new to forum, diagnostic mammo and ultrasound found large lumps

New Topic Post Reply Printable Version
211 posts in this thread.
Viewing Page :
 1  2  3  4  5  6  7  8  9 
[ << Previous Thread ]

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 10/25/2016 12:20 PM (GMT -6)   
I finally got my drains out yesterday (in 2 days it will be 4 weeks since my double mastectomy). I FEEL great, but the doctor says I am still healing and not to do anything, no working out. Exercise was a big part of my life before this happened. The only way I've ever been able to manage my weight has been through heavy exercise (which, luckily, I enjoy). She also put more saline in my tissue expanders. I am obeying the doctor's orders and doing almost nothing.

My mammaprint test will not be ready until Oct. 31, and there is the slim, nearly miraculous chance that the test could say I don't need chemo. But chemo is set to start Nov 7, so we are proceding as if that is the case. I see the oncologist's PA later today for something, not sure what. And the nurse from my surgeon's office called and said the "tumor board" had met and discussed my need for radiation and concluded I "might benefit from radiation"....Really? MIGHT? What kind of wishy-washy statement is that? I went ahead and made an appointment with the radiology oncologist for 2 days from now, but I am going to have to hear "compelling" reasons to add radiation. I mean, supposedly they got all my cancer with the surgery. I'll be (most likely--I'm planning on it, anyway), having months of chemo treatment to kill any stray cancer cell that MAY have wondered through my body. I need to hear more than "might"!!

If anyone reading this can offer any insight, please do! I'm all alone in this, basically, having never known a person who's ever had cancer. So everything is new to me. Since my diagnosis, I have discovered that a friend from work went through this a few years ago, and my dental hygienist. But I truly welcome input from all.

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

Post Edited (exqualls) : 10/28/2016 7:10:59 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 10/28/2016 3:31 PM (GMT -6)   
i had the appointment yesterday with the radiology oncologist. I've seen a lot of doctors, especially recently, and this woman was IMPRESSIVE. The second she walked in, without even my chart or file on her, she knew EVERYTHING about my case. When I would ask questions, she would reference the answer based on facts that were specific to ME alone; like the fact that I was a grade 2, or that my ki-67 was 48%, and that though my margins were "clear", it was only by 1 millimeter, and although i only had one lymph node with cancer, that it had "nearly escaped the node capsule". Unfortunately I am in the "grey zone".... if 4 or more nodes had cancer, or if it had spread to the chest wall or anywhere else, then yes, definitely need radiation... if zero nodes, and no other spread, definitely no radiation. One to three nodes is the grey zone. The gist of the visit is, of course, that she recommends I have radiation, 30-33 treatments.

She went over the side effects, the sunburn, which could range anywhere from redness to blistering and peeling, and fatigue. There's a small chance that the radiation can damage my thyroid gland, due to the proximity of the thyroid to where the radiation beams will be aimed, which would lead to hypothyroidism. There's 5% chance that the radiation will cause a totally new cancer. And there is a 20% chance of getting lymphedema. I knew I was already at risk for that since I had all my left axillary nodes removed. I didn't think to ask if the radiation makes my risk 20% higher than it already was from the surgery.... I'll have to look into that. I need to find out more about lymphedema as well.

For some reason I had it stuck in my head that after chemo, I will be about 95% sure that the cancer won't come back. I don't know where I pulled that number, but it was what I'd been considering as gospel. According to this doctor, with chemo alone, I am 80-85% clear. Add in radiation, and it goes up to 95% clear. I spent a couple hours searching online for statistics, and they are all over the place. One site will say 65%, another will say, 75, or 83,...... lots of numbers and none of them approached 95% cure rate from chemo alone. Also, none of the sites were organized in a way where a person could view stats based on the facts of their particular cancer.

I don't need to decide right away if I'll add radiation after chemo. I have time to do research.

Money is a factor, unfortunately as it is for almost everyone! I just recently reached my maximum out-of-pocket for health care costs for this year, so I am no longer having to pay my $75 co-pay! Yeah! But that will end Dec. 31, 2016, and I'll have that multi-thousand dollar amount I'll have to be out-of-pocket again. The chemo alone is scheduled to continue through April, 2017. If I add radiation, that would take me through June. Oh, and having radiation means that my final breast reconstruction would be delayed --she said I'd have to wait 6 months after the end of radiation before doing reconstruction. So now I'm into early 2018 to have the reconstruction, and once again having the thousands of dollars out-of-pocket! My head is spinning. Time to do something relaxing. I can't think about my cancer anymore today.

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

Post Edited (exqualls) : 10/29/2016 10:22:03 AM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 10/30/2016 11:03 AM (GMT -6)   
I realize why I write everything here, and it seems like no one else feels the need to: I don't do Facebook! I am a neanderthal, practically no presence in social media. I started to do facebook a million years ago, because i am a naturally chatty person, but I soon became addicted. So I stopped altogether.

Probably the majority of women who are dealing with breast cancer are on facebook, and the majority of them have posted that they have breast cancer. Their news spreads, and everyone in their social sphere, present and past, learns of it, and supportive feedback comes in from a multitude--a dozen, maybe a hundred or more, people. I have only told my three closest girlfriends, 1 work friend, and my dental hygienist. I have no family besides my husband and children. No parents, grandparents, aunts, uncles or cousins. So when I feel like I need to "not be alone in this", I come to this page and type. To strangers or to no one, it does not matter. Since I've shared the information with so few people I choose not to inundate them with every single detail and every single emotion I'm feeling.

I share with them, but not just as much as I probably need to, because I don't want cancer to be my only topic. So I'll say a little to my 3 besties, and then type away here.

Thank you, forum, for existing! LOL

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/2/2016 3:52 PM (GMT -6)   
Well, I should have been able to predict this: the mammaprint test came in JUST BARELY on the side of not needing chemo. The range of chemo being recommended is -1.0 to 0.0..... the range for chemo not being needed is 0.0 to +1.0.
My score is .097. *sigh* Technically that is in the "does not need chemo" range....but just barely. And according to my oncologist, that score does not sway her into believing I won't benefit from chemotherapy. SOOOO, chemo will begin in five days. I've heard average time for hair loss is 17 days... that will put me bald on Thanksgiving day. And I will be truly thankful.

Also, I saw my plastic surgeon today, and although the radiology oncologist said my reconstruction has to wait 6 months from the date of the last treatment, my PS says she waits an entire year to get the best results. So, that takes care of that. It won't happen until approximately June, 2018, so I'll definitely have to incur that $$$$$$ insurance out of pocket deductible again.

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

Post Edited (exqualls) : 11/3/2016 3:18:14 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/3/2016 9:10 AM (GMT -6)   
I have to add something about my "hair outburst" from a few days ago. The same day I posted here how emotional I felt about the inevitability of baldness followed by short hair for a long time--I also shared those same emotions with one of my sons who's away at college. He was quite sweet and said he understood how emotional it will be to lose my long hair that I've always been proud of, but he disagreed about how I relate the look of extremely short hair on women as a symbol of them "giving up". He said I should see it as the opposite, because when I go bald, and then eventually go through months of having extremely short hair, it will be because I specifically have chosen NOT to give up. I am choosing life by going through chemo, and the hair loss is like a badge of courage confirming this. I am paraphrasing him, but his words were just what I needed to hear.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/7/2016 8:11 AM (GMT -6)   
I go for my first chemo today! I am not nervous, and honestly I'm a little bit excited, as it means things are moving along in a positive way. I am doing what has to be done to be as healthy as possible, to give myself a cancer-free future.

Despite the fact that the 3 or 4 times I've had my tissue expanders filled they have each been filled with the exact same amount, one breast is bigger than the other. My PS didn't seem too concerned. She gave some explanation as to how that can happen sometimes and that the next time I come in for a "fill up", she will only do the smaller side, until they are even. I am not describing her response very well and that is just because my brain isn't fully functional at the moment, lol. But my doctor remained confident that the final outcome would be symmetrical and she will make sure I am happy with the results.

Another thing I wanted to mention about the tissue expanders.....before my mastectomy I was going from website to website reading everything I could about everyone's cancer and reconstruction experiences (since I started my process with zero knowledge), and SO many people wrote negative things about their expanders. about how they were uncomfortable, even painful sometimes, and annoying to feel that hard edge of the expander inside them. I am happy to report that I feel nothing negative about my expanders. Yes, I can feel the hard edge of them, but to me that's not a bad thing. Unusual, yes. It's not how natural breasts feel, and it won't be how my breasts feel when I eventually have the expanders swapped out for implants. But I feel grateful, or even exuberant, just knowing that my breasts are in the process of being reconstructed. SO WHAT if there is something hard in there right now.....there used to be hard lumps of cancer tumors that could have killed me, lol...... I'll take these anyday!

Best of health and positive thoughts to all who are reading this :)

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/7/2016 7:07 PM (GMT -6)   
So, my first chemo was a breeze! The actual chemo part was a breeze, but the overall appointment was quite long, almost 5 hours, and only the last 2 were spent getting the chemo. The 3 hours before that involved a lot of waiting (the waiting room was the busiest I've ever seen it, maybe 4 times as many people there as I've ever seen before). Then my time with the nurse went quickly, with her drawing my blood --from my port, no more using arm veins, which is nice--, taking my blood pressure and getting weighed. From the time I learned I had cancer I began stress-eating. Heavy duty stress-eating! And it's embarrassing, but from the time I saw my OBGYN on 7/22 to 10/13 when I got weighed at the oncologist's office, I gained TWENTY-FIVE pounds. Yikes. I knew I had gained "some", but finding out it was that much straightened me out, and I stopped binge-eating all the high cal foods in which I had been indulging. Each doctor visit since 10/13 when I started being more in control, my weight has gone done a pound or so, and as of today I have lost 7 of the 25 I have gained. So I felt good about that. After the nurse saw me there was another longish wait until I was able to see the oncologist. She was with me for quite awhile reviewing all kinds of info. The liver scan I had last week (because a blood test had shown elevated enzymes) was normal. The echocardiogram I also had last week, which is done as a baseline since the Adriamycin damages your heart, was not normal. I have a "diastolic dysfunction" and now I'll have to see a cardiologist, too. This really surprised me. I would not have imagined anything being wrong with my heart. My entire adult life I have done major cardio exercise several times a week. I've always had a low heart rate and low blood pressure. Until now. I thought the HR number being higher, as well as the higher BP, was due to the stress of the cancer (on top of many other major stresses I have in life), but I guess not.

So, three hours after all of that, I finally get to go into the chemo room, and sit in the comfy recliner. All I can really say about the 2 hours of getting the various IVs is that it felt cold in my veins. I felt a twinge of nausea by the end of it (no big deal), and just a tad bit achey (also no big deal). The nurse assured me that this would be the only easy visit. Of course in three weeks, for the 2nd round of chemo, I'll be bald, and unknown how I'll feel physically at that time. She warned me that by the 3rd (of the 4 total of these chemo drugs), I will be saying "thank God there's only one more after this, as I can't take it"..... So I am relishing the good times while they're here. I took an hour walk after I got home with a gf who lives down the street, and now I am just settling in to watch the shows I have DVR'd from last night.

Best of health and positive thoughts to all who are reading this!

addendum: Miss Positive spoke to soon! My first chemo day was not as breezy as the day went on. Nausea grew by the hour from about 9pm to midnight, when I knocked myself out with a valium so I could sleep. I have an anti-nausea "Sancuso Patch" on, I took my prescription anti-nausea meds, plus I had anti-nausea meds in my IV drip before the chemo meds, and I sucked on ginger candies to calm my stomach. So without all of that, I'm sure it would have been much worse. I'm thankful today I woke up feeling great, got a morning walk in, and hopefully I'll have a chance to vote today before I go back to the cancer center to get a 2-hour flush of IV saline.

Post Edited (exqualls) : 11/8/2016 7:21:46 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/9/2016 7:03 AM (GMT -6)   
The first day after chemo was pretty easy, just some mild nausea, the type where saliva rushes to your mouth, but nothing happens. I am taking my anti-nausea pills and I am wearing the Sancuso anti-nausea patch. I had a fair amount of fatigue, but managed to take a walk around my block.

This morning, however, I woke up and immediately had to hang my head over the toilet to throw up. I go again today for 2 hours of IV fluids (which include anti-nausea meds), just as I did yesterday.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/10/2016 3:18 PM (GMT -6)   
Yesterday ended up being pretty bad. As I said the day started with me hanging my head over the toilet. Then the cancer center was exceptionally busy and I had to wait an hour and a half before I could get back to the "cancer room". Luckily there was an unoccupied couch in the waiting room where I lay in a fetal position, focusing all my thoughts on not throwing up, while others in the waiting room kept pouring coffee from the nearby coffee pot and the smell of the coffee was sickening to me. After 1 1/2 hours my name was finally called and I could barely stumble my way back toward the nurse. She was very sweet and took my bag and put her arm around me and got me back to the cancer room as quickly as possible. The room was as full as I've ever seen it. I was directed to one of the only open chairs where I then waited maybe another twenty, excruciating minutes. My nausea was overwhelming, and the more I was "ignored"--not really, I know that there were just too few nurses to handle all of us sick people-- the more distraught I became, until I was finally curled up in the reclining chair, sobbing quietly.

By the time the nurse was able to get to me, he apologized profusely and got permission from my doctor to add some Atavan to my drip. That, plus the anti-nausea meds over the next twenty minutes worked miracles. I was able to sit up and read my magazines like a regular person, instead of the quivering mess of a person that had first sat down. Then 2 hours of IV fluids, and back home, where I was able to take a nice walk with my girlfriend down the street. What a roller coaster of a day!

Today has been non-eventful (big YEAH!!), with the added good news that my insurance company called and said they are approving Varubi, a new anti-nausea pill, which will be delivered tomorrow.

At first I started writing here with the intention of trying to learn from others about their cancer experiences, since I didn't start out with much information at all. Now I find myself just wanting to document my experiences to maybe help anyone else who finds out they have cancer and realizes they have NO IDEA what is going to happen next. I'm going to just keep writing "what happens next, and next, and next".

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14846
   Posted 11/10/2016 10:01 PM (GMT -6)   
Hello exqualls & welcome to Healing Well. Unfortunately this is not a really active forum here at Healing Well. However, I would like to commend you for telling your story here. Your journey so far has had over 1500 views. People are reading what you are writing. Anyone can read posts here, but they must be a member to respond. People searching for answers will come here & read posts without ever joining. I do hope that you will continue to post & document your journey as I am certain it will help many women reading this.

A very good friend of mine had BC & she has done very well. It ran in her family, from her mom to her 3 sisters. All had surgery, recon & chemo & did fine.

I hope your road continues without a lot speed bumps. In the meantime, please keep posting.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/16/2016 10:59 PM (GMT -6)   
Thank you, Susie.

The last few days have been a mixed bag. Some days too tired to move, but no nausea. Other days non-stop nausea but I'll have lots of energy. This is my 10th day after my first chemo...I keep anxious track of the days since 98% of everyone I've talked to says I'll go bald anywhere from day 14 to day 17. My friend at work who went through this shedded so much on day 10 she shaved what was left off. But one of the nurses at the cancer center said not to expect it until day thirty. She must've been on crack that morning, as I've never heard anyone say anything remotely that long.

Anyway, I went yesterday for my blood count, and my white blood cells were very low (2.7-- and normal is 4.2-10. The morning before chemo my WBC was 8.9). I asked my onc if my WBC was okay enough for me to still get my scheduled "fill up" on my breast expanders that was scheduled for the next day (this morning).... she said No, and I was so obviously disappointed that she ended up hemming and hawing and giving me a print out of my complete blood count and said to let the plastic surgeon decide. More about that later.

We also discussed my mammaprint results. I had not seen my onc since I got the results a couple weeks ago, it was her PA who had called me and said that I was "high risk", and when I asked her for the number, she said ".097"...... I recognized right away that number was not in the high risk zone (by a smidgen), but let it go, because I knew there were other factors besides the mammaprint test that indicate whether chemo is needed or not, like my high Ki-67 result... which was 48%, and that the cancer in the one node that had cancer had escaped the capsule. So yesterday talking to my onc, we went over the mammaprint results. I swear I had heard the PA correctly, but Lord knows my brain has been in such a fog, I will assume I heard her incorrectly. The true number was not ".097" as I had heard...it was NEGATIVE .0097"... and ANY number that is negative is considered high risk. For mammaprint the range is very small. From -1.0 up to zero is high risk/chemo recommended... from zero to 1.0, it is low risk, chemo not recommended. No grey area with this test. So my # was BARELY negative, but it did put me in the high risk group, so that's that.

We discussed what high risk means in my case. Based on every test result done on me, including the genetic and genomic tests, pathology reports, etc-- AFTER getting chemo there will be an 11.7% chance that the cancer could return to some other part of my body. We discussed radiation. If I get radiation when I'm done with chemo (as I had been resolved to do), that will increase the odds to 95% that cancer will not return to that breast, my left one. The right breast had non-malignant cancer so would not be radiated, even though it was removed and is being reconstructed just like the left breast. But the odds of cancer coming back to the rest of my body would still be 11.7%... so only a 5% chance after radiation that cancer will come back to my left breast, but still 11.7% that it could come back somewhere else, the likely places being brain, lung, bone.

So, back to my onc giving me a copy of my blood count to give my PS today, for her to decide about proceeding with my planned fill up. NO. My WBC was 2.7, and it has to be at least a 4.0 before the PS would stick a needle in me for the fill up. I think my onc HAD to have known that the PS would say this, I think she just didn't have the heart to give me what I considered bad news, as I was excited that I was going to get "filled up" the next day, and she didn't want to burst my bubble. I have mixed emotions about that, because it's a 45 minute drive to my PS office for her to tell me NO. However I recognize that oncologists probably have to give people bad news so often that this one little thing (which wasn't truly "bad" news, just disappointing that I'd have to wait), she decided to let someone else tell me. I am fine with her decision. She's a great doctor.

Now, on to some more disturbing news which I learned at my ill-fated PS appointment. I believe I had reported before that one breast wasn't filling up as much as the other, even though the same amount of saline had been put in both of them each time. The last fill up I got the doctor and I mentioned how the right one was smaller and she said that can happen sometimes for various reasons and that the next time I came in she would just fill up only the right side to even them out. It has happened to other patients and all was well and good. Wellllll, since I was there today anyway, she examined me and said that my right breast seemed even smaller than it was at the last visit. Meaning it isn't holding the fill. Possibly. She said that since it's a "blind" injection-- guided by the magnet..
the place where she inserts the needle is located by her putting a magnet over each breast and finding the exact spot and marking it with a dot. So the dot is in the right place when she does the injections, but it is still considered "blind" as there's no way to see that the needle is definitely going into the right spot. What reason could there be for it to NOT go in the right spot? Well, there could be a ripple in the expander, there could be a fatty deposit or scar tissue or something that makes the needle not hit the right spot, and the saline could just be injecting into open space, not going into the tissue expander at all, OR, and here's the really bad part, OR the needle might miss the exact spot and puncture the expander, rendering it useless, that saline already in it will leak out and any further saline put in would just continually leak out. And the ONLY solution is surgery. Major surgery. I'd have to be opened up, the right tissue expander removed, and a new one put in, and of course surgery cannot happen until after my 6 months of chemo, then a month to get over the last dose, then 6 weeks to heal from that second surgery before she can start the fill ups on the right side. Then I would start the radiation much later that originally planned, meaning the third surgery (to switch out the expanders for implants), will be pushed further away.

In order to know for sure she has to be able to fill up my right side, and then see if it holds..... we couldn't do the fill today because of my stupid low WBC. I go again tomorrow (Thursday) for blood work and IF my WBC is 4.0 or higher, I can call and come in Friday morning to get the right side filled up. I googled "foods that raise white blood cell count" and ate as many of them as possible the rest of the day.

I am hoping tomorrow my WBC will miraculously go from 2.7 to at least a 4.0 so that I can get a fill up on Friday so we can see what my future holds....... I told my husband and my 3 besties to pray extra hard that the problem is NOT that the expander has a puncture.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/17/2016 12:59 PM (GMT -6)   
Yesterday I googled 'foods that will raise my white cell count', and spinach was on the list, so I ate a pound (literally) of it yesterday. So on Tuesday my WBC count was 2.7...normal is 4.2-10.0..... My PS said I had to get it to at least 4.0. So Wednesday I ate my pound of spinach and this morning my WBC is 8.6!! I'm not sure to attribute that huge gain to the spinach, or just the normal recovery of WBC after chemo.... but in any case, now that I know spinach (and beef, cauliflower, dark chocolate, peanuts, and a bunch of foods I don't like) are good for my WBC, I am going to continue eating it every day.

I'll go in tomorrow morning (Friday) to get my right breast filled up, and then I'm going into non-stop prayer mode that it doesn't leak out.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/18/2016 9:48 AM (GMT -6)   
I had my right breast filled up today. When I got home I took out a measuring tape and measured across and top to bottom, and used a marker on my skin so I can re-measure in a week or so. If this fill leaks out I want empirical proof, not just the eyeball test, or the feel test. I'm going to be careful each time I wash not to remove my marker spots.

If anyone reading believes in prayer, or in the power of positive thinking and you're on my side, please join me in hoping that this fill does not leak out! I desperately do not want to have to add ANOTHER surgery to what I am already going through.

Best of health and positive thoughts to all who are reading this :)

Post Edited (exqualls) : 11/19/2016 9:56:14 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/18/2016 3:40 PM (GMT -6)   
MAYBE my excitement is premature.... HA..... I know it is, but I couldn't help it. I just measured my right breast and the dimensions haven't changed, and it's been seven hours. I mean, if there's a leak, wouldn't it start right away? IKR...maybe it would, maybe it wouldn't....a tiny pinhole leak could maybe not result in a noticeable loss of size for a week, or more. Still, it put a smile on my face to see the measurement hadn't changed.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/19/2016 10:51 AM (GMT -6)   
So two things for my OCD brain to focus on: Is today they day my hair falls out? and, Is today the day my right boob starts leaking? I measured my breast one more time last night, and then just a few minutes ago, and so far, so good. Yeah! Today is the 12th day post chemo, and the supposed range is day 14-17, but since my friend at work lost hers on day 10 I've been on high alert.

In a dream last night I lost all my hair. I had woken up, gone into the bathroom and brushed my teeth without really looking in the mirror, which is my normal. Then I picked up a widetooth comb and started gently combing my hair. I was surprised that my hair was several inches longer overnight! But as I ran the comb through it, I discovered it was so long because half of the hairs weren't attached to my scalp, they had come out and were working their way down and out... all it took was the comb to have them come out completely. By the time I finished combing, about 3/4ths of my hair was on the bathroom counter, and I looked in the mirror and saw a nearly bald head with random stragglers attached to various areas of my head, hideous and scary looking.

SO! It was with great trepidation that I went through my morning routine after waking from that dream! As of now, I still have my hair. And my right boob :)

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

Post Edited (exqualls) : 11/19/2016 9:58:25 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/20/2016 2:29 PM (GMT -6)   
The hair is coming out in droves. I GENTLY ran a widetoothed comb through it this morning and as many hairs came out as normally would come out in a whole week. I loosely clipped it into a ponytail with a clip-comb (can't remember what they're called ....chemo brain :/), and haven't touched it the rest of the day. I did measure my right breast, and although to the eye test it looks smaller, the measurements came up the same, so..... so far so good with that.

I would like to pass on a testimonial that the mouthwash mixture your onc will tell you to do every couple of hours really does prevent mouth sores. (I've seen several versions of it, depending what site you look at, but it's like a qt of water, a 1/4 tsp salt and tbsp of baking soda, make a new batch every day.) From day one of chemo I was doing it every 2-3 hours. After a week or so I got lazy and only did it maybe 2 times a day. After a couple days of that a sore started to develop inside my mouth. Right away I started doing the mouth rinse again every 2-3 hours, and within a day it was gone.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/21/2016 6:11 AM (GMT -6)   
At 3:30 am I woke up for some unknown reason and felt a tingle on my scalp. I scratched my head and a hand full of hair came out. Three hours later I am still combing my hair and gathering up a pile of it on a pillow next to me. It looks like a wig laying there. Day 14 post chemo, right on schedule.

Last week when I was at my onc's just for my blood test (where I got the good results about my WBC count going up to 8.6), I saw a patient there I had never seen before. I tend to notice the women who appear to be my age, as there aren't many of us-- most of are in their 70s or 80s it seems. I was behind this woman in the check in line, and we started talking, and the sadness on her face was painful for me. She apologized to me for seeming brusque to me in a reply about how long the line was. I said what I'd say to anyone, "don't worry about it, we're all stressed here", and her positive reaction to me understanding her overreaction was visible. Like a plant that leans toward the sunshine, she drew closer to me and said "thank you, I'm not normally like this." She said she was there for just her second time. I told her I, too, had only had one treatment so far". I had never seen such....loneliness.... in her demeanor. I hugged her briefly, and she was so grateful for a small act of kindness, that it made me realize that she may not have a support system of family or friends.

We each got called back by different nurses, into different rooms. My visit was a short one, just to do the blood test, and since I got the immediate great news about my WBC, I was practically skipping out of the area when I saw her again as I passed through a different waiting room, on the way to check out. I can't remember exactly what we said to each other, but we introduced ourselves with names this time, hugged again, told her that I know that she's scared and everything is an unknown at this point, that we're on a journey we didn't plan, but we're on the right path. I hope we can share contact information the next time we run into each other.

Which brings me to the subject of my own friends, the three best friends that I shared my news with (the news has spread to others at work and in my neighborhood, but basically I only talk about my cancer journey with my husband, two sons, and my 3 best girlfriends.) My dearest friend and I have been incredibly close for almost 40 years! She was supposed to come to my house tomorrow, Tuesday, day 15 post chemo. We knew I'd be bald or close to it, and I'd be wearing my wig for her --the first person to see it. Also, it would be the last time we see each other before Thanksgiving. My friend has severe OCD, and unfortunately, me having cancer is a stressor for her-- it pains her to think about me going through this, and it triggers her OCD. She is now totally caught up in how ill she is feeling from eating "bad hummus" that she says she can't think about anything else, and cancelled our plans for tomorrow. Frankly, it hurts me. I know she can't help it. I know her mind is totally obsessing about the fact that she "may have" eaten hummus that had been recalled. But this little, tiny, selfish voice in my head says "but what about me?.... I don't MAYBE have malignant cancer ... I DO.... my hair isn't MAYBE going to fall from my head (and after all these years, she knows and completely understands my hair obsession), it IS falling from my head... RIGHT NOW... I won't MAYBE be nervous about wearing a wig, I WILL BE. I won't MAYBE be going thru 5 1/2 more months of chemo, it's a definite....anyway, I don't like this little voice saying these things, but it's there, I'm hearing it.

As I just spent most of yesterday with one of the other in my trio of friends, I called the third and asked her to come over tomorrow and share my first wig experience with me and we'll also have lunch and do a craft project together.

I go to the onc today and I will be watching out to see if my new acquaintance is there. I want to reach out to her. She really seemed like she had no one to share her feelings with, and I want her to know she has me.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/23/2016 4:48 PM (GMT -6)   
My oncologist had an echocardiogram test done on me before starting my first chemo, since one of the drugs, Adriamycin, damages the heart. The results had shown a diastolic dysfunction. So today I saw a cardiologist. He did another EKG (which I had done a few days before surgery in September and it was fine then). Today's results had some abnormalities. The doctor said based on my echo and the EKG, he needs to get some other test results. SO I'll be coming back Friday for blood tests (the lab was closed already today as mine was the last appointment of the day), and having to come back two more times--one for a CT scan of my chest (with iodine contrast, yuck), and for another echo and stress test. Then a follow up visit with him to go over all these tests results. Plus, since my recent blood work has shown I'm slightly anemic, and there is no known reason for it (I'm not menstruating), and since I'm over 50, he advises that I get a colonoscopy to see if there is blood in my stool. I told him I had done one of those mail-away colon tests and it was negative, and he said that just means that particular sample did not have blood in it, but the only way to be sure is to have a colonoscopy. So this one visit today has created five more appointments.

I came home feeling numb, not even able to tell my husband about the appointment, when I learned some very bad news about one of my children. So I am a tense wreck. Waiting now for my other child to arrive home from college for Thanksgiving, so I'm working very hard at putting a smile on my face. He's been worried enough about me just having cancer, I don't want to add any more stress to his life.

Bye for now. Happy Thanksgiving to all tomorrow, and best of health and positive thoughts to all who are reading this.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/26/2016 9:40 PM (GMT -6)   
I was unable to get my blood test for the cardiologist on Friday, as the lab was closed for the day after Thanksgiving. So I'll go Monday, before my 2nd chemo appointment.

I have felt remarkably well the last couple of days, enough to really enjoy my Thanksgiving, and to make some of my traditional holiday treats and pass them out to some neighbors, as well as to take my daily walks through my hood. The only physical complaint I can say I've had is mild nausea. I've been diligently measuring my right boob, and the horizontal measurement has decreased by about a third of an inch. I won't see my PS until Wednesday, so we'll see what she thinks.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/28/2016 4:33 PM (GMT -6)   
I started my day at 7:30 at the lab to do the blood work that the cardiologist ordered. Then this afternoon I had my second chemo treatment, which, like the first, went very smoothly. Hopefully the added anti-nausea drug, Varubi, will help me not to repeat the pattern of last time....wherein as the night went on, and then the next couple days, nausea increased to the head over the toilet level.

My oncologist asked me to defer getting the colonoscopy that the cardiologist wanted me to get, until after I am done with chemo. Generally, unless a procedure is "urgent", she says to put it off until after chemo. So I guess I'm glad I don't have that to look forward to in the next couple of weeks. Gotta find the bright spots where i can!

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

PS.... well, last night followed the path of my evening after the first chemo treatment. Around 9-9:30pm I started to feel nauseous, not enough to throw up, but just that constant queasy feeling, which lasted until I took a valium and made myself sleep. I awoke today at 6:30 with the same queasiness and I'm just trying to eat and drink things that will quell the feeling.

Post Edited (exqualls) : 11/29/2016 5:40:39 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 11/30/2016 10:48 PM (GMT 0)   
Five hours spent at doctors' appointments today! I left the house at 9:30am to go to the cancer center to get the IV fluids and as soon as that was done, went across town to the PS to see about my expanders. The doctor decided that the right breast was not losing ALL of its fill, and so she decided to try again filling both sides, and putting a bit more in the right to try to get it to catch up to the size of the left breast. For the first time I could actually feel each breast as it "blew up" like a balloon. It was a "tight" feeling, but not very unpleasant. By the time I got home it was after 2:30. I feel like I DID nothing, but was so exhausted by these two appointments. I actually took my wig off in the car driving home, as I had developed a headache.

And like the last time I got a fill up, I came home and measured each breast so I can tell if it does down. I'll see the doctor again in a week. Tomorrow morning I see my surgeon for a follow-up, the first time I saw him since surgery on 9/28, (however I was incoherent from fentanyl, so I don't really count that). The only visit I remember with him was on 9/1, my initial consult when he outlined my diagnosis and what type of surgery and likely follow-up treatment I would need.

So this is the third day after my second chemo, and it is pretty much following the experience of the first time, lots of fatigue and some nausea. I believe the nausea is a bit better this time, since I have the added drug, Varubi. A side effect of Varubi, however, may be heartburn, as I have had that several times a day, which is not usual for me.

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

Addendum: I mentioned to my husband that we'd be seeing my surgeon for the first time since surgery and he corrected me that we had already had a follow up with him. Strange that I have NO memory of that, but I checked my "master list" of all appointments and there it is-- I saw him on Oct 14. I guess I was still on pain meds then and obviously cannot trust my memory.

Post Edited (exqualls) : 12/1/2016 7:16:23 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 12/1/2016 12:23 PM (GMT -6)   
I measured my right boob today, and since last night it has gone down by 1/3 inch :(.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 12/3/2016 7:59 AM (GMT -6)   
A girlfriend reminded me of something yesterday that I have accepted as normal, and that is that being treated for cancer means I have four or more appointments every single week. And looking back at my calendar, I can say four is the minimum. Often it is five, sometimes, six.

I started my first entry in this forum by confessing I hadn't seen my OBGYN since I had my last child 21 years ago. That is a telling indicator of how often I used to see ANY doctor. I suffered from (literally) tennis elbow for a full year before I went to the doctor about 3 years ago to get a prescription and an arm brace. I never really got colds, or sore throats or UTIs or anything else to make me pick up the phone and actually make an appointment with a doctor. I had four back surgeries back in 2004 and the second I needed no further treatment for my back, I went back to my usual "avoid the doctor" lifestyle.

So it's a bit funny that my life revolves around doctors' appointments. And this will be true for anyone who starts treatment for breast cancer. During weeks that you get chemo, you will also go 2 more times to get flushed with IV fluids and receive anti-nausea meds; if you're having reconstruction, you will also be going to the plastic surgeon once a week. And because you have cancer and are receiving dangerous chemo drugs, your oncologist will be very careful and have you see various other doctors to "rule out" potential problems. I always thought of myself as the healthiest person in the world and now I'm being seen by every specialist there is.

I'm pointing this out just so everyone can learn that this IS the new way of life once you have cancer. I'm not complaining. I am GRATEFUL that all the treatment I'm getting is killing my cancer, and the various other doctors visits are making sure I stay healthy.

I think about what I do far, far more than I ever did before. I had been totally without thought as to the physical consequences my actions could have on me. If I wanted to plant something in the garden and there was a buzz of wasps or bees lurking near me, I planted away, believing "I'm doing my thing, they're doing theirs, we won't bother each other". Now I have to wonder if an insect bite or sting could cause lymphedema, or have some heightened effect if it happens to be one of the days that my immune system is low. I do craft projects, and now I find myself searching for a thimble to make sure I don't even get a pin-prick. I don't walk outside without shoes. I really could go on and on here, listing all the ways I don't just do whatever I want to do as I used to before. Like I said, though, these aren't meant as complaints.... Just statements of facts, this is the new reality.

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

Oh, my right boob is still down by 1/3 of an inch-- I am glad it hasn't gone down any further. If it holds at this amount, it will still be a half inch larger than it was before the fill up.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 12/5/2016 7:32 PM (GMT -6)   
The right boob is looking pretty deflated. The left one is superb! LOL Dang it. Has this happened to anyone else?

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 147
   Posted 12/7/2016 7:08 AM (GMT -6)   
I hate to admit that I am feeling a bit depressed and overwhelmed at the deflation of my right tissue expander. I remember being surprised at how elated I felt after I had the first fill up in the expanders, and just the tiniest of breasts started to show. Those small, feminine mounds made me realize I WAS recovering... I still had chemo and radiation in the near future to kill the cancer, but here was visible proof my body WAS recovering.

Each week I'd get a fill and the breasts were growing. I felt like me again. Even though I technically "have cancer", in my mind I feel like a healthy person since I'm doing everything to fight it, and since I was starting to look like me again--with breasts and great-looking wigs--I felt as happy and positive as ever. (And if anyone reading can't tell, I am a super positive person by nature.)

However it cannot be denied any longer. For at least 4 weeks the right breast has not kept up with the left, and it doesn't just look smaller (lots of women have one breast bigger than the other, who cares), it is mis-shapen. Because the skin expanded out, then when it didn't hold the fill, the skin falls in on itself and it's almost like a cave-in on the right side of my chest. I am not properly describing how horrific it looks. It also doesn't help the overall look that the port for chemo is just over the right chest area (I'm not even going to call it a breast anymore), and having the port creates an indentation under its location as well, so there is a whole lot of ugly going on the right side of me.

I go to the onc's office in an hour or so for blood work, hoping my WBC is high enough. When blood was taken 2 days ago my WBC was 2.2 (normal is 4.2-10.0, and my PS won't fill the left one unless the WBC is at least 4.0). I've eaten a lot of spinach salads and a lot of red meat, hoping that it will be at least 4. Whether it is or isn't, there is still my appointment later today with my PS. And I believe I'm going to have a mini-breakdown in her office when I undress. Not because "I'm ugly", or "IT's ugly", or anything to do with looks....... but because it means I'm not on the path of healing that I had been on. I had looked at this as a straight path of healing... Double-mastectomy, starting reconstruction right away with tissue expanders, continue to get the expanders filled weekly during my chemo treatments. By the time chemo is done the breasts would look perfect (although nipple-less, until later, but who cares), then I'd get radiation, then go back to work and my normal, fun, active life, and a year later get the expanders switched out for implants, and have nipples reconstructed or tattooed, or whatever the PS decided.

That's not my path anymore. One side of my body has taken an ugly step backward and I'll need yet another major surgery in between chemo and radiation that I'll have to heal from before radiation can begin, and then start the process of filling that expander every week.

Ugh..... I dread today.
New Topic Post Reply Printable Version
211 posts in this thread.
Viewing Page :
 1  2  3  4  5  6  7  8  9 
Forum Information
Currently it is Monday, September 25, 2017 5:49 AM (GMT -6)
There are a total of 2,872,916 posts in 315,279 threads.
View Active Threads


Who's Online
This forum has 156778 registered members. Please welcome our newest member, sdfh.
337 Guest(s), 13 Registered Member(s) are currently online.  Details
Michelejc, Psilociraptor, gardener55, WILSONJON, bobke, TotesMagotes, tickbite666, Bucko, sdfh, Loutucky, testuser1234, Szabo246, Oriol


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer