Stop the press. After conversing with Dr. Bitar late this afternoon, I have accepted a new date for mastectomy plus sentinel lymph node surgery only. We both felt there’s a good chance I’ll need radiation (and possibly chemo) therapy which would push reconstruction off until those are complete.
Surgery Date: Mon June 13th @ 11.30am
Unfortunately, this means that I won’t be able to attend the Race for the Cure in Plano on 6/11. However, we will be walking in solidarity with my Race for the Cure sisters that morning because I am rescheduling Susan’s Bosom Buddies Walk here in Palo Alto for 6/11. See the updated Hills are Alive post for more info.
Update on 6/8: Surgery begins at 1pm.
I should fill in some of the details missing from yesterday’s post.
Dr. Bitar has been unable to reach Dr. Kavanagh because she’s on vacation until Monday. I am interested to hear justification for what appear to be diametrically opposed opinions regarding my case. Dr. Kavanagh has painted a fairly rosy picture in which DCIS-MI is perhaps the worst diagnosis I should expect, compared to Dr. Bitar who has said the entire 6cm mass viewed on MRI could potentially be invasive cancer. In accepting the mastectomy + sentinel lymph node only surgery, I am going ahead and preparing for the far less desirable outcome, fervently hoping for the former, yet expecting a result somewhere in between.
Dr. Bitar had not yet been able to reach another radiologist to get an additional read on my MRI, but she was able to discuss the original MRI report with my other physicians. Dr. Seaward, my radiation oncologist, agreed there might be a need for radiation given the proximity of my mass to my pectoralis muscle. And as expected, my plastic surgeon, Dr. Orman, stated the need to delay reconstruction until after any potential radiation.
Conditions which could lead to a recommendation for chemo include the presence of invasive cancer, metastasis in lymph node(s), and tumor size. Radiation would be required if we can’t get a clear (cancer-free) margin at the pectoralis or if there is metastasis in the lymph nodes.
Dr. Bitar plans to shave an 1/8″ depth from my 1/2″ thick pectoralis muscle in the MRI indicated tumor region to try to create a clear margin. Furthermore, she will need to judiciously remove tissue in the axilla (armpit) region to create a clear margin on that side of the tumor. The axilla consists of fat, blood vessels, nerves, and lymph nodes. Excision from these areas, in contrast to simple breast tissue removal, could lead to lasting motor reduction and swelling.
Whereas my surgery starts at 11.30am on 6/13, I will check in a few hours beforehand in order to receive a weakly radioactive injection which will help Dr. Bitar locate the lymph nodes (using a Geiger counter) to be removed and tested in the sentinel lymph node biopsy portion of my surgery. I was greatly relieved to hear that Earl will be able to stay with me for most of the period before surgery.
By the way, Dr. Bitar is going above and beyond in accommodating my needs. Although she was scheduled to be on vacation for a week encompassing 6/13, she voluntarily offered to disrupt her plans to return to work just for my surgery. What a woman!
Thanks to everyone who is graciously offering to help with the children around the day of surgery and shortly thereafter. Earl’s parents and sister are very generously taking charge of our older two, who will fly out to Dallas June 10th and stay until June 22nd. We didn’t want them to miss the trip which we had planned months ago, and they always enjoy spending time with their cousins.
Meanwhile, the youngest will stay here in Palo Alto with us and then be cared for by his grandmother and uncles while Earl and I are otherwise engaged on June 13th and 14th. He will be looking for playdates after that time; I’ll work with Eva on setting up the mechanics at the Lotsa Helping Hands site very soon to create sign-ups not only for childcare, but also for meals and Trader Joe’s shopping. A tremendous help in the first couple of weeks would be for folks to take our little guy out so that he can burn off energy outside of the house so that I can watch movies and eat bonbons (I mean rest!) inside. Thanks!
Sorry I didn’t end up posting anything yesterday. I’m still here, but have been scurrying around trying to take care of items on my checklist before the kids leave and before the surgery. Yesterday I hit the closets, weeding out outgrown/old clothing to ensure there is enough room to put all of our clothes (if by some miracle they were simultaneously all clean) without resorting to storage on chairs, the floor, the stairs, etc. People who have children might recognize this flurry of activity as nesting. As a matter of fact, I have observed there are, oddly enough, many other parallels to be drawn between preparing for my surgery and awaiting childbirth.
1) Food stockpiling — You just never know when company’s going to come, the “Big One” hits, or you develop a hankering to consume 12 boxes of organic macaroni and cheese in one day. Thank goodness for Costco.
2) Just calling to say “hi!” — You know the routine. Girlfriend is in week 39 of pregnancy and looked ready to pop the last time you saw her. So you casually give her a call, inquire about the baby’s room, names, and late in the conversation finally probe whether she’s in hard labor yet. Just so you know, that was one of the primary reasons I set up this blog … so I don’t have to repeat the same answers all the time (and also so I don’t end up retelling the same boring stories ad nauseum to a poor, accommodating friend simply because I can’t remember who’s heard what). The downside is that when I actually do meet blog readers in person I have absolutely nothing interesting or new to say.
3) What to eat when you’re expecting — During pregnancy, you eat for your baby. This time, I’m eating for myself. I’m bulking up on protein and iron to help my body repair imminent muscle damage, adding antioxidants to help fight off the cancer, and eating dark chocolate because it makes me happy (plus, it’s an antioxidant!).
4) The bag’s packed — No diapers, no cute going-home outfits, no bibs, no booties. My bag will be much lighter this time, but I will make sure to bring my Kindle, dvd player, Ipod, headphones, robe/pj bottoms, slippers, favorite toiletries, and some snacks in case I can’t stand the hospital food. Actually, maybe my bag won’t be lighter this time.
5) Pink or blue? — When the day finally comes, childbirth results in a beautiful baby girl or boy, whereas I will be delivering a bouncing … ok, I think you know where I’m going here.
6) After it’s all over, someone is going to end up being babied, and baby, I’d better be that someone.
I was driving back home from my preoperative appointment this morning, mindlessly navigating my way to I-280 and mentally replaying snippets of information about my surgery, when my attention was suddenly hijacked by the stunning sight of cascading verdant mountains framed by a clear azure sky. Also called Junipero Serra Freeway, 280 pales in comparison with other exceptional corridors I have traversed over the years like the road connecting idyllic hamlets on the Amalfi Coast or the show-stopping Hana Highway on Maui. But it wasn’t dubbed the “world’s most beautiful highway” for nothing, and if one must travel from San Jose to San Francisco by car, it serves up a periodic feast for the eyes. A welcome respite from my weightier thoughts, this comely stretch of road led me to today’s epiphany: with its ideal weather, natural beauty, and highly trained medical professionals, Northern California is a good place to have cancer.
But getting back to this morning’s appointment:
1) The official check-in time on June 13th will be 10am. My radioactive injection will be administered at noon, and the actual surgery will begin at 1 or 1.15pm. I will stay overnight in a private room and be discharged Tuesday.
2) To help avoid lymphedema, I need to exercise caution forever more with my right arm (which is adjacent to the lymph nodes to be removed). All blood draws, injections, and blood pressure checks need to be performed on the left arm.
3) I will have either 1 or 2 surgical drains for approx. 1-2 weeks post-surgery to remove excess fluid from the incision sites. Until these drains are removed, I am prohibited from regular showers, driving, or lifting anything heavier than a gallon of milk.
4) Once the drains are out, I will begin a series of exercises to regain range of movement for my arm.
5) Vicodin will be prescribed for pain management at home, to be replaced by extra-strength Tylenol when tolerable.
6) The probability of cancer recurrence in the same breast after mastectomy is between 1-3% and would present as a gravel-like protrusion under the skin at the mastectomy scar line. Note that recurrence in the right breast is not to be confused with metastasis (spread to other sites in the body) or a new primary cancer (if something ever showed up in the left breast).
7) I should be feeling better 1-2 weeks out (and back to a normal routine in 3-6 weeks), though I will still need to limit lifting and exercise. It can take a good deal longer, perhaps months, for my right arm to return to its original range of movement.
8) No vacuum cleaning or weed pulling with my right arm for 6 months. 6 months!!!
I made a mistake this morning. I stepped into the realm of worst case scenario.
Flicking on my computer, I began my morning perusal of a breast cancer forum on breastcancer.org, this time getting tips from women who have just had a mastectomy. One thread led to another, and pretty soon I was wrapped up in sad stories from Stage III and Stage IV patients. It didn’t take too much imagination or projection to put myself in their shoes, and then it was all downhill to … Breast Cancer Blues.
I eventually managed to shut off my computer and go upstairs to find refuge and reassurance from Earl, but still found it difficult to shake my melancholy. So I left him in charge of getting the kids ready for their last day of school, strapped on my walking shoes, and headed out into the fresh morning air. While exercise is typically a surefire antidote to stress or gloominess for me, today’s mood proved a worthy challenger. Clearly, it was time for some more ammunition. I tried a little shopping, a couple of bites of chocolate, but I still couldn’t shake that funk, the nagging voice in the back of my head that maybe, just maybe, things weren’t going to be ok. I wasn’t worried about the surgery. I was terrified by what will come after the surgery, the pathology report and the prognosis.
And then I received a call. And an email. From my cousin Frank and my childhood friend Kim. Angels from heaven, they reminded me when I needed it most today that I am not alone and that I am loved. And all of a sudden, without effort, the clouds lifted and I remembered why I am going to make it through this: because I am not alone and because I am loved.
(BTW, I’m actually going to follow Earl’s advice for once and initiate a moratorium on research until after I get the pathology report back.)
Breasts to the left of me. Breasts to the right of me. And yet it was a breast fetishist’s nightmare: they were all fake.
Yesterday afternoon I made a trek out to a little boutique in Los Altos to pick up a couple of post-surgical garments. Essentially soft white camisoles, these utilitarian little tops hold fiber-filled pouches in strategic locations to cosmetically mimic the recently removed breast(s). They also have special interior pockets to hold surgical drains. After I’d been fitted for my camisoles, the proprietress introduced her vast selection of breast prosthetics and accommodating garments so that I will be able to make informed choices in 4-6 weeks when it’s time to select my foob (fake boob) trousseau.
According to my plastic surgeon, many patients going through mastectomy do not elect to undergo further surgery for implants or autologous tissue transplant (like my planned tummy tuck). These women either stay flat or they use a foob, a squishy silicone filled pouch that approximates the weight of the lost breast and restores symmetry. It’s like an implant that you wear on the outside.
My insurance pays for 1 foob every two years (though hopefully I will have had my reconstruction surgery long before then) along with an annual allowance of 3 foob bras. Foob bras look like normal bras except that they have two recesses to cradle your foob(s) of choice.
I saw petite foobs (my size), massive foobs, swimming foobs, swimsuits to put the swimming foobs into, lymphedema foobs, diving foobs, foobs with wings (to fill in more extensive excisions), tall foobs, flat foobs, wide foobs, exercise foobs, foobs that can park your car (joke), firm foobs, floppy foobs, clear foobs, flesh-colored foobs, filler foobs (for partial mastectomies), ventilating foobs, foobs with nipples, foobs without, foobs in the daytime, foobs in the nighttime, foobs for suppertime … oh, sorry, scratch the last three.
Thanks so much to everyone who came to my Bosom Buddy Walk yesterday morning. I had a fantastic time and I hope you guys enjoyed yourselves, too. Around 30 friends (33 if you count the president of Mexico and his security detail*) woke up extra early to walk the full route and another 20 or so non-walkers joined us back at the house for breakfast. Thanks also to those who elected to skip the gathering due to illness … I do want to be cold and fever free for Monday and appreciate your thoughtful precaution. I am delighted to report that I will be bringing all of your warm wishes and wonderful support with me to the hospital tomorrow. I truly feel energized, loved, and ready to roll. Thank you!
On a side note, my friend Katherine reports that she coincidentally heard the Bee Gees’ song “Stayin’ Alive” on her car radio both on her way to the BBW and on her way home, broadcast via two different stations. Furthermore, she contends the song’s name is a natural complement to the title of my original BBW post. Is this foreshadowing? Could Katherine’s car radio be a crystal ball? I’ll happily say yes!
You know it’s all right, it’s ok
I’ll live to see another day …
Ah, ha, ha, ha, stayin’ alive, stayin’ alive
Ah, ha, ha, ha, stayin’ alive.
BTW, we West Coasters weren’t the only ones having fun yesterday. Earl’s Uncle Aaron and Aunt Ruth conducted their very own BBW, but Atlantic Coast style.
*FYI: El Presidente Felipe Calderón** is in town to deliver the commencement speech at Stanford today. Our sharp-eyed and quick-thinking comrade Andrew sussed out the situation yesterday after spying a shiny black SUV limousine down at Stanford Avenue and a conspicuously attired gentleman waiting just off the path. Sure enough, as we waited at the bottom of the trail for lingering participants from our posse, the leader of Mexico jogged down towards us, security in-tow. We cheered upon his arrival, and I do have to add that he seemed a bit surprised at being greeted by a generously sized early morning welcoming committee in the Stanford hills. ¡Bienvenido a América!
** Any mention of President Calderón herein does not constitute an endorsement of his administration or policies.
I kicked yesterday off with one last swimming session with Anna and her family, since germ-filled pools will be out-of-bounds until my incisions are completely healed (in approx. 6 weeks). Anna and I swam laps for our usual 40 minutes and then rinsed off and geared up for the morning’s second half: a bike ride.
To help preserve my sanity during extended running and swimming free periods during my cancer treatment, I recently decided to invest in my very first road bike. Anna donated the bike duds (thanks, Anna!) and I went all out on the bike accessories: clip pedals, cycle shoes, and a bike computer … as you can see for yourself. We inaugurated my new wheels with a glorious, invigorating 16.5 mile ride around the Stanford loop through Menlo Park, Woodside, Portola Valley, and back to Stanford. With gorgeous weather and a delightful companion, it was a promising start to another enjoyable sport.
Earl and I will be leaving for the hospital in a few hours. If you want to track my progress today, my brother Dale will be updating this blog with real-time surgery news. I should be in the hospital overnight, and then back at home late Tuesday to continue my recovery. Please hold off on visits and calls for at least a few days.
I will close for today with a personal message.
This is your fair warning. You may have seized an early lead, but only because you struck while my back was turned. I will overlook your poor sportsmanship, and I caution you that your predictability makes you vulnerable. And while I admit you have won some territory, know that I will root you out. Tumor by tumor. Cell by cell.
I am supported by people who love me. You are not. I have a team of medical professionals who devote themselves to defeating you. You have none. Our paths are now intertwined, but make no mistake. I will employ anything and everything in my power to strike back, to preemptively attack, and to discard you as a distant, distasteful memory.
While this may be but the first battle between us, I will ultimately prevail, because I am stronger, I am smarter, and I am better than you.
Watch out, Cancer. Here I come.
Hi, I’m Dale, Susan’s oldest sibling and your guest blogger for the day.
There’s been a change of plans this morning. Kaiser called early to reschedule the surgery because of a cancellation. Susan’s surgery is going to start at 11am PDT, instead of 1pm as we thought.
Update: Well, it’s Susan’s originally scheduled surgery time and she’s still in pre-op.
Another update. 3p: Susan finally went into surgery at 2.45. I went back and sat with Earl and her and both are doing great and are in good spirits.