Follow Ups and Continuing Treatment

My internet is back up now. So I may be able to post more regularly. As it happens, I'm writing at least part of this at the hospital. I have a follow up with my surgeon today.

All my wounds are completely closed now. I still haven't finished shedding all the dead skin, which means I'm quite itchy in a number of places, but at least I know I'm healing. I still have most of the neuropathy, that I had after surgery, though some of it is slowly shrinking

The worst things that are going on now are 3 fold. 1) It would seem that a nerve or two has come too near the surface of my skin, as a result of all the treatment. 2) I have a lot of nerve regeneration pain, that occurs multiple times a day, at random. 3) And I have lymphedema in my left breast, which is causing significant swelling (inside the areola), unless I'm wearing a bra. Even with a bra, there is still some swelling where the bra doesn't provide support.

Day 2. Being as it is that I forgot to post the above yesterday, I'm just going to continue from here. 

I had an appointment, just now, with a new doctor. He seems to think it would be a wise decision to remove the IVC filters (both of them), that I've had since 2012. The doctors, at the hospital where they were installed, never discussed this with me at all, except to say they would be permanent, if they could not be removed within a fairly short period of time. And that time passed years ago. So I had long since grudgingly accepted them as a permanent addition to my body. 

Anyway, apparently both have parts poking out of the vena cava wall. And one of them is penetrating into my aorta.

So, as you might imagine, this new information comes as quite a shock to me. And it's more than a little frightening. I'm currently thinking that there is a threat either way. Removal or no removal, something could go horribly wrong.

Oh yeah, and removal involves a tool-wielding scope, inserted down one of my primary arteries, FROM MY NECK.  OMG  OMG  OMG!

Day 3 of this post. It's Saturday now.

I've basically been just too good at avoidance, my dominant form of defense mechanism, today. Aside from a little art, and a lot of  Netflix, I haven't completed (or even started) anything I should have done. It took a lot just to pull my head out of the sand long enough to "finish" this.  So now I'm going to just stop here and post this.

Comments and words of encouragement are welcome. And if you'd like to help, or if you appreciate the provided information, please use the following link:

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Post-recovery Catching Up

As I may have mentioned, the last two weeks of my radiation treatment were extremely painful. I was, for the most part, unable to do anything other than feed myself and do some stuff on my computer. I mostly just "focused" on keeping distracted from my pain. Even wound care, though necessary, was very difficult and painful.
 
Now that I'm making progress in my recovery, I can finally think about organizing my thoughts, regarding those last two weeks.
 
I don't know if my doctors were trying to shield me, or if they were just too squeamish themselves. In any case, there were some things they didn't warn me about.
What I was told is that there would be burning. It was likened to a sunburn across my chest (possibly even a bad sunburn). To be fair, by the end of my treatment, there was what appeared to be a serious first-degree sunburn across my chest, which was accompanied by a LOT of heat.
They did not, however, mention that there could be wounds opening up, especially in the damp areas under my arms and breasts. And it would have been nice if I could have been braced for the serum leakage in those open areas. As those symptoms occurred, my treatment team and my doctor all said that it doesn't happen to everyone. "Radiation affects everyone differently." Although I did warn them that I have extremely delicate skin.

The actual "burn" symptoms started with my incision sights opening up (first the right, then the left under arm incisions). Contrary to what I was warned about, I got wounds opening up pretty much exclusively in the contact point under my arms and beasts. Not actually bleeding but certainly leaking serum. At least I can say that, although the serum dried to look like puss, it did not smell bad, so there was never any infection.
Towards the end of my radiation treatment, large areas of affected skin begin to turn a sickly shade of gray and eventually peeled. Also, some of those peeled areas turned into further wounds. For that matter, I am actually still peeling in places.
Unlike normal skin, after a sunburn, the skin that was peeling was kind of gooey. At first, this took me by surprise but I did eventually get used to that being status quo.
As new areas opened up, each began to leak serum. And toward the end of treatment, at least one large area was leaking serum with some blood cells, making it a kind of watery red.
There have also been areas, particularly around the edges of where the skin has peeled, that are even still painful to the touch. Everything is now improving though.

The Healing Process;
On the last day of radiation treatment, when I was in too much pain to even wear clothes that make contact with my under-arm areas, my treatment team assured me that it would get better soon.
By that time, I was generously slathering my wounds with the prescribed Silvadene cream and covering them with a single layer of gauze, to keep the cream in place. The gauze was very difficult to keep in place, especially if I had to commit any movement. And never mind the trouble I had dealing with wound care under both arms.
Eventually, having projected my bed with a towel, I eventually gave up the need for the gauze. This did seem to speed my recovery, at least a little bit.
 
I would like to offer a simple product recommendation, that helped in my recovery. I'd add a link, if I could.
Parent's Choice unscented wipes worked the best, for me, for wound care cleaning.
 
UPDATE
The previously mentioned post-surgical neuropathy, while still present, seems to be reducing.
I had previously been under the impression that my recent complete lack of sex drive was just a side effect of being post menopausal. To my surprise though, I've recently been having some return. The doctors tell me that I'm not really ready for "aggressive activities" yet. And I'm thinking that Tamoxifen may also affect my sex drive. But at least now, there is some hope I might, some day, enjoy some semblance of a sex life again. [For the record, I'm not taking new applications.]
 

 
In the event that anyone would like to show their appreciation, or assist me, please go to one of my previous post, that has the link at the bottom.

New ... UN-expected ... Symptomts

I started this post about 2 weeks ago, and then my treatment started really kicking my rear. So I decided to finally go ahead and post it. Not sure when I'll be up to posting again. At least I'm almost done with my radiation treatments.
 
{Originally started about 4/7/2018}
The first time it happened, I didn't realize it would be an on-going effect.

WARNING:  TMI Ahead

Expected Symptoms

This past weekend I began to notice some of the "burning sensations" that I was warned about prior to starting radiation treatment. I didn't actually recognize it, as such, at first though.

Frank and detailed description of symptoms beyond this point.

Much Better

Even though I needed to have a quick visit with my radiation oncologist, today was still a better day than yesterday.

For one, it wasn't raining, at least not much, today. And since it had been raining for around 4 days, that was a great change.

The "Treatment Machine" was running about 20 minutes behind schedule, but that was not a significant issue. It even gave me a chance to chat and share with some of my fellow patients. I do find it informative to learn about the experiences of others, in treatment along side me. And I am DEEPLY grateful that my situation is only as bad as it is.

Based on what's going on with others, things could be worse. 

[To anyone, who has gotten this blog address from me in treatment, there is no need to be concerned about being mentioned here. Even if I had your name, I would NEVER publish it, or any of your personal details. I'm deliberately using the most oblique references, to protect peoples' privacy. Even if I'm given expressed permission, I'll never include HIPPA details.]

It's worthy of note that the reason I went to see the doctor, on a non-scheduled day, was that I had noticed a somewhat hardened swelling in my left breast. He was kind enough to take the time to explain to me that that sort of thing happens, because of scar tissue forming around the surgical sites, during radiation treatment. And that it can cause fluid to return to those areas as well. He also mentioned that, on conclusion of the radiation treatments, it may take up to 3 months for the swellings to all go away.
While my vanity compels a certain level of concern, mostly regarding "will my breasts ever go back to looking more normal?" and "will they ever both be the same cup size again?", I am no longer terribly concerned about the swelling issue.

I'm still willing myself to take things one day at a time. I cannot allow myself to be too concerned about the future right now. And I find a certain amount of "escapism" to actually be required, to maintain my sanity. Of course, those of you who know me IRL, realize that "sanity" is relative here.  ;-)

Both of my transportation trips today were relatively pleasant. I highly enjoy riding with intelligent drivers, who are willing to carry on interesting conversation as we travel. The only dim spot in today's transportation was the perennially drunken couple, that got picked up after me, on my ride home. Thankfully between practically chanting to myself "do not engage", as in their drunken state they were beginning to argue, I was able to constructively engage the driver in conversation that deflected their argument to more benign topics. Therefore, unlike the last time I was in a car with them, the rest of the ride was relatively quiet.

Aside from the fact that I have noticed myself becoming more tired, as the radiation treatment progresses, I'm still managing to maintain about as much of a positive outlook as I think possible. Blessed be that it may remain so.
I am also still trying to pass on the Stay Positive message, along with my blog address, to as many of my fellow patients as I'm able. If I can help anybody go through this with me, or even after me, that will make me happy as well.

Comments and words of encouragement are welcome. And if you'd like to help, or if you appreciate the provided information, please use the following link:

Help LilMischif

Worst Ride Ever!

Day 10 of my radiation treatments.

So pretty much everybody, who's been reading this blog, knows that I've had breast cancer surgery recently. And I am still recovering from that.
I will preface the following rant by saying that I am extremely grateful to be receiving transportation through the American Cancer Society. And I'm quite certain that what happened to me today was no fault of theirs. So far, as they have been having difficulty finding volunteers to take me, I have been receiving my transportation from EMT.
On the trip to my treatment today, I had one of the drivers that I have had several times before. And am getting to know pretty well. The trip was quite pleasant and without difficulty.
 

My treatment itself took longer than usual and was therefore more taxing. Unfortunate since I'm getting to be more tired anyway [the Dr. says that can happen from the treatment].
I have also noticed a harder than usual area in my left breast. I'm supposed to see one of my doctors about that tomorrow. I'm hoping it's just swelling, brought on by the radiation or something.

The second trip was an entirely different "kettle of fish" from the first. To begin with, it's raining outside. Pretty much has been all day for days. Although that last part is a bit beside the point.
I was rather dubious about being picked up by a wheelchair-lift van. And they did not offer to let me sit in the front seat, so I didn't ask. But I was therefor forced to stand, on the lift, in the rain, waiting for my chance to step into the van proper.

The central seats were, in my opinion, too small. So obviously I chose to sit in the rear most seat that was more generously-sized. In hindsight, it seems that was a poor choice.
I have no idea if the vehicle has bad shocks, or if the driver was going too fast, or just exactly what was the problem. One way or another I was bouncing, on that back seat, so hard it was hurting my breasts! And the trip was not made any better by having to go out of the way to pick up another passenger. I should note that, normally, I do not object to additional passengers. But it's a different thing when I'm in pain. I did once tell the driver that it was getting very bumpy.

It was so violent back there that I had to shield my breasts with my arm and my bag. And I was holding on, for dear life, with my other hand. The seat-belt was little help, since I had to put the shoulder strap behind me, to keep it from strangling me!
Upon finally arriving at my driveway, I requested to be allowed to climb out over the passenger front seat, instead of having to stand in the rain again. I will give them credit. They did actually comply.

If I thought I had the option, I would request to never see that vehicle again. Or, for that matter, never to see that kind of vehicle again. They are difficult to climb into and out of (if I'm granted the front seat), as well as not feeling like they have proper shocks. The last being my experience with the several that I have been in, during this ordeal. I'm not even particularly fond of the ones that have a bus-like stairwell entrance, though they are (a bit) better.

The more I have to deal with any form of transportation, the more fervently I wish for this to all be done. Or at least the ability to transport myself.

Over-all not a good day. Though there is one ray of sun. ... It looks like Critter Control {314-423-8801 for their St. Louis, MO office} has FINALLY caught the groundhog. At least there was one in the trap this morning. I'm currently hopeful that there was only the one. 

And not to worry. I've been assured that the animals they take away are safely relocated.

Comments and words of encouragement are welcome. And if you'd like to help, or if you appreciate the provided information, please use the following link:

Help LilMischif

Just a Quickie

My treatment seems to be progressing well. Since I started the radiation treatments mid-week last week, I am approaching the end of my first week.

I don't think I'm feeling any burning yet. Although it's a toss-up whether the small amount of irritation I felt earlier, on the side of my right breast, has to do with the treatment or just irritation from my bra. It's also worth noting that, while I haven't needed any pain med's (as it relates to my cancer treatment) I am occasionally getting nerve regeneration pain, some more ... vigorous ... than others. And I do still have the weird head-achy/migrainey pain, to some degree, on most days. I try to only medicate when it threatens to interfere with my treatments or planned events.

In case I've forgotten to say so before, it looks like a lot of the swelling, and fluid build-up have gone away. There is an area, associated with the incision sight around my right aureola, that is sort of puckering in more than I like to see. There may still be swelling nearby, so hopefully "this too shall pass".

Overall I am managing to keep in fairly good spirits. That having mostly to do with taking things just a day at a time. I do regularly get the feeling that I'm forgetting things. Unfortunately it doesn't seem that that can be helped. I have to cope the way I can cope.

I really like the people on my treatment team. They are kind and very accommodating. Just for example, I asked if they would mind changing the music that they play in the treatment lab. They offered me plenty of other options, including being able to play any CD I want to bring in.

The hospital is a relatively pleasant place. They have lovely, relaxing art on the walls. And it's different in every area of the hospital. It really keeps things interesting. Not to mention that there are so many nice people. I'm even getting to know a few of them, besides those directly involved in my treatment.

Comments and words of encouragement are welcome. And if you'd like to help, or if you appreciate the provided information, please use the following link:

Help LilMischif

First 2 Days of Radiation

I'm extremely relieved to be able to say that I finally have my Medicaid! It's "Basic Medicaid" but it's better than what I have had before. And it couldn't have been more timely either. I just had a couple of prescriptions run out and had them transferred to the pharmacy at the hospital, for ease of access. I was on pins and needles, waiting to pick them up, because I was afraid they were going to charge me money. But my good fortune seems to be holding, for the moment. Those prescriptions at least are free.

I have decided, considering I have daily appointments for the duration of my radiation treatment, that I'm going to hold off on rescheduling my unrelated Diagnostics. I'm already tired with all the traveling, and it would be a nightmare to schedule anyway, especially since they would be at a different hospital.

Speaking of scheduling, more good news. My transportation has been picked up by the American Cancer Society. Unbeknownst to me, they have volunteer drivers that can take me to my cancer-related medical appointments. And I've already scheduled with them for the entire duration of my radiation treatment.

That "next appointment", that I mentioned in my last post, turned out to be the final set up for treatment. Apparently, again due to my delicate skin, they are declining to use the standard metal beads backed with adhesive. Instead they are marking me up with permanent marker, to be able to tell where the guidelines for the radiation device are supposed to go. My chest and the upper part of my belly look like a doodle, And they add more marks every time I'm there. I've no idea how they tell which ones to go by. 

I'm pretty sure it will come out of any clothing it rubs off on, since the ink is dry. Unfortunately, in the meantime, my bra is getting gray every time I put it on. I'm planning to hand wash with baking soda and dawn, after treatment is done, so I only have to do it once. I'll try to remember to post the results.

My  radiation treatments began  yesterday. And compared with the last day of set up (which included over an hour of trying to "hold very still", on a hard plastic table, with minimal padding), the first two days of my radiation treatments have been a breeze.

On the first day I spoke with another cancer patient, in the waiting room, who is further along in her treatment than I am. And she told me that it's unlikely that I will feel the "sunburn" (only on my chest), which I was already warned about, until about the third week of treatment. Although with my very delicate skin, I suspect there's a good chance it may actually be towards the end of second week. I actually hope I'm wrong there.

I've already got the full treatment schedule. I have to go to the hospital for around 30 to 45 minutes of treatment, every weekday, for a total of 5 weeks. In case anyone wants to count down, my last radiation treatment is on April 24th.

By the way, I found out a while ago what they're using for the "hormone therapy", but I just remembered to mention it now. Apparently it's tamoxifen. 
I'm a little concerned about that. I seem to recall there being some scuttlebutt many years ago (possibly as far back as the 70s), about tamoxifen and some serious side effects or something. Unfortunately I don't remember any of the details. 
If anyone can remind me, I would appreciate it. At least that way I could speak with my doctors about it.

Anyway, at least so far, things seem to be progressing again. And, for the most part, the more I learn, the better I feel about it.

If you appreciate the information I'm providing, and/or want to help out, please use the following link:

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Playing Catch-Up

Okay, so it's been a while since my last post. Apologies to anyone who's actually trying to follow my cancer treatment, or anything else I post. I have been going to an awful lot of doctors appointments, and in the process discovering that I didn't have the insurance I thought I did.

Following that last revelation depression, exhaustion and other things kicked in. They are probably all pretty much related to my depression. Some days it's about all I can do to get on my computer, do art (or zone out to Netflix) and feed myself. Often I do art AND Netflix, to reduce my odds of falling into a wallow state. When I'm seriously depressed, the less time I spend thinking, the better off I am. The obvious side-effect is that I end up forgetting things that I really had ought not to.

I'm working on getting Medicaid proper. That is to say that the papers have been filed. And hopefully that will come in soon. 

I decided to reschedule all of my other (not cancer treatment related) Diagnostics, until I'm sure I have full Medicaid. I already have too many bills, that may not be paid simply because I didn't know the whole truth.

I've had a couple of appointments with both continuing treatment doctors, as well as my surgeon. My most recent appointment involved getting marked up in preparation for the radiation treatments. I'm told the radiation is likely to take about a month of every-weekday treatment. That's going to be fun scheduling transportation for.

I was told, by the doctor who will be doing the "hormone therapy", that I will not receive that treatment until I am finished with the radiation. I'm not sure how long after, but definitely after. He would have also been the one to do the chemotherapy, if we had decided that I needed it. But since it was only going to decrease my chances of metastasis by about 5% (out of 100%), with my total chances without still only being about 15%. So I decided against it. Among other things that will allow me to keep my hair.

No, I'm not just giving in to my vanity. I just don't think it's enough benefit for the potential side effects.

I just learned that each of the treatments has a particular order in sequence. They only give chemotherapy first, then radiation, and ending with the hormone therapy. Apparently, receiving the hormone therapy at the same time as the radiation increases scarring.

I didn't know any of that, until after my next to the last appointment.

I'm sure I'm forgetting stuff. There's been so much going on. Not to mention all the large and small frustrations, and dealing with my depression, and continuing after-effects of surgery, and, and, and ... 

Please feel free to ask questions in the comments section. I will answer anything I can.

Tomorrow I go in for something else to do with the radiation treatment. For all I know, I may be actually starting treatment tomorrow.

If you appreciate the information I'm providing, and/or want to help out, please use the following link:

Thank LilMischif

Surgery Follow-Up

[Original Text:  Yesterday I had my first post-surgical follow-up with my surgeon. Started on about 2/2-3/2018.]

I just realized I never finished this post. My internet was off for most of a week, and I completely lost track of what I meant to say here.

The long and the short of it would seem to be that my tests came back about as good as could possibly be expected, though I am still waiting for results from a couple of tests (including the BRCA gene test). 

Now I have appointments with other doctors for continuing treatment. That includes a "hormone therapy", that really should be called a hormone-blocking therapy. Don't ask me I didn't name it. 

It also includes radiation treatment. Both are to ensure the cancer is entirely gone.

I continue to struggle with some discomfort, as well as difficulty sleeping. I'm working on getting my appetite under control. And I continue to go forward with my other diagnostics, in hopes of improving my chances at a favorable disability determination.

I will be sure to add updates, as soon as I know anything substantial. Thank you for your interest.


Words of encouragement and helpful suggestions are welcome. And if you'd like to help, please use the following link:

Help LilMischif

Post-Surgical Test Results

This morning I got a voicemail from my surgeon. She says that all the test results came back as she had hoped. So hopefully that gives me a leg up on my treatment. I don't believe that includes the cancer gene test (that I don't know how to spell). Again hopefully I'll get those results when I see my her next. Anyway, I have a follow-up with her 1/30/2018 at way too early, in the morning.
*fingers crossed*

Other progress notes below ...

Second Full Day Out of the Hospital

The following entry includes a frank explanations of some of my cancer recovery experiences. If you are at all squeamish about pain, bruising, bodily fluids, or possibly even blood, you should probably give this and related entries a pass.

I awoke today with the thought of getting a nice big breakfast and starting to get back into my usual routine.

First Day Home

The following entry includes a frank explanations of some of my cancer recovery experiences. If you are at all squeamish about pain, bruising, bodily fluids, or possibly even blood, you should probably give this and related entries a pass.

I can't say that I was feeling great when I left the hospital, but I did feel better than I expected to.

Hospital Experience - Post Op

The following entry includes a frank explanations of some of my cancer recovery experiences. If you are at all squeamish about pain, bruising, bodily fluids, or possibly even blood, you should probably give this and related entries a pass.

I obviously don't remember the surgery itself. I was unconscious moments after I was told they were giving me something [in my IV] to help me relax. But after I woke in the recovery room ... well that's a different story.

Getting There & Pre-Op

The following entry includes a frank explanations of some of my cancer recovery experiences. If you are at all squeamish about pain, bodily fluids, or possibly even blood, you should probably give this and related entries a pass.

Diagnosis and Treatment

So there I was, trying to improve my life in some small way. Doing my art. Creating new recipes for healthy food. And so on.

Then one day I realized that it had been quite a while since I had a mammogram. So I called The People's Clinic (my regular source of medical attention) and made an appointment.

A week or two after I went to my appointment, I got a letter saying that I had been referred to St Mary's Hospital for a follow-up mammogram because the technicians at the People's Clinic "saw something they didn't like".

So I went to Saint Mary's and got mammogramed again. 
Just days later, I was notified that I needed a biopsy. That didn't actually scare me so much. I remembered that, years ago, my mother had to have a breast biopsy. So I went in expecting it to be just a cyst or something even less scary.

Turns out I had a lump in both breasts. So I actually needed two biopsies and ultrasounds... and... and... and.

I'm not sure I've ever been poked and prodded so much, over so many doctor visits, in my whole life.

The final diagnosis was CANCER.

And not just one. I had one in each breast.

I say "had" because I've just come back from surgery. 

The good news, so far, is that they were both small, and apparently pretty soft. So even if I had been remembering to do my regular breast exams, I would not have been able to find them myself. So it's a good thing that I thought to get that mammogram when I did.

I still haven't decided if I want to blog about the details. There was a lot. And most of it was extremely painful. For now, I think I will just say that I am swollen, sore, exhausted and ready to move on with my life. 

Unfortunately, there is still much more to go. And I'm not even sure what that's going to look like.

I will say that the folks at St. Mary's have been really great. Even so, now that I'm home, I'm feeling so weak and helpless. I so desperately want to be done with this now.

Comments and words of encouragement are welcome. And if you'd like to help, please use the following link:

Help LilMischif

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