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It’s been a while since I updated y’all  on what’s going on. There’s more than one reason for that.

One is that I got blindsided by the effects of radiation therapy even though I was told to expect them.

Two is that it’s difficult to tell whether what I’m experiencing is from the radiation and what is from the fibromyalgia.

Three, this has been more tiring than I expected. I guess I’m not twenty-three, or even forty-three, any more.

Interestingly, except for the some of the physical stuff, they’re an awful lot alike.

The first physiPeeling Sunburned Back Royalty Free Stock Imagescal thing – and I won’t go into great detail – is the sloughing of tissue and the weeping and oozing. I expected “peeling skin,” like a sunburn, not what I got, though there is some of that, too. Sort of. But the good news is that once it started to heal (about a week ago) it was really rapid and there is no more of that. The skin is still not noTo hot Royalty Free Stock Imagermal but it’s getting closer to it. it’s still peeling, too.

The second physical thing is the fatigue factor. I don’t know how radiating one relatively small part of the body can cause such a systemic response, but it’s pretty severe, even compared to fibromyalgia. Or maybe it’s a combination of the two and that’s why it’s so drastic. I mean, how many times can I fall asleep right after dinner and wake up only to go to bed?

Part of the fatigue factor might be due to the fact that I finished theblogbuttonMA29077094-0001rapy only to go to a three day writers conference less than a week later, the Story Circle Network conference. I suppose the wisest thing to do would have been to wait until the next one but that’s two years, so…

And it was worth it. But not easy. Fatigue there was, sleep there was not, or at least not good sleep, more of a passing out.

I was inspired by all the great presentations and personal stories of so many talented women. I only hope I can hang on to that inspiration until the fatigue resolves. That may be sort of iffy, like my writing.

And memory issues. I can’t decide if I’m sliding rapidly down into Alzheimer’s orErasing Memories Stock Photography having yet another side effect of the radiation. Again, I was told to expect some of that but I was already having fibro fog now and again so what am I to think? I’ve always had a very good brain and now I feel like I’m losing it. Literally.

So here I am, still with the fibro, recovering well (I think) from the radiation, and now also taking the hormone therapy pills. I don’t know whether the heat Exhausted senior woman Stock Photographyintolerance I’m enduring is from the fibro or the pills. I was told to expect “hot flashes” but these are not flashes. Been there, done that.

This is pretty much a day long – and occasionally into the night – “flash” and I don’t tolerate heat well. I can only turn the air conditioning down so far before it drives SO to put his sweater on. That doesn’t go over too well either with him or with my checkbook. AC in Texas can run up a pretty good bill.

So that’s me at the moment. Achy, healing, hot, sweaty, uncomfortable and tired. I go see the doc the day after tomorrow and I’ll find out how she says I’m doing compared to what I feel I’m doing.

Such a crap shoot.

It’s Over!


Just wanted to post a bit of happy news today, at least to me.

It’s over!

I’ve had my last radiation therapy session yesterday and, while I’ll probably be having and feeling the effects of that therapy for several weeks yet, I don’t have to go for any more treatments.

I still have some “cooked meat” appearances and a weird looking sunburn, even some skin peeling and concomitant tenderness, but no more trips to the clinic, no more lying under a huge and heavy particle accelerator, no more exposing my tender skin and underlying tissues to a therapy that can kill or heal – or both.

Today I took my first pill for the hormone therapy. That will continue for five years and while I don’t look forward to that, either, it’s a lot easier than having to go somewhere every day at a certain time, just like I still had a job, and wondering if it was going to kill or heal. I just have to trust. And bless my sister for reminding me that it was a temporary “job.”

I was told that my energy will slowly return and the fatigue will slowly dissipate, that the skin appearance will slowly return to normal. It’s that “slowly” that I’m really unhappy about. I’m really not a patient person. Still, when there is no choice, I can wait even if I’m impatient.

I realize it could have been so much worse than a lump that hadn’t sent out tendrils that were obvious, that I didn’t have to have very much tissue lost. I feel almost guilty that I complain about various therapies when it could have been too late for them to work. Human nature, I guess.

So, it’s over. The tough part. Now it’s just hormones and regular doctor’s appointments. I can handle that. I hope!

Halfway


Tomorrow will mark the halfway point in my radiation therapy adventure. So far it’s been little adventure and a lot of stress and exertion.

For one thing, going to the clinic every day is the closest I’ve come to having a “job” since I had to retire. When I was actually working, I had a gazillion things to do every day and I generally got a bazillion of them done. Never everything, but a lot, just the same. Now, just getting out of the house and all is a “job.”

As my sister reminded me, though, it’s a temp job. Whew!

Nowadays taking a shower is a big deal and while I like feeling squeakyimage clean with shiny hair, I don’t care for the feeling of exhaustion that follows. So, I don’t take one every day; I use my mom’s “birdy bath” idea and so far I haven’t noticed any of the techs turning up their noses at me. Yet. Skimping on showers is a major way I can think of to make sure I have enough energy from one day to the next to keep on keepin’ on.

And I sure will be glad when I can use deodorant again and feel less offensive.

Other than the effort to keep from stinkin’ and to keep going to the clinic every day, the only major effect I’ve noticed is a certain reddening of the skin and maybe some increased sensitivity. The sensitivity is so slight that I can’t even be sure of it. The redness is definite, though.

Thank goodnessimage for SO’s willingness to come over from his job almost next door just to get my wheelchair out of the truck and then to get it back in again. I could probably get it out but I can’t be sure I’d get it back in. I’m fairly strong, or I used to be, but it’s pretty heavy and the truck door doesn’t open as far as the door of the van did. It’s a squeeze. And I need lots of room.

I remember they said something about expecting fatigue but I don’t know if that’s a function of the radiation or just the daily grind. At least I have the weekend to rest, though.

Now if only I didn’t have the laundry to do on the weekend…

Ongoing


Well, the first almost-week of radiation therapy is finished. I didn’t go Monday because I was still trying to heal a tiny pinhole-size area on the incision that wasn’t healing. After a week of Neosporintm it seems to have closed up. If it’s not completely healed they’re never going to hear it from me!

Then began the daily task of getting myself ready, never easy, and making the trek to the radiology department where the main hospital has an off-site clinic. If there’s anything else to be grateful for, it’s that I don’t have to make the 40-mile one-way trip to the big hospital get irradiated for five minutes.

Still, it’s stressful for me. I’ve mentioned the getting ready. Taking a shower and imagesuch is not easy, but somewhat necessary. I’m not allowed to wear deodorant, after all. Still, I can utilize what my mom used to call a “birdy bath,” i.e., judicious use of a washcloth on relevant parts. But when my hair gets oily, and I do have oily hair, there’s no other option but a shower.

Then there’s getting me out to the truck and getting on the way. I’m slow but I get it done.

It’s only about ten miles to the clinic but it takes a half hour, traffic can be so bad. Plus, I have to make sure SO is available to get the wheelchair out of the truck and such. It’s been relatively easy in some ways since his college had spring break this past week but he had to be on call. It was his first time and that had him stressed out. Thank goodness he wasn’t called. The next three weeks will require him to take some time off work every day, though.

Then, after all that, the irradiation. It takes them longer to get me set up and imagepositioned properly than it does for the actual treatment. The worst part for me, though, is having to keep my arms up over my head. I can get them there, no problem; keeping them there for even five minutes or a few more guarantees me pain in my shoulders. Well, more pain. Yesterday was the last treatment for last week. My shoulders still hurt.

And I keep having this feeling that I should be writing about all this. I mean, isn’t cancer one of those awful, dreadful things that bring up so many chaotic emotions? And yet, I don’t find anything to write about except the mechanics of it all.

There are all the usual things to be said about denial and suppression and suchimage but I’m fairly used to going inside and finding out, feeling out, how I feel. And all I seem to feel is, “Let’s get it done.” I don’t worry about dying or being mangled by radiation or anything like that. The closest I come to any kind of feeling about that is, “Well, wait and see. Then we’ll do what comes next.” image

And so we go on. I’m not going through this by myself, of course, and I often feel that SO is more stressed about it than I am. I think I’m better at handling all of it than he is but then again, he’s helping me so maybe he’s the one taking the load.

In any case, the saga is ongoing.

Post Non-mastectomy Update


While I’m waiting for the SO to return from an appointment so we can go pay property taxes that I forgot to pay, I’ll see about getting out another update. I let the tax deadline pass by but I’m sure y’all can understand how that could happen.

It seemed that the longer I lived with the decision not to have the mastectomy the lighter I became. I only wish that would translate to actual physical lightness. I accidentally saw what I weighed at the last appointment and now I’m depressed about that. I haven’t weighed myself nor looked at the doctors’ scales in over a decade. Sigh.

Not everyone agreed with my non-mastectomy decision, of course, but if it makes me feel better – if not actually lighter – to forgo it, then for me it must be the right one.

And that means checking on radiation therapy and chemo again. I saw the oncologist yesterday and got the results of oncogene studies on the tumor.  Even without chemo there’s a less than 10% chance of recurrence. The way I see it, it took five years to get as big as it was the first time so it would take that long again, and given my age, something else is more likely to kill me than cancer. So, no chemo recommended.

Since there was no lymph node involvement and the chances of recurrence are so low, chemo is out and the next step seems to be radiation therapy. The "margins" aren’t as clear as radiologists would like but I’m hoping to talk them into it anyway. The surgeon agrees and said there’s just one small focal point that they might be willing to overlook.

After any radiation therapy will come hormone therapy. Hot flashes all over again. Double dam’! I expected to be finished with them after going through them the first time. Oh, well, hot flashes got nothin’ on cancer. *G*

And that’s the news until now. More to come as it occurs. Or something like that.

Change of Mind


It’s been about three weeks since I decided to have a right simple mastectomy, which would have been done this coming Monday.

I say “would have been done” because I’ve decided to cancel the surgery. Input from several people varies from “I’d have it done” to “It’s up to you,” which, of course, isn’t anything other than I’d expected.

When I first decided to have the surgery, mastectomy seemed like the imagemost likely, if not the best, option. I prepared for it in several ways, from considering the loss of a significant part of me to worrying about the scar to considering a tattoo to becoming an “Amazon.” (They were warrior women, you know, and according to legend had their right breast removed in order to facilitate use of the bow and arrow. No proof of that but legends get started for a reason.) I sort of liked the idea of being a warrior woman, of taking up archery!

As time went on, though, it became less of an exercise in imagepotentials and more realistic in what it meant. I began to feel more weighed down by the idea and felt more and more that something – I couldn’t put a finger on what – felt off, not quite right. I still don’t know what that something is or was. I may never know.

I told myself it was just usual and normal second thoughts. Or maybe I was afraid and just didn’t feel it as fear. Maybe I wasn’t in touch with my real feelings, etc.

Here are some of the things I considered before changing my mind:

1. If it took five years or so, which is what the surgeon suggested, for this lump to get as big as it did, this cancer wasn’t very fast growing.

2. So, if it took five years to get this big, would it take five years to get that big again if it came back? And if it did, how much beyond that would it be before it killed me? I’d be 76 in five years, and while that’s not old by a long shot, even with cancer I could live a fairly long life until something else killed me.

3. Since there is no lymph node involvement, what are the odds that it’ll spread, whether fast or slowly?

4. There’s no guarantee that they haven’t already removed all the cancerous cells, just a bucket load of caution in case they didn’t.

5. I’m not afraid of being dead though I’m a bit squeamish about the mode of dying. Cancer is not nice.

imageSo now I’m waiting for a call back from the surgeon to make sure she got my message. I’ve been having a bit of difficulty getting hold of someone to tell. Since I’m a big believer in “signs,” that might be one but I’m feeling that it’s not.

What I can say is that once I came to this decision, I immediately felt much lighter, as if a load I’d been carrying (for three weeks?) had been lifted. That’s a sign, too, and a welcome one. I think my Self/Soul agreed with me.

When I talk to the surgeon I’m gonna tell her my decision, see about regular followups, what they call “watchful waiting,” and take some actions that might or might not make a difference. I’m a believer in so-called alternative health methods andimage in a case like mine, where there isn’t any desperate life or death need for immediate surgery, I think that’s reasonable. She probably won’t agree but hey, it’s my breast and my life.

This is an instance where my blog title, Search for Soul, comes to mean something. And no matter what the ultimate outcome, this is a search for a soulful resolution.

Grieving


This interlude before I have the final surgery has proven interesting to me. Up until now, things have been happening so quickly that decisions could and did come fast and without a great deal of thinking. That was OK, because even with the two previous surgeries, not much changed. I had a rather discrete 3” scar and basically, it wasn’t much different than deciding to have a callus removed.

imageHowever, losing a breast is not quite the same as removing a callus.

First, I just wanted to get it over with.

Then I thought about what I’d do afterward, hoping the scar wouldn’t be a big deal and thinking about whether or not I’d have the courage to get a tattoo.

And now it’s sinking in. A part of me is going to be gone, a part of me that I interacted with every day – even if just to cover with clothing – to never be seen again. Even if I’d have reconstruction (I probably won’t.), a reconstructed breast may look the same but it won’t be the same one.

Eventually I finally came to the realization that I had a vague feeling of griimageef over that. I’m going to lose a part of me. What does that mean? To me as a person, I mean.

I’m not good at grieving. I suspect that’s a fault I should rectify. Not that I haven’t had other losses, big ones, to be grieved, but that I don’t think I’ve done a good and complete job of grieving for any of them.

This is something I need to learn how to do.

And maybe that’s at least a part of the lesson here. To learn to grieve. Not to just keep a stiff upper lip or keep my chin up or make light of it or just move on.

So for the next two and a half weeks I intend to investigate that more fully. Just how do I grieve and what will I do?

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