured that it was time for a baseline look anyway and to start having annual screenings. I actually have been asking my doctors to order a mammogram for me since my late twenties after I watched David suffer but every time I was told "You're too young....and since you have no family history of breast cancer it's not indicated." Okie dokie. My boobs were handled by the technician, placed into a plastic vice and smooshed every which way. It wasn't painful at all - just strange. Once the mammogram was done I was brought to the sonogram room where the tech asked me again to point to where it was I felt something. She didn't see anything there but decided to check the other side "just in case". Of course, looking back I now know it wasn't "just in case" - she saw something in the mammogram images. She moved the wand over my left breast firmly and said "did you feel that?" as she went over a bump. I did feel it - just then, but never before (and not since then either). She looked at the monitor which showed a big black blob. It looked gigantic. I said "what's that?", and she said "the radiologist is going to want to sample this." Oh lovely. She said she'd be right back and left the room to speak with the radiologist. When she returned she explained what a core needle biopsy was and how it would be done and asked if I wanted it that day or another day. I told her to get it done now. She left the room to contact my doctor's office to request the order so we could do it. I laid on the table for what felt like an eternity, thinking about all the possible things that this could be - giant fibroid (benign), infected milk duct (after all, breast feeding was a disaster for me), tumor (holy shit). Twenty minutes later a tall doctor entered the room with the technician and brashly stated "We're pretty worried about this." My heart sank and I was speechless. Now, if you know me fairly well you know that "speechless" generally is not a trait that describes me. It did then. He explained the procedure and all I could do was nod and say "OK" over and over. I was stunned and terrified. The procedure didn't hurt at all and it was fast. They gave me after care instructions and said that results would be sent to my doctor within 24-48 hours. Bob was away working so I was alone with Cooper that night. I couldn't sleep. I was short of breath (panic attack) for the entire night. I prayed and prayed and prayed that it was nothing to worry about. In the morning I held on to the fact that Bob would be home that night and I wouldn't be alone when the results would come back since they said Friday or Monday is when we'd get the results.. Thursday night, before Bob got home, my gynecologist called me. I had just been to the neighbor's house and the phone rang as I walked in the door with Cooper, my 11 month old son, in my arms as I grabbed the phone. "Hi Julie, It's Dr.N. I spoke with the pathologist and it's cancer." He went on to tell me what to do next - stop taking birth control pills, contact a surgeon (gave me a name and offered more names if needed), and told me it would be OK because he thinks we got it early though that was yet to be determined. Damnit is all I kept thinking and saying over and over once I hung up the phone. I walked right back out of the house and across the street to my neighbor's house so I wouldn't be alone with this information while waiting for Bob to get home. I kept thinking how can this be!? Holy shit! OMG! No! On Thursday, May 28, 2009, I was diagnosed with Ductal Invasive Carcinoma, negative for estrogen and progesterone receptors, HER2 status not yet known but pending. It was that same week, 11 years ago, that David lost his battle cancer. Unbelievable.

Launching "Operation Kick Cancer's Ass"

Welcome to my new blog where I will be journaling about my journey to battle, beat and recover from breast cancer. Thank you in advance for reading along while I go through this journey that I hope you will never have to experience yourself. I wanted to create a separate blog for this so that my sweet Cooper's blog (http://www.babyolsenchronicles.blogspot.com/) will remain dedicated to him. And, besides benefiting from getting it all off my chest (pun intended :)), it is my hope that my story will encourage other women (and men) to to take charge of their health and demand better and earlier screening for cancer (ie ladies, don't wait til 40 for routine mammograms and don't let a doctor prevent you from getting one sooner) or any illness or health challenge. To get the best care - preventive, diagnostic, and treatment - we must be our own advocate and demand the best. We can't afford to be shy or to just leave it in others' hands - we must take charge and that's how I intend to implement "Operation Kick Cancer's Ass". I welcome your comments and questions along the way. I just ask that you please give careful thought to comments - think about whether it's something you would say to your closest loved one if they were going through cancer treatment. I have a kick-ass attitude but I am human and have feelings too. I need to be as positive as possible. That means survivor stories are welcomed and the other kind of stories are not. I AM going to beat this. If you think differently I do not want to hear/read it - I'm sure you can understand that. How can you help me through this? I am frequently asked "what can I do to help?" and it warms my heart to know how many people genuinely want to help me through this. So, if you're not close but want to know what you can do to help - here are some specific things you can do regardless of where you are --
  • If you pray, please pray for me and my family. Please pray that we be given the strength and patience to work through this together with a positive outlook. Please pray that we are aided by the most talented and compassionate health care providers. Please pray that we quickly and effectively eliminate cancer from my body and prevent its recurrence. Please offer up any other prayers that will help us declare victory over cancer - we'd love to hear prayers and affirmations that you think might help us.
  • If you have a great link or know of a great resource that you think would help me and others, please post it in a comment and you might end up finding it in my warrior toolchest of links.
  • Give blood at your local blood drive or Red Cross center - blood saves lives.
  • Get a great haircut from long to short and donate your locks to an organization that makes wigs for cancer patients. Check out: http://www.locksoflove.org/
  • Participate in fundraising for the American Cancer Society to help fund much needed research so that someday there will be a cure.
  • Write to Congress: http://www.standup2cancer.org/getinvolved/congress
  • And, if you have additional ideas for how you can help me and others in this situation, please post them for me and everyone to see.

Thank you for everything - for your prayers, your positive thoughts, your kind words and generous expressions of care, for listening.

I hereby launch "Operation Kick Cancer's Ass" :)