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.

Sometimes I feel like I am onstage with no script.

The past couple of days have seen me further immersed in a world for which I am totally unprepared.

First, the good news: the second biopsy found that the two additional suspicious areas that showed up on the MRI are not cancer—just some benign lumps. 

My doctor has advised pre-operative chemotherapy that could reduce the size of the cancerous tumor and keep the cancer from spreading to any more lymph nodes. That would be good.

Then, the "fun" began: trying to schedule everything,

I was supposed to have a chemo port implanted tomorrow, which will save me from having the pain and complications of having drugs injected into my arms. 

But I have come down with a bad cold. Aside from the fact that I feel really crappy, there is some risk of infection since the procedure involves an incision. So I rescheduled the procedure for next Monday.

Unfortunately, this complicated the scheduling of my chemo and doctor appointments. The details are too tedious to go into here, but what it amounts to is that I have conversations lke this:

Scheduler: I need to know if you want to start your chemo treatments the same week as the port is implanted.

Me: Is that a good idea?

Scheduler: That's up to you. 

Me: OK. (Pause to wonder if I can get a medical degree in the next ten seconds) Assuming we want to get this started, can I do it on Wednesday?

Scheduler:  Yes. we have an appointment open that day.

Me: Good. I'll take it. 

Scheduler: That would be at our Adventist office.

Me: Wait. That is not a good location for me, and I just had an orientation and tour of the Providence office. Can I just start treatment at the Providence office, which is much more convenient for me?

Scheduler: Yes, but you would have to wait until the following Monday.

Me: Is that wise? Am I risking my life by delaying the start?

Scheduler: I can't answer that. It's up to you.

Me: How can I make a decision if I don't know what it means?

Scheduler: I coud ask the doctor.

Me: Good idea!

Scheduler: She won't be in the office again until Friday.

The long and short of it is that no chemo treatments have been scheduled as yet, so I can't tell any of the friends who have generously offered to help with transportation where or when I need transport.

And...

My husband and I had a lengthy meeting yesterday with a nurse in the oncology practice who went over what they are going to do to me in chemotherapy. It reminded me of those TV commercials for various drugs where they show you happy people having a lovely time while the voiceover recites a long list of horrid side effects. 

For those who want to get freaked out, you can Google the treatment. It is four sessions of AC (doxorubicin + cyclophosphamide) followed by four sessions of Paclitaxel. 

The treatment also includes heavy-duty anti-nausea drugs and another drug to help my bone marrow produce white blood cells. 

And...

There is a chance that the chemo can damage my heart, so today I had an echocardiogram to assess my heart's health. I will have another one every six weeks to see if there are any changes. This is just lovely. I could survive cancer and die because the treatment damaged my heart.

And...

I have been told that i will lose all my hair; and was advised to have a wig ready. So today I picked out a wig that looks somewhat similar to my own hair. It was free, through a program backed by the American Cancer Society. (Yay!) So if you see me around town in a month or so, please don't comment on my new hairdo.

I could have skipped the trip to the hair stylist

Today I learned that I have 16 weeks of pre-surgery chemotherapy ahead of me.

But first, I have to have an echocardiogram to check if my heart can handle it ... and then I have to have a "port" inserted under my skin to enable injection of chemicals.

Because of the treatment, my hair will fall out. I may puke. I will be exhausted.

I will get more details at tomorrow's "chemo class," after which I get to meet with a financial person to figure out if we are going to be impoverished by this whole thing.

So, no surgery right away, but plenty to keep me on the edge of panic right into 2017.

Sometimes the second time around is better

After living in fear of having a second ultrasound biopsy, it turned out to be so much less awful than the first one, despite the basic procedure being the same.

I had the good fortune to have a radiologist who actually listened to me and was very careful about how he administered the local anesthetic. This time, no searing pain! Less bleeding, too.

Although I will now have even more bruising, at least I was not traumatized by the procedure. It wasn't as hard on my husband, either, who was there with me both times.

So the two additional "suspicious" areas have now been biopsied and maybe the results will get to my oncologist before my Monday appointment.

An aside: I was told that if the areas in question did not show up well on the ultrasound, I would have to have an MRI biopsy. I cannot imagine how that would even be done with the patient lying face-down in an enclosed tube. I had this vision of a doctor sliding underneath on one of those creepers that mechanics use to work under a car. 

At any rate, I went home, slept for a few hours, and am now looking forward to a weekend respite before getting back on the medical treadmill. Normally, because David and I are both self-employed, we don't really have "weekends." This will be an exception.

Many people have offered help, and I will gladly accept it, when I find out what I need.

I am struck by how many women I know have been on this journey before me. Thank you so much for your words of encouragement!

Breast cancer research seems to have been going on my entire life, yet we still don't know how to prevent the disease itself. At least the treatment and survival rate are improving.

Not again!

Yesterday, I had what was supposed to be my last medical test this week ... an MRI. It was a rather odd experience. I was face-down for the procedure, which meant that my claustrophobia did not kick in because I could not see that I was inside  a tube. Everyone comments on the awful banging sound that the machine makes, but it is mostly like being at a bus stop while someone with a jackhammer works on the street near you. (I had headphones on, with classical music; but I really couldn't hear much of the music.)

After that, I was really looking forward to a few days with no trips to the various hospital clinics and no one sticking any needles into me.

Unfortunately, the MRI turned up more "suspicious" areas, so I have to go in for a second biopsy tomorrow morning. This has me pretty upset, because the first one was definitely an awful experience.

It did not help that the radiologist failed to tell my doctor that no one had "informed the patient," so the first thing I got was a phone message from a scheduler telling me I have a biopsy at 8:00 tomorrow morning. My reaction was somewhere between WTF!? and NOOOO!!

Of course, I called back immediately, but the scheduler had no information about why I was supposed to have a second biopsy. And everyone else was at lunch. I pretty much lost it at that point, and I think that I pushed the poor woman way beyond her pay grade.

My doctor had the good grace to call shortly afterward and apologize for the lack of explanation. She is all for more getting data on the extent of the cancer, and I can see that is quite rational. Unfortunately, I am not feeling terribly rational.

I am not a stoic person. If the diagnostic tests are this stressful, how am I going to get through the actual treatment?

Oh, crap

A year ago, I had the dubious distinction of being the first pedestrian on the new Tillikum Crossing bridge who was struck by a bicyclist who ran a red light. I suffered four broken ribs, a separated shoulder, and a concussion. Recovery stretched over months, and I still have some lingering problems with vertigo and shoulder pain. But I thought the worst was behind me.

Wrong. I am back on the medical-system treadmill.

A couple of weeks ago, I was diagnosed with breast cancer. My reaction: "Oh, crap."

I am undergoing a lot of tests to determine its extent, and based on the results, my oncologist will recommend the best course of treatment. 

So far, here is what I know:

• The cancer the biopsy found was Type IIa, Grade 2
• There are cancer cells in the lymph node that was biopsied
• The tumor marker is 27 (good)
• her-2 status is negative (good)
• The hormone receptor status is positive (good)
• Cancer-cell growth rate is 14% (not the best, but not horrible)
• I have low iron
• I am allergic to Tegaderm (a transparent medical dressing used to protect incisions)

I'm no doctor, so I can't explain all of this, but those who want to know more can research the terms. I'm limiting my own research until I have reviewed the test results with the oncologist and know exactly what I am dealing with. I have been given tons of reading material, but a lot of it won't apply to me, so I'm delving into it only sparingly.

I am canceling a lot of activities, generally "clearing the decks for action," and concentrating on building physical and spiritual strength.

This blog will be where I post general updates on my condition for those who want to follow my progress. I would much rather be writing about something more cheerful, but that doesn't seem to be in the cards.