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

Hair, There and Everywhere

Posted Sep 18, 2008 3:49pm

Finally – with the cooling weather, the hot flashes are less brutal. During the day I wear sleeveless tops, clip up my hair and keep on going. Night time is still the worst; despite the combined breezes of the ceiling and floor fans, the flashes shake me from my sleep almost hourly. Some days I just don’t feel rested, and that can be dangerous to my peace of mind. Unrest releases the goblins in my head that make me cranky and worrisome about crazy stuff like the hair issue.

A stylist friend called this week to assure me that I will absolutely love my new hair, and I should really look forward to the transition. She shared her experiences about clients that have already gone through this, and offered to come to my house and “buzz my head” when the time comes. We had a good laugh about how crazy our priorities can be. When I found out I had cancer, my attitude was OK, fine, now we know – what do I have to do? But the hair… this is so nuts. I have finally realized this new obsession is nature’s way of dangling a useless subject to distract me from worrying about the cancer.

Last weekend the weather was glorious, and I took advantage of the temperate sunshine to start cleaning up the fading garden. I attacked the overgrowth and undergrowth without mercy, and more than once I was tempted to end the hair topic once and for all with some extensive hedge trimming of my own locks. I suspect Dave would have put me away somewhere quiet if he looked out to see me knee deep in garden waste, hacking away at my hair with the Fiskars PowerGear hedge shears, even if they are the “only hedge shears to be awarded the Arthritis Foundation Ease-of-Use Commendation.”

This hair fixation reminds me of the time I did a ropes course and discovered there are times when my body and thoughts have no regard for each other. Secured by a harness and pulley apparatus, I was to demonstrate my willingness to conquer challenges by climbing a 50 foot pole, balancing on the top and leaping off. It made sense at the time. As I started the ascent, my thoughts were, “This is going to be so exciting, what a wonderful lesson, I’ve been looking forward to this…” etc. My body said, “You are so full of it. You are going to die.” Despite the affirmations my knees turned to rubber; every cell in my body followed suit and shook uncontrollably. I kept climbing. I leaped into the void. I lived. So there. This too will pass.

On all these cancer issues, I recognize a particular stress pattern. The night before a consultation or event I’m restless and worrisome. I’m fine for the meeting, then intermittently jumbled and teary for the rest of the day. My chattering brain prevents any restful sleep that night; the next day it’s all processed and I’m fine. So last week I attempted a system overload and it actually minimized my worry time. Although the Thursday “chemo class” triggered my usual reaction, I actually had no post-funk response around the radiation meeting on Friday, or the Relay for Life on Saturday. I think I’ll cram all the appointments together from now on.

The Thursday morning “chemo class” involved a private meeting with a cheery oncology nurse, one of few people who can talk faster than I do. She rapidly scanned the pile of papers describing the process, schedule, drugs, possible side effects, what to do and what to avoid, and I signed enough paperwork to make me wonder if I hadn’t taken on another mortgage. She also wrote a prescription for a wig, but between the hot flashes and the hypersensitive skin that goes with chemo, I'll probably just stick with the colorful head wraps!

I feel great, and don't start treatment until 10/9, after I come back from vacation. Then it will be full steam ahead - 6 sessions of regular chemo (three weeks apart), and a year of herceptin infusions, also every 3 weeks. Chemo is big business and growing exponentially; I have to do 6 cycles instead of the usual four, because research in the past six months has shown it's more effective. I can't help but wonder who financed this research…hmmm…. Can you say “pharmaceutical?” 3 weeks after the regular chemo, radiation begins - 5 days a week for 30 sessions. Six months after radiation is complete, I will meet with the plastic surgeon again to see if insurance will cover refurbishing the damage that will be left in the wake of all this. Then five years of Tamoxifen. This is quite a transition for someone who never even takes an aspirin.

I have to bite my tongue as I listen to their “nutritional advice.” Sadly, because natural remedies can't be patented to produce a substantial profit, there is no financing for extensive research on the effects of nutrients/herbs/supplements on cancer, or during chemo. So they are all passed off as "dangerous" and interactive with the drugs. I have been warned repeatedly not to take any more than a single multivitamin, and especially to avoid antioxidants or herbs during treatment because of the possible interactions with the chemo. But there is no hesitation to prescribe a multitude of pharmaceuticals to counteract any symptoms. They may have horrific side effects, but at least those are a known factor.

And there are NO dietary restrictions. I find this very odd, since cancer cells thrive on glucose. The “nutrition” booklet from the American Cancer Society actually recommends refined carbohydrates, processed foods, ice cream, sugar-loaded shakes like Ensure, and other sugary foods. The logic to this is that chemo wreaks havoc on the taste buds, and since it is wiping out all the cancer cells, the most important dietary consideration is to make sure the patient gets sufficient calories in any way possible. I probably shouldn’t be so snooty about the whole thing. If and when that time comes for me I may be quite eager to dismount from my high horse, drop to my knees and plead for the extended companionship of Ben & Jerry.

I’m still waiting for insurance to approve the MUGA scan of my heart prior to treatment. When I pressed for details, Virginia of the Infusion Room reluctantly said they used to do the contrast dye injection for this directly into the chest – YUCK!!!! - but believes they now do it into the arm. If my internet research is correct, it is now injected into the arm. If not, I will graciously accept any sedatives they are willing to load me with. No wonder I felt teary after I left.

On Friday a patient brought me a jar of the "Chinese burn creme" to protect me from the radiation (miracle stuff!!), and an hour later Dave and I were sitting in the exam room of the oncology radiologist in Cameron Park. She is from SF, and said that in the Bay area, she was treating women with breast cancer in their 20's and 30's. Call it a conspiracy theory, but I find it ironic at best that each year chemical companies sell us over a hundred thousand compounds to dump into our environment, and then make more money on the other end to "cure" us from the damage. If they spent half the time removing all the junk in our food and environment that's causing and contributing to cancer in the first place, we wouldn't have to spend as much time and money treating it. But that’s another discussion.

She gently relayed what she assumed would be difficult news - for the rest of my life, I will have to get MRIs instead of mammograms. I expressed my delight and gave her the condensed version of meeting my ancestors during the recent MRI-induced vision quest. Her location facing the door prevented her from slowly backing out of the room, which may have been her choice at the moment. Dave remarked later how her expression changed from empathy to concern that I had probably lost my mind. I wasn’t embarrassed in the least – I intend to make the best of whatever they throw my way. Well, except that possible – but not likely – needle-in-the-chest thing.

The bottom line is that all the health care providers are saying my risk of recurrence is extremely low, but they have to bombard me with all this junk because of the HER2/neu gene. The other good news is that all the medical folks and survivors I've met with this week keep reminding me that everyone's response is different, so who knows? Some people actually breeze through this with little or no reactions, and I plan to be one of them.

On Saturday a friend invited me to join her group in Placerville for the Relay for Life cancer fundraiser. When I told Dave my plans, he immediately jumped in to join us, which is very special to me. He never hesitates to rearrange his work schedule to take me to all the medical consults; he's such a love. Our walk was at 5:00 p.m., and the late afternoon was balmy and beautiful. She presented me with a sparkly pink beaded necklace, her “Courage” bracelet, and a purple “I’m Living Proof” t-shirt. One of the discussion topics during our walk was at which point one is eligible to wear the “Survivior” t-shirt. Five years? Post-chemo? Post-surgery? Dave concluded that once you get the diagnosis, you are an official survivor - until you’re not. Works for me.

The bands that played throughout the day and night were fabulous, and volunteers of all ages put obvious effort into organizing the event. The relay path was lined on one side with luminaries, and on the other with information and memorial booths. Each white luminary bag was decorated by the kids that volunteered, and were labeled as either “In memory of…” or “In support of…” It was heartbreaking to see so many luminaries, representing too many victims of this disease. On the other hand, it was so uplifting to know there is such a high level of concern and awareness, and talk to women who have bravely survived much worse than what I face. They look and feel great, offer such positive support, and I always make new friends.

After our walk three of us claimed a picnic table in the shade to watch the continuing relay and enjoy our smorgasbord of snacks. Cooled by the light winds of the early evening, we watched the full autumn moon rise above the circumference of trees. We hooted and hollered our appreciation for the band and the relayers that passed our table, some walking, some dancing, others on canes or in wheelchairs. I chose to leave before the ceremony of lighting and reading each luminary. Over the past several months I’ve found that so much information at once about cancer can get overwhelming and depressing, even if it is supportive. It’s just too much to grasp sometimes, and I can only take it in small doses. Sometimes it’s just too much to become so connected to how deeply immersed I am in this.

So it’s back to the garden for a metaphor that will make sense of all this madness. Despite my attentive care, nuts hedge and Bermuda grass have made a merciless invasion throughout the beautiful planter strip around the lawn, now gradually creeping into the hillside garden. The only way to control it at this point is to dig up all the affected plants and spray the weeds with whatever herbicides will do the job. I hate using this nasty poison, and I know it will wipe out the healthy plants as well, but my conservative efforts were no match for the aggression of the weeds. Once this malignant growth has been contained and removed, I can make a fresh start with a nourishing foundation, and better knowledge of how to keep the garden healthy and prevent the weeds from returning. As much as I will miss the temporary loss of vibrancy and color, I know some things need to be sacrificed. In the long run, it would be counterproductive to fertilize anything while I’m trying to kill off the stuff that could eventually choke the life out of the entire garden.

Bring on the Roundup… I’m ready for the overhaul.