new to forum, diagnostic mammo and ultrasound found large lumps

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straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 10/30/2017 11:06 AM (GMT -6)   
E, the countdown is almost here, within hours!! Tomorrow is the big day. I am sending you many healing thoughts & prayers your way. Yes, you are on your way to the future as you once pictured it on the physical side of things.

I don't know if you have any visits with the counselor or not. If you do, perhaps this is something to discuss with her. If the post traumatic stress doesn't lighten up soon, please consider seeing a psychologist. Talk therapy can be great as long as you click with the counselor. I was fortunate that I clicked with my lady after the first visit. First visit was a little difficult as I had no idea what to expect. I can't say enough good things about what a help she was to me. Something to consider before the new year rolls around with more deductibles to deal with.

Will be looking for an update when you feel up to writing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
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Date Joined Aug 2016
Total Posts : 199
   Posted 10/31/2017 10:00 AM (GMT -6)   
Well, I am up to writing right away as the surgery was postponed until Nov 2! Which I did not find out about until late yesterday, and was NOT happy about. You get in a certain mindset about having surgery, bag packed, advanced directive filled out.....all my friends had come over in the last couple of days bringing small gifts and wishing me well, etc. And BOTH of my sons actually called yesterday! The one who was essentially off the grid, found his way to the grid to make a phone call, so that made me really happy. His call came in the morning before I knew the date had been changed. The reason given was that the hospital had just opened a new surgery tower, which I had seen was under construction for quite some time, and they just didn't have it quite ready yet to handle all the scheduled operations due to construction delays with Hurricane Irma.

So, I pigged out on brownies and other goodies that were here with 2 girlfriends who were at the house when the postponement call came in, and now I wait 2 days. It'll be here before I know it, but i was NOT happy when I first got the news.

I have really connected with the counselor I am seeing! She is great, and she is the one who actually labeled how I am feeling about my previous horrendous hospital stay as Post Traumatic Stress. I didn't realize that's what it was, but it makes sense. I've also gone to the women's group cancer counseling sessions as well. The counselor is there but stays out of it for the most part. The women just go around talking about whatever issue of their cancer they are currently dealing with, and everyone offers their support, or has answers to their questions, etc. It's a very helpful group. I've learned a lot about other peoples' cancers, only half of which are breast cancers.

Soooo, I get to wait for a couple more days and hopefully not overeat through my discouragement, lol.

I hope you're doing well, Susie, and that maybe cooler weather is heading your way.

Positive thoughts and best of health to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 11/13/2017 3:12 PM (GMT -6)   
Eleven days ago today I had the surgery done to remove the defective, leaking expander in my right breast and had a new one that is fresh, lovely and with the stamina of youth, replace it. (sounds like a Trophy implant, LOL).

I spent just the one night in the hospital, and spent most of the rest of the weekend resting. Apparently my rest did me no good, as not only did I come down with the start of the horrible, hacking cough, just like with last year's bout with bronchitis and then pneumonia. And that fills me with dread, knowing that a iittle cough could turn into one of the horrendous diseases ever-- Guillain Barre. I got the drain out today, which is such a positive step. Having that clear, plastic "football" connected by about 2 feet of clear tube is such a hassle. Having the tube get caught accidentally on something REALLY hurts, and you have to remember to drain it several times a day into a measuring cup and note how many ml are coming out of the drain each day. Having the tubing and the football (which you ciip to a piece of your clothing) really limits what can be worn, also. I won't start getting my fill ups for another couple weeks, though.

straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 11/16/2017 12:16 PM (GMT -6)   
E, so glad to read the surgery went fine. Now here is to looking at getting the final steps behind you. Oh boy, I do hope you will or have seen your dr about the hacking cough. You do not need any more set backs!! So glad the tubing & drain are out. I have hit the pain pump that is implanted in my stomach, wow, it gets my attention believe me. I very much understand what you are talking about.

Keep us posted!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 11/20/2017 2:43 PM (GMT -6)   
E, just checking on you!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 11/20/2017 4:14 PM (GMT -6)   
I am here! It's been about 2 1/2 weeks since the surgery to exchange the failed tissue expander. i ended up having to stay in the hospital overnight, strictly because of GBS. They had to do my anesthesia differently. And apparently the drugs they gave me were quite long-lasting, as for at least A WEEK after I returned home my husband kept telling me I wasn't making any sense. And I know he was right, I can remember now. And I found texts on my phone that I made to folks a few days after surgery, and there were paragraphs and paragraphs of complete gibberish. Also, for a week I was quite wobbly on my legs. I'd start out in one direction and go heading off sideways. All that has passed now, but it has alarmed me, as in the meantime I have read that surgery can set off a relapse of GBS.
And although I thought my port removal was going to be done a long time ago, it is not scheduled until 11/29, and I am freaking out that GBS will resurface. I've had a bad cough for the last 5 days. It is starting to get better. Since my surgery is only 9 days away I am not going to go to any public places-- shopping, out to eat, etc, even if i feel good. I just cannot take a chance on getting someone's germs and then being sick and having a procedure delayed again.
I am seeing the counselor again tomorrow, as I really do think I have PTSD from my hospital stay for GBS (I'm still not able to go public here yet). The morning I was checking out of the hospital from this last surgery for the expanders, a counselor came by to check on me. I had met him before, as he counselled me over a year ago at my surgeon's office the day I got my cancer diagnosis, and we started talking and I ended up telling him what happened during the "bad" hospital stay, and about the nightmares and thoughts I have now, and he said "what you've described is PTSD". I had no idea it was so obvious! But I've got to get over it..... i'll be in a hospital in another 9 days and I can't have these fears tearing me apart.

All for now. Time to do what little exercising I can do at this point.

straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 11/20/2017 4:32 PM (GMT -6)   
So, so glad to hear from you. In your prior post you said the coughing came back & like you the pneumonia loomed in our minds. When I didn't hear back naturally my mind started wondering. Thank goodness you are ok. Yes, I totally agree with you about playing things safe & staying away from people until you get your port out. I still have my port, my gosh it was put in back in 2004. I have lost a good deal of weight since then & once in awhile it bothers me a little. Of course with it being in so long I will opt to just keep it unless I were to have problems.

Oh, I do think I would find out what the anesthesia medication was they gave you. That would be something to ask about, you really need to know that. Some of that stuff can really leave some lingering side effects such as what happened with you.

I am very glad that you got to talk to the counselor. It would be nice if you could get some help with this, just some talk therapy. It can manifest itself in different ways.

Happy Thanksgiving. Breaking all the traditions this year, we are eating out. Husband is not too happy but I am not physically able to stand in the kitchen for 2 days & cook for 12 people. I am not even going there with it.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 11/26/2017 11:42 PM (GMT -6)   
Howdy. I hope everyone enjoyed their thanksgiving weekend. I have gone no where— just staying in the house, getting rest, lots of fluids, and extra vitamin C. I don’t want anything to happen to me that would lead to a postponement of having my port taken out.

Besides the irregular shaped bump that clearly shows through the skin, having the port removed is a major reminder that I am finally moving past cancer. The only reason for the port was to receive chemo IVs, and those days are in the past! That minor surgery is on Wednesday, but tomorrow I have an appointment with my PS and I should be getting my first “fill up” in my new tissue expander! Yeah! I remember how elated I was a year ago when I started to get fill ups and watching my reconstructed breast begin to grow and make me look closer to my pre-cancer days!

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 11/28/2017 2:43 PM (GMT -6)   
I went to the PS on Monday and did not get my fill up sad
There was a reddish area on my chest near the port and fill up site, and she thought I may have another infection. I finished my 2 antibiotics that I got after surgery on 11/2 about 5 days ago, and that is when I first noticed the red area. So she drew with a purple marker around the red area and I am to report to her if it goes past that boundary. I asked if I'll be getting a refill of those antibiotics, or any others, and she said no. As long as it doesn't go over the boundary, it will probably resolve on its own by the time I see you in a week. IF IF IF it goes over the boundary, I am to call at any hour and I would go into the hospital for IV antibiotics.
Good grief.
This also meant cancelling the port removal surgery that I was supposed to have tomorrow!

Lesson---which I have been taught repeatedly throughout this cancer journey, is--you cannot count on dates. Stuff happens to delay your treatment and/or recovery process all the time.

Plus, my recent blood work showed elevated liver whatever and I have to get scheduled for an abdominal ultrasound. This is by order of my PCP. Several months ago my onc saw the same whatever on my liver , per my blood work, and from her I got to enjoy a liver CT scan. Which, of course showed no problem.

Another lesson--once you get cancer, if your blood work shows even the most miniscule deviance from the norm--- you go for tests to rule out whatever.

straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 11/29/2017 12:25 PM (GMT -6)   
I know it is of no consolation whatsoever, but I have heard it said from some friends with cancer, you simply cannot attempt to predict anything. Counting on dates falls into that category. I am not sure what antibiotics they have had you on but please keep in mind the antibiotics can not only destroy the bad flora in your gut, but the good flora that we need. Lesson I learned having crohns. I am often on them & have issues with diarrhea & terrible stomach pain. Now, regardless I take Floraster an OTC probiotic & eat yogurt.

I too have the bump on my right side of my chest from the port. I have lost quite a bit of weight & it is really prominent & you can see it through a t-shirt.

We had Thanksgiving lunch out. There was 12 of us & I really enjoyed it. We had great food, I was not exhausted & actually enjoyed eating. My husband, omg, he griped & carried on to his buds for days over that. All I kept hearing was I am 72 yrs old & have never eaten Thanksgiving out. I had to laugh & walk outside. One of our close friends laughed because their family did the same thing & totally enjoyed it. I warned him last year that was my last dinner I was cooking. I cooked for 2 days, had to take food to my daughters because I did not have room in my refrigerator & it was a true hassle cooking for 12 people. I spent 3 days in bed & was not worth it. If I was younger & in better health sure I would have cooked. But those days are over.

Hang in there before long you will have all of this in your rear view mirror. I am glad though that your dr is taking precautions.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/1/2017 3:34 PM (GMT -6)   
Well. The coughing is continuing. Up to the point where I feel like I'm going to black out. That feeling happened last time, when it ended up turning into pneumonia. But it doesn't continue on for more than a few minutes, whereas before my coughing fits lasted anywhere from 20 minutes to over 3 hours. The morning after my surgery I had a chest CT and it showed no pneumonia. Looking at my previous posts, it looks like my coughing started around Nov. 15, so I am filled with fear and helplessness.

The infected, red area near my surgery site has not spread, but it has not gone away, either.

Here is a lesson for everybody-- get every vaccine that is out there! When I found out I had cancer, I thought I was doing everything I could by getting a flu shot and a shingles vaccine. I IGNORANTLY believed that to get pneumonia, you had to get the flu first. So, by getting a flu shot, I thought that meant I wouldn't get pneumonia either. WRONG WRONG WRONG

Everybody please get both a flu shot and a pneumonia vaccine. If I had gotten both, I (most likely) would not have gotten pneumonia back in March, and I never would have gotten GBS. And now that I have GBS, I can never get any kind of vaccine again. This is what I've learned through websites and forums, however I still am going to confirm it with my neuro. But overwhelmingly, all the other poor souls who have gotten GBS have said they were told no vaccines of any kind.

And onto a much less serious subject than pneumonia and GBS, I wanted to report that my hair is maybe 2 inches long... which is not good. Most people probably would have 4 inches by now, but I have made my peace with it. The thing I really wanted to say was that it grew back exactly what it looked like before--blond, a little wavy, and the same texture. I've heard so many folks say theirs grew back differently.

Oh--remember I said after my Nov 2 surgery I was "loopy" for at least a week?, which normally after surgery I only stay that way a few hours or a day at most. I posted about things my husband said I was saying that was all messed up, and about really bizarre texts I sent people. I had an appointment with my neuro yesterday, and was sitting in the waiting room, and the PA passed by and did a double-take at me and exclaimed "Oh, I'm so glad you look so much better today! I'll be with you in a moment." I had NO CLUE what she meant. I remember my last visit there and I was doing and looking pretty well! So, I assumed she had me confused with someone else, afterall, it had been awhile since I'd seen her. We get into the patient room and start talking and after a few minutes she realized that I did not remember that I had an appointment there on Nov 8-- that my PS requested I see my neuro right away as I was so out of it. She told me about the whole visit... I could barely stand up, I was slumped over in the seat, too weak to sit up straight. I was very weak and had extremely low blood pressure. But I had no cough at that time. This is so bizarre to be told about going to an appointment and saying and doing things of which I have ZERO recollection. AND, my husband told me that on Nov 9 we went to lunch at a restaurant and I ate an entire Philly Cheesesteak sandwich. I would NEVER order a PhillyCheese Steak, and I am kind of a dainty eater-- I don't eat any kind of biggish sandwich out in public. I keep asking him if he's pulling my leg, and he has made it clear that he is not. This is kind of funny! But I'm definitely going to have a talk with my doctor about the different anesthesia I had this time. What if I didn't have a husband who is home 24/7? Hospitals release you as long as someone says they are going to be with you for the first 24 hours. Without my husband home, I could have been going out and saying and doing God knows what!

Post Edited (exqualls) : 12/1/2017 1:41:50 PM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/4/2017 11:50 PM (GMT -6)   
Miraculously, I woke up this morning and all the redness near the surgery site was cleared up! I was able to get a fill up! I saw my flat, right chest area grow into a small, A-cup bra, boob-like area! Woohoo! I'm so happy to start moving on with reconstruction after SO LONG! ALSO, miraculously, my cough is 95% improved!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/6/2017 5:58 PM (GMT -6)   
Today I had my abdominal ultrasound, ordered because my blood tests revealed something abnormal with my "LFTs" I think it was called.. something to do with my liver. The biggest part of me has felt that all these other tests that have been ordered ever since I was diagnosed with cancer have been a waste. Maybe waste isn't the right word....the doctors ordering them are trying to rule out problems. I guess I mean that I feel that I know the results will all come back as showing nothing.

Remember, I was healthy as can be for 57 years, never having to go to the doctor except for sports related injuries that were always treated and resolved 100%. Well, I THOUGHT I was healthy-- there was breast cancer lurking. But then I thought with cancer there'd only be surgery, chemo, radiation, reconstruction...ta da! Back to my normal, very busy with sports activities life. But if the hideous GBS hadn't gotten me, just going through cancer makes you wonder if you're even sicker, because with blood tests every week during the months and months of treatment, any abnormality...even a really tiny abnormality that normally would not even alarm your PCP....will cause a test to be scheduled. I feel like every part of my body has had xrays, ultrasounds, CT scans--with and without contrast--all which came back normal (thank God). But always being sent for tests can make a person FEEL like a sickly person.

Tomorrow I am going for a consult about getting a colonoscopy, because I am just slightly anemic, and have been for a long time. Well, I have a crappy diet!! I rarely eat meat or other foods that are rich in iron. I take an iron supplement, and that's probably what keeps me being only "slightly" anemic. Over a year ago one of my doctors ordered one of those at home colon test kits....So, the testing company sent me one... I sent back my sample and they said it was normal. (And the insurance company has refused to pay the bill for it! Almost $500. WHYYYYYYYY would they refuse?? I'm over 55, a doctor ordered the test..... why refuse? We've been battling over a year with Aetna about this. They denied my husband's as well.) Anyway, it's my cardiologist that is suggesting I get a colonoscopy.....(I have a heart doctor now, even though I'm sure my heart has always been particularly strong because of decades of various aerobic activities, because the EKG or Echo, or EEG or whatever test ordered by my onc, which is mandatory before starting chemo, since the chemo can damage your heart, showed the slightest abnormality).... So I tell my cardiologist that the home test kit for colon cancer came back negative, and he says that just means that one particular sample has no blood in it... the gold standard for testing is the colonoscopy, and I've been anemic for over a year, so where is the blood loss? I am frightened about getting this test done, which I'm sure must be several times the cost of the home kit, since Aetna denied paying for the first test. I'm going for the consult tomorrow and expressing to the office manager my concern that she makes sure she confirms with Aetna they will cover this. Supposedly this was done with the home kit, but we know how that turned out.

Previously my fill ups for my tissue expanders for my breast reconstruction were done one week apart. When I got this one done on Monday, she said she was going to wait 2 weeks before doing the next one, to make sure my body accepts it and there's no unforeseen reactions. So GBS is going to slow down how fast I get fill ups. I understand but it's frustrating. I am SOOOOOO blessed to be 90% recovered from GBS in such a short time, there are many more horror stories out there of people with GBS that last years and years with complete paralysis and living on a ventilator. However, I am realizing that for the rest of my life, just having had GBS will always affect me. I run the (low) risk of it just spontaneously returning, and the somewhat higher risk that any future surgery could trigger it, or ANY virus, that I ever get, for the rest of my life, can bring it back. And i'm going to be more likely to get sick in the first place as I can never get vaccinated for anything again!.

One more GBS story.... last night while watching TV with my husband I suddenly screamed in pain, and began sobbing profusely, tears streaming over my face. Of course my husband paused the show and rushed to my side and asked what was going on. I told him someone just took pruning shears to my right foot and cut off my second toe...... I was WAILING as I was saying it, as the bloody stump where my toe used to be was killing me with pain and throbbing. For the first time when one of these odd nerve things has happened, I did NOT take the blanket off my feet to reassure myself that it really hadn't happened. Two sides of my brain fight each other. One side received nerve signals that could ONLY be interpreted as the pain of having a toe cut off with pruning shears, and the other side, that has visual control, is saying, "Girrrrrl, you're in the safest suburb in Florida, and NO ONE invaded your home and is going at you with pruning shears!"
So I didn't look, but I did get my husband to get an ice pack to put on the "wound", and it took about 20 minutes for the sobbing to gradually subsist, and my foot to be numb from the ice.

Post Edited (exqualls) : 12/6/2017 9:39:58 PM (GMT-7)


straydog
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Date Joined Feb 2003
Total Posts : 16418
   Posted 12/7/2017 10:46 AM (GMT -6)   
E, you have been on a run away roller coaster for a long time. You have held up amazingly well in spite of everything that has happened. However, everyone has their breaking point. A lot of people can react well in a crisis & have everything hit the fan later. I think letting it out & not trying to always be the strong one is acceptable. I can't fathom what happened with your toe last night, how horrible.

I am pretty sure the insurance will pay for the scope without a problem. The dr is correct about it being the gold standard. The scope is a breeze its the prep that is the pits. The test you did insurance company's do not find them to be credible.

Today feels like winter here, in the 40's & will be in the 20's tonight, ugh I am not ready for this.Let me know how the appt goes today. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/10/2017 5:59 PM (GMT -6)   
We finally have cool weather here in Florida, which I love! However the 10 day forecast has us back to the mid 70s by the end of 10 days. I absolutely HATE IT if it is warm on Christmas, so i'm hoping for another cold front to come through.

I haven't received any news about my abdominal ultrasound, which I am presuming means it was normal. The doctor would have the results by now and if there were an abnormality they would have called me. And, surprisingly, when I went for the consult to the gastroenterologist to consult about getting the colonoscopy, he reviewed all my medical history and said he did not think I was a candidate for the test, just because I've been slightly anemic for a year. He said I could do an at-home test where I smear stool samples on 3 cards, from 3 different days, then bring it back to the lab for testing. So, i will turn in those tomorrow to the lab.

Remember I had begun making progress with my 4 little exercises I use to do daily, pre-cancer. Well, once I had the Nov. 2 surgery to exchange the defective tissue expander, that put a halt to my exercises for a couple weeks. And also I've been battling this cough AGAIN, which is triggered when I talk or move. SO, in the few minutes here and there when I'm not coughing I have attempted the exercises and I have lost so much ground sad. I can only do 3 push ups. My splits are so unimpressive. The abs I can still do 50 crunches, but the last ten are a real effort. But that's okay. I am willing to put in whatever effort it takes to get back to my pre-cancer lifestyle. However, unless the last 5-10% of my nerve damage in my feet and hands recovers from GBS, i may NEVER get back to a pre-cancer lifestyle. Doing the ten-point balance routine, I remember before surgery I was so happy that I made progress to the point where I could pivot and not have to reach to the counter for support. It wasn't without wobbling, but it was a hugely satisfying milestone to reach. Now I have regressed so much I need support after a couple seconds even from the starting position.........so there is a long road ahead of me.

This cough is really annoying, and limits much of what I can do, or say. But I don't WANT another xray or CT scan of my chest.......I've lost count of how many I've had in the last 16 months. I am taking Delsym and extra vitamin C, but apparently that is not enough. I DON'T want to go to the doctor over a cough. I DON'T want more xrays or scans over a cough. I am so sick of being tested out the yingyang over everything.

Planning for Christmas is especially stressful and depressing because my 23 year old son is "off the grid"....Rather than pursuing education all the way up to a PhD, which was always his own plan and desire, until the last couple of years, he does not want to be part of the world at all, in the way the most of us are. No possessions, no phone, no home, no money. I am sobbing as I write this. I know kids grow up and move away sometimes, and sometimes can't make it home for Christmas. But that's not what this is. He possibly won't even be aware of when Christmas day is, unless he is scratching off tally marks for the days and months that he's been living in a hut he built somewhere in a 240 acre forest in Northern Virginia. The hut has no heat (or a/c) or mattress or anything. And it is snowing there! I literally start to lose my mind when I think of what could befall him, and I am so worried as to WHY he suddenly switched from being a PhD candidate who knew the career path he wanted and lived the totally normal life of a college student, to being what he is now. I can't take it. But I've mentioned "issues with my older son" so many times I figured I would fill in the blanks. We were always SOOOOOO close. And to change into a totally different human being who does not want contact with "the world" at all, it's a stress that sets me off into crying jags several times a day as I prepare for Christmas. Every decoration we did together, every decoration has a memory of the time and age he was when we either made it or picked it out at the store. I have to stop.

On the positive side, my 22 year old is coming home on the 17th. I haven't seen him in 5 months, as he's been in DC for law school. On the 18th I get my port removed, which is out-patient surgery, and I've got appointments with various doctors that whole week before Christmas. I want to try to make his homecoming as normal and happy as possible. He has described his first semester of law school as extremely stressful, and his days are full of studying 12 hours a day, every day. Our house has always been VERY festive at Christmastime, with many food and decorating traditions that involved both sons. It's just so hard to be Mrs Happy Happy Happy, when a part of me is filled with so much grief and worry over his brother.

Okay, sorry, I got WAY off the subject of this thread which is breast cancer.

Post Edited (exqualls) : 12/10/2017 4:07:11 PM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/15/2017 1:18 AM (GMT -6)   
Susie, I hope you're doing okay, keeping busy and no health issues keeping you down.

I am in a remarkably good mood for someone who has as many BIG problems as I do. And I am giving credit to the counselor, whose free services are provided by the hospital where I had my mastectomies. She has helped me in so many ways to deal with the extra stress that I feel during holiday season. I'm not saying this to brag "hey, I'm happy!", but to remind anyone reading that their hospital may offer this free service as well. And with all the expenses we go through with cancer, it is a joy to finally get a well-needed service for free. I know there have been other free services offered also, that I didn't, or haven't yet, taken advantage of. Once a year there is a weekend retreat! There are also the make-up lessons and free make-up products (top name brands), to learn how to do your make-up after you lose your eyebrows and eyelashes, and discounts on permanent "tattooing" if you choose that. Which I did. I kept missing all the scheduled classes for make-up tips, and even though I've always been pretty adept at make-up, I just could NOT master drawing on eyebrows, or lining my eyes to make do for the fact there are no lashes. And when my eyebrows finally did grow in, they grew in patchy, and that looked even worse. So I went for the permanent brows and eyeliner and it was a great decision!

My Aetna health insurance has given me much to complain about, rightly so, but one thing they do right is offer a free wig each year....not sure for how many years. But I got my first wig in Nov 2016 and it was covered 100%, and it was an expensive wig. And now that a year has gone by I am eligible to get another one! Which, sadly, I do need a new one. One of the things that make a wig more costly is how they look at the scalp line. The good ones have an almost invisible fabric that has just a subtle and sparse amount of hair until it gets thicker about 1/3 inch in, which is how a real hairline looks. But that invisible fabric with the sparse hairs is also fragile, and with brushing it begins to come apart. In another forum a woman wrote that she was one of the extremely rare people whose hair NEVER grew back after chemo, and therefore she wore wigs almost 24/7 and said a good one can expect to last 8 months. When I first read that I was really surprised. I kinda thought wigs lasted forever! I don't "over brush" mine, and I don't wear it 24/7, so I guess that's why it's lasted 13 months instead of 8 months. Anyway, I have ordered a new wig which should be in next week.

Yesterday I had blood work done for my onc. (and just a couple days before I had blood work done for the cardiologist...bleh)....Anyway, I was surprised and disappointed to see that my WBC was low. Normal is 4.2 - 10, and at my last blood work at the onc's it was 9 point something. I THINK before chemo started my WBC had been like 16 or something. So here I haven't had chemo since FEBRUARY and yesterday's test showed my WBC was only FIVE. A measly FIVE. So I don't have many white blood cells to fight off infections, during the most infectious time of the year. And I have no lymph nodes in my left arm, so if I got a cut or insect bite or whatever, in my left arm, I have no lymph nodes to rush to my defense. I'm not really sure what lymph nodes do, lol, but I know it has something to do with getting rid of anything bad that enters your body. No lymph nodes and a pretty low WBC makes me feel so vulnerable, which I CAN'T STAND. Pre-cancer me had always been fearless--one of my most defining traits. But I don't think post-cancer me can be that way anymore.

Well, it's late here so I'll stop now. Best of health and positive thoughts to all.

Post Edited (exqualls) : 12/17/2017 2:56:09 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16418
   Posted 12/17/2017 11:09 AM (GMT -6)   
E, I do understand what you are going through with your son. My daughter had a drug problem for many years. Rehab was a joke. Fortunately, she straightened up but it was one of the most difficult times in my life. My biggest fear was her getting killed or OD. She held a full time job during all of this, unbelievable as it sounds. Now, many of those kids are either dead, prison, not many got clean & are still doing it. Yes, I know every feeling you described. She now says how did you survive me.

She got married to a guy & they were divorced after 15 years. He had a little girl 2 1/2 yrs old when they met. I later learned things were really bad between them, she stayed because of this little girl. The mom has bad mental issues & they took her to court & got custody. It took nearly 2 years. My daughter was not able to get pg. Over this 15 year span the bond between her & this girl is like mother/daughter. This just happened on its own. Now this girl is 23 years old. No drug problem, thank God but she got to experience what it is like raising a kid, lol. She says mom she will never grown up, lol. They have remained very close even with the divorce. We just love her thats all we can do. She comes around all of us like before. Her dad remarried & new wife hates us all, but dad is happy the relationship remained with my daughter. He has no clue what to do with a girl & never did.

The weather has been cooler here & my body is not very happy. I got a flu shot Friday & by evening I had an extremely sore arm. That night my husband kept bumping it & waking me up. I did not feel too good yesterday & slept for quite a bit. I took an Advil & went to bed. Today seems ok.

I am so glad that you are doing better. I am so happy that you are documenting your journey here. I have not checked to see how many views you have this far. The last time I looked it was over 11,000 people reading your story. I know somewhere you helped many people a long the way. I do hope you will take advantage of everything you can that is offered free. That is fabulous your insurance will pay for a wig yearly. The good ones are super expensive but worth the money. I am sure that yours lasted much longer because like you said you did not wear it every day. That makes a big difference.

I know you don't like being shut in but you simply cannot afford to get sick. Unfortunately, people will go out sick & never consider they are spreading germs. Warm climate breeds germs is what my mother use to say, lol. This is why I do my shopping online to avoid sick people. I ran by Walmart to get coffee & filters the other day, people & kids coughing & hacking. All I could think was oh hell, get me out of here. I drink the EmergencyC stuff daily. My grandson & his mom do so too.

I have to get busy today & get some things done. For the past 6 months I have been battling having dentures made. They have made 2 pair to date. I have a small mouth & the trays they use to make impressions are too big for my mouth. They small is too big. I picked up new ones Thursday. I am so upset, they are loose. I know dentures do not replace normal teeth. I need to be able to chew, I am tired of swallowing food whole & choking. I have lost so much weight, I can't afford to lose any more. I keep spending money on jeans because of the weight loss, its crazy. Even my drs keep commenting on the weight loss. This has done such a mental thing to me, now force myself to eat something. My husband is not happy because my appetite is not good. I was so upset Thursday when the new set was so loose. Adhesive will not hold them in place but 2 hours then they are flopping again. I had to leave the other day, I felt that terror coming up the back of my throat. It was that scream that was trying to form. Paid way too much money for these dentures to fit like this.

Please stay well, you have already hit too many speed bumps!!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16418
   Posted 12/26/2017 8:41 AM (GMT -6)   
E, I am just checking on you. You have been on my mind.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 12/26/2017 9:12 PM (GMT -6)   
Hi Susie,

I have been miraculously busy with BOTH sons being home! Out of the clear blue, my "lost" son called and asked for a plane ticket home for Christmas! We were thrilled beyond belief, of course.
At first he said he wanted to return to his forest habitat on 12/26, but then said on Christmas he'd like to try it here 30 more days, but he'll have to make some adjustments. We were all pretty busy with Christmas shopping and cooking and decorating and crowds, and he is used to total solitude. So he's not going to go out to eat with us every time, nor go after-Christmas sales shopping. That's okay!

How was your Christmas? I hope you followed your Thanksgiving advice and did not wear yourself out.

I had my post port removal appointment today, and everything is healing well, I am told, although there is still bruising 8 days later and the area is still swollen. I was hoping that the second the port came out, that area of my chest would be perfectly smooth and flat, and it is not. But the doctor thought it looked all totally normal. I can't believe you still have a port in! But maybe after so many years it just becomes natural that there is a bump at that location on your chest. I had my second "fill up" with the PS, and that was exciting. But there will be a 3 week interval before the next fill up due to her vacation schedule. On the one hand it's disappointing not going weekly, and on the other hand, it's nice to get a break from so many appointments. Just in the 9 days my kids have been home I've had 4 appointments, during what should be the slow, holiday schedule.

Our weather was cold-ish for about 2 days, then went back to the 80s, but now we're in the 70s and then to the 60s!! within the next ten days! I might be able to wear a sweater!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16418
   Posted 12/27/2017 12:53 PM (GMT -6)   
Hi E, what a wonderful Christmas present!! I am so, so happy for you & your family. I can tell reading your post what a lift in your spirit this has been.

I know it will be difficult for your son to adjust being in the hoopla of things. Being in solitude for awhile this visit will be a huge adjustment & possibly overwhelming at times for him. All you can do is give him his space & enjoy your time with him. If he is willing to talk about living off of the grid, I am sure he has many interesting stories to tell. If all goes well, he may later end up back in Florida permanently. We can always hope. I would have loved to have seen your face after that phone call.

Your area where your port was at should settle down in time. Mine looks ugly, sticks up rather high, you can see it through shirts. Depending on the type of straps on bras it can get a little uncomfortable. I figure after this many years there is so much scar tissue involved its just not worth having it removed. If it ever becomes an issue for me then I would check on having it removed.

How many fill ups will it take to be finished? You are at the stage of I want all of this stuff completed & over with. I don't blame you a bit. As my mother would say, things happen for a reason even if we never know the reason.

Our Christmas was different this year. Not the usual hang out day of snacks & a meal together. This is how we have always done Christmas, even after my son got divorced & my daughter. I felt sorry for myself, I don't do change well. I think my son realized his change of plans was not a good one. Hopefully this will not happen again. I did go to a light festival with my daughter & her boyfriend. It was just beautiful & amazing. I did a lot of walking & spent 2 days in bed on a heating pad. However, I would do it again, it was wonderful.

I can't wait to read more about your visit!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 1/5/2018 9:20 PM (GMT -6)   
This will be brief. I'll write more about the kids' visit when I have more time.

The first week they were here I had 3 dr appointments, one of them the very next day, the out-patient surgery to get my port out. The anesthesia went MUCH better than after my Nov 2nd surgery, thank goodness. However the once previously, nearly invisible, scar from when the port was put in, is now very thick and lumpy. At my post-op visit the following week the doctor prescribed a compound cream to be made at one of those specialty pharmacies. The last compound cream prescribed to me was by my neuro, to help with the excruciating pain I have sometimes in my hands..... and insurance would not cover it, so I did not get it. However, to smooth out a lumpy scar, they okay'd that prescription!! I saw on another forum someone say when their insurance wouldn't cover the scar cream, it cost them over $1400! Does this make sense, for insurance not to cover something to ease hideous pain, but wait....i've got some lumpy parts to a one and a half inch scar, let's pay up!! I am dumbfounded.... but still glad they covered at least this.

All I have time for now. I hope your New Year is going well, Susie. And to everyone I wish positive thoughts and the best of health.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16418
   Posted 1/11/2018 9:44 AM (GMT -6)   
E, when you get time please give an update about your holiday!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 1/11/2018 4:40 PM (GMT -6)   
Hi Susie!
This is still going to be a short one. I've been applying the prescription scar cream twice a day as directed and i see no improvement yet. But I have certainly learned patience throughout this whole process. A couple days ago I got my third "fill up" in my right tissue expander. At the time of the appointment I could definitely feel the pressure of the "enlargement" going on, but after I got home and the next day and this morning the breast has actually hurt, where I've had to put ice bags on it. I called the doctor and she just reassured me that the pressure and pain can happen sometimes, and that it will go away soon (in fact today I notice a big improvement, and no ice bags needed), and that next week when I get my fill up she won't inject as many CCs. My breasts are actually almost the same size now!! It is very exciting!!!
Will write more in depth another day.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 199
   Posted 1/14/2018 3:50 PM (GMT -6)   
Hello Susie, and everyone! I wish I knew more "names". I feel like I have friends out there. Which reminds me. Let me introduce myself. My name is Linda!

So, my younger son just returned to DC to law school. He just got his grades-- A+, A-, B+, B+, B+, which I think is great, but he felt really down about. I know he's used to getting all As, and I know he has never tried so hard in his life. He put in many 12-14 hour days studying. He's going to talk to the "2Ls" --people in their 2nd year of law school--and see in what ways he can improve on what he focuses his study time.

My oldest son, who is just one year older, 23, is still adjusting to the constant and various noises and activities going on around him all the time, after spending nearly a whole year practically isolated in a forest. He still plans on returning, which makes me horribly sad. It seems like such a waste of brainpower and education and ...... life...... to just be alone in the forest meditating. His goal in staying past Christmas is to help his dad get on a vegan diet and to exercise more, because my husband is so debilitated by his diabetes. My son firmly believes a vegan diet and increased exercise will, over time, get his dad off insulin,and the other meds he takes. A vegan diet is HARD (for someone who doesn't want it especially, lol). I don't spend much time with my son. No one does, he obviously prefers to be alone. We have had some conversations, and some have been normal and some have been awkward, and a couple even got heated. Because I keep TRYING to understand his life choice and I don't get it. When his brother was here I did hear laughter coming from their rooms, so I'm glad they found some common ground to find humor.

So, I know I wrote that after my third fill up last week my right breast hurt. I thought the pain was going away by the third day, but it really didn't. It took a full five days before the pain was totally gone. And I go again for a fill up in just a few days. I don't think she'll put as much in this time. Also, I believe my left breast may start getting fill ups again-- if not in a few days, then definitely by the next appointment after that!! it is very thrilling to be MOVING ON with cancer stuff!! That stupid GBS really wrecked my recovery.
And, of course, I still do, and always will, have to deal with the nerve pain and numbness I still have in my feet and in my hands. The numbness is improving. I really am so grateful for that, after reading the horror stories of other GBS victims. As far as actually being a GBS victim-- I got off easy!! But it was still the worst 5 weeks of my life being in the hospitals for that. Once i got home it seemed easier somehow to deal with being paralyzed. Anyway....enough about GBS. Once I get started on that subject it's hard to stop. Last thing---i am going to get a tee shirt made up that says I SURVIVED GBS.

I hope I survive cancer. I would feel more positive in my outlook if I had been able to complete my chemo sessions, but I was unable to because of that other disease I won't mention. Hopefully there isn't a stray cancer cell inside me that the limited chemo treatments didn't get.

Best of health and positive thoughts to all.

Post Edited (exqualls) : 1/16/2018 6:55:38 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16418
   Posted 1/16/2018 9:23 AM (GMT -6)   
Good morning Linda!! I know what you mean about the first name. You know just a thought, your son is terribly young & I have to wonder if he is going through a "I need to find myself" type of thing. Perhaps he trying to prove something to himself. This is more common than we realize with people. At 23 he is young enough to live his new life & later change his mind how he prefers to live out his life. He has proven he can maintain with a bare existence. Never give up hope that he may decide to give that life style up at some point in his life. One thing about it, when living off of the grid they have to give 500% to exist or they don't survive. He is a survivor. As mom we have to remember this as hard as it is. How you have described his visit does not surprise me at all, including the heated moments.

I imagine being home & seeing his old life style was pretty much an unraveling moment for him. Living in solitude & coming back to his old life for a visit probably did a real number on his head. He may have thought what was I thinking living this life style & mom & dad are thinking the same thing about him living off the grid. I guess it goes both ways.

Now, about your husband & the vegan diet, lol. Oh boy, your son has his work cut out for him. He has done a lot of studying some where to learn about living off the grid. Even with some of these so called healthy diets, they are lacking in certain nutrients the body needs. Eating a healthy diet is the key but I am out on the extremist. There are some people in the UC & crohns forum that are on various diets & they are convinced they can control the disease with diet. Most people are not disciplined enough to stick to these diets & fall off the wagon. My thoughts are their disease is so mild the meds they were on put them in remission & they are staying away from foods that can irritate the gut. Lots of different theories none proven. Someone newly dx'd gets shell shocked & denial is usually at the top of the list.

We have had members here at HW that has attempted to push their diets on people, I am talking extremist & those people get banned permanently. An example, there was one that was posting in multiple forums telling people your diet is why you have this disease & you are continuing to feed it. There was a mom that posted about her 11 yr old daughter had a deadly disease. She blamed the mom, claimed the food caused it, well that one was banned. We have had a couple hit this forum touting some lady in Az beat BC with diet & provided the link. It was naturally a scam. Send me money & I will provide you with CD's to listen to, lol. My problem with this sort of thing is when people are usually dx'd with with a horrible disease the fear factor kicks in & thinking can get skewed & they often fall for BS like this.

You are so close to finishing up with your fill ups & can put all of this behind you. Seems like it has taken forever I am sure. But you had some big hurdles to jump that slowed things down. Yes, I am certain you have more patience now than ever.

It is bitterly cold this morning. We had an artic front blow through last night bringing rain, sleet & snow south of us. We had some sleet for about 20 minutes yesterday. Not enough to do any damage here. But down south, they got it & usually they do not get it often. It is 22 out wind chill of 5. I do not do cold well. Our normal temps this time of year is in the 50's not this. The wind is still bad. I have filled the feeders with peanuts for the squirrels so they will have something to eat.

Hang in there you are almost there!!
Susie
Moderator in Chronic Pain & Psoriasis Forums
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