Looking Forward

I went to the Cancer Center for my first dose of Herceptin (only) yesterday. I was so fearful just approaching the place that I had them take my blood pressure as soon as I got to an exam room; I thought I was passing out. Upon hearing I had ideal blood pressure, I began to feel much better!

So Doc and I had another good talk. Again he offered that last full blast of chemo, but I smiled and said no thanks. When I quizzed him about why he gave the nasty Taxotere every 2 weeks rather than the recommended every 3 weeks, he went into a long exposé about trials that had been done . . . the bottom line being there is reason to believe Taxotere WEEKLY has the best results, but they didn’t have enough people able to complete the trials! (No kidding.) So instead, data is being gathered on patients who have it every OTHER week. I would have been one of those statistics if I hadn’t quit. (See next blog entry about the woman I met yesterday with the same treatment program I have.)

We talked about my difficulty sleeping with the itching/tingling sensation in my legs. He was reluctant to believe it goes away when I walked around and starts up again when seated or lying down. He as much as said it’s in my head. I can’t deny that allegation; I’ve got my parents’ genes after all (both anxiety freaks). Nonetheless, he is always quick to grab his prescription pad! He recommended Neurontin for neuropathy. I haven’t tried it yet (I’m collecting unused prescriptions) because I suspect the condition is getting better on its own and don’t want to add more chemicals to the mix.

Upon hearing that the pre-meds for Herceptin were just Tylenol tablets and half the dose of benadryl I was getting before, I felt much better about the year of Herceptin in the offing. (No more steroids.) With that, I asked him about my veins holding out and whether I’d need a port. (I’d done some research and my adamant refusal now seemed unfounded.) He said it was up to me or the nurses in the chemo area. When I was good and tired of having my right arm beat up every time, I could request a port and it would be arranged with a surgeon within days.

Once again in my favorite chair, the first nurse gave up trying to IV me, and I was never so pleased to see “the good one” heading over to get the job done. I asked her what she thought about my needing a port. Would I possibly make it to next August without one? Her answer was blunt: No way. “We’re already up to your elbow; there isn’t anywhere to go from here. You’ll either get it now or get it later, so you might as well get it now and make good use of it.” She showed me the kind (from a shoebox of various models) that my oncologist likes to use. It looks like a doorbell button. It’s inserted under the skin – so just a bulge as long as it’s needed. Near the clavicle. Needles and tubes go easily in and out. No muss, no fuss.

I’m trying to schedule port surgery for November 19, so Doc can examine how it’s coming along on the 20th when we use it for the first time with the next round of Herceptin. I am trying to be courageous again.

My anemia improved; no more shots. So if my anemia’s no longer concerning, why am I so incredibly weak?

I don’t recommend trying this, but apparently sitting and lying down for the greater part of 2-3 months renders one quite incapable of walking more than a few steps.

I’m so determined now to get back to health that my mind is a little bit ahead of my body. Last night I wanted to begin my new walking regimen (Doc wants me to work up to 30 minutes of brisk walking daily by the time I’m back in three weeks), so Greg and I set out with the intent of going 10 minutes one direction and 10 minutes back. Shocking as it is, I quickly realized I had to reduce the goal to 10 minutes TOTAL – and even that was very slow and incredibly hard. I had no idea my muscles were so deconditioned. I am more determined than ever. My task this afternoon is to walk to Aldi and back.

(The following blog entry is about a woman I met in the next chemo chair yesterday who shares my particular long treatment program for the same diagnosis.)

Soldiers in the same battle

No two breast cancer stories are the same. No two treatment scenarios are the same. There are as many treatment plans as there are variables. You can’t compare one case with another. I suspect it’s that way with every kind of cancer, whether lung cancer, pancreatic or multiple myeloma. I don’t know, but I’ll never be tempted to compare one person’s stamina with another’s.

With last month being breast cancer awareness month, I felt bombarded with breast cancer stories. At the same time I was seeking conversation with other women with breast cancer in order to decide on my own options. But none of the women I read about or talked to shared my diagnosis. No one seemed to have “mastectomy with node involvement, Stage II invasive ductal carcinoma with hormone-receptive and HER2/neu positive cells.”

Then I happened upon Bonnie in the chair next to me yesterday. She had the same diagnosis, a month ahead of me. Found on routine mammogram, but since her mother had had breast cancer in her 70’s, she wasn’t as surprised as I was. She is about my size. About my age. She has the same oncologist. She was getting Taxotere and Cytoxan every two weeks, too – but she said she couldn’t go on after the fourth round. She felt too, too, awful.

I could have hugged her for sharing her misery! When I told her I had five rounds before I gave up (not to mention two root canals and a hospital stay), she gave me a look that said “you go, girl!” At last I didn’t feel like the biggest wimp in the pool of breast cancer babes!

So we commiserated about the length of our treatments compared to others’. We commiserated about the nasty side effects of Taxotere. We shared our fears about the future and what we’d do when/if the cancer comes back. We talked about how fortunate we were that we didn’t have young children to care for during chemo and that we had nice, supportive husbands. We talked about our abandoned gardens this year. We talked about our “lost summer of 2007.” And we didn’t care who heard us. It just bubbled to the surface.

And yet, she and I are now on slightly different paths. Because (?) Bonnie had only four full chemo treatments, Doc switched her from Taxotere to a less nasty chemo drug and put her on a longer schedule for completing it. (He suggested the same for me after my round 4, as I recall, but I opted to do round 5 instead to see how it went. I didn’t want to start something new and string it out even longer*.)

Undoubtedly, because we are both “Tuesday people” we will run into one another again. If not, I have her phone number in case we find more to commiserate about as we move into radiation and hormone therapy. What an instant bond of sisterhood with someone who knows. Of course I’m sorry Bonnie’s had the same rough time of it, but as long as we’re both in this game, I’m oh-so glad we met.

*Yesterday I got Doc to admit that 5 rounds of Taxotere every other week might indeed be just as effective as 6 rounds given every three weeks. This of course made me feel better and I think he gave me points for stubborn optimism.

I've misplaced my good attitude

*
If anyone asks me how it’s going, they’re likely to get a full-blown self-pitying saga complete with blubbering – or they’ll get “I don’t want to talk about it, let’s talk about you.”

Truth is, I'm pretty depressed. While I try to count my blessings (I’m eating well, walking around, still climbing the stairs, taking care of myself and doing the occasional laundry), I guess I had unreasonable expectations about getting well when I stopped chemo two weeks ago.

The first few days after the hospital showed hopeful improvement . . . the weight loss and diminished heart pounding when I climbed the stairs, for instance.

But then the “biting ants syndrome” in my legs returned and one thing’s led to another. (Last Tuesday, recall, my oncologist glibly diagnosed the itching as eczema and wrote me yet another prescription. I knew it wasn’t eczema and didn’t have it filled.)

Sitting or lying down for more than 15 minutes brings on the biting ants. This of course means reading, writing, or movie watching is done in 15- minute intervals. That’s not so bad during the day; there’s always something I can do around the house to keep me moving.

When it becomes a real problem is nighttime…sleeping. Having tried everything else, I’ve finally given in to a combination of pain pills and sleeping pills for a successful six hours of slumber each of the last two nights.

Unfortunately, I blame the pills for returning fluid retention – which for some reason is no longer relieved by water pills. Six of the fourteen pounds of water weight has returned.

Meanwhile, my now-puffy eyes continue to run, my nose bleeds, my hands feel as though they have no skin (they're so tender) and fingertips still threaten to shed their fingernails.

My hope is this will eventually just “go away” – but when I see lack of progress for a week, I naturally feel fearful. Beware of offering encouragement: I may bark at you.

I'm scheduled for IV antibodies (Herceptin for HER2/Neu cancer) on Tuesday, and of course I approach with trepidation. While it's not supposed to be as nasty as chemo, it still requires finding an IV vein and is preceded by two pre-meds to combat side effects, so how innocuous can it really be?

My venting is complete. I am going to try grocery shopping today. I know there are places to sit and rest along the way because I have often smiled kindly at little old men who rest upon their canes on those benches.

Into the Future

Despite a glorious 14-lb weight loss since starting diuretics, my condition seems to change hourly. By the time I think of writing, the prevailing side effect is replaced by some other concern. Nothing as bad as the 2-week toothache or last week’s meltdown, but nonetheless keeping me from normal activity.

Itching continues (my “biting ant syndrome”) and is bad enough to wake me in the night. Sleep still eludes me. Last night I had stabbing pain in one eye. The chemo-burned veins on the back of my hand that had been healed have decided to flare again. My eyes are mattering and tearing. My nose bleeds. My fingertips are tender and tingling. I have small cold sores in the corners of my mouth. The anemia still has me struggling with stairs – and while the weather beckons me to go for a walk, I’m afraid I may not make it back. I miss grocery shopping, but am too stubborn to use an electric cart.

Still, hope is on the way. I saw my oncologist yesterday in followup after the hospital. He wasn’t surprised when I said I was finished with chemo (I did 5 of 6), so we talked about treatments yet to come.

Another blood draw prompted a second injection for red blood cell production for anemia. He called my itching “eczema” and told me to use moisturizer; he wrote a prescription for corticosteroid cream, warning it may irritate my skin because of my current hypersensitivity – so I’m reluctant to try it. He said the itching is likely to continue for six months or more. Just call me Job.

He talked me into continuing Herceptin for now. This is the antibody I’ve already been getting along with chemo. Continuing means IV infusion every three weeks until August. He claims it’s highly effective in eliminating recurrence of my HER2/neu cancer cells. Supposedly it has few side effects (other than possible continued hair loss), so we shall see.

Continuing Herceptin brings up the issue of my veins cooperating with IV placement and fear of a PICC line or “port.” The PICC line is about a foot of tubing up the vein with the open end held in place by tape between infusions. It is often annoying and vulnerable because it’s in the crook of the elbow where there is a nice big vein. A port, on the other hand, would be surgically placed. While more convenient, port placement runs the risk of infection and complication. I am hoping Herceptin is as innocuous as promised and that having an IV every three weeks rather than every two weeks will give my veins more chance to recuperate and cooperate and thus avoid PICC lines and ports.

I need to make the radiation decision, to begin as soon as I commit. This is five days a week for six weeks. The common side effect is fatigue, which in many cases continues for a year after treatment. With my history of bad luck and fatigue, I am of course wary. The radiation oncologist wants to proceed because although my margins were clear after the second mastectomy, they were narrow; cancer cells may still be lurking in the nearby chest wall. I am in process of contacting women who’ve had radiation for breast cancer to learn about their experiences.

My cancer is also hormone-receptive, so treatment requires oral hormones to begin when I’m ready – and continue indefinitely. Because there are three different brands, Doc says surely we can find one that doesn’t give me intolerable side effects. He would like me to try these, at the very least. My low tolerance for drugs tells me my trial may be short-lived, but I’m willing to give it a whirl once I regain strength.

These decisions are difficult; I’ve lost a bit of faith in medical expertise and my body yearns for a chance to heal on its own. I am not so fearful of having a short life as I am of having it continually compromised by treatment-induced side effects.

Back in my recliner with laptop

I was discharged from the hospital yesterday afternoon. My oncologist studied my test results and visited with me mid-morning. I was relieved to hear my heart was doing okay (everyone seemed concerned about that). My blood pressure was back to normal. My blood panels were all as expected – except that my anemia had worsened notably in just two days. For that, I was given an injection to boost red blood cell counts.

The initial suspicion of pneumonia has now been reduced to “some fluid in the lungs” that isn’t terribly surprising considering the fluid retention everywhere else.

I went home with yet another prescription for super-duper antibiotics to cover whatever “may” be going on (doc is still suspicious that my tooth may be infected even though I have no pain) – and told to eat yogurt to keep good bacteria around. I also started diuretics this morning to help reduce the fluid swelling. I hope they work, because the swelling has actually made me uncomfortable. My torso is so tight it simply doesn’t want to conform to sitting up anymore! And my legs are not mine; I don’t know where mine went.

Of course with the diuretics there is a chance my blood pressure could plummet again, so Greg has graciously agreed to work at home for a few hours this morning until we see how I’m doing. When my pressure slipped to 72/55 in the ER the other night, I doubt I could have handled calling 911 on my own.

My greatest fear is whether I will get my strength back. I take the stairs slowly, like a tired old crone, and still my heart rate speeds up, my legs burn, and I’m panting by the time I reach the top.

Please be grateful for your healthy body. When everything is working as it should, it is a MIRACLE.

Adventure continues

Written early Thursday morning:

At first blush, Tuesday’s chemo went well and I went home feeling better than any of the other rounds.

I’d had a serious full-hour discussion with my oncologist before deciding to go ahead with chemo that day. He patiently and thoroughly explained his rationale for everything he was putting me through – and schmoozed me by saying he thought I had an awesome, realistic attitude. He also suggested we try eliminating dexamethasone – the steroid that keeps me from sleep and leaves me so hung over. With the new plan, I optimistically settled into my favorite chemo chair yet again.

All hell broke loose later that night.

By 11 p.m. I had shaking chills, 102.6 temperature, and itching from neck to toes that felt like I was covered in angry, biting ants. Needless to say, it was a long night with Greg making phone calls to the Cancer Center and waiting for call-backs from the oncologist on call who was apparently sleeping through his pages. At 3 a.m. we connected and headed for the ER.

After a few hours of head scratching by ER docs who quite likely dread having to see chemo patients, I was admitted to the cancer ward – primarily due to alarmingly low blood pressure, puzzlement about the fever, and suspicion of pneumonia. To me, however, the most pressing concern continued to be the god-awful itching!

Yesterday was a day of tests, IV antibiotics, and SIX different blood draws. Blood draws have become more and more difficult (and dreaded) as needles are limited to my right arm and I’m running out of veins that cooperate. My left arm’s not an option because lymph nodes have been removed.

All test results will be analyzed by my oncologist this morning – so nothing definitive until then. Of course I’ve heard hints of what may be going on, but I refuse to start worrying about any of them prematurely.

In retrospect, I regret accepting chemo round 5 – so round 6 is unlikely to happen. While there are apparently some chemo patients who weather this process without much ado, I am learning there are also plenty of us who give up. (This is something you don’t hear at the Cancer Center, but the cancer-ward nurses are refreshingly candid.)

And the beat goes on. La de da de da.

Return of the Tooth Pain

Were this a work of fiction, repetition alone would render it poor writing, indeed. But alas, reality can be painfully monotonous.

Pain flared again in my lower jaw Friday night, so the visit to Josh and Brenda’s was put off. Instead, we spent Saturday morning getting a complete blood count on the cancer floor at the hospital. (Sadly, the cancer ward was densely populated that morning; my blood draw was done in the hall.)

A few hours later we left with the results: No. The tooth should not be pulled until chemo is complete and blood counts return to normal. Apparently I am too compromised to risk possible infection from extraction, but not too compromised to risk infection from a bad tooth. No one managed to address that one to our satisfaction.

By noon, I was again in the endodontist’s chair for another go at a root canal – deeper and wider than what had been done five days earlier. Again, the tooth was packed with an even stronger medicine and temporarily closed. As of this writing, the pain has settled down. Again, I have to hope this “sticks” for at least a month.

I am sorely tempted to switch to fiction from here on out, as changes to my body that have cropped up this morning suggest truth truly does bite and makes for a depressing read. More on this later.