Whattaya MEAN... it's not over YET??

Hahahaha... I thought I made a smooth transition into the my-life-after-cancer mode, but apparently the interim between cancer and cancer-free is filled with surprises. I graduated to a six month oncology visit schedule, and a one year MRI/mammo routine.  Lest I get too comfortable... 2 weeks before the scheduled M/M, I was drying my hair when I noticed a lump under my LEFT arm.  

What the hell is THAT?  It was Friday, and the radiology oncologist was out of town for a long weekend.  The nurse suggested I call the oncology surgeon, who gave me an appointment for early Tuesday morning, deducting a day or two of stress over what kind of growth was taking over the other side of my body.

"What the heck is THAT???" ... she mused when I lifted my arm.  I guess that's a more favorable response than, "Uh oh...."  She glommed my armpit with goo and did a thorough ultrasound exam. Although the lymph node was swollen, it definitely didn't look like cancer. But she wanted to make sure the upcoming mammogram and MRI took a closer look.

I'll spare the details of those exams, but had I not been there, I would have never believed it was possible to pull an armpit into a mammogram.  The second ultrasound confirmed the lymph node was normal, but it would be a few days before I learned the results of the mammogram and MRI. During the wait, I was pissed that we are so vulnerable to this beast, a little fearful, and a little confident that no matter what the outcome I could anticipate what treatment would be like.  Denial crept in, I'm sure.  The next day the oncologist's office called to say the report came back negative.  I received a letter from the radiologist to confirm that all was well.

A day later, I received a second letter from the radiologist saying I had evidence of a cyst that should be biopsied.  The oncologist had not yet received that news, and that's when the confusion started.  The next day I received a third letter, congratulating me because my test showed no signs of cancer!  OK.  WTF.

Apparently each separate test generated its own letter.  The mammo & ultrasound were clear, but the MRI found a smoodge in the left breast.  It was not a clear enough image for a surgical biopsy (just put me to SLEEP!!), so Dr. G ordered an MRI-guided needle biopsy.  UGH! I've heard horror stories about these, and the idea of a needle in my boob just freaks me out.  I was dreading it.

It was no big deal, really.  I didn't feel a thing; they must have used a pediatric needle for numbing.  The only weird part was that it sounded like she was using a dental drill to take the tissue samples.  The area was black & blue & lumpy for a couple of weeks, and a little tender for only a few days.  The results were in the next day - it was benign.  Ha. I should have known better than to get too comfortable.

In celebration of the clean report, I made an appointment with a plastic surgeon (Dr. S)  to talk about some cosmetic reshaping of the breasts to balance out the aftermath of all these surgeries and radiation, which has left me a bit lopsided.  I'm starting to limp from the extra weight on the left.  I didn't feel the need to go to the oncology plastic surgeon, and a local plastic surgeon with a long history of reconstructive procedures was recommended by friends.

The day after my 2-year cancer-versary, I was sitting in his office for a consult.  I didn't expect his response, which started this roller coaster ride which I hope is starting to settle. 
 

After telling him my history & recent events, he said he wouldn't touch my case cosmetically, and I had anyone ever talked to me about considering a double mastectomy? (He wasn't that blunt about it; that's the short version of an inspiring conversation. I have a high level of confidence in him.) He listed a few things in my history that really concerned him; they had been things that concerned me, but I was told it was OK.  I think his validation of these is what gives me a sense of relief that I'm not completely paranoid.

He referred me to another surgeon for a second opinion about a mastectomy, so I made an appt. for their soonest, 7/6.  What did I feel? hmmmm... a little fear that it will hurt, it will look gross for a while.  An odd sense of relief that someone is leaving no stone unturned.   I talked to Dave during his lunch break that day, and we are both OK with doing whatever needs to be done after the consult. But it sure looks weird to see that "double mastectomy" phrase in one of my posts.  

Back in the routine... calling all the docs to transfer records, making decisions, getting everything poked and prodded.  He also suggested I get that colonoscopy I've never had, and even an ultrasound on my ovaries just in case... it's good advice.  What concerns me is those who still think they ARE safe, invincible, and don't get anything checked till it's too late.  I guess it's time to resurrect this blog of the Reluctant Sisterhood, those of us intimately connected by this indiscriminate invader, doing our best to carry each other through to safer grounds.

A really eerie thing happened as soon as I turned on the computer that day - I received a long note (addressed to many of her friends) from a lady I met through my.crazysexylife.com, a network for cancer ... (what, Cancer-ese, cancer people? what???).  She had widespread breast cancer, double reconstruct, lymphedema, and now...

Her note was about how although she's finally had a clean bill of health, does the fear ever go away?  It was so timely. I wrote back and gave her the brief recap of what just happened.  A minute later she called me, and said every cell of her being was vibrating with the message that I need to do this.   Like a guardian angel swooping in unexpectedly to give me some perspective, we talked for about 1/2 hour about her experience, that of other friends that have gone through it. 

The next day another angel swooped in - she called for a nutrition consult because we are both post-BC, and we just clicked.  She invited me to a BC support group near my office, and these ladies have been an incredible resource of information on surgical options and the best folks for the job.  Almost everyone there has been to the same team as I have, with high praises.

Dave & I went to see the surgeon Dr. S recommended for a consult on 7/6, and long story short, he gave what we felt was an objective overview of the pros and cons of mastectomy and reconstruction vs reduction.  One subtle theme that I picked up is that there are PS (plastic surgeons) that prefer a cosmetic-based practice (and consequently a cash practice) and others that prefer an oncology/reconstruction based practice (despite the burden of insurance companies).  This is not good or bad; every medical practice, including chiros, face decisions about cash vs. insurance.

Which leads me to wonder... Did the PS that referred me there have hesitation about taking my case because he is moving towards a cosmetic-based practice, and does not stay connected with the oncology network he worked with in the past?  Would Dr. Hackert, who primarily does oncology-based surgery, have a different point of view?  She is the PS we went to see initially (2008) when I didn't know where any of this was going.  

Fortunately I'm not in a rush to do anything, so I have time to interview.  I met with Dr. Hackert this past week, and went over the details of her doing a reduction.  In the event that a mastectomy is the final decision, there is a process called DIEP that uses tummy fat instead of implants to create a new breast.  Most women who are familiar with this process have referred me to a doctor in SF, and that is the same doctor that Dr. Hackert recommends.

According to Dr. Hackert, the person who will have the most informed view on my risk of recurrence is the oncologist (chemo doc).  So that is my next stop.  There is so much to weigh out in making this decision. I won't beat this dead horse, but... I didn't have any risk factors to begin with.  

Whatever I need to do, I'm not freaking out about anything.  2 years ago I probably would have, but I've seen & done enough to know about successful surgeries (and you know who you are!) & am thriving wonderfully, so it's just another blip on the radar.  At the time I had a feeling I was a candidate for prophylactic mastectomy, now I see where I can glean more information.  I am so fortunate that the right people appear when I need them. Since there's no immediate emergency I will wait till at least November-ish before doing anything.  

What do YOU think about all this??? What wisdom can you share from your experience?

The Chemo Adventure Continues

Posted Nov 1, 2008 5:10pm

The past two weeks have been almost surreal – my poor body, which hadn’t seen so much as an aspirin before all this started, is completely confused by this chemical bombardment.

So much for defending myself against chemo. A few hours after my previous chemo update, “Miffles” had dragged me to the couch and sat on me for the rest of the day. I was somewhat consoled with the thought that I wasn’t the only one laying around on a Sunday afternoon, watching TV and feeling flu-ish, but it was certainly out of character for me. I was back to a normal schedule on Monday, although my energy was up and down over the next few days. The worst of it was a mild nausea, not enough to feel like throwing up, but enough to make me feel miserable and not the least bit interested in eating. The medication alleviated the problem, but I found something even better. One of my patients told me her dad is going through chemo, and by using some pressure-point bracelets from Rite-Aid, he didn’t have any nausea. Sure enough, I tried the PsiBands, and I haven’t had to take the meds since. They have a button that presses on the anti-nausea pressure point on the insides of both wrists, and they really work!

On Wednesday I had the MUGA heart scan, and I’m delighted to report the injection was in the arm and not the heart (whew). My charming tech, Stefan, explained every step of the procedure which started with a blood draw. He then disappeared into a shielded room, where over the next 30 minutes, while I patiently re-read a 2004 Architectural Digest several times, he processed my blood to break down the outer cell walls, and replace it with a radioactive marker. He reemerged with my blood vial enclosed in a protective lead tube (that was reassuring) and injected it back into my arm.

We went next door to the imaging room, where he helped me get comfortably situated on a narrow padded table that would later slide into the scanning tube. I didn’t even have to change out of my regular clothes. He placed a pillow under my knees, had me slip my arms into a wide fabric tube so they wouldn’t dangle off the edges, and the table rolled into position. Unlike an MRI, this is an open tube, with film panels that rotated into different positions around my body. The film is sensitive to the radiation that was pumping through my bloodstream, and as they fill the heart chambers, the image produced by the gamma camera is essentially an outline of those chambers. With some fancy computer manipulation, the final product is a movie of the beating heart. About 20 minutes later, I was able to watch the final film of my “anatomically perfect heart.”

I didn't feel so hot on Thursday when I went for the don't-worry-there-are-no-side-effects herceptin infusion. No wonder – my blood draw showed that my white blood cell count (immunity) had dropped to 0.8 from 13.3 the past week. The normal range is 4.0 – 11.0, which means I started out with a stronger than average immune system, and the chemo knocked the living daylights out of me. They started me on injections right away to raise my white cells and told me to monitor my temperature. I snoozed through the 45 minute infusion, and hoped the nap would give me a little boost. By the time I returned to the office at 1:00, I felt pretty sick, had diarrhea and my temperature was over 102. I left the chemo nurses a message, cancelled all my appointments for the day and went home to go to bed. They called back late afternoon & told me to go check into the hospital. I decided that driving myself was probably not the best idea, so I called a girlfriend who lives nearby. God bless her, she interrupted her shopping spree to pick me up within 10 minutes - now THAT's a friend :>)

I called Dave before I left, pocketed my license, insurance card and keys, and off we went. I must have been delirious to not bring any personal items. Every trip to the hospital so far has involved only a few hours, so I wasn’t even thinking that I’d be there overnight. I checked into Sutter Roseville around 4:30, and when I first entered the lobby, I had to ask someone if I was actually in the hospital. It is a beautiful facility, with colorful landscaping and a rocky fountain in the lobby. The oncology ward is new, every room is private, and by my bed was an enormous window overlooking a wooded area. Dave was there within minutes of my getting settled, and luckily he had the foresight to suggest he run down to the gift shop to get me a toothbrush.

The staff was absolutely wonderful, although the first hookup to my port was… interesting. It gave me a profound appreciation for how adept my regular chemo nurses are at accessing it in an instant. You know how I dreaded the thought that the MUGA scan might be like the scene from Pulp Fiction? I may have been spared on that round, but we made up for it during the port episode. The nurse first lowered the bed to a fully reclined position, which was strange, since the port is always accessed with me sitting up.

I started to worry when after palpating around it curiously for a few moments, she muttered a “hmmmm….” I think a little bead of her forehead sweat hit my nose, but I was getting nervous and it could have been my imagination. At that point, someone opened the door to ask her a question, and through gritted teeth, she said, “NOT RIGHT NOW, I'M ACCESSING A PORT!” Oh boy. Please don’t piss her off. Just back out of the room slowly, and we’ll all be fine.

After a few uncomfortable and unsuccessful attempts, I suggested that maybe it’s just my type of port; we never have a problem if I’m sitting up – would she like to give that a try? (Please???) She gave a surprised “Hmph…,” and said they had been trained to have the patient prone for the process. I convinced her it might be fun and easy, and she agreed to sit me up. Fortunately it worked, although for the first hour or so I still worried if she may have missed entirely and the fluids were just splooshing uncontrollably into my chest. When all was said and done, I was again very grateful for the port. For the next 4 days I was on IV antibiotics and fluids, and frequent blood draws; I can’t imagine what a nuisance it would have been if I were trying to function with a needle in my arm.

Thursday had been one of those days I didn’t really need to wash my hair, and it looked perfectly fine up in a clip. Which means by Friday I knew it would be plastered to my head and I’d feel like I’d slept under a bridge. Once I realized I would probably be there at least until Friday night, I sent Dave home with a list of a few basic toiletries to retrieve for me when he came back after dinner. Very basic – he is just too sweet a man to be subjected to digging through drawers of potions. I didn’t even care about cosmetics; I just wanted to get clean. But I should have thought of a hair drier, since it was a little chilly trying to dry my hair with just towels. Oh well, hopefully I won’t have to do this again, but if so, I know how to prepare,

My mind felt so dull that I didn’t even feel like reading, and although daytime TV should be enough to bore anyone into a trance, it is very difficult to sleep in a hospital. By Friday night, my blood pressure had dropped to 77/44 (from my usual 125/70). Since that can be a sign of sepsis (systemic blood infection), they were considering calling in the Rapid Response Team to determine I should be in ICU. Fortunately, I wasn't having any signs of low BP - dizziness, slurred speech, etc. - so they checked it every 1/2 hour all night and it slowly started going up. Whether it went up because I was recovering or because I was getting agitated from being awoken so often, at least it was increasing.

Although it was the only time it happened, they were not able to draw blood from the port that night, so the nurse said she would send in a phlebotomist later. In the middle of the night, just as I was starting to rest, there was a knock on my door. It slowly squeaked open, and a short, bald, wiry guy with glasses poked his head in the door. “Miss Andreoni? They sent me here to see you…” Good God, now what? As he pushed the door open with his back, and dragged in his cart of tubes & vials and needles, I swore he was one of those sinister “doctors” that would have the means to make me talk… I’ve been watching too many Netflix episodes of Alias. I’d been pumped up with so many fluids that he had no problem painlessly accessing a vein in my hand, and actually told me I had the kind of veins that phlebotomists dream of. How sweet.

A neutropenic diet was my introduction to the dark side of oncology nutrition. If the cancer doesn't kill you, the hospital food and/or lack of sleep from being prodded every 1/2 hour will for sure. I was so excited when I saw a "Tossed salad" on the menu - ah, leafy greens at last! Imagine my dismay to learn that in hospital language, this means 1/2 cup of the whitest part of iceberg lettuce, a 3 inch shred of red cabbage and a cherry tomato. Most vegetables are canned (unless you choose the baked potato chips), and I never realized there was a way to cook brown rice to bring out the ultimate bitterness of the grain.

I had requested grapes for dessert, but since they can’t be peeled, they substituted a tiny sealed 2 ounce container of “strawberry” ice cream. It was the color of Pepto Bismol, and glowed threateningly in the dim light of the room. On Saturday I had Dave smuggle in some real food, although my choices were still limited because of my susceptibility to infection. No fresh fruit, except bananas, which could be easily peeled after a thorough washing. Everything else had to be factory sealed. So I settled for some Odwalla shakes, carrot juice and organic yogurts. YUM!!! Really, I felt so nourished!!!!

The upside of all this is that the staff was wonderful, and the room was as comfortable as a hospital can be. If I hadn't had to drag an IV contraption with me every time I went to the very nicely tiled huge bathroom where I had to pee in a measuring "hat," I may have felt like I was in a hotel.

Apparently the reason they could not give me the meds prophylactically to prevent the drop in my white count is because the shot is $3800 a pop, and until I show a need, the insurance company won't approve it. I'm going to guess a couple of shots of this stuff would probably have been less expensive than 4 days in a private room in the oncology ward, but what do I know about cost containment... :>) In all fairness, Laura (my oncology nurse) said most folks don’t react this strongly to the first treatment. The good news is that the chemo is working. The other news is that I am extremely sensitive to it. If I have a similar reaction on the second treatment next week, they will lower my doses for the next two treatments. I thought I was just supposed to grin and bear it. But the objective is to wipe out the cancer without my feeling so miserable in the process. They kept me on shots to raise the white blood cells, IV antibiotics and fluids, and the worst food on the planet until Sunday, when everything normalized.

Dave's mom had us over for a wonderful dinner on Sunday night, so I didn't have to cook. Even though I don't have my normal appetite, it was such a delight to eat real food!! You would think 4 days of starvation would be a great kick-off for diet, but with all the fluids, I actually gained five pounds. I was back at work full time & feeling my old normal self on Monday, and the extra weight dropped of over the week. But wait, the fun didn’t end there! To be continued…

Love, Laurie

GOOD MRI NEWS!!

Posted Jul 2, 2008 2:05pm

GOOD NEWS!! Dr. Guirguis's office just called after receiving the MRI - all that seems to be needed at this point is a more extensive lumpectomy and check of the sentinal (most susceptible) lymph nodes. The soonest available date for surgery will probably be the end of next week, but I'll keep you posted.

Thank you, thank you for all the energy and good wishes and prayers and lucky pennies - it all works, I feel every sparkle coming my way, and send my love and gratitude to all of you.

In the beginning 6/28/08

Wow - what a difference a caring doctor makes.

But more on that in a minute - I've been going like a madwoman for the past 2 days, and this morning when I woke at 4:30 I just took a few minutes to breathe and take in all the love and prayers and beautiful sentiments you all have sent. It was the first time I cried ever since this all started on Tuesday. It was not for any sadness, but a deep, wonderful sense of connection with all of you incredible people in my life. I can't begin to tell you how much your calls and notes and conversations have meant to me. Going through such an emotional event leaves the heart raw in a good way - exquisitely sensitive to the smallest kindness, and overwhelmed by your outpouring of good wishes. Thank you from the depths of my heart.

It has been awesome talking to you either by phone or email, but things happen pretty fast, not giving me much time to call or write every time. So in addition to any other contacts we have, I'll keep things updated on this page for as much or as little information as you'd like!

This morning Dave and I went to Sutter Cancer Center for a second opinion. The initial appointment process was encouraging in itself. On Wednesday, a young lady named Manjesh had made the soonest possible appt. for me, which was July 16. But knowing how concerned I was about the wait, she said the if I faxed my records, she would put a note on the dr's phone to see if I could come in sooner. Thursday at 8:30 a.m. she called to say the dr. would come in EARLY - before her clinic hours - if I could be there at 8 a.m. today. That's dedication.

We met for over an hour with Lisa Guirguis, MD, whom we both fell in love with. She thoroughly explained my pathology report, all the best and worst case possibilities, as well as every treatment option in each case. She brought in the ultrasound unit to do an exam herself, and explained everything to us in detail. Not only will she have the original tissue samples re-analyzed by a pathologist that specializes in this type of cancer, but she also ordered an MRI of both breasts to make sure we had a better idea of what we are dealing with.

When I told her the name of the plastic surgeon I was consulting with, Lisa gave her high marks and said they work together all the time - and did so yesterday.

What Dave really liked is not only did Dr. Lisa help her assistant immediately write up the MRI referral, but we each got our own map - a "guy map" (regular diagram/street map) and a "girl map" (because we want all the details of the story) that was hand drawn to show where it was in relation to Safeway, the water tower and the fire station.

Within 15 minutes of our getting home, her office called to say our insurance had authorized the MRI. A half hour later, the radiology office called to schedule my appt. for 7:30 a.m. on Monday.
The previous surgeon had given me a huge disorganized binder that was a collection of booklets, photocopies and brochures, and a good luck wish in finding the rest of my medical team. Dr. Lisa's binder is beautifully done by Sutter - "My Personal Journey." The first page is a business card holder, with cards for her, the plastic surgeon, dietician, oncologist, nurse, etc. I feel I'm in competent, caring hands. It's a great day!