new to forum, diagnostic mammo and ultrasound found large lumps

New Topic Post Reply Printable Version
149 posts in this thread.
Viewing Page :
 1  2  3  4  5  6 
[ << Previous Thread | Next Thread >> ]

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/7/2016 1:45 PM (GMT -6)   
My WBC was 4.4, so the day started out fine. But then my PS said that there is no way this expander is salvageable, as I expected, and that the surgery to switch it out for another will have to wait until June of 2017, after I've healed from my last chemo, and then do the surgery, heal from it, then start radiation.

Sigh. Self-pity.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/9/2016 10:03 AM (GMT -6)   
After wallowing for two days in self-pity, I yanked myself out of it this morning. My work friend who I found out went through all of this 3 years ago (and who gave me the kick-in-the-ass to finally go to the OBGYN in the first place), knew just what to say. She got me to refocus on the fight against cancer. Of course I KNOW that is the number one priority, but my mind had linked the path I am on fighting my cancer, with the journey I am on to rebuild my breasts, and when that rebuilding process hit a major setback, I let it effect my overall positiveness and happiness.

She reminded me to focus on the fighter that I am...... And I am kicking cancer's butt. I was just barely in the group of people who would benefit from chemo, and I chose to get it. I am barely in the category of person to benefit from radiation, and I am going to get that, too.

So what if my outer shell, the shape of me, is going to be mis-matched for longer than expected. So freaking what. And yes, I'll be forced to have an additional surgery, but honestly, I don't think anyone heals faster from surgery than I do.

So, today my oldest friend is coming over to spend the day with me. This is my friend with OCD who cancelled on me when I lost my hair. So instead of being the first person to see me in a wig, she is the last. And it doesn't matter. It is such a non-issue! I honestly don't think about my baldness and what it means time-wise for how long it will take before I have a decent amount of hair again. I am enjoying my wigs, and REALLY enjoying how there is no upkeep to my hair looking great. When I had my long hair, that I was oh so proud of, it was a minimum two hour ORDEAL for me to get done up for anything. I don't have great hair, but I could make it look great, when I put in the 2 plus hours to get it that way. And it would last for just that day. The next day it would be so-so looking. Day three was pony-tail day.

Now, every day is a great hair day. It takes five seconds for me to grab the wig off the stand and adjust it over my head. Five SECONDS!

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/14/2016 3:15 PM (GMT -6)   
I had my echocardiogram and stress test today, ordered by the cardiologist after the echocardiogram ordered by my oncologist showed a "diastolic dysfunction". They did a resting echo, then had me on a treadmill for ten minutes, increasing the speed and incline every couple of minutes, until my heart rate reached 160, then right away did the echo again to get info on it when it was stressed.

This has been an easy week. Other than seeing my onc on Monday (just for blood work and for her to check on me), this is my only appointment. I'm pretty sure this is the first time in over 3 months that I've only had 2 doctors appointments in a week. Usually it's 3 or more.

My son gets home from college on Friday night, and on Monday morning I have my third chemo. I hope it doesn't wipe me out for too many days.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/16/2016 9:40 AM (GMT -6)   
So I've been chronicling "what it's like to have breast cancer and what to expect each step of the way", but I have left out something that most chemo patients go through, and I am no exception: chemo brain. Chemo brain is forgetfulness, fogginess, ineptness. It is frustrating and a bit humiliating, and humbling.

As I type along here it may seem like it is easy for me. Normally it is. I've been a super fast, accurate typist for decades, never having to look at the keys, of course. But occasionally, in the midst of typing a sentence I will suddenly need to type the "s", for example, and have no clue where it is. I will stare at the keyboard and my eyes will slowly go over each row of keys and I will not see it, even as I go over the row that it is in. It may take several searches before I finally find it and can go on.

After brushing my teeth it has happened a few times that I find myself holding the toothpaste tube in one hand and the toothbrush in the other and not knowing what to do with them. I've already brushed...the cap to the toothpaste is laying on the counter... and my toothbrush needs to be put back in its case, which is also on the counter. But I stare dumbly at these two items in my hands and I know there is SOMETHING that has to be done with each of them, but I don't know what. After 30 seconds or so the fog lifts and I put the cap on the toothpaste and my toothbrush back in its case.

I had to type in my social security number into some website the other day and kept typing in the same wrong number, absolutely positive that it was the correct number, and getting angry at the site for telling me the number didn't match what was on file. After about five tries I suddenly remembered I had the first three numbers completely wrong.

I have stood in front of my bathroom counter trying to figure out which container is the antiperspirant. I see all the bottles lined up, body lotion, face serum, makeup remover, antiperspirant, hairspray, perfume, etc, and I cannot figure out which one is the antiperspirant.... I'll have to review each item several times before it suddenly dawns on me.

While getting dressed I have put my shorts on, then underwear over them. I don't realize it's wrong until I almost have the undies pulled all the way up. Then I take them and the shorts off to do it the correct way and I again put the shorts on first and then the undies, not realizing it is wrong until the undies are almost up. On the fourth attempt I got it right!!

I've lived in the same house for 26 years. All of my doors (and there's a lot of them) open IN, except one, the door to the laundry room, which opens OUT. I will confidently stride toward a closed door and attempt to open it out and be surprised that it wasn't right, and of course I do the opposite with the laundry room.

And perhaps the most vexing error I keep making is to try and fail to send a text on my phone. I will type out my message and press send, set the phone down and look away, and within a couple seconds I realize I didn't hear the "whoosh" sound it makes when the message sends, so I look down at my phone and I see that my message is not now in a blue bubble as it should be, it is still in the area where I typed it, but the last letter of the message is missing. So I retype that last letter and hit send again, set the phone down, about to move on to my next task, and I realize there was no "whoosh" sound. Again I look at the phone and there is no message in a blue bubble, there is my unsent message still where I typed it, with the last letter missing. Obviously I have pressed "backspace" instead of "send", two times. So very carefully I type the last letter again and hit send...... and ...... drumroll.......no "whoosh" sound, no message in a blue bubble. Again I very purposefully retype the last letter and hit SEND, put the phone down and expect the "whoosh" and not get it. I'll do this over and over again. The more I focus on the buttons I am pressing the more frustrating it gets. I'll retype that last letter, practically mashing the key I am so upset, and to send it I'll hit the backspace button, or the return key, or the space key, over and over and over again, until the fog finally lifts and I see the blue "up arrow" which is the button I have to press to "send"..... Talk about frustrating.

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/22/2016 10:18 AM (GMT -6)   
I had my third chemo on 12/19, and my insurance company decided not to cover the anti-nausea meds that go in the fluids that I went back for on 12/20 and 12/21. I admit I DID need those extra meds, but doing without them didn't mean I went back to dry-heaving. I've just had some unending queasiness. My son got home from college a few days ago and basically I've been a lump on the couch. But a happy lump, as it is so good to see him, and his brother here together, and getting along well. You never know when this could be our last Christmas all together.

Although I am Miss Positive 98% of the time, it will cross my mind on a rare occasion that despite having chemo and radiation, my cancer could come back. Or that I could get a totally new form of cancer from the radiation. I mostly don't think about these outcomes because there are so many more pressing, and REAL issues I have to deal with. Foremost is money. We are in rather dire straights. I have the only job in our household. My husband has been out of work for years, and is trying to get the disability he deserves, but it hasn't happened yet. My job does not pay much, but it gives us health insurance, which I had always only thought of as important to cover my husband's many medical bills and anything that could happen with the kids.

But now, of course, my insurance is covering my cancer treatment. Except for the thousands of dollars in deductibles and co-pays.

I outlined recently what my "chemo-brain" has been like. Obviously I cannot work. My job is done on a computer and a phone, and requires fast-thinking. I've been on short-term disability, getting 60% of salary, but that is going to end soon I believe. I have my head in the sand... I don't want to call my carrier and find out when the paychecks will stop altogether and when I'll have to start paying THEM for the health insurance ($560 a month) since there won't be any paychecks from which it would be deducted automatically. It's really all too much to think about.

Best of health and positive thoughts to all who are reading this. Send some positive thoughts my way, too! LOL, I need something positive to happen, that's for sure.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 12/23/2016 7:24 PM (GMT -6)   
Its been hectic lately for me, lol, as it is for most this time of year. I have been following your journey. Again, by you sharing your experience you have & will touch many, many lives. I don't know if you are aware of this or not but to date you have had over 2500 views of your post. Can you imagine how many people you have touched & helped by sharing your experience!! A lot of people are not into forums for various reasons & prefer not to join. However, those people can read the forums they just cannot post on them unless they are members. We have many times at night more guests online than actual members. So please, as long as you feel like posting, please do so.

I have read the speed bumps you have ran into & you always get across them. As you say, keep that thought I am going to kick this cancer's butt. Don't let yourself get caught up too much in the what if it comes back. That is normal though just don't let it distract you. My sister & several of my friends that have had breast cancer all had the same fear. Once you are declared clear & go for the yearly mammo, you will be a nervous wreck to get the results. My sister finally learned to relax on her 5th anniversary. Remember you are a fighter & fight this you are doing. Hopefully the chemo fog will clear up before long, hang in there. You are doing an amazing job.

Hopefully the new year with bring the disability approval your husband needs. It is so hard to get it & such a lengthy process. By chance do you have long term disability through your employer? A lot of times they have both & when a person goes out they use the short term first & if they exhaust that they switch to the long term. Hopefully you will have it.

Enjoy your visit with your sons & I hope that you & your family have a wonderful Christmas. Sending many healing thoughts & prayers your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 12/23/2016 6:27:32 PM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/24/2016 10:23 AM (GMT -6)   
Thank you, Susie. Your post means a lot to me. I can't believe you are related to and know so many people with breast cancer! Wow, I'll bet you have heard it all. Thank you for the good wishes for my husband's disability, too. He has had diabetes for over 20 years, and it has NEVER been under control, although he has been on meds for all these years. His A1C has never been correct, and each day is a struggle for him. Throughout the day his blood sugar will go from maybe 45 at one time, and he's shaking and feels like he could pass out, to later in the day being 165, then another time 365, then back to a "normal" range, like 100. And he feels BAD at each of these numbers. He has NO energy, ever. After waking, he stays up for maybe an hour before needing to nap. The whole day is a battle to not go back to bed. He can never feel his feet, except for pain. A lot of times he is driving and will remark "I have no idea what my feet are doing". Luckily the brain is still sending the correct messages to the feet (for example: push on the brakes now), and the feet are obeying, although he can't feel that they are obeying. From what I know of diabetes, it can affect every organ in the body, including the brain. He and I have both noticed a crippling loss of brain function over the last 20 years. He literally has no enjoyment in life.

He's been denied twice for disability, the last time was a year ago. Now we are waiting for his case to go before a judge, and there is no idea on a timeline as to how much longer that could be. People who have not experienced this level of disability from diabetes just cannot understand. If he were not my husband, "I" would not understand. Other than my experiences with him, the only information I have on living with diabetes is all the commercials on television, that all show healthy-looking, ACTIVE people, showing them playing golf, or working in a work-shop with their grandkids, or playing touch football with their peers, climbing hiking trails with their spouses...whatever, as the commercial narrator says "take miracle drug Z and don't let diabetes keep you down"... Well, he has taken all of the miracle drugs seen advertised and there is no working in a work-shop, or playing golf or touch football, hiking, or ANYTHING. What there is is just barely making it through the day, with one or two, or more, naps during the day.

Okay, that was a lot of venting for me. He's been dealing with this for so long, and no one seems to understand he CANNOT function to carry on a normal life, let alone function in a JOB. The receptionist at his disability lawyer's office even said to him, "I have diabetes and take insulin, and I work"..... well, she takes 4 units of insulin a day. My husband takes 180 units.

And I do not have long term disability through my job. Lord knows I wish I had purchased it separately now!

Happy Christmas Eve, everyone!

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 12/27/2016 1:48 PM (GMT -6)   
Wow, I can so relate to the many things of diabetes with your husband. My husband is type II. At the time of his diagnosis his sugar was over 500 & the drs were just amazed that he had not gone into a coma. It took a long time to find an insulin that worked for him. They tried all of the main stream cheaper ones with no success. Finally, he was put on Lantus which helped but his numbers were still too high. He ended up in the hospital for something unrelated & they brought in a dr that is an internist, highly respected in a very large metroplex. The nurse told me they were bringing in who they considered the guru of diabetes & he was a tremendous help. As it turned out my husband's pcp passed away & the internist took over his care.

My husband had a gastric sleeve surgery done this past March. He has lost a lot weight & he is now down to just having to use Lantus. Now, he struggles with low sugar & bottoms out a lot. He cannot eat very much at a time so trying to regulate this has been something else. We were out running errands last week & stopped to eat lunch. I had to drive us home because his sugar was still low after eating & said everything looked really dim.

He has neuropathy really bad in his feet & hands. He has no feeling in his feet. When he puts on the brakes driving he has no idea how hard he is pushing on the pedal because he can't feel it. He drops everything he picks up. I find his medicine in the floor from one of the pills falling out of his hand & he doesn't realize it. He is on 1800mg of Gabapentin but says he is not sure it helps all that much. He drinks out of a Yeti cup all the time & was constantly dropping i,t full of a drink. Finally, a friend said they were making holders for the cups so we went & bought one. The worst thing for him is the constant diabetic ulcers he gets on his one leg. Sometimes it takes nearly a year to heal with wound care. The last one took 5 months to heal & three weeks later another ulcer to deal with, he can't get a break.

We have a very good friend that is struggling with diabetes. Hers drops seriously low at night in her sleep. They have had to take her to ER several times because it was so low. She says she wakes up drenched in sweat & she has bottomed out. She has a snack by her bed at night now.

You will make a good witness at your husband's hearing for SSD. You are allowed to testify about how it affects his every day living & ability to care for himself. I had no experience with diabetes until he was diagnosed. Like you what little I knew was what I saw on tv which is a farce for the ones that it affects in such a negative way. I am afraid I would have slapped the secretary for her comment, lol. I have little patience these days for ignorance.

I am borderline & have been for several years. My daughter has managed to stay off of meds by diet. I am not as disciplined as she is, I like some sugar. The only problem I run into is if I am given oral or IV steroids it drives the sugar sky high & then they have to given me insulin. This has always happened in the hospital setting thank goodness.

The SSD system is something else to get through all of the hoops people have to jump through. By the time a person gets to a hearing stage they are already so poor & many have lost everything they own. I am not sure how people are to exist without any income for nearly 3 years, blows my mind.

I hope in spite of everything you & your family had a good Christmas. Keep on fighting, you are doing an amazing job. Yes, I have had a good bit of exposure to breast cancer with family & several friends. In all honesty, all of them were numb with shock & disbelief at the beginning. My sister demanded to see her pathology report to make sure it was hers.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 12/27/2016 7:25:28 PM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 12/28/2016 1:05 PM (GMT -6)   
Susie, I feel like hugging you. You are the ONLY person I've ever "known" who can relate to living with a spouse with this level of crippling diabetes. I could relate to every single thing you said. I am hoping your husband did finally get disability?

Yes, we did have a happy Christmas. My brother-in-law brought a Honey Baked Ham, and my sons, ages 21 and 22 cooked all the sides, and we had store bought pies. I had NO energy, so it was great that they were able to take over all the food duties.

I hope you and your family have a blessed New Year, and that advances in diabetes treatment will come along to help our husbands and all the other people suffering.

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 12/29/2016 9:08 AM (GMT -6)   
Like you, I did not cook Christmas dinner. We went to my son's & his girlfriends house so the kids could open their presents & had a late lunch. We had a honey ham too, lol. Everyone brought dishes, my contribution was a fruit salad, lol. We did have a great day with the kids, the boys are 11 & nearly 4. The kids just make the day. The 11 yr old is our only grandchild, now with his girlfriend we have a new one in the family. I did cook all of Thanksgiving dinner which I had not done in years & spent 3 days in bed, it was too much. I will not do that again.

My husband has a long standing circulation problem in his leg from blood clots. The first one was a very large one in the main vein. It took the surgeon's partner filling in one day to pick up on the symptoms my husband was having. The surgeon kept blowing him off. He spent over 30 days in the hospital. It was a nightmare.

The leg was so bad that he eventually had to retire after 38 yrs at his job. After retiring the dr said file for SSD. He had a few minor things show up on his heart but cardiologist said don't worry about it. SSD sent him to one of their drs over his leg & the dr paid little attn to the leg & out right said your heart is a big problem & you need to see the best cardiologist you can. He did get awarded his SSD without any problem. His pcp sent him to his cardiologist & he ended up having a pacemaker put in.

He has had one vein procedure done which did not work. We are waiting now for his cardiologist to schedule another vein procedure that he does. He says he does them different & it should help the blood flow in his leg. Between blood flow issues & diabetes he has been doomed to these nonstop ulcers for years.

Another issue is his blood pressure is running super low. He has so many things going on that literally wipe out his energy. He will be 72 next month & he tries so hard especially since the weight loss to be more active. He has different hobby interests but it zaps what energy he has. I am constantly checking on him in the garage to make sure he is ok. He has fallen several times & I get nervous. It is like we get a little help with one issue & another crops up.

I don't know if you have kept a diary or not of your husbands daily issues, now would be a good time to start one. This too can be used at his hearing.

A very Happy New Year to you & your family!!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/2/2017 10:30 AM (GMT -6)   
Happy New Year one and all. I am thinking of what positive things this year will bring for me. It will bring an end to my chemo in mid-April, so that's a great thing. It will bring a surgery in probably early June to switch out my defective tissue expander for a new expander, and then my right breast can start getting filled up to match the perfect shape and size of my (already filled up) left breast. It will bring and finish my course of radiation--30-33 treatments, 5 times a week, starting after I've healed from the surgery, so I'll probably be done by mid-August.

Oh, and in May, after chemo has ended and before the surgery, my son will be graduating from college and I'll go up to see that, plus we'll be finding out what law school he will be going to!!

So, by mid-August of 2017 I SHOULD be done with all of my breast cancer treatment that can be done for this year. I have to wait a year after the last radiation treatment for the plastic surgeon to do another surgery to switch out the expanders for silicone implants. So in 2018, I'll be 58, and have great-looking breasts, lol. I saw a T-shirt in the breast cancer store (where they sell the prosthetic breasts and clothing--which I had to get a prosthetic breast to wear since my right side is flat due to the defective expander)-- I saw a T-shirt in that store that said "Yes, these are fake, my real ones tried to kill me". I thought that was so funny. Normally, I wouldn't want to call attention to my breasts at all, but given that I'll be 58 and have breasts that a 20 year old would envy, people are going to assume they're fake anyway. So I may just get that shirt. But that's 2018.

I think I reported that since I got my diagnosis in August 2016, until November, I stressed-ate myself up 25 pounds. And that once I learned it was that much I started watching what I ate and in a few weeks I lost 7 of those 25 pounds. Well, somehow I managed to gain all 7 back! So for 2017, besides sticking to my path of kicking cancer's butt, I am definitely going to lose those extra pounds. By the time my cancer is gone, I want to be ME again (minus the hair, lol)... But then of course the hair will start growing in and maybe I'll get lucky and it will grow fast. I'll try minoxidil.

I week from today I have my last AC treatment (Adriamycin and Cytoxan), which has been every 3 weeks. Then I switch to Taxol treatment once a week for 12 weeks. If anyone reading can tell me what to expect from Taxol, please let me know!

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 1/5/2017 6:24 PM (GMT -6)   
I love your attitude of being done with the cancer & treatment this year. I had to laugh reading about being 58 when you get your implants, humor truly can go a long way in a crisis situation. Same with the tshirt, that one is priceless & yes you should buy it.

Oh my, so your son is going to law school. Good for him. I worked in the legal field over 20 some years & loved it. A good friends of mine, her son went to law school & he has done very well. When he was in high school, I convinced my boss to hire him during summer break & he did. We kept him busy until he went off to college. His mom & I made several trips to see him while in college. I am very proud of him.

I did a search here at the forum on Taxol & found some very old threads. Considering the age of those threads I am not sure how useful they will be to you. Our search feature is at the top right & says Google Custom Search. I typed in Taxol for breast cancer.

Sending positive vibes your way. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/6/2017 8:45 AM (GMT -6)   
Good morning. Thanks for checking into Taxol. I did some googling and much of what I can expect is the same as the side effects from the AC regimen I'm on now-- hair loss (too late, I'm bald!), low WBC, fatigue, vomiting, mouth sores (which I've managed to avoid by religiously doing the mouth rinse every 2-3 hours), plus a new one--neuropathy in feet and hands. Since my husband has severe neuropathy in his feet I do know what that's like, and I dread it, but I (for no particular reason), feel positive that I won't get neuropathy!

Which brings me to a difficult subject: my positive attitude. It is true that I am naturally positive in the face of almost everything. However, I continued chronicling on this site about all my cancer experiences so that any other woman who finds herself in my position of a cancer diagnosis and knows NOTHING about what to expect, could read here about what happens each step of the way. And that includes the emotions that she will go through. And I have done a disservice by glossing over the worst emotions I went through initially.

In my 9/2 posting, which was the day after my first meeting with my surgeon, when I first found out the degree of my malignancy, I said said something about "today I feel good that I have a surgery date, but yesterday I did NOT feel so good"..... okay, that wasn't just glossing over how I felt on 9/1, it was practically rewriting history.

What I'm going to do now is walk through how 9/1 REALLY went. I should have told the truth then, but in my efforts to get through the negative emotions I buried them and let only the positive emotions and truths to be told. I realize it isn't fair to women reading this, who may themselves have a similar EXTREMELY negative reaction as the one I had on 9/1. I don't want any woman to think that their negative/hopeless/frightening emotions aren't valid or "normal"

Oops, someone's at the door... Part 2 coming up to finish this sad tale in a bit!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/6/2017 2:28 PM (GMT -6)   
Okay, so.... up to the time of my first meeting with my surgeon on 9/1, all I knew was that I had several large, malignant tumors. Life leading up to finding this out has been in a downward spiral for many years, on many fronts. My husband's debilitating diabetes and many, many years of being out of work has taken a huge toll on our marriage, and our finances. Many days the stress I felt would manifest itself physically-- my teeth and jaws clenched, my throat tightening and the feeling of a huge lump in my chest. And then most stressful of all, issues with one of my sons. To honor his privacy I won't specify what the issues have been, but there have many tense/anxious/angry/fearful....events over the last several years, which keep escalating. Every time we think we've been through the worst, there is more.

Soooo, on 9/1 my husband and I get to the doctor's office, and I handed in a huge stack of forms that they had mailed to me to fill out, and the lady in the front office handed me one more form and asked me to fill that out while I waited for the doctor. It was just a questionnaire with maybe 15-20 questions, and to answer I had to check a box rating the scale of how little or how severely I felt about each answer. (Example, answer 1 means no big deal, answer 5 means severe problem).

I honestly cannot recall the exact questions, but they were along the lines of, "how happy are you in your marriage", "do you feel in control of your life", "do you feel you have more or less stress than most people you know", "how do you rate your financial security", "is the health of your spouse a factor in your overall well-being"..... And to all 15-20 questions I gave 5 as my answer. The final question was a yes/no question: Do you think that your death would alleviate your problems? (again, paraphrasing... but you get the point...) and I answered yes, and I handed in the questionnaire and soon after I was called back to talk to the surgeon.

I went in by myself and got the news, that there were 2 quite large, and one or more smaller, malignant tumors in my left breast and a large, non-malignant mass in the right breast. We discussed the course of treatment: double mastectomy and reconstruction, chemo and possibly/probably radiation. Then he had my husband come in and told him as well. I was just feeling a bit numb when we got up to leave the room. However the second we emerged from the room behind the doctor, another man intervened and asked us to step back in the room to discuss the questionnaire I had just filled out.

He was a social worker, and immediately went over each question individually. Suddenly I LOST IT. I was sobbing and shaking as I clarified my answers. "Of course I have trouble sleeping most nights, my life has been hell for almost 15 years, of course I stress-eat, yes I cry more often than the average person, NO my husband does not help ease my stress, YES he is a major cause of the stress." (this part was REALLY hard for me to say in front of my husband. I don't say this to him in our lives... that his endless health problems are stressful for me and that all the years of not working have been a burden... I try not to hurt his feelings, because he can't help it that his health is so bad and he can't work). And then the last question... I was practically choking on my sobs as I qualified my answer. "Of course I think of dying to solve my problems! I WANTED to come in here today and have the doctor tell me 'Sorry, but you are stage 4, and the cancer has metastasized throughout your body... get your affairs in order, you only have a couple weeks left.'

Although I had never crystallized that thought before that very minute, all of a sudden that is how I felt. I told the social worker I wanted to be told I was dying (very soon) of cancer so I would not have to keep dealing with all THESE ISSUES (I said this waiving the questionnaire around). Who wouldn't want a way out? As there is no way out, things just get worse year after year.

So I arrived at the doctor's office just feeling a bit numb, and left a sobbing wreck, but also numb in a new way. Now I knew that in addition to the very long list of stressful issues in my life, I get to add surgeries and chemo and baldness and radiation to the mix, and when the cancer treatment is all over, every single one of my problems will be if not the same, then worse (especially financially.)

I really only felt like dying was a good option for a few hours. The Miss Positive that I normally am (for what reason, I don't know, lol), returned, and so when I posted on 9/2 about my previous day's visit to the doctor, I totally glossed over the depths of despair and hopelessness that I felt.

Okay, there, I did it. That was a hard confession! I really am a positive person so much of the time, but I felt dishonest that I omitted that those very dark, negative emotions are real, and getting my cancer diagnosis brought it out.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 1/7/2017 9:12 PM (GMT -6)   
Maybe it helped you somewhat by sharing here & getting it off your chest too, I hope so. You have been rowing the boat alone for so many years no wonder you are stressed to the max. Then to be told you have breast cancer, wow.

Something I will pass on to you about neuropathy. I read in many forums here & in the Prostate Cancer forum there is a long time member over there named Pratoman that posted something you ahould check out. Please look for the post called something about QOL & being a musician, by username Union98. Pratoman posted about a family member with cancer & on chemo & what her oncologist recommended to help ward off the neuropathy. That forum is a very busy one, so if it is not on the first page look on page 2 or 3. I immediately thought on you. If you have trouble finding it let me know. I tried to copy & paste it here but it just did not work out for me, lol. When I finish with this post I will go & look at the original poster's username & add it to this post.

Any idea from the atty as to when your husband may get a hearing date? Hopefully this will be soon. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 1/8/2017 9:43:23 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/8/2017 11:39 AM (GMT -6)   
I could NOT find the post you were referring to in the prostate cancer thread. I saw some posts by Pratoman, but not about chemo/neuropathy. I didn't see anything by Union98. I am sure I am not good at filtering and sorting. Don't wear yourself out searching, I will look more when I can. I really appreciate that you thought of me!

I hope you are doing well. You seem like such a kind and helpful person, which I'm sure benefits many people.

My husband's attorney still has not received a hearing date with a judge.

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 1/8/2017 3:18 PM (GMT -6)   
Go towards the top & to the left click Disease & Conditions & that will bring up all of the forums here at Healing Well. Scroll down to Prostate Cancer & click it, it will bring up page 1.

The title of the post is "Looking for input & being a musician" this is by Union98.

Also look at the posts titled "Taxotere with ice bucket". There are some posts there by various members taking chemo & what some of them have/are doing to help ward off neuropathy in the feet & hands. Some of the men when going for chemo treatment had their feet & hands packed in ice bags to try to help prevent neuropathy as recommended by their dr. Another interesting thing I read in that thread was to prevent the metal taste in the mouth eating ice chips.

I hope this helps as when I posted the above I was pretty tired & not feeling too great, lol.

Take care.

I was most impressed with Pratoman's comments because it was a female family member he was speaking about. He did not say what type of cancer but its worth reading over there. I do a lot reading all over HW, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/11/2017 12:32 PM (GMT -6)   
Thank you, Susie, I found the post easily with your great directions. I've written down the suggestion of L-glutomine and will discuss it with my onc! I'm sorry you haven't been feeling well. Since you are moderator of chronic pain and psoriasis, does that mean that is your main problem? I don't know much about psoriasis, but chronic pain I can relate to (having had 4 back surgeries). Luckily, the last surgery "fixed me", so the pain is gone, but there were many dark months of chronic pain which takes such a mental toll, as well.

My last round of AC on Jan 9 pretty much wiped me out, energy-wise. I have spent about 90% of each day sleeping! I wake long enough to go to the bathroom and eat something, and maybe do a walking lap inside the house to ward off DVTs, (and bedsores, lol). I was looking at some of my previous posts and it amazes me that after the early chemos I still had so much energy and took nice long walks, sometimes more than one a day.

I think I may finally be losing my eyelashes. about 50% are gone. I'm surprised they lasted as long as they have, as I thought they'd go the same time the hair on my head did.

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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 1/11/2017 2:00 PM (GMT -6)   
So glad you found the info in the PC forum. Hopefully the info Pratoman gave your onc will be on board with. Anything safe is very much trying as long as the drs agree in my opinion.

Yes, I do have a very long history of chronic pain as a result of years of back problems. I have done it all short of surgery. By waiting as long as I did the drs say odds are not good at relieving the pain, same with my neck. Back in 2005, we ran out of options with oral medications so had an implanted intrathecal pain pump implanted for the back pain. The battery in the pump lasted about 8 years & the pump had to be replaced. My dr at the time for whatever reason refused to implant another Medtronics pump which is what all drs implant. She had an old style that is considered a manual pump implanted, not computerized at all put in. A month after the implant I threw a blood clot that hit my left lung & had a mild heart attack. Then the catheter on this pump became clogged up & no medication is getting through the catheter that is placed in the spinal canal. I had made a surgery date to have the pump & catheter taken out & ended up with an infection that would make surgery too risky. Now have another infection going on & am battling it. I have no plans to have a 3rd pump put in because of the fears of continuing more surgery when the batteries die on these pumps. I have COPD & tons of other health issues making me not the best surgical candidate around. At best I would get another 8 years out of a new pump which would make me 71 needing another surgery, no thanks. I do have several forums of psoriasis which knock on wood is under control for the time being. I have had countless hospital admissions from it becoming infected & causing cellulitis on my legs. It can be a beast to deal with at times, lol.

My gosh, 4 back surgeries!! I am so happy to read that your final one took care of your issues. That is such a rare thing to read anymore. Its refreshing to read someone was helped with surgery. I know there are many, many successful surgeries done every day. I have read many stories here at HW about folks having surgery & saying it failed. Anyone having any type of surgery, especially spine surgery needs to be prepared not only physically but mentally as well. Far too many go in with blinders on, not prepared for the post op period, not having things at home ready so when they get released. I have read over & over I had no idea it would be this rough but they never asked questions to their dr or did any homework on their own.

Get all the rest you need, you have been through a lot. Maybe some of the earlier energy a little adrenaline kicking in too. It will get better.

Still feeling rough 2nd round of antibiotics plus two shots yesterday, lol. Will kick this for sure.

Sending positive thoughts & vibes your way.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/13/2017 10:44 AM (GMT -6)   
Omgosh, what you, and your husband, have been through over the years is so much more than my little problems, I am truly embarrassed to have ever complained so much.

I am SO sorry you have not found relief from your back pain, as I have. I do meet many more people (in real life) who have had failed back procedures than successful ones. I was in a position of "have surgery, or you're not walking". All I could do was crawl across the floor with my elbows dragging the weight of my body on the floor behind me while enduring excruciating pain. My kids were only 9 and 10, so I didn't really have a choice. I do truly feel blessed every time I am walking somewhere and I remember my rehab, when just putting one foot in front of the other was an effort. And now I just "walk", like it's no big deal, without a thought.

I got a Fed Ex letter from my employer last night at 7pm, telling me that they only had my disability through 12/24, and so from 12/25 onward I was considered a "no show". This is just irritating. I have been coordinating my leave through the benefits department at my company, and through the insurance company that has been paying my short term disability. They have it noted that my disability lasts at least through Feb 15. And I learned last week through the insurance department that I DO get long term disability, which I had no idea. I'm not sure what getting that will mean. I don't think my paychecks will still be the 60% I've been getting, and it won't be every 2 weeks, it will only be once a month. So I have some more learning to do, plus I have to educate my company to coordinate my leave with the other departments with which I've been dealing.

I've been going bald a lot lately at home. The wigs just keep feeling scratchy or heavy or sweaty (I'm in Florida where it's 80 degrees). Early on I never could have envisioned wearing the turbans or other type of skull cap when I had 2 beautiful wigs from which to choose, but a couple weeks ago I started wearing them almost exclusively while I'm in my house, and now this past week I have mainly just been going around completely bald-headed. And I've even been going bra-less. The prosthetic breast and bra is lop-sided. I am always having to adjust the prosthesis to raise it up to sit as high up on my chest as the side that has the very full tissue expander. So I am walking around the house looking like a real beauty, lol!

Best of health and positive thoughts to all who are reading. Speaking of which, I know folks are reading.... does anyone every have any comments? I did originally start this hoping that folks who have been through this before me could offer any insights. I hope my writing "style" hasn't scared anyone away from commenting or interacting with me!

Post Edited (exqualls) : 1/14/2017 6:11:05 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14192
   Posted 1/14/2017 4:25 PM (GMT -6)   
Whoop, whoop on the LTD through your employer. All of this stuff has time limits I am sure on applying for the LTD. Get a hold of them Monday morning & find out what all you need to do to get that rolling.

I am still feeling rough will write more later. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/16/2017 11:29 AM (GMT -6)   
MLK holiday, I can't get ahold of anyone.

I saw my onc today, and my WBC was as low as it's ever been...down to ONE.... the lowest before was 2.2. SO, I've been told to stay home and do nothing and see no one. She said I shouldn't even eat raw veggies that I wash, at least for a few days. She called in an antibiotic as a precaution.

I hope you are feeling better, Susie.

PS, forgot to add that I asked my onc about taking L-Glutomine during taxol, to ward off neuropathy, and she said yes, so that is good. I also found out the nausea shouldn't be as bad-- I won't need the two, really expensive anti-nausea drugs (Sancuso Patch, and Varubi pills), that I had been taking during AC treatment. Also, I won't need the Neulasta, either. Although Taxol will still lower my WBC, it shouldn't be as bad, and they would give me something less strong, Neupogen, that isn't nearly as expensive also. And, once Taxol treatment starts, I won't have to follow up with 2 days of IV fluids, like I had to during the AC treatment. Yeah!

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

Post Edited (exqualls) : 1/16/2017 11:57:44 AM (GMT-7)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/18/2017 11:44 AM (GMT -6)   
Good morning folks. I'm tired of bad news!! The insurance company wrote and said they are not going to pay for the mammoprint test. I know it was an additional test, but it DEFINITIVELY put me (just barely) in the category of needing chemo. To me, it was important that I know for sure that chemo would be beneficial, not just something automatically ordered. I was borderline, afterall, as to whether I'd need chemo. But the mammoprint showed which side of the border I was truly on.

My husband called the disability attorney to see if he can get a hearing scheduled with the judge. The answer is NO. The only way to get the judge to schedule it any sooner than they feel like it is if 1). If the applicant can proved homelessness, or 2). If the applicant is basically on life-support.

I feel like babbling on more here about health and money woes, but I have to get ready now to go see the onc again, and hopefully my WBC has risen above ONE!

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

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/19/2017 12:26 PM (GMT -6)   
Unfortunately, yesterday my WBC was still too low-- 1.8, so I have to remain a hermit, as I'm at risk of catching anything and everything and having no way to fight it. Boo.

My chemo brain is acting up again. I tried writing an email to my workplace's benefits department, and I couldn't get it to come up anyway except as SONG LYRICS. I was writing emails as I've always written emails (or so my brain thinks), and I didn't choose any other style or font or anything, but every time I tried to write it came up as song lyrics. At first I wasn't going to send it, but I need to stay in contact, so a song lyrics email is what they're going to receive.

Speaking of chemo brain, I have an appointment tomorrow at a Brain Fitness Center, referred to by my onc for people with chemo brain. I have no idea what the appointment will be like.

I also go back to the onc's office again tomorrow to see if my WBC has gone up some more. Yesterday when she told me it was still low and that I had to come back Friday, I mentioned it was a $75 co-pay every time I step through the door, and 3 times in one week is just killing us. So the PA (the onc's physician assistant) said she would code the visit in such a way that it wouldn't get billed as an office visit, just as a lab visit, and then the amount should be less. Hopefully that will work, and I mention this so that if anyone else is hit hard with co-pays as I am, that it might be worth letting the doctor's office know.

Best of health and positive thoughts to all reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 106
   Posted 1/21/2017 12:55 PM (GMT -6)   
Hooray, yesterday my WBC was up to 5.3!! I honestly felt like I was alive again. For 4 days I spent curled up on the couch afraid to move, afraid to scratch myself in fear of accidentally getting a cut... afraid of handling paper due to paper cuts! Afraid to pet my cat, afraid to do ANYTHING in fear I might get the smallest of cuts that would let in any germ that could kill me, as I had no WBC to fight it. I remember an episode of "House", where a young woman ended up dying because a staph infection got in through they tiniest of tears in the skin on her back from her bra hook. How many times have I had an annoyingly itchy bra hook, and reached around with my fingernails to scratch it?

It was horrible, I was afraid to move. And since I was trying desperately to get my WBC up, I ate tons of red meat... 3 times a day.... But on Friday I learned my WBC was up to 5.3, and my weight was up 5 1/2 pounds in just 4 days. I took a walk in the early evening with my gf who lives down the street, and I was SO GRATEFUL to be out of the house.

Also yesterday I had my appointment at a Brain Fitness Center, due to my chemo brain. I gave her a list of all the different ways my brain has messed up (that I posted about a couple weeks ago I think), then she had me take a series of simple tests on the computer. Just looking at lists of words, then showing a bigger list of words and having to push a button when I recognized any words from the original list. Also doing something similar with pictures of various shapes, and then with colors and shapes. It took a little over an hour, and then I have a follow up with a doctor in a couple weeks for the assessment.

Oh, when I went in for my bloodwork in the morning, to my onc, I was only charged $11, instead of the $75 copay, so that was nice!

I am more than a little depressed overall, however. This weight gain is out of control. And our financial crisis is REAL. My onc, and the lady at the Brain Center yesterday, have both commented on my depression and feel I would benefit by seeing a therapist. Well, no sh!t, Sherlock. Sorry, but all I can think is "another $75". I would love to talk a couple times a week to a therapist! Even once a week. I just cannot add anymore to our bills.

A part of me thinks I could/should spend some time trying to find free help for poor people like me, but here is my weak-*** excuse.... I don't have the energy to search for help. LOL. It's kind of funny. Well, not really. I just feel so beaten down, emotionally and physically, over things that have been going on for years, not just by the cancer I've had for five months. about 3 weeks ago I was somehow energized to spend the whole day on the phone calling various cancer foundations, trying to find help, and every call just led to other calls. I have several pages of notes about everyone I called and who they in turn told me to call. I ended up getting help for neulasta.... which I will no longer be getting now that I've had my last AC chemo treatment. Neulasta isn't given after Taxol treatments.

Aye, aye, aye..... I need to focus on the positives right now. My WBC is up. I can DO THINGS. I'm going to take a walk later today in my hood, and tomorrow I think I'll walk the causeway.

Best of health and positive thoughts to all reading.

Post Edited (exqualls) : 1/24/2017 8:56:11 AM (GMT-7)

New Topic Post Reply Printable Version
149 posts in this thread.
Viewing Page :
 1  2  3  4  5  6 
Forum Information
Currently it is Monday, May 29, 2017 5:42 AM (GMT -6)
There are a total of 2,816,647 posts in 309,236 threads.
View Active Threads


Who's Online
This forum has 151705 registered members. Please welcome our newest member, Hawkeye1947.
319 Guest(s), 6 Registered Member(s) are currently online.  Details
scifigal2k, Butterflake, Bucko, Pratoman, Scarecrow, mjw11


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