new to forum, diagnostic mammo and ultrasound found large lumps

I just got back from my 2nd radiation. Today it took much less time, just as they said it would. It was 15 minutes tops. I don't know if i'm imagining it, but I feel kind of achy all over now. My breast looks the same so far-- no sunburn, but i think that may be something that comes with the cumulative effects of radiation. I leave in an hour now to go to OT and PT for my Guillain Barre. After that I'll be REALLY tired.

Best of health and positive thoughts to all who are reading.

I couldn't find information anywhere that listed achiness as a side effect of radiation. I also realize that within the last couple of days I've felt down, depressed. That is not me!! I'm so naturally positive, I make people sick. In previous posts I'd been saying how much I was looking forward to starting radiation, getting back to defeating cancer, but there is no getting around the fact that I have been depressed every night this week.

And for anyone reading who is only interested in what I'm going through with breast cancer, skip the rest of this post. Originally I hadn't wanted to go on too much about my Guillain Barre. But I realize I DO think it's beneficial to describe what I'm going through with that, as well. Beneficial for me, of course. Beneficial to the maybe one other person reading this who may also suffer from Guillain Barre. But beneficial in general to anyone with breast cancer who then also finds themselves dealing simultaneously with another major catastrophe-- whether it's a disease or some other traumatic event.

Since I began radiation I think my Guillain Barre IS getting worse. The numbness in my fingers feels deeper, and the same for my feet and calves. By about 8pm I am ready to scream in pain, and I picture relief from my hand pain in the form of someone chopping off my hands. My brain will tell me I need to scratch my foot (for example), however as I scratch the area, I realize the place that feels like it needs to be scratched is about an inch or more below the surface of the skin. Today I was in a store and felt a drop of water land on my hand. I looked up to see if I could see the leaking ceiling, but couldn't find it. I looked at my hand to wipe off the water, and there was none. I attributed that to the droplet beading up on my sunscreened hand and falling off. In the next few minutes in the store I felt 2 more drops of water land on my hand. Of course, there was nothing there. Then in the car on the way home from the store it felt like a drop of water landed on my lower leg. I looked down to discover that the place I felt the water was underneath my sock. Guillain Barre attacks the nerves and destroys and/or alters (at least temporarily, sometimes permanently) how the nerves convey information to and from my brain and limbs. This is a weird-*** disease!!

Post Edited (exqualls) : 7/18/2017 2:20:41 PM (GMT-6)

I see the neurologist who is treating me for my Guillain Barre in about 2 weeks. I see my primary care doctor in just a couple of days. I had both OT & PT yesterday. One of the therapists has been at it for 25 years has seen during that time just 4 other Guillain Barre patients besides me. So I asked him if he'd heard of anyone else experience the feeling of drops of water landing on them, and he said No, but added when there is damage to nerves, it did not surprise him, as just about any weird feeling can happen. That rang true to me, and reminded me of the nerve damage I had after a back surgery 13 years ago.

I was left with a very unpleasant feeling on a maybe 3" x 3" area of skin on my upper left thigh. The first time the weird feeling happened was when I was still in the hospital after the surgery. A nurse was doing something with my IV and suddenly it felt like a needle was being violently scraped against my skin. I shrieked and asked what the heck she was doing. Of course, she was not doing anything near my leg. That feeling happened a few more times in the hospital, sometimes more like someone was torturing me with a broken, very sharp piece of glass, dragging it quickly back and forth on that patch of skin. The feeling is so convincing. I had asked my doctor about it then and he said that since the surgery was basically at my spinal cord, that odd nerve reactions can occur and should lessen or disappear in time. Since then, 2004, I have experienced the jagged piece of glass scraping my thigh maybe 6 times---usually after a particularly physically stressful day of yard work or kickboxing. So that is likely what's going on here--I have nerve damage so weird feelings will happen, like the drops of water.

I do take an anti-depressant, ever since my breast cancer was diagnosed. That diagnosis pushed me over the edge, compounding the problems I was already dealing with, financially, with my marriage, with my oldest son. And in the last few weeks the dosage was increased.

I am now starting to wonder if I am getting lymphedema, a side effect of the mastectomy, as all my axillary lymph nodes on the left side were removed. I can't get rings to fit, and the medical alert bracelet I wear on my left arm is tight. However, since I have Guillain Barre, it is also severely effecting my fingers, hands, and to some degree, arms (as well as my legs and feet). I see my oncologist in a couple weeks so I'll discuss lymphedema with her then.

Susie, I went to the inspire website and without joining read around for awhile. Thank God for the Internet and forums so we can learn so much from others' first hand accounts.

Well I have babbled on for quite awhile here! And with how poorly my fingers function, the time and effort to correct my mistakes has worn me out, lol.

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/18/2017 2:25:23 PM (GMT-6)

Susie, I have written down the information about topical creams to discuss with my neuro when I see him next on 6/19. And you have a good memory--my husband's SSDI hearing is on 6/20. I am enlisting everyone I know who believes in prayer to pray for a positive outcome!!

I do think radiation is causing me to feel more fatigued, but I am looking on the bright side -- there could be far worse side effects, like vomiting or losing my hair again. My hair may be only less than half an inch long, but I love seeing that instead of my bald head.

I saw my onc a couple days ago (I had thought the appointment was a couple weeks away, I guess that's my chemo brain forgetting things). As soon as my radiation is over, the surgeon who did my mastectomies will do an out-patient surgery to remove the port in my chest (through which I had received my chemo drugs). I had forgotten about removing the port!

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 6/10/2017 11:56:57 AM (GMT-6)

We've been having rain almost daily as well. It pained me so much to see weeds growing up in my garden beds that I wheeled myself out front and slowly pulled weeds and wheeled myself around a garden bed that surrounds a large crepe myrtle. It took me 3 hours, but it was so rewarding to actually do a chore like that!

We are scheduled to get rain every day for at least a week, so no more attempts at gardening for awhile.

So, let me share my despair and frustration over my Long Term Disability and health insurance situation. I had short term disability until April 4, and when I was receiving that I got checks every two weeks, and from those checks payment for my Aetna health insurance was automatically deducted. Once it switched to long term disability, I only get a check once a month, and they do not deduct for the health insurance. I was told that I would receive a bill for the health insurance from another company, called bswift.

So, STD ended April 4.... at the end of the month I got my first LTD check, and was told I'd always get the check at the end of the month. But I did not receive a bill for April's Aetna health insurance. I called several different departments at Aetna and they had no idea when I would be billed, and no one had a valid number for "bswift".....May comes along and at the end of the month I got my LTD check, but again no bill for health insurance. Then a couple days later I get my first correspondence from bswift saying I owe a little over $3000 ($602 a month from January though May, and they included a coupon book to make each payment from January through December, and encouraged me to pay up for the missed months of January through April so my insurance would not be cancelled.

Of course I start to freak. The idea of losing my health insurance is unthinkable. At first I only started working 7 years ago to get health insurance for my husband and kids when he could no longer work and we couldn't afford COBRA any more. He'd had diabetes for 20 years and a heart attack, so medications for those problems is mandatory, and expensive, and we never know when he could end up in the hospital again. My kids had no health issues, but they are both "extreme athletes", so we had trips to the ER for stitches from falls, and possible concussions, so xrays and CT scans were very expensive. I was the only person in the family who never had any medical expenses.

But now the expenses for my cancer treatment, and now for my Guillain Barre Syndrome, far surpasses my husband's expenses, and for the most part my kids have outgrown their desire to do extremely risky sports and stunts. WE CANNOT LOSE OUR INSURANCE. So like I said I freaked, then calmed down and called bswift and explained that I did not owe $3000+, because payments for my health insurance from January through April 4th were already paid by automatic deductions from my STD checks. I asked for a letter confirming this and for them to send me a new bill from April 5th onward. The woman I spoke to seemed to comprehend the mistake and said their billing department would contact my employer to confirm and it would be cleared up.

Of course the story goes on to be a nightmare, with me continuing to get past due notices for the months already paid, and me having to make tons of phone calls and emails to both my employer and bswift, and everyone saying the problem will be resolved....but the past due bills prove otherwise.

I don't have the mental fortitude anymore to deal with crap like this! I used to be such a strong person, but for the last 16 years I have had to deal with so many problems, that I have been beaten down. I was feeling beaten down by many severe problems: marital, financial, and with my oldest son, BEFORE I got cancer, and then GBS, that there's not much left of me to deal with new problems that come along (like the health insurance).

Susie, big cyber hug back at you.

I had wanted to find copies of my pay stubs to show the deductions for health insurance but I only had email copies. But guess what? Sometime during the 5 weeks I was in the hospital for Guillain Barre my computer crashed and I lost everything. My email is working now, but every email from the past 12 years is gone. So, through many phone calls to my employer I am trying to get the proof I need, but all I get is the run around, always referred to a different department and told "it's being looked into". Ugh.

So I am halfway through my radiation! Yeah, 3 weeks down, 3 weeks to go. So far there are no changes to my skin. The cream the doctor recommended I use after each treatment stains my bra and whatever top I'm wearing, so I've started wearing tee-shirts I'd normally wear just for yardwork, since I don't care too much about staining those.

Best of health and positive thoughts to all who are reading.

I am very glad to read the neuro was willing to script the cream. At any relief any potential relief is worth it. I have little to no knowledge about IVIG, I have seen it mentioned in other forums here. Will it be cheaper if you can do it in his office rather than outpatient at the hospital? I think you made a very wise choice to hold off on PT until after radiation is done.

I have not been posting much this past week or so. I had to have all my lower teeth pulled & fitted with a denture of sorts almost 2 weeks ago. What a nightmare this has been lol. The pharmacist called the dentist & said her long acting pain medication will take care of her mouth pain so he voided the darn script!! I was ready to throttle the pharmacist as she was very wrong. There is a huge difference between chronic & acute pain. I spent the first night walking the floors, crying, throwing up. I had an appt for a checkup the following morning & insisted the dentist be brought in. I reminded him that he was made aware of what I take & I did get a script for a few days of pain meds. I told the pharmacist when I took that script in I know exactly what you told my dentist yesterday & she denied it of course. I said go ahead & call him again, he will be expecting your call. I have to keep running back & forth out there for one problem after another. I remind myself this is temporary.

Has the SSD hearing been held yet, if so how did it go? I have been praying for a good outcome. Keep me posted.

Today started week five of my six weeks of radiation, and WOW, my skin looks really bad. From my chest up to almost my neck is red and scaly-looking. My treatment changed a little today; half-way through the doctor came in and drew some lines and dots on my chest, AND I got another blue tattoo dot. Then they added another piece of equipment to the radiation machine that came down closer to my chest and did some more treatment. Still, radiation is the easiest thing I've gone through since this all began.

Awesome on finding out what the hold up is on the compounding cream. Just a few more days. Glad to see the radiation did not cause more skin problems, lets hope that continues. My mom's skin on her back became kind of tough & leathery feeling after radiation. The rash she got was in the front under her breasts & it was strange to us because they only radiated her upper back. The cream they rx'd took care of that.

Yes, I too took good care of my teeth. I later learned that 2 of my inhalers used to treat COPD & a PPI I was on for years was the downfall to teeth problems. Last year one of my daughter's co-workers started having problems with his teeth. This guy goes to the dentist every 6 months & has perfect dental hygiene & started having problems. This year his dentist was stumped at what was going on, they sat down & went over his meds again, turned out he was on a PPI for GERD & the dentist said there is your problem. This guy is in his early 40's never had a cavity!! I a beginning to think I need to reserve a motel room by the dentist office. In the past 2 weeks I have been out there 7 times!! You know they fix one problem & create 2 more. I just have to keep reminding myself this is temporary & will pass in the next 6 months.

Take care.

E, I was some kind of upset over the problem with my real teeth. I learned a little too late on that deal. All the info with the inhalers warned of yeast issues with the mouth & you had to rinse your mouth really good. My older sister has the very same issues & problems from using the same inhalers.

Oh, I never thought about skin peeling from radiation. Well, by now you are very close to thumbing your nose at radiation & seeing it in your rear view mirror. Any news yet on the topical script? And more importantly, any news from SS yet on your hubby.Something to be on the lookout for, the money is put in your all's checking account, start keeping any eye on it. My money was deposited 2 weeks before my award letter showed up. This happens frequently & am praying this goes through for you all too. Personally, I think the atty should have had you present at the hearing. When a wife came with a spouse here to a hearing the judge would ask if that was the spouse. Basically asked about the spouses daily activities & limitations. A spouse can make an excellent witness.

Keep me posted!!

Nothing has changed regarding all the confusion with my HR dept, LOA, LTD, Aetna ins, etc. Problem after problem to look forward to dealing with. Plus a new one-- the main drug to treat my GBS (Horizant, which is Gabapentin plus something to minimize the side effects of Gabapentin--this is for the nerve damage), Aetna is denying covering this drug. How can this be? This is THE drug to treat a very serious and painful, life altering disease!!!!

For some good news my breast and armpit area are healing nicely from the radiation. No more open, bloody areas! Yeah! Nothing is looking scaly or peeling, it just looks very sunburned. Whether this will just fade away in time, or still peel as sunburned skin tends to do, time will tell. I am just so relieved not to have the open, bloody areas in my armpit that were rubbing all the time.

I went to my onc on Friday just to give blood, and I go in today for the results (this was a more comprehensive blood work than they usually do, the results of which are ready in a matter of minutes.)
So hopefully there won't be any of this "well your blood work shows your liver enzymes are high, so you need at CT of your liver", which happened before one time.

I want to question her as to the efficacy of my chemotherapy since it was cut short. When I was getting the Taxol (supposed to be 12 treatments, one a week), that's when I had to stop after just 5 treatments, first due to getting pneumonia, then due to getting GBS, and I was not allowed to continue with the chemotherapy. Hopefully the amount of chemo I did receive was enough to kill any stray cancer cells....or else what was the whole point of it?

I'll write more when I know more!
Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/17/2017 11:33:43 AM (GMT-6)