No PICC, no port, no chemo

"Just a procedure," I said in my last post about the PICC line (peripherally inserted central catheter). No, not quite.

Things need to be changed about how procedures are done. What I experienced is probably not uncommon and unfair to the patient.

First, I really wasn't given much understanding of what the procedure would be. I was thinking simple IV, shouldn't take even an hour. No, says the nurse, this is not an easy procedure, and it often takes over 90 minutes. So, I arrive unprepared and am now disconcerted.

Second, they take the opportunity at the point you are sitting in the procedure room to go over all the possible bad things that could happen and now please sign that you want us to go ahead. So, now I have a full understanding that they could put the wire that threads the tube up into my brain, or they could go too far and put it into my heart, or it could puncture the vein wall. Not exactly reassuring, actually rather scary. But by this time you are already in the room, even undressed. They should do that before, maybe when you are taken in for the sign-in process when you first arrive. Oh, but that's right, during the sign-in they are only concerned with how you are going to pay. "Would you like to pay something on this account right now?" No, I'd like to see if I'm alive after the procedure before I pay for it, thanks.

Third, it is apparent from early on that the nurse who is doing this procedure has either never done it before, or at least never done it in this hospital. There is a second nurse and they are discussing everything. "OK, how are you going to make a sterile area?" "First you should do these things before you put on your sterile gloves." "OK, I have to do that for you because remember you are now sterile and can't touch those things."

And fourth, the ultrasound equipment they have to use to guide the large needle into the vein is not working well enough for them to be able to see what they are doing. The image is grainy and dark, only slightly differentiated between flesh and veins. They are complaining about "this old equipment" and how the other one is much better but they don't have that one. Basically, they are doing this vein-threading procedure in the dark. Literally, because they turn off the lights so there is more contrast on the screen.

What does this all add up to? Three hours of me lying awake on a table with my arm outstretched, listening to the nurses' crosstalk: "Where is your needle?" "I don't know, I can't tell." "Are you above the vein or below it?" "I'm not sure. I think above it." "Well, then push it in further." "Still nothing." "OK, maybe you've gone all the way through; pull it out some." "Angle your needle to the right(left/up/down) -- no, the other way." "I think I'm into the vein but I can't extend the wire." "Push harder, but not too hard." "No, can't do it." "I guess you better pull it out and start over."

On and on it goes. Trying other places on the arm. Giving up the sterile environment so they can get the better ultrasound from the Emergency Room and give me a break to get the blood flowing in my arm again. During all this the new nurse is persevering. Valiant of her; extremely hard on her patient. Why don't they let the new person take one crack at it, and if they can't do it right away, then call in the pro? Why didn't they give me free Valium if there was going to be a new nurse who wasn't sure what she was doing? Shouldn't I get a discount, like you do when you go to a barbering college to let the new trainees gain experience on you?

Eventually they decide that my veins are what is really giving them the trouble. Although they can't really see what's going on, they suspect that my veins are closing down as soon as they get the needle into them, so they can't insert the wire that will guide the tube. My whole body is reacting negatively to all the stress they have put me under. I have already noticed the big sighs that I can't control; that I am trying to consciously relax my shoulders and arms but keep finding them tensed up again.

Do I want to give it one last try with the department head who is an expert? No, I wanted him after the first failed attempt -- two hours ago. Now I only want to go home and collapse. I'd drink heavily, but for the Flagyl antibiotic that prevents the body from properly absorbing/breaking down/disposing of the alcohol, creating a reaction that apparently resembles that of Antibuse.

So, now what? I still have an appointment with the medical oncologist to discuss the chemo treatment, examine the breast to see if she thinks I'm physically able to go ahead. Then I will have to either get a port placed under my chest skin by my surgeon (which I am now hoping for) or another try at a PICC line.

I will demand Valium. I will demand the expert.

Chemo put off again

Since I haven't been in to see the chemo oncologist ("medical oncologist"), I'm not comfortable starting right off Monday morning, Nov 30. I still have swelling and pinkness -- not as red as it was, and not uncomfortable. But I still want her to see it and make the pronouncement "Yes, I think we can go with that."

The surgeon doesn't feel confident about putting in a port with the potential of lingering infection, so he's going to put in a PICC ( peripherally inserted central catheter) line. This is like a long IV that goes into a vein near the elbow, up the vein in the arm, and around to the big vein in your chest, right before your heart. The port is essentially the same thing only it is under the skin on your chest, a couple inches above a bra line. I saw a woman's port scar today, so I was pretty happy with the change to the PICC line. That happens this Wednesday. It's just a procedure, so no anethesia, no need for special washing, no need to find someone to drive me there and back.

Originally they thought perhaps they'd use the PICC line for the first, maybe second treatment and then switch to a port. But I'm thinking I may be happy with the line. I just up and ordered a water proof cover for it, so I could take showers with it in. Also because I'm taking a "before chemo" break to drive up to Glenwood Springs and meet some old friends for the day on Saturday.

Boy, count your blessings, you 21st century folks! I have not been able to take a shower for most of the last 3 months! A luxury of life that one can easily take for granted. This Thanksgiving say a blessing on your shower!

Insurance, money and the state of denial

Generally I get along pretty well with this whole cancer thing by utilizing a strong case of denial. I deny that my cancer will be "bad," I deny that I will have trouble paying for this medical care, I deny that I will use up all the savings I've been hoping will hold me until I get an actual job, etc., etc. I seem to have a strong ability to deny things, so I guess that's a good thing.

I have been dreading calling my insurance company, and have been letting the bills pile up. I paid some of the early, smaller ones, because I knew that I would have to pay my $5000 high deductible insurance. I have an Health Savings Account (HSA) with almost that amount in it. But these were huge, scary bills.

But today I got good news! I finally called my insurance company. BTW, I have been extremely happy with my Aetna "Essential Premier Health Insurance" offered through AARP. Less than $300/month, even for the 3 of us! So, I called them and talked to a wonderful, helpful woman who told me that several of those bills had already been paid in full by Aetna, and confirmed the amounts I had left to pay on my $5000 deductible. So, that took a big mental weight off my mind.

But, I do recommend denial. Highly useful. "Delusional... you say that likes it's a bad thing."

P.S. HSAs are fabulous, people! You put in pre-tax dollars, they earn interest, I was able to get matching money from my college when I was employed to the tune of $180/month. I accumulated $5K in 2 years, almost the max. The money rolls over from year to year. MSAs are a "use it or lose it" thing - stay away from those unless you know you have big doctor bills. You get a checking account and a debit card for the HSA, so whenever you have a medical bill you just pay it with that. AND if you have money in there after retirement age you can just withdraw it without penalties.

I think it's extra good for me because knowing that I have money that can only be used for medical bills means that I do actually go to the doctor when I need to. Otherwise I would probably put it off or try to self-treat. Why I didn't get annual mammograms is still a mystery to me, though. Well, I certainly didn't realize they were covered at 100% pre-deductible as wellness care. And I was relying on good genes and good family history. Oops.

Still hopeful (?) for a Nov 30 start of chemo treatments

I saw my doctor again yesterday to check on this "sturdy" infection. He sees progress and is still hopeful that I will be able to keep my date with chemo right after Thanksgiving. We'll see -- this infection seems pretty tenacious. The doctor said it was the worst he had ever seen and that "this never happens." Lucky me, I'm special!

It's an odd mix of emotions that accompanied this chemo start date. A part of me, the scared little girl, sort of wanted to put off the chemo treatments -- forever! But I am rational and know that avoiding "taking your medicine" is almost always the wrong choice in the long run. That lesson just continually makes itself known in my life. It's one of the things I'm trying to teach my kids. It seems like the most natural and immediate response to bad things is to duck and cover. I often have to experience that emotion, and then I can go on to do the right thing.

Someday I hope to become a "real" adult, and not be taken over by childish emotions and thoughts. Then again, I'll probably be dead by the time that happens, so no point trying to hasten it!

Infections are scary things

Bad news: the infection has not yet run its course. I was definitely better on Wednesday, a week after the re-open and drain procedure because of a really bad infection. Only a little redness left, everything was looking positive. The doctor changed the antibiotic to Tetracycline (a blast from the past for all your boomers. I almost asked him whether it would ruin my teeth).

But by Thursday night it was clearly swelling again and much more red across a larger area. Well, my good buddy Chris told me a while ago, "Don't let up on them, MA!" so I called for an emergency appt today. Now I'm on two other, stronger antibiotics.

The doctor even mentioned MSRA, although my brain didn't retain what he said about it. He didn't say I did have it, I'm sure of that. Maybe he said it was a possibility. For those of you who don't know, MSRA is that very bad, antibiotic-resistant staph infection that one contracts from hospitals. It's why you don't ever want to stay in a hospital longer than you absolutely must. It's scary -- I think this bothers me more than the whole thing to date. Maybe I just need a nap.

Naps are my great retreat, now that I can't have a glass of wine (no alcohol with antibiotics!) and I can't take a bath (recent open wounds!). Everything always looks worse when you're tired and everything looks better once you've had a nap. If you can get to sleep anyway, and put off worrying for another day. A good book is also useful -- even a bad book can work!

And humor, of course. So here's my shot of humor, both for all of you and for me. My doctor was off today, so I saw his partner for the first time. He seems like a nice guy, although more casual and chatty. So, I move the "drape" (euphemism for a little dishtowel that snaps down the front and comes barely to my waist) so he can look at the breast before making any decisions about what should be done. And he says "My god! Look at that breast!"

I am taken aback. I think, "Well, he must be talking about the redness of it. I mean, he couldn't be talking about the size of my breast." So I say something professional like "Yes, it's quite a bit redder than it was 2 days ago." He says, "No, I mean the size of it!"

Again, I can't believe a doctor could possibly be that politically incorrect. I mean, this man is in his 50s. He's a doctor, for crying out loud! He can't, he can't mean that! So, again, I say the right thing: "It has swollen some." But no, the man is determined that I understand his point. "No, I mean you just have such large breasts. Let me look at your bra-strap lines. Well, they're not too bad yet. I see 80 year old women in here with breasts like that and they have deep grooves in their shoulders."

I must say, I was so stunned I was just amused. Through this last couple months I've been very glad that I'm not one of those body-shy women. There's just been all kinds of doctors, nurses, the passing intern, handling my breast. I have stripped for more men in the last 2 months than the last 5 years. It's about as sexy as cold macaroni and cheese.

I'm also glad I'm not overly concerned with my looks. I met one nice elderly man, who's wife had been diagnosed with breast cancer about the same time I was and was on the same trajectory (minus the infection). He said she was most worried of all about losing her hair. He said, "We had to get up at 5am so she could do her hair just right before we drove the hour to this cancer center. She's always been like that about her hair. Losing her hair is just going to be so hard on her." I felt so sorry for her -- it's hard enough to be 65 or 70 and find breast cancer, let alone "lose your looks" when you care about them so much.

"To sleep. Perchance to dream." For better or for worse, I rarely remember my dreams.

Positive attitude or not?

I read an interesting article in The Week, a weekly news magazine, by a woman with recently diagnosed with breast cancer. "The Unbearable Lightness of Breast Cancer," by Barbara Ehrenreich. Great title! She is understandably irritated by all the pink and teddy bears and other "cutesy" things that have become identified with breast cancer & the "awareness month" of October. I have to say I agree with her on teddy bears. I want no teddy bears.

What amazed me, though, was that she did not WANT to have a "positive attitude." She was angry and wanted to stay that way. She blames today's poisonous, cancerous, ubiquitous chemicals for her breast cancer and for the increase in cancer generally. It may be that she is right, but I still can't agree with her attitude.

For me, the issue is: we have to spend about 6 months in the Country of Cancer (as it's called in a poem a friend sent me -- see poem below). During that 6 months, we can choose how we want to spend our time. For me, I would never choose to spend 6 months angry. Such a waste of time! What a loss of all that humor (black humor -- often the best and most useful. My own mother has come up with one: "Beauty and the Breast." !! Little wonder where I get my sense of humor...)

Perhaps my attitude is selfish. Hers may be creating more awareness of healthy food, healthy air and healthy water. Doing more to fight environmental degradation. On the other hand, it would be selfish of me to inflict my anger on my kids, who did nothing to cause all this. One thing I've found about anger (and joy and humor, actually): it's equal opportunity. It likes to spread itself around and doesn't look for "appropriate targets." It begets itself. And I'd rather spend time with humor, positive attitude, and up-beat-ness.

Off to the Country of Cancer

by Liam Rector

It comes on.

Comes on with the word,

A doctor's word,

The doctor saying cancer.

"But do I have cancer?"

"Yes, cancer."

Doctor has to say cancer

One more time

Before the cancer

In me

Becomes the word

I give over to it.

"What then

Will we

Do?" (A we

Enters

Quickly, to calm

The alone

Setting in

Quicker,

And then I

Let go of the we

Altogether.)

"We'll do

A regimen of chemo

And radiation and hope

For the best." "Well, that

Sounds like something. You're sure

I have cancer?" "Yes,

Cancer, that's it."

But how serious is it? and how will it be treated?

I should have put this one earlier. Ah well. The pathologist labeled this cancer at 3 out of 3 for "aggressive." Now, that said, I should also repeat what I've said in a comment to my own previous post: I should assure you that my ultimate prognosis is very good. An average of 2.3% of women my age will die of various causes within 10 years -- the average number of women with my cancer and these treatments who die is about 7%. So, yes it has gone up, but it still seems pretty darn good. I mean, over 10 years a lot could happen!

The cancer was small, less than 1 cm (.9 cm), which is a good thing. However, it had already spread into one lymph node, so that's a bad thing. People who know about cancers will know what the following info means (if you don't, it basically is a more technical way of saying "aggressive.") Estrogen positive, progesterone negative, HER-2-neu negative.

Because the cancer is aggressive, the oncologists all agree I have to go the full nine yards (a nautical term for putting all your sail yardage out): chemotherapy, radiation, and hormone therapy. Now that the "findable" cancer has been removed from breast and lymph nodes, I can move on as soon as I am well. It turns out that radiation and chemo both target "fast growing cells" which is what healing cells look like too. So, I have to wait until I am all healed up from the surgeries.

The chemo will happen first, once I get started it will be 4 treatments, 3 weeks apart. Probably my hair will fall out -- it does for the majority of patients. Most people say that the first 2 treatments were not that big a deal: feel crummy for a day. Later treatments can be expected to knock me out further. A treatment is basically sitting in a chair for 4 hours while poison drips into your system. (Can you tell I was hoping to avoid chemo?) It makes you better by killing any possible remaining cancer cells; unfortunately, it's a blunt instrument and your body is made entirely of cells, so you see the problem.

After chemo is done, at this point that will probably be mid-January, I will start radiation treatments just on the breast. Those are 5 days a week for 7 weeks or so, but only last about 30 minutes. So, you just "fit that into your life." If I can get those scheduled for right after I drop the girls off for school that might work OK. Here's an amusing (or disgusting) thought: radiation is what we use to cook things -- so my breast will end up a bit like a medium-well steak. In fact, some patients report that their breast is now sitting a little better -- like how a steak shrinks up and firms up when its cooked. Unfortunately, they don't do radiation on the other side just for symmetry...

Then, finally, I get to take hormone/estrogen blocking pills for about 3 years I hear tell. Hard to believe. Although I am already post-menopause, my already-detestable fat cells are seeping estrogen into my system. (For most of you women, that's actually a good thing, the only benefit of fat cells to the modern woman.) So, I get to go through menopause AGAIN, with teenagers this time! Really, sometimes life is SO UNFAIR! I guess I didn't suffer enough the first time. Certainly not as bad as many women have told about, no hot flashes, and since I was already going through a divorce I thought the rages were natural.

Two-and-a half months of surgery

Well, it seems like two-and-a half months of surgery. It moved along amazingly fast once the diagnosis was cancer, which was late August. But then, delay after delay; more findings; infection.

My doctor recommended a surgeon, I met with him and was supposed to go "under the knife" the next week. Well,not much has gone according to schedule with my cancer. I guess disease has its own time schedule and there's no hurrying it. (Sorry if this blog isn't formatting correctly on the line -- somehow I turned off its word-wrap and can't figure out how to get it back on, so I'm putting in hard CR.)

The MRI showed "something" in the other breast. (FYI, the cancer is in the left breast). So, the surgeon needs to clarify what that is before he goes in. More mammograms, more ultrasound. No biopsy, but they decide it isn't cancer, just thicker tissue. (Probably some term for it, but I've forgotten that one.)

So, schedule for the following week. Except that I get a call from the Census (with whom I have been making ends meet whenever they have work, which is every couple months). "We'd like to hire you back for a week of training and a couple weeks of work, except you must attend a full time training next week. You have surgery scheduled? Well, sorry, we'll call you again in January." ACCKKKK!! OK, if they can postpone the surgery, so can I.

Finally got into surgery September 29th. They get the cancer and also take out a "sentinel lymph node." Another new thing to learn: there are lymph nodes all over your body, draining fluids. Where do those fluids come from, I'm still not too sure about that. As a little kid I thought my body was like a tank full of blood sloshing around in there. Then I learned that was silly, blood is only in veins and arteries, there is no fluid sloshing around in you. Well, now it turns out there is. Sort of. So, anyway, the sentinel node is the one which primarily drains the area of the cancer. If the cancer has moved out (I'm not sure if this is "metastasized" or if that scary word means something more ominous like having the cancer move in a big way into bad places like organs), then it would first show up in that node.

Initial announcement, delivered right as I come out of anesthesia, was that the node was clear -- no cancer! Hurrah! But then they went back to do a finer analysis, and oh dear! there was some cancer in there. Not good -- need to immediately go back in and take ("harvest" is the word they used. Really.) a bunch more lymph nodes and check them for cancer. "Tomorrow, can you be here at 6am?" (It's already 4pm and I have to arrange for my kids to get to school and get home, for someone to cover for me at work the following day, someone to take me to surgery and pick me up afterwards, yadda, yadda. I guess doctor's can't think about that, but being a single mom and doing cancer really don't go together well. I don't recommend it.)

OK, second surgery on Oct 6. Bastard doctor (not really, I do like him and trust him) says "No, this won't be much worse than the lumpectomy surgery." Liar! They take a piece of flesh the size of a poptart out from under my arm! (I wonder if it was a "pound of flesh"???) Nerves are damaged, muscles are out of whack, it's much more painful and tiring. People keep thinking I'm the iron maiden, but really I do seem to recover pretty quickly from surgery. I was up and around the next day on the cancer removal, but on this one I was shaky after doing a little computer work for an hour. And the worst part of all these weeks is that I am indeed working the Census, and only get paid when I work, and there's a limited supply of work -- get it while it lasts. So, I'm off driving 250 miles and working 10 hours two days later. Ouch!

Done with surgery? Nope. An infection sets in. Unfortunately not uncommon, probably not brought on by any thing I did (although of course I worry that by overdoing I have brought this on myself). The infection makes me sicker and more tired than anything so far. My breast looks like a lobster and is swollen and sore. (OK, you guys, you're thinking "Gads. MaryAnne with a swollen breast. Is there room in the universe for such a thing?" Shame on you!) I wake up in the middle of the night in pain. Antibiotics do not seem to be making any difference. The doctor drains the lower part of the breast and adds an antifungal to the antibiotic. ("Anti-FUNGAL"?? Ewwh, gross!"). Some relief, but still not getting better. The doctor reopens the breast incision and drains a bunch of yucky stuff. Again, some relief but still not getting better.

Finally, I have to go back in for "real" surgery, defined by me as using anesthesia, November 5. That's last week at the time of this writing. So, I'm recovering. It does feel much better. I can't really see it due to the swaddling of bandages. We're not moving ahead on the chemo treatments until I am fully healed, the earliest could be after Thanksgiving. But I am really hoping for no more surgeries. I've had at least 2 doctors appts a week since August, 4 major and minor surgeries, at least 4 days of nothing-but-recovery from those. Some weeks I had 5 doctors appts -- some cancelled and others made the same day! So, the break will be nice. Assuming this infection has really been beaten.

Absorbing the news of cancer

The most amazing thing to me was how I went from "amazingly healthy" (well, except for quite-a-few extra pounds) to "cancer survivor" in one split second when the pathologist uttered those dread words: "Unfortunately, it is cancer."

But wait, you don't understand: Winnifords are pioneer stock! We are amazing specimens of Scottish vigor! We hardly ever even get sick! How could such a healthy person have cancer? And none of the women in my family have ever had breast cancer, how could I suddenly be the first? Me -- the strong, the vigorous, the ever-conquering?! To have all that feeling of physical superiority taken away from me in a split second was really hard. Now I'm a cancer survivor, one of the unhealthy, one of the sick -- a blot on my name for evermore. (This attitude hasn't really stayed with me -- see below.)

Getting a diagnosis of cancer when you have known that something is wrong but weren't sure what the cause was, must be quite a different thing. Breast cancer, for many women at least, comes completely out of the blue. One day you're fine, the next day you're "battling cancer."

Interestingly, I don't recall thinking "Why me?" Just "Oh no." Of course, as for all the set backs in my life so far, my attitude was pretty quickly one of "Well, this is another thing to get through. I'll have some surgery and take care of this and then be on my way through the real issues in life." I don't know why I have such a strong attitude toward problems in my life. I guess I've been pretty successful and that is generally how it goes for me.

Finding breast cancer

If you are finding this blog and about my situation for the first time: I know I should have told you before, but... I was diagnosed with breast cancer in August. I went in for a "routine" annual (well, I haven't had an annual for about 5 years, so I suppose it wasn't routine...). As part of that, the doctor got me to call for a mammogram (also haven't had one of those for about 5 years).

Two weeks later, the radiologist called me back to "get additional views." Well, there is no breast cancer in my family, I do self exams, my 2 mammograms that I have had since turning 40 were clear -- what could they really be finding? I called the radiologist to argue with him about whether this was really necessary or just "well, its not too clear and we'd like a better picture." No, he says, whether you come here or go somewhere else, you MUST get this checked out.

Oh. Well, OK then.

I went from additional mammogram views to sonogram, where the sonographer (?) shows me where to feel to find "the lesion." Huh, I always thought lesions were cuts. I learn my first new term: a lesion is any place under scrutiny. The lesion feels very flat -- not at all like the "pea" that they always used in the fake breast where we women learned to feel cancers. (Do men do a similar thing for prostate cancer?) It is quite close to the chest wall, too, so all-in-all not too surprising that neither I nor my doctor had found it.

Next week a biopsy. Amazingly the pathologist calls the next day and says, "Unfortunately, it is cancer."

Since then I've had 2 surgeries and have just learned that I will have to have chemotherapy, radiation and hormone therapy! I should assure you that my ultimate prognosis is very good. An average of 2.3% of women my age will die of various causes within 10 years -- the average number of women with my cancer and these treatments who die is about
7%. So, yes it has gone up, but it still seems pretty darn good. I mean, 10 years a lot could happen!

Purpose of this blog

This is a blog for myself and my friends, primarily, to help them keep up with my cancer treatment and recovery, and also so I can keep them informed without emailing and calling everyone individually. It's wonderful to have so many who care about you, but when you are already trying to juggle work, family & cancer, it's hard to find time to talk with everyone.

It is also for anyone who has cancer and is looking for what others say. It's a way for me to process my thoughts. Who knows, maybe its for "posterity" if I (or anyone else who posts) have great insights.

"Naaaahhhhh!!!!" :)