A bit of a setback

Today I went in for blood chemistry analysis, a consultation with the oncologist, and a chemo treatment.

After looking at this morning's blood-test results, the doctor canceled the chemo treatment. My white blood count is too low and more chemotherapy now would put me into the dangerous range and probably send me to the hospital. With neutropenia even normal bacteria in one's mouth or digestive tract can cause serious infections.   

Whoops. Don't want that!

Of course, I wanted to know what caused this. White blood cells are produced in the bone marrow. Typically, white blood cell production decreases after a chemotherapy infusion and rebounds before the next treatment. That did not happen this time, with the result that my white-blood-cell count is too low to effectively fight infection. Evidently this is not unusual, but it throws a monkey wrench into my treatment plan.

Chemotherapy has now been postponed until next week, assuming the next blood test looks better. 

(Have I said how much I hate having blood drawn? I asked if the staff if they are feeding vampire bats in the basement. I think they have heard that more than once.)

During this next week, the hope is that my bone marrow will start cranking out white blood cells. The doctor said it is just something that needs more time. Nothing much to be done on my part other than to continue with healthy food and regular exercise, wash my hands a lot, and and avoid people with colds.

Ironically, I have been feeling OK, except for my usual springtime allergy that has me sneezing and sniffling. I have managed to get out to walk at least 30 minutes each day (except for one day when the rain never let up) and I have been getting enough sleep. So it was a surprise to be told that I am once again experiencing a side effect that I encountered back when I had my first chemo treatment. I am hoping I won't end up in the ER again, as I did last fall when I developed a fever. 

Adding alternative medicine to the mix

This past week, I met with a naturopath to discuss my overall health and ways to help me deal with not only cancer, but cancer treatment. 

It was a very different experience from my usual medical encounters. The exam room was pleasant and non-clinical. There was a small teddy bear sitting on a table, a top hat with a stuffed rabbit on the doctor's desk,  and instead of one of those leather and metal contraptions they make patients sit on, there was a daybed with a patchwork cover. The doctor offered me some dark chocolate and asked me a lot of questions about my life and activities, state of mind, and experiences with chemo side effects.

He told me to stick with the glutamine that I take to mitigate mouth sores and to be sure to take 15 grams a day. Because I often have trouble remembering to take five grams three times a day, he told me to just take the 15 grams all at once—perhaps mixing the glutamine powder with yogurt or apple sauce. That has sure made it easier to get my daily dose.

He also told me I need to take a B vitamin supplement, which will combat the neuropathy I am still dealing with and help with my energy level. So I've added that to my daily collection of nostrums.

I also learned that women with breast cancer who exercise every day reduce the chance of recurrence by 50%. Exercise has been a problem for me due to low energy levels and lack of good weather for walking. After my latest meeting with my oncologist, who also encouraged exercise, I had good intentions. But I then had two days of nausea and extreme fatigue and we had a lot if rainy weather, so I lost my resolve. But that 50% number is quite a motivator, so for the past few days I have made it a point to get out and walk for 30 minutes. 

Today I discovered that the walk to Starbucks is 15 minutes each way. 

One of the challenges I have is getting enough sleep. I have been having nightmares every night. There are two recurring themes: I am either desperately trying to escape someone who wants to kill me or I am trying to leave on a trip, but can't manage the logistics… can't get packed, miss my plane, ship leaves without me, etc. 

In these dreams, I am overwhelmed with fear, anger, and frustration. It doesn't take a psychiatrist to figure out that the nightmares are related to my cancer.

I often wake up in the night with a pounding heart and a sense of bad chemicals flooding my body. Getting back to sleep is really difficult. The doctor suggested taking melatonin before bed and reemphasized exercise. Sure hope this works, because lack of sleep is a bad thing when dealing with cancer. 

I'll be seeing the naturopath again in a few weeks and will be compiling more questions to ask about diet and nutrition. People suggest various things to me, but without someone looking at the overall picture, it is impossible to know how these things might interact. 

By the way, I was surprised to learn that Medicare doesn't cover naturopathic medicine. That is a huge barrier for many people who could benefit greatly from supplementing traditional medicine with a more a holistic approach to healing.

There is a lot more to the body than tumors.

The slog continues

I had another chemotherapy treatment this past Tuesday, as well as blood tests and a meeting with my oncologist. My white-blood-cell count was low three weeks ago, so my treatment was dialed back a bit; but my blood count is now at the low end of normal. 

In general, I have been finding this regimen a lot easier in the side-effects department; so I was disappointed to find myself nauseated and exhausted all day Wednesday, and tired and slightly queasy on Thursday and Friday.

I am still experiencing some neuropathy, but a lot less now; so I take medication for it usually only once a day. 

My doctor suggested I add back some of my usual activities, as a way of combatting the depression I continue to experience as this process drags on. I did make it to the art museum on Thursday night, and it finally stopped raining, so my husband and I spent some time in our local park on Friday and I did a bit of cleanup of our balcony garden. I hope to get down to our building's gym in the next few days to start getting some exercise.

My hair is slowly growing back. It is maybe 1/4 inch long now. So instead of something from the Zombie Apocalypse, I look like a Marine recruit.

It turns out that the usual cycle on this drug combination is six treatments, three weeks apart; so if I go the whole course, that takes the process into May before surgery will be scheduled. 

Next week, I have an appointment with a naturopath to discuss other ways to deal with this cancer. 

Feeling fuzzy

My hair has started to grow back! It's just fuzz now, but the oncologist thinks it's likely it will continue to grow, because many women on CMF (cyclophosphamide, methotrexate, and fluorouracil) don't lose their hair. I hope she is right. I would dearly love to stop looking like someone I don't recognize.

I had my second round of CMF chemo today and met with my oncologist. She decided to reduce my chemo dosage by 10%, because my white-blood-cell count has fallen. It's just below the normal range; and we don't want it to go any lower and risk another bout of neutropenic fever. As nice as the folks are at the Providence ER, I am not eager for a second visit.

I will continue to have chemo every three weeks for a while. Another MRI down the road will determine if the tumors have decreased to the point where surgery is likely to be most successful. In dealing with breast tumors, getting "clean margins" is the goal. Unfortunately, about 30% of patients have to go back for a second surgery because some cancer cells get missed. 

The Wall Street Journal ran an article recently about a new tool, MarginProbe, which detects cancer cells lingering around the edges of tumors. Its use significantly improves surgical outcome. It is not in use here as of yet, and as usual the insurance companies do not want to pay for it—which makes no sense because its $1000 price tag is a fraction of what a second surgery costs. Frankly, I'd rather pay the $1000 myself than have to undergo a second surgery.

The chemical adventure continues

On January 23 I had my first infusion of the chemo "cocktail" my doctor switched me to, and have experienced no new side effects. In fact, side effects in general have been pretty subdued.

I have noticed, however,  that my eyebrows now seem to be departing for an unknown destination.

This whole hair-loss thing has been a lot more upsetting than I thought it might be. I have never spent a lot of time or energy on my hair, so it's not like I saw it as my "crowning glory." But gol-durn it, it helped keep my head warm! Now I have to always wear head scarves and/or a wig and even have to wear a cap at night. And catching sight of myself in the bathroom mirror is disconcerting. I have a small head and am a good 25 pounds overweight, so the effect is to see myself looking like a bowling pin. It is not an attractive sight.

And on the subject… I found out that Taxotere, the medication I decided against, is the subject of a lawsuit because it caused permanent hair loss.

Of course, I am hoping that the medications I am on will actually do something to further reduce the tumors. If I am not having horrible side effects, is the drug working?

Anyway, I will have three more infusions, three weeks apart, which puts me at the end of March when I will most likely be referred to a surgeon.

Chemo to ride again

I had my second MRI on January 18, and the report says the tumor has shrunk 59%, which is a suspiciously precise number, but basically it means the tumor is half the size it was. Some cancer cells are evidently still showing up, though. 

My oncologist wants to see more regression before scheduling surgery.

So next week I start chemotherapy again. I had two choices. CMF (cyclophosphamide, methotrexate, and fluorouracil) is an older and a somewhat less effective regimen, but it also has fewer side effects than the other choice (Taxotere). 

And since I am the Queen of Side Effects we agreed on CMF. 

Chemo is a drag, and it would be really good to be done with it. However, the good news is that the cancer is retreating.

Shifting gears

I saw my oncologist this morning. She agreed that I should not get more Taxol, given the quick onset and severity of my peripheral neuropathy. She suggested I increase my dose of gabapentin to deal with the remaining tingling and numbnesss that I am still experiencing. 

There is a chance that the neuropathy will gradually fade, rather than be permanent. I sure hope so, because walking is difficult when it feels like one's shoes are two sizes too small.

Recently, I had a conversation with the oncology practice's dietician about adding glutamine to my diet. (It's an amino acid.) It has helped mitigate some of the other side effects I have been experiencing, including sores in my mouth and throat, and constantly watering eyes.

The plan now is to have a second MRI next week to assess the size of the tumor. If it has shrunk significantly, I will meet with a surgeon and schedule breast surgery. 

If the tumor has not receded significantly, we will try another chemotherapy drug. 

Not too concerned about the MRI. It's noisy, but not worse than being near a street crew using a jackhammer. The biggest challenge is getting up onto the table. Whoever designed the equipment did not take into account that some patients are not young and agile!

Medical treadmill disrupted due to weather

This past Sunday evening, David and I were debating the safest way to get to my Monday-morning clinic appointment, given the icy conditions on Portland's streets. Then I got a message that my appointment was cancelled. 

I was supposed to have blood tests, a consultation with my doctor, and maybe a chemo session, depending on what the doctor recommended, given my problems with peripheral neuropathy

As of now, I have an appointment with her on January 13. Obviously, there are some decisions to be made … 

• More chemo with the same drug but at a different strength? 
• More chemo with a different drug? 
• End chemo and schedule surgery?  
• Consult a shaman?

I just know I don't want the neuropathy to get worse. Right now, the pain is manageable with the gabapentin, but the numbness in my hands and feet is annoying as heck.

Meanwhile it is now snowing heavily.

My nervous system is nervous

After suffering with peripheral neuropathy for a couple of days, I finally called the oncology practice (which was already closed Friday for the holiday) and talked to the doctor on call. He sent in a prescription for gabopentin, which has really helped with the nerve pain. However, I am still experiencing numbness in my feet and hands. 

Walking is weird, as if my shoes are too tight.

And today, as I was paying bills I wondered if the bank was going to reject my signature, because writing checks with a pen was a bit of a challenge. 

Later, we were having dinner at an Asian restaurant and I discovered that manipulating chopsticks was also not easy with my insensitive fingers.  

Well, shoot, this sucks.

Clearly, the Taxol is a problem for me. I will be discussing this with my regular oncologist, of course, and I expect that she will alter the treatment plan. 

And yet another side effect

I am now experiencing chemotherapy-induced peripheral neuropathy (CIPN). My feet and legs feel like they have been set on fire. Walking is difficult. Sleep is elusive.

Supposedly, this condition affects 30% to 40% of patients undergoing chemotherapy ... so of course I am in that minority. Lucky me.

So far, the only thing that helps is taking a dose of Vicodin, which takes the pain down a few levels ... but I am very worried that this condition is going to get worse as treatment progresses, or that I am going to get addicted to painkillers.

It's weird to be undergoing medical treatment that makes me feel worse instead of better.

Asleep at the wheel

I had my fifth chemotherapy treatment Monday, December 19: this one with a different drug: Paclitaxel (aka Taxol). I slept through most of it.

Beforehand, David and I had an hour with a nurse-educator who answered a lot of questions for us about this drug and about the overall scope of the treatment planned: three more does of Paclitaxel over the course of six-seven weeks, another MRI to determine the size and the shape of the tumors (Which we hope will have shrunk), surgery (most likely a lumpectomy and removal of the affected lymph node), targeted radiation, and a long-term course of an estrogen-suppressing drug. Looks like I will be on this treadmill for a long time.

The treatment itself did not start off well. When the technician inserted the needle apparatus into my port, it hurt a lot...which was something new. The stinging persisted and there was talk of doing a reinsert, which was just about the last thing I wanted to hear. The apparatus was functioning OK, however, and the theory seemed to be that some of the antiseptic applied topically had gotten inside. A saline flush mitigated the problem. 

By that time, I was not a happy camper, and I was given some Valium...evidently a lot of Valium, because I fell asleep, and stayed asleep throughout the rest of the process. (David even left for a while to go home and walk Pixie.) 

After more than five hours at the clinic, I was released to go home. I was still very loopy, and David tells me I was saying some odd things. That Valium must have indeed been a heavy dose! 

Once home, I went to bed and back to sleep. David woke me up in the evening to have some lentil soup, and I fell asleep again. I woke up around 10:00 p.m., thinking it was morning. I had a protein shake, and right now I feel pretty good with no nausea. Let's hope things stay that way.

Final round of AC

I had my fourth round of chemo. I also met with my doctor yesterday to discuss my chemo side-effect symptoms and the next step of treatment.

One troubling side effect lately has been an almost continuously running nose and eyes. I look like I am crying much of the time. There is nothing to be done about that, except wait it out. 

The most persistent side effect is chemo anemia, which explains why I am so tired all the time, and often feeling cold. The doc said it’s like I just donated two pints of blood. It's frustrating to be so unable to do anything at all physically demanding. I can still manage to pick up my six-pound dog Pixie, which is a good thing because sometimes on her walks she sits herself down and looks at me as if to say, "You don't actually expect me to keep moving, do you?"

My next round of chemo is with a different drug: Paclitaxel (Taxol). It has a lot of the same side effects plus the possibility of nerve damage in the hands… and some people have an allergic reaction to it. Well, you can imagine that I was not happy about hearing that. Let's hope I am not one of the statistics.

I’ve been meditating every morning and my ability to focus on specific tasks has improved. I am keeping up with my editing work, which helps me feel less like a slug.

Can’t say that my general mental attitude is great, though. I just hate feeling under the weather and knowing that this is going to continue for months. 

Hard to focus on the "big picture"

I had my third pre-operative chemo treatment this past Monday and the main side effect has been fatigue. I walk the dog a couple of blocks and feel like I have just hiked five miles. I am not used to being so physically drained, and I can't say that I am handling it with good grace.

Truth be told, I'm discouraged and am finding it hard to focus on the long-range goal of killing off the cancer cells before surgery. Objectively, I know that this whole process is pretty much going to take a year. Emotionally, I don't feel much like being a good sport about it.

My lack of focus is also a problem when it comes to accomplishing anything substantive. I have some big projects on my "to-do" list, such as purging and organizing 60 years worth of photos and compiling decades worth of personal essays into a comprehensive whole—but I realize that I simply do not have the energy to tackle those projects.

I did organize my socks.

Thinking about how to improve my focus, I realize that I should not have left my meditation practice slide. When I was meditating regularly, I was much more productive and focused. So, I've decided to make mediation a priority again. Everyone tells me it's a good tool to use in the treatment of cancer, too; so there is plenty of incentive to get my act together.

Hard to swallow

This week, the chemotherapy side effect to plague me is sore spots in my mouth and throat. Chewing and swallowing regular food has been too difficult, so I have switched to liquid and pureed food.

Thank goodness for my Vitamix blender! That thing can liquefy just about anything, and lets me have all the full benefit of nutrients and fiber. This morning, I combined grape juice, banana, kale, carrot, pumpkin butter, and ice. It was a delicious smoothie, and the cold felt good going down.

I've also discovered that ice cream and Starbucks Frappuccinos go down nicely... if not nutritiously.

The condition seems to be improving, but I have my third chemo treatment in a few days, so who knows?

Looking at the list of possible side effects I was given, I see that there are still more lurking in the shadows.

Hair today...gone tomorrow

I knew I was going to lose my hair because of the chemotherapy. I intended to get a very, very short haircut to minimize the effect, but I delayed too long and now I am dealing with the experience of losing 3-inch long hairs everywhere.

Not to put too fine a point on it, I am shedding like a malemute in June; and it's pretty darn annoying.

I'll be working on my laptop, only to look down and see my keyboard littered with random shafts. I take off a sweater and then have to spend several minutes working on it with a clothes brush.

And nobody told me this was going to hurt! My scalp feels like it's badly sunburned. This makes it very challenging to lay my head on a pillow, which of course makes it very hard to sleep.

Checking on the Internet—the source of all wisdom—I find that scalp pain is a fairly common experience for chemo patients. The good news seems to be that the pain will eventually stop, when the hair has left for good.

In the meantime, I need to haul out the vacuum cleaner.

Round Two

First of all, thanks for all the support and encouragement I have received. A big thanks to the Women of Reform Judaism, who included me in their prayer for healing at our regional convention. It does help to know that I have all of you rooting for me!

Following my visit to the ER last weekend, and getting some antibiotics, my temperature returned to normal. A blood test yesterday confirmed that my white blood cells have regenerated into the normal range. Just in case they drop again and I have another bout of neutropenic fever, my doctor called in a prescription for the same antibiotic, to have on hand. 

I had my second chemotherapy treatment yesterday. The treatment room was completely full of patients this time, and we range in age from young adults to folks my age and older. This really brings home how pervasive cancer is. There is a level of camaraderie among the patients, and almost everyone has a "chemo buddy" or two. David was mine, and he brought along his laptop and got some work done when he wasn't fetching juice or snacks for me. Everything went smoothly.  I once again have a little device attached to my body that will deliver a dose of Neulasta this afternoon, to encourage white blood cell generation.

I got lots of sleep, and feel OK today. This time around, I made sure I started the anti-nausea pills earlier, and have not had any stomach upset. So far so good.

I had been warned that I would lose my hair, so it's no surprise that I have started shedding, giving our dog some competition.

I made a point of looking at the various types of headgear the women in the treatment room were wearing, and there are certainly a lot of options.

I went online to look up "chemo scarves," and I must say, the choices are overwhelming...another indication of just how many women have cancer. Of course, you know how much I love hats, so it was a bit hard to limit myself to ordering just a couple of pre-tied head wraps. I already have a wig, thanks to the Cancer Society, but I doubt that I will want to wear it most of the time. Some of the hats I already own will work, too.

I have experienced some other side effects of the chemo, and I have quite an array of medications at hand. As I mentioned to the doctor, it's ironic that every one of them is to deal with a side effect of the cancer treatment, not the cancer itself. 

Saturday Night Fever

I had been advised to report any fever that was over 100.5 degrees. 

I had been running a fever since Friday night, and by 11:30 Saturday night, it was up to 101.7. 

I had a couple of telephone consultations with the doctor on call from the oncology practice, and to make a long story short, he told me to go the ER at Providence Medical Center. It was a fairly quiet night there, and I was seen almost immediately. I had a lot of tests at the hospital and although there was no systemic infection found, I do have neutropenia: my white blood-cell count is quite low. 

I was given intravenous pain medication (I was also experiencing some pain at the tumor site.), fluids, and an antibiotic, all of which took a long time. David was there for the whole dreary experience. He spent some time reading a book, while I found myself watching, among other things, a 30-minute vacuum-cleaner infomercial on TV. I found myself wondering how many people are inspired to call the 800 number at 3:30 a.m. to take advantage of the 40% discount and free shipping. 

There was some discussion about keeping me at the hospital, but the doctors decided to send me home.

We finally left the hospital at 4:30 a.m. 

After a few hours sleep, David went to the pharmacy to get my prescription filled for the antibiotic pills which I am to take for the next week.

Not a great weekend for either of us. 

Treatment Number One

Today I had my first chemo treatment. One of the drugs they gave me was for anxiety, thank heaven, because I really wanted to be somewhere else. 

A couple more drugs were for nausea, and then of course I got the actual cancer-fighting drugs. 

The entire session lasted about 2 hours, with the various drugs inserted through the IV port. Mostly, it was not uncomfortable, just a twinge or two early in the process. David was able to stay with me, and it was definitely nice to have him there. There were other patients in the large room, and as she was leaving one woman stopped to offer some words of encouragement. She said that soon I would be the one reassuring new patients.

Before I left, a little device was attached to the back of my arm that tomorrow afternoon will automatically administer a dose of a drug called Neulasta, which stimulates the production of white blood cells.

I have been warned that I am going to feel even more tired, probably at my worst on Wednesday. I am hoping the nausea will not be a major issue. The doctor gave me meds for that, if and when I start to feel queasy.

The port in my storm

I now have a "port" implanted below my collarbone. It connects via a long catheter into a large vein that will be able to handle the chemotherapy drugs better than the veins in my arms could.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

I have to admit that  I was freaked out by the anticipation of the surgery. It did not help that they had me come to the hospital at 10 on Monday, but the surgery was not scheduled until one.

After the ramadulla of inserting an IV—one of the things I truly hate—taking blood pressure and blood samples, I was resigned to waiting around in my cubicle, clad in my stunning hospital gown and bright-green non-slip socks.

However, after I talked to the surgeon, he decided to take me to surgery earlier. 

What a weird place an operating room is! I felt I had been abducted by aliens and taken into the mother ship to be subjected to strange experiments. Although each person in the room was very nice, very positive, and introduced him/herself and what role each would play, I was still really scared.

The injection of Lidocaine into the first incision site did nothing to decrease my anxiety, so the surgical team increased the sedation being administered via the IV. This was a very good idea.

I conked out, and woke up back in my cubicle with a big bandage on my chest. I had no nausea and was hungry, having had no food or water since 6:40 a.m., so a very nice nurse rustled up a tuna-salad sandwich for me. And then: escape!

I have been pretty sore at the incision sites and now have a lump where the port is placed under my skin, but I have been staying home the past couple of days, resting, catching up on my reading ... and even getting some work done Wednesday.

Next comes my first chemotherapy on the 24th. It's rather sobering to realize that everything I have been through so far is only preparation for the actual treatment of the cancer.

Briefly off the treadmill

After hanging around medical facilities for three weeks, I came down with a bad cold. While it has been unpleasant, as all colds are, it has forced a temporary halt to the cancer treadmill.

My surgery to implant a chemotherapy port has been rescheduled for Monday, and my chemotherapy treatments will begin the following Monday.

After getting some much-needed rest yesterday, I am feeling better today.

I have been thinking about the way injury, illness, and age require one to constantly redefine the concept of "myself." When we say, "I don't feel like myself," it may mean be a temporary condition—but I am learning that I am no longer the self who was younger, healthier, more energetic, and outwardly focused.

This doesn't mean abandoning the ship of life; it just means rearranging the deck chairs.