Now what?

Here I sit, one week away from what I have been hoping is my last surgery.  It's not a significant surgery.  It's scheduled for 8:30 a.m. and I expect that I'll be home around lunch time.  It's a simple procedure that is mostly cosmetic, just a re-adjustment of my one implant, making the "normal" one match the abnormal radiated side.  The recovery is supposed to be on the painful side since the surgeon will be stitching the implant to my rib and there will be lots of pinching, pulling, and tugging as it heals. The surgeon and the second opinion I sought out  both suggested that I'll have to restrict movement, lifting over 8 lbs., and not engage in anything physical for two to four weeks, but both also said I might find it really uncomfortable for up to 8 weeks.

I've been resigned to this for a while now.  Although the "problem" isn't significant and truly is mostly aesthetic, I really do feel like a freak when my fake boobs can't even line up right.  So I'm going through with it.

Lately, though, I've been noticing that I'm losing range of motion in my left arm.  At first, I thought it was just me, just in my mind, just my perception.  I guess I began noticing it when I was in Zumba class and tried to "windmill" my arms backwards.  My right arm went back, my left rotated to the side, and I looked like a fool.  Now, looking like a fool in Zumba isn't too disturbing to me.  I'm rather used to it.  As soon as the music starts, I look like a fool.  ::shrug::  It's what I do best.  It's fun and I'm by no means alone looking like a fool in Zumba class.  But, for shizzle I'd like to be able to rotate my arm backwards.  It's hard to feel remotely graceful or strong when your arm makes maybe a 105 degree angle from the side of your body instead of closer to 180.  One side of me does backstroke.  One side does the elementary backstroke.  Unkind.

Now that my one exercise teacher has also noticed it, I no longer think it's in my head, which is making me paranoid.  On the bright side, at least I no longer have to feel like I'm incapable of doing a push up because I'm incapable of gaining strength.  It's because I'm incapable of doing a push up.  Because this left side isn't working right.  But will it ever?  Is it going to get worse?

I suppose I need to make an appointment with someone about this.  Surgeon?  Radiation Onco?  I don't have time to actually go to any appointments in the next week since I'm cramming in as many office hours and one-on-one opportunities as possible with my students before Spring Break.  Then, I'm not ruining Spring Break any more than recuperation will ruin it, plus Amy and I are going out of town for most of it.   Later this month, I have a check up with Dr. Mo, so I guess I'll start with her.  I imagine, knowing her, there won't be a good answer or an easy path.  On the bright side, her office is very good at making appointments for me, so at least I don't have to make all those calls myself. 

I wonder what other damage has been done?  So, now I worry whenever I'm out of breath, whenever I cough, whenever I am miserable doing cardio-work if my heart and lungs aren't damaged.    I've had a little cold, sometimes I feel "chesty."  Is that lung damage?  Heart disease?  When I'm exceptionally tired, I worry about heart failure.  I've taken a nap for the last two days.  What does that mean?  Am I just tired?  Or is it something more than that?  Do I even want to know?

I bet it's back on the medical appointment merry-go-round within the month.

update June 22, 2010

I posted this as a status update on facebook, so for those of you here who aren't there, here ya go:)

I have more to say on this and owe a more complete update, but must go to bed. I promise to be more forthcoming in the near future.

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good check up with radiation onco today. Dr. F was as pleased with my current health....low bp, low heart rate, clear lungs, good cardiac echo, skin and tissue not showing any issues or contractions and showing lots of flexibility. He says he anticipates that reconstruction surgery will go well and there will be goood... results. He anticipates the fatigue will recede over the next 6-12 months.

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Go toward the light...

A few weeks ago, I said that I saw a light at the end of the tunnel. I was really hoping that that light wasn't a train or something like that.

To recap, I finished radiation the second week of May, and made it through alright. I developed some annoying burns the week after, but a well placed call (and being cranky) to the radiation nurses got me a prescription for some Silvadene creme which helped immensely. At this point, I have some peeling skin under my arm and some scabbed over blisters under my breast, none of which really bother me, so I'm guessing I'm calling the immediate physical side effects finished.

I've hit the peak of my fatigue from radiation, and sometime over the next few months it should start to improve. This explains why I'm so delayed in updating my blog. I can apparently string together 420 or fewer characters to update facebook, but much more than that has seemed overwhelming.

And for that I apologize.

I saw Dr. Mo, my onco, on Thursday, exactly 10 months to the day from being told that I most likely had fairly advanced breast cancer. That was the 20th of July, and the final testing results were told to me on the 25 of July. On May 20, the birthday of my 10 yr old son and the 16th birthday of my stillborn daughter, Dr. Mo pronounced me "cured."

Wow.

I guess that light was really the sun and not a train headlight.

While no one can be sure what is going on on the molecular or cellular level, as far as Dr. Mo is concerned, I am officially cancer free. I've been chemo'd (x2), radiated, sliced and diced, and, in theory at least, those rogue, rapidly multiplying cells are all gone.

I still have to do 8 more rounds of herceptin to make sure that my cells don't decide to rapidly multiply. But that's not that big of a deal compared to chemo. And I have at least one reconstruction surgery ahead at some point. And then there are all the long term side effects which may or may not be permanent: neuropathy, cardiac toxicity, reduced heart function, possible lung damage, damage to other physiological systems, psychological and neurological changes.....

But the cancer is cured and for that I'm quite relieved.

I really think that is a real light at the end of the tunnel...

Yes indeedy. I got some good news on Friday. As I was leaving radiation, one of the technicians commented that this coming Thursday was my last day. I was thinking it was Friday. So I made her double check. Yes, indeedy, I only have 4 days of radiation left! Thursday is my last radiation.

That is a huge milestone. Thursday will be the last active day of cancer treatment.

There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."

So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.

The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.

This simply is not an option. I will get my life back. I will feel better than I did before.

However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.

Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.

As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.

Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.

An indicator of fatigue

It is very common for those of us getting radiation treatments to experience fatigue. In fact, it is considered to be the most common side effect after redness of the skin. I became very well acquainted with fatigue near the end of my first 6 chemo treatments and during nearly all of my last 4 rounds.

My first inclination that I'm starting to experience radiation related fatigue is that I started saying, "I'm tired" a few days ago. I've also taken a couple mid-day naps this week. Then, there's the waking up before my alarm in the morning and being unable to go back to sleep, but also feeling unable to really move.

However, the biggest indicator has to have been today, as evidenced by the prolific number of posts I've had on facebook. When I haven't been in the car, at radiation, or walking at the community center, I'm right back in my recliner. I'd have the TV on, but I'm too tired to either get up and turn it on or find the remote. But hey, all three boys are home...one of them can do that for me.

Radiation

So, where did I leave off...

The misunderstanding of what "starting March 22" meant?

Yes, I did GO there on March 22nd, and I got my body mold made and my pin-prick tattoos. Then I went home and the doctors and physicists spent a week planning.

This past Monday, I was invited to return on Tuesday for "X-rays to check to plans" (loosely paraphrased).

At that time, all looked good. I got a chance to talk to a radiation oncologist who actually has a personality and made eye contact. I told him about my concerns and the NYTimes article that raised them. He reassured me that I could rest easy because he was the doctor quoted in the article and he and all of his workers do not rely solely on the machines.

Eh, whatever. It's nice to think you have control over your workers, but I'll take that as the best I'm going to get.

Then they suggested that since I was there and everything was set up that I should just go ahead and get my first treatment. So I did.

Now, I go every day for a 10:15 appointment.

Two days down, 26 more to go.

Just more hurry up and wait...

Actually, in general, there isn't a lot of "hurry up and wait" when it comes to cancer (or at least breast cancer). Once there is a diagnosis, things go fast, fast, fast. Or at least that was my experience. Perhaps that is due to the fact that I have good insurance.

Regardless, today was a prime example of "hurry up and wait."

I got measured, marked, tattooed (I never thought my first 5 tattoos would be so boring! Little pinpricks of ink, and yes they hurt), molded, CT scanned, and then I got to watch a dvd about radiation therapy.

Then the technician said, "It takes about a week for the planning. We'll give you a call."

I'm pleased they take their time and that the planning is so meticulously done. I just wish no one had previously said, "You will start radiation on March 22nd." Even my onco and plastic surgeon both counted, when they were discussing when to schedule appointments for after radiation was over, from today. Yet, I won't be finished six weeks from now. ARGH!!!!

This could interfere with a class I was planning on taking, which overall isn't that big of a deal, but still!

Silver lining: I was concerned that the echo-cardiogram I have scheduled Wednesday complicating the radiation schedule. Now it complicates nothing:)

Also, I'[m still pretty fatigued from chemo and sleeping quite a bit. Left to my own devices, I'm sleeping 12 hours a night with an hour or so nap each day. I was pretty concerned about managing the house and getting things accomplished with radiation (30-60 minutes there, plus travel time) each day. Maybe now that will be different.

And finally, I was supposed to try to schedule a lunch date with a friend. We've been trying to do this for a couple of weeks now, and our schedules just don't mesh. We are planning on trying again this week, and we'd left it at "I'll let you know what my schedule is when I start radiation." Now, maybe we can finally meet up!

Now, I'm just stressing that all the planning that will take place over the next week or so is done as meticulously as they promised me it will be. And that the damage will be minimal.

Even more frightening than cancer...

...is the treatment.

Tomorrow, I go for my first radiation appointment. I'll have tiny tattoos made that will help the doctors line up the radiation.

Then they will make a body mold so that I lie in the same position for ever treatment.

Then they will run some simulations.

When they are convinced that they are ready to zap me just enough, but not too much, in just the right places and as minimally as possible in the wrong places--which could take anywhere from 1-3 days and practice runs--I'll start getting zapped daily.

The scary thing about radiation is that if they screw up, it will kill me.

And the thing is, there is no way to know if they are screwing up.

Until it is too late.

The more things change

...the more they change.

I've always been one to choose fewer medical interventions over more. When I was having babies, I chose midwives. When I chose midwives, I chose ones that were not interventionist. I had one baby at home. I managed my son's ear infections with alternatives to ear tubes when it looked we were going to be encouraged to go that route.

When I have a cold, I have my own way of handling it that has always worked pretty well.

It's rare that I take antibiotics; my kids need clear symptoms of bacterial infection before I'll give them antibiotics. I was all about minimizing antibiotic usage before the medical community jumped on the bandwagon.

Then the whole cancer thing happened.

Once a person is diagnosed with cancer, there is no "bandwagon" per se. It's a high speed bullet train. Or at least it is with breast cancer. There are scans of various types: CT, PET, MUGA, MRI, probably more that I've forgotten. There are blood tests and appointments. Various minor surgeries: biopsies and port placements.

Suddenly, you have to decide on doctors to treat you. Before, I'd always chosen doctors willing to work with my quirky ways. Our family doctor, I chose because I knew I had a kid with pneumonia, our current doctor (at the time) couldn't see him and wouldn't call in an antibiotic until he did...instead he suggested I take the kid to the ER, so I called a doctor who was advertising for new patients in the paper. It's a good fit. His passion is sports medicine. We've used him quite a bit for that, too, and he at least doesn't argue with me about my quirkiness.

But when it comes to cancer. Wow. How do you decide? A bad decision could hasten death at best, result in imminent death at worst. I am very fortunate that I had a friend I could turn to, and I chose her dream team of doctors. My cancer is pretty black and white. "Garden variety" as my oncologist put it. The treatment is pretty much the same from doctor to doctor, clinic to clinic.

This is not something that I want to take chances with. I've read of people "going off the grid" so to speak with their cancer treatments. I respect those choices, but I'm not willing to do that. I'll take my supplements to enhance treatments, to support my health during treatments, but not in place of treatments.

Um, no way.

I did make one unconventional choice in all of this. That being to have a tissue expander inserted on the side to be radiated. My plastic is OK with it; it's pretty cutting edge in the literature; it makes the radiation a little more challenging; it gives more options for final reconstruction if it works. If it doesn't work, nothing is really lost. Because I heal well, my breast surgeon and my plastic surgeon trust that--physically--I won't have a problem. It's up to the expander. It needs to survive the radiation. The radiation oncologist I first saw wasn't pleased, but he was young and had little experience. I've since switched to a different doctor in the same practice (there really is only one radiation oncology practice here) who has 25 years of experience, was recommended by my plastic surgeon, and didn't bat an eye at "the plan." Personally, I'd not choose the guy as a friend. He was pretty off putting, didn't make eye contact, hadn't read my chart before coming in to examine me, very off putting bedside manner.

And that's the thing. I'm NOT choosing a friend. I"m barely choosing a partner in my care. He can be horribly offensive to me, as long as he's good at what he does. I am trusting he will not damage my heart too badly (there will be heart damage, it goes without saying). I don't have to live with him. Or even share a meal with him. I need him to do his job, do it well, and I have to trust that neither my oncologist nor my plastic surgeon, both women very proud of their work, would recommend someone if they thought he was going to impede their work.

All of which is a long way of saying that I've made some choices in the last six months I might not have given great consideration to in the past. For instance, my family all got the H1N1 vaccine. No questions asked. My family and I all got the seasonal flu vaccine. My first ever. Tynan's first vaccine ever. No questions asked. I didn't even investigate other alternatives. Whatever was in the doctor's office was fine.

And today, I started taking antibiotics for a cold. Why? Because if it is more than a cold, it needs to be dealt with. I don't have an intact immune system. I'm sure it's a virus, though, because I don't have symptoms of a bacterial infection. Plus, I've already taken a child to the doctor for this same illness, where I was told, "It's a miserable cold." Truth be told, my child was so miserable that I was hoping that he'd be prescribed antibiotics. Alas, he just had to suffer. Even cold medicines barely touched the symptoms. Then, the other two kids got it. Same progression of symptoms. No fever. Typical cold symptoms .

At the same time, if I'm on antibiotics, there is that much less of a chance that I'll get a secondary infection. Or, the antibiotics will cure any little bacterial infection lurking in there. Hard to imagine that there isn't some sort of bacterial infection in full, snotty sinuses.

Even more importantly, if I'm on antibiotics, I'm less likely to be turned away from chemo on Friday.

The only thing worse than getting chemo is not getting chemo.

As much as I dread it, it needs to be over. Friday is my last chemo. It just needs to end. And if I take these antibiotics, the infusion nurses are less likely to freak out about less than ideal health.

So, without even thinking about it, I skipped off to pick up my zithromax. Yep, Z-Pac for a cold. I've never taken such a strong antibiotic in my life. None of my kids have taken it.

Interestingly, two hours after taking the first dose, I actually think I feel better.

Maybe it wasn't just a cold.