I lost track of time through this period. I don't know the exact dates that things happened for a while. I do know what happened, so we'll stick to the what and not so much the when. It's funny how when something like this happens, it all becomes a blur. There are things about this time in my life that I only know by the date of service on the bills. If it weren't for that, I would have no idea when anything happened. The mind spends all of it's time trying to wrestle with the idea that you could die. It's that simple. You know deep down inside that there's a solution, but you can't help but wonder what happens if there's not. Just getting through the day and making it through work, family, house, pets, and so forth takes up your conscious mind. The other stuff makes it so you can't sleep or focus or enjoy your life at all. You spend a lot of time wondering if you should laugh, cry, scream or kill something. It's one of those times in your life where you honestly don't know how to act or what to think, or who to believe, or what to say. The problem is that most times that you feel this way in life only last a very short time. This time was to last for me an unnaturally long time.
I went to see the surgeon the following week. I'd had high hopes that he wouldn't be a schmuck and I got lucky. He was reasonable and had a great bed side manner. He was caring and spoke in a language that we could understand. We found out that what I had was called DCIS or stage 0 breast cancer. It forms in the milk ducts of the breast and can stay contained inside the milk ducts for an undetermined amount of time. Until it breaks out of the duct so to speak, it won't hurt you.
The surgeon gave us a couple of options. He said that I could have a lumpectomy and they would take out the clusters that were biopsied and were malignant. I could also have a total mastectomy. If I had the mastectomy I had the option to have a reconstruction or not. He said that the recovery was four to six weeks for the total mastectomy. It would be longer if I had a reconstruction than if I didn't. If I had the lumpectomy it would be a shorter recovery altogether. He explained how the reconstruction worked and a bunch of other things that I would need to know to decide what I would like to do. I'd seen the ultrasound of my breast and I knew that the calcifications were like snow inside the breast. They had only biopsied a couple of clusters. We didn't know what was up with the rest of the spots.
So, mastectomy would be an option. The breast tissue would be removed and a lymph node, called the sentinel node would be checked to make sure there was no cancer in the lymph nodes. There would be a scar all the way across my chest and under my armpit. I would have to have a tube or drain coming out my side for a short period to drain liquids from the area after the surgery. I would most likely have to get a prosthetic breast to keep my spine from curving due to the imbalance in my chest. I thought it was kind of funny, because I don't have much of a chest anyway, but I'm told that it still makes a difference.
If I were to opt for the reconstruction it would be a few more weeks. The breast reconstruction is a process. They put the inserts under your chest muscle and stretch it over time. Once the muscle is stretched to the desired position, the insert is put in and then you can recuperate and get back to life. There's a catch. You could get an infection. Your body could reject it. Now, if none of that happens, you still need to have another surgery to replace the thing every ten to twelve years. So, extra surgery, extra hazard, extra time. Honestly, I couldn't believe that people have breast implants just for cosmetic reasons after I heard how it works. I knew immediately that option was not for me.
The lumpectomy sounds great, but it's perilous in situations like mine. It's great if you only have a localized area of problem. In my case, I was worried that I would have it done and then over time find out that the rest of the calcifications were malignant and have to go back and have more surgery. I didn't want to do that.
Here's the thing. I am vain, but not vain enough to have a reconstruction. What happened inside my head was that two of my traits were in direct conflict. I wanted to have a reconstruction at that time. Looking back, I would have been nuts to do that. Always look ahead. If I'd known then what I know now, I never would have considered such a ridiculous option. Anything that makes this process last longer just for the sake of vanity is not worth it. I've decided that people who have breast implants for their looks are nuts. I'm sorry, but Angelina Jolie having surgery because she might get cancer someday is nuts. Never have surgery unless you have to.
That was my conflict. I have had surgery before. I vowed a long time ago never to have surgery unless I need it. I also vowed not to take any medication that I don't absolutely need. It didn't take long of reading about my options after that appointment before I decided that I would definitely not have reconstruction if I were to have the mastectomy. I was actually very proud of myself for that decision. Vanity did not win. I felt like I had a lot of depth as a person to not opt for the reconstruction.
But, while we were still at the doctor, we wanted to get some advice. He was very reluctant to tell us his opinion about what he thought I should do. He covered all the information and told us that we should take a notebook and write down questions as we thought of them so that when we came back for the second visit and made decisions that we would have the questions that we wanted to ask with us. It was a great idea, but we already had one very important question.
My husband finally asked him straight out, "If this was happening to your wife, what would you recommend?" The doctor was a little surprised at the direct question, but he said that he would recommend the total mastectomy with a reconstruction. With that information, we went home to make some hard decisions. We decided that we would make an appointment after we'd had time to figure it out.
After the appointment, I did a lot of research. My husband did some too. We talked about it off and on for a few days. He didn't want to tell me what to do. I'm a stubborn, self sufficient woman who likes to make up her own mind. My husband loves me and doesn't want to influence me in these situations, because if something goes wrong I will put him through hell. After 18 years of marriage, he knew that well. He's a good man, and he knows when to let me go.
After a few days, I told my husband that I thought I should get the total mastectomy with no reconstruction. He smiled. That was what he was hoping I would say. Now, we just had to make arrangements and get it done. Round 1 was done. Decisions were made and now we had to move forward. I called the surgeon and made another appointment so that we could get started and get it done before my mind drove me nuts with possibilities and emotions.
I felt good that vanity hadn't won out. I was happy that I had made a solid decision and that I was doing the responsibly thing. I thought that I had it all figured out. I was about to start down a very long road.
As I go on with my story, remember that it includes a lot of personal challenges as well as the medical ones. Once again, I'm telling this story that is truly unique as is any cancer story. I wanted to put it out there hoping to help someone else cope with this situation. I hope it helps at least one person.
Monday, February 27, 2017
Friday, February 24, 2017
This Is Where It All Went Wrong The First Time
As I said, I had to wait. It would take 24 hours to find out. I didn't sleep that night. I even took some Nyquil and didn't sleep. The next day I was in some pain from all the stabbing with the drill press and the biopsies. My boob was black from the painful biopsy. I watched TV and my mind just went numb. If I had planned anything that day, it never would have happened. My mind couldn't take it. There was a 90% chance it was nothing. 90% wasn't enough for me.
It was getting to be late afternoon, so I got impatient and decided to call the mammography center. No one answered the phone. They had closed for the day and no one had called me with any news. They said that they would reopen on Tuesday after the holiday.
I didn't know what to make of that, so I looked around and got the number for the radiology department at the hospital and called them. The girl that answered the phone said that everyone had knocked off early for the holiday and that she was the only one there. She had no way of getting my results and I could call back on Tuesday. She was very matter of fact about it. I informed her that I was supposed to be finding out if I had cancer or not and that it was very important. She said that I should have called earlier.
I should have called earlier. I couldn't believe that this woman who worked in a department at the hospital that routinely had to tell people whether or not they had cancer and whether or not they were going to die just told me that I should have called earlier. That was the coldest thing I think I've ever heard. I didn't know whether to cry, throw something, scream at her, or just get drunk. I couldn't wait four more days to find out about cancer. Not when I knew that the test results were in. Nobody called. They promised. My relationship with these people irrevocably changed that day.
But, at that moment, my Thursday before a holiday was running out of time and I had to find out something or I would go insane by Tuesday. I went for my usual backup and called the one doctor that I've always been able to count on. My primary physician. This man has been my doctor for over 20 years and we've been friends as well. He always puts in the extra effort to help that we would all actually expect from a doctor. I called his office and told his office staff what was happening and they told me that they would give him the message.
A few minutes later he called me to ask me directly what was going on. He'd sent me for my mammogram, but he hadn't really checked in with me since. I filled him in and he told me that he would find out no matter what and call me back. He told me to be patient, because it would take him a while to run down the information.
My family came home shortly after that. Then we all sat and waited. It was 7:30 that night when the phone finally rang. It had taken my doctor that long to find a way to get the answer for me. When I answered the phone I heard his voice and I already knew the answer.
He offered to meet me in the office, but I declined as he noted he'd thought I would. I had cancer in the right breast. No one had called me to tell me that I had cancer. Not only did one biopsy come back as malignant. They both did. There was no ambiguity in the results either. I definitely had cancer and no one from the mammography center or radiology had bothered to call me. They promised. They lied. I immediately vowed never to go there again.
My doctor did tell me that it was a very early stage and I should be fine as long as it was treated. He asked me if I would like him to take over and get me to the proper doctors since the radiologists hadn't done their job. I took him up on that quickly. He promised that the next day I would receive a call and that I would have an appointment to see a surgeon. He told me that it would be a surgeon from the office of surgeons that I gone to when I'd had my gallbladder out. I was all right with that. He told me that whatever I needed to let him know and he would take care of it. That's what I call a doctor.
The next morning I received a call from my doctor's office asking me what time was best for me to see the surgeon. She then called the surgeon and called me back with an appointment the following week. It was settled. I never heard from the mammography center. I don't know if my doctor told them that he was taking over or not. For all I know it could be that they just never bothered to tell me anything.
I still refuse to go to that office and fortunately my insurance gave me a list of other mammography centers in the state where I can go for my mammograms. I urge everyone to task your doctors. You need to be treated as a human, not as a case. You are not a number, you are not just a birth date. I believe that a doctor should always try and see it from the perspective of the patient. They should take the time to consider the fact that their patients are human. I'm fortunate that my doctor does that. If he didn't, I wouldn't see him. Remember that. You can always find another doctor. Make sure you get the care you deserve. If you don't, who will?
At this point, nothing had been solved, but I had the answer. I had to do something about this. I had cancer. I didn't know what I had to do about it, but at least I finally had the answer after weeks of trying to find out. I'd been scolded in public, called an irresponsible liar, had a biopsy that went wrong and my boob was still black from the experience weeks later, and not been given my results. It wasn't easy to find out the answer to that question, but with a lot of work, I found out. Don't presume that no news is good news. I've actually heard of people not following up and dying because of it. Persist. Get the answer. Anything is better than the frustration or the risk of not knowing.
Irregardless of everything that happened surrounding those biopsies, the worst part was when I hung up the phone and I saw my family's faces. I could tell that they were both scared. I didn't know what to say. I told them the facts that I knew. That was all I could say. They didn't know what to say either. My family loves me and I love them. This was the single scariest experience that we've been through together.
The best advice I can give for dealing with the family during a time like this is that despite the fact that you are the one going through it, you are not alone in that task. Even though all you want to do is cry and scream and drink until you don't feel anymore; somehow you have to continue on. You have to work as a team with your significant other. In that time you have to be of one mind. He has to understand how unreasonable you are about to become. You have to realize how much it hurts him that he can't make it better and that he can't comfort you. You have to talk, even if it's been 15 years since you've really talked to each other. It's the only way. You have to be strong for your kids. They can't truly handle this kind of thing as children. My son as 16 and it's still been a rough road for him.
You can't let on how you really feel unless you do it with great tact and disconnection. If you do, everything will fall apart. I've always heard that women are stronger. I've learned that one lately. I don't want to be. I want to behave like a little baby, but life won't let me. If you love your family, you will dig down deep and pull out some inner strength that you didn't know you had and suck it up to take care of your cancer.
It was a long weekend after I found out about the cancer. No one knew what to say or do yet. I'd taken a holiday myself that weekend to spend some time with my husband. We took a road trip and looked at the foliage and tried not to talk too much about cancer. We didn't know the details yet, and thought that we would wait until we went to see the surgeon.
As always, I hope that this helps anyone that is going through a difficult time and having difficulty with it.
It was getting to be late afternoon, so I got impatient and decided to call the mammography center. No one answered the phone. They had closed for the day and no one had called me with any news. They said that they would reopen on Tuesday after the holiday.
I didn't know what to make of that, so I looked around and got the number for the radiology department at the hospital and called them. The girl that answered the phone said that everyone had knocked off early for the holiday and that she was the only one there. She had no way of getting my results and I could call back on Tuesday. She was very matter of fact about it. I informed her that I was supposed to be finding out if I had cancer or not and that it was very important. She said that I should have called earlier.
I should have called earlier. I couldn't believe that this woman who worked in a department at the hospital that routinely had to tell people whether or not they had cancer and whether or not they were going to die just told me that I should have called earlier. That was the coldest thing I think I've ever heard. I didn't know whether to cry, throw something, scream at her, or just get drunk. I couldn't wait four more days to find out about cancer. Not when I knew that the test results were in. Nobody called. They promised. My relationship with these people irrevocably changed that day.
But, at that moment, my Thursday before a holiday was running out of time and I had to find out something or I would go insane by Tuesday. I went for my usual backup and called the one doctor that I've always been able to count on. My primary physician. This man has been my doctor for over 20 years and we've been friends as well. He always puts in the extra effort to help that we would all actually expect from a doctor. I called his office and told his office staff what was happening and they told me that they would give him the message.
A few minutes later he called me to ask me directly what was going on. He'd sent me for my mammogram, but he hadn't really checked in with me since. I filled him in and he told me that he would find out no matter what and call me back. He told me to be patient, because it would take him a while to run down the information.
My family came home shortly after that. Then we all sat and waited. It was 7:30 that night when the phone finally rang. It had taken my doctor that long to find a way to get the answer for me. When I answered the phone I heard his voice and I already knew the answer.
He offered to meet me in the office, but I declined as he noted he'd thought I would. I had cancer in the right breast. No one had called me to tell me that I had cancer. Not only did one biopsy come back as malignant. They both did. There was no ambiguity in the results either. I definitely had cancer and no one from the mammography center or radiology had bothered to call me. They promised. They lied. I immediately vowed never to go there again.
My doctor did tell me that it was a very early stage and I should be fine as long as it was treated. He asked me if I would like him to take over and get me to the proper doctors since the radiologists hadn't done their job. I took him up on that quickly. He promised that the next day I would receive a call and that I would have an appointment to see a surgeon. He told me that it would be a surgeon from the office of surgeons that I gone to when I'd had my gallbladder out. I was all right with that. He told me that whatever I needed to let him know and he would take care of it. That's what I call a doctor.
The next morning I received a call from my doctor's office asking me what time was best for me to see the surgeon. She then called the surgeon and called me back with an appointment the following week. It was settled. I never heard from the mammography center. I don't know if my doctor told them that he was taking over or not. For all I know it could be that they just never bothered to tell me anything.
I still refuse to go to that office and fortunately my insurance gave me a list of other mammography centers in the state where I can go for my mammograms. I urge everyone to task your doctors. You need to be treated as a human, not as a case. You are not a number, you are not just a birth date. I believe that a doctor should always try and see it from the perspective of the patient. They should take the time to consider the fact that their patients are human. I'm fortunate that my doctor does that. If he didn't, I wouldn't see him. Remember that. You can always find another doctor. Make sure you get the care you deserve. If you don't, who will?
At this point, nothing had been solved, but I had the answer. I had to do something about this. I had cancer. I didn't know what I had to do about it, but at least I finally had the answer after weeks of trying to find out. I'd been scolded in public, called an irresponsible liar, had a biopsy that went wrong and my boob was still black from the experience weeks later, and not been given my results. It wasn't easy to find out the answer to that question, but with a lot of work, I found out. Don't presume that no news is good news. I've actually heard of people not following up and dying because of it. Persist. Get the answer. Anything is better than the frustration or the risk of not knowing.
Irregardless of everything that happened surrounding those biopsies, the worst part was when I hung up the phone and I saw my family's faces. I could tell that they were both scared. I didn't know what to say. I told them the facts that I knew. That was all I could say. They didn't know what to say either. My family loves me and I love them. This was the single scariest experience that we've been through together.
The best advice I can give for dealing with the family during a time like this is that despite the fact that you are the one going through it, you are not alone in that task. Even though all you want to do is cry and scream and drink until you don't feel anymore; somehow you have to continue on. You have to work as a team with your significant other. In that time you have to be of one mind. He has to understand how unreasonable you are about to become. You have to realize how much it hurts him that he can't make it better and that he can't comfort you. You have to talk, even if it's been 15 years since you've really talked to each other. It's the only way. You have to be strong for your kids. They can't truly handle this kind of thing as children. My son as 16 and it's still been a rough road for him.
You can't let on how you really feel unless you do it with great tact and disconnection. If you do, everything will fall apart. I've always heard that women are stronger. I've learned that one lately. I don't want to be. I want to behave like a little baby, but life won't let me. If you love your family, you will dig down deep and pull out some inner strength that you didn't know you had and suck it up to take care of your cancer.
It was a long weekend after I found out about the cancer. No one knew what to say or do yet. I'd taken a holiday myself that weekend to spend some time with my husband. We took a road trip and looked at the foliage and tried not to talk too much about cancer. We didn't know the details yet, and thought that we would wait until we went to see the surgeon.
As always, I hope that this helps anyone that is going through a difficult time and having difficulty with it.
Thursday, February 23, 2017
I Had No Idea What I Really Had To Deal With At That Point
As we continue on my journey, I have to say that my employer has been more than helpful and cooperative through my odyssey, and I don't think that I would have gotten through it all without that. It's important that we are more than worker bees and numbers to the people that we work for. It makes all the difference in the world.
As we travel on my journey, the next step that I had to go through was to have the biopsies. I had not checked too deeply into my medical situation at that point, because we weren't sure that there was anything wrong yet. I was told by doctors, navigators, and technicians that 90% of biopsies did not come back as a cancer result. I was very nervous and no one could seem to figure out why.
Let me explain. I've always been special. When I was a kid, I had problems that were rare. They had to be taken care of. When I had my son, we had an unusually complicated delivery that ended in a C Section. Then I almost had my Gallbladder blow up and didn't realize that there was a problem. I had Pneumonia and ended up with an inhaler for life. I started to produce kidney stones a couple of years after that. My favorite was the affliction that I called boo boo gut, because no one could figure out why I had pains shooting up my left side. I went through six weeks of tests and no one knew. Several years later we discovered that the pain comes from Osteitis Pubis; a break in the cartilage that holds the pelvis together. It's a permanent injury that normally only happens to Australian football players and only effects around 40 women a year around the world. Special. That made me nervous. I'm always in the 10%.
I was told that it would be wise to give myself 48 hours to recuperate from the biopsies, because there was more than one and I had to be able to lift 50 pounds to go to work. I was told that I wouldn't have hardly any pain, but that I might be tired. I made arrangements at work for the test procedure. We shuffled the schedule around for coverage just so I could have this done.
I reported for my biopsy and found the doctor that had been so nasty to me. He was nasty again, and I reacted. At this point, he refused to do the biopsies and walked out. The technicians and office people tried to find another doctor that could come to the mammography center from the hospital and do the biopsy, but they had no luck. I had inconvenienced everyone I work with for no reason. I didn't realize that they had scheduled me with this nasty doctor who did nothing but be rude and yell at me. I had told everyone at the mammography center that I couldn't deal with this man. So, after all the trouble, we had to reschedule the biopsies and I had to rearrange my work schedule again to have this done. More hassle, and not just for me.
I rescheduled and did what I had to do. The biopsies were to be done just before Columbus Day Weekend. They had scheduled me outside of the normal schedule so that I could have another doctor. I felt horrible, but the doctor who apparently handles all the biopsies was nasty to me. He refused to continue, so what could I do? I said that I would let him do the procedure. He was the one who refused.
I arrived and changed into my easy access boob shirt and went for my biopsies. The other doctor was very nice. He was young, but nice. So starts the odyssey. They marked my breast and clamped me into the mammogram machine. There were two technicians and the doctor in the room. Now, let me describe the procedure, because I was shocked. I don't know if it would help most women to know what was coming or not, but it would have helped me, so I'm telling.
Once they get you into position, they take a needle and shoot you with a numbing agent--Lidocaine. It stings, but I would rather be numb. If you have anxiety, this alone will freak you out. You are sitting for this procedure, so if you tend to faint, this is a touchy situation. I was nervous but okay at that point. One of the technicians came over to my other side and started to make small talk with me to keep me calm and in place. That was fine. She and I had the same name which immediately gave us something to talk about.
What I did not know, and I didn't see coming was the device that the biopsies are done with. The technician was trying to keep me distracted while the doctor and the other technician did the procedure. I heard a click that sounded like a big gun being cocked. I looked, and I shouldn't have. What they do is that use what looked like a drill press. They attached it just above the plate where your breast is clamped on and then they drill right in there to get the tissue. I was so shocked at the sight of the thing that I nearly passed out right on the spot. I'm a really tough cookie, and it freaked me right out. I did not look at it after that moment.
The doctor had no trouble doing the first tissue removal, and I didn't feel a thing. It was all good, but it had freaked me out so bad when I saw the device that after the procedure, I was shocky and unstable. They had to get me something to drink and I'm allergic to oranges, so orange juice wouldn't do. The only thing that they had in the whole building was a juice box that belonged to the technician that had been trying to keep me distracted. She graciously donated her apple juice and I went about trying to calm down.
Fortunately, there had to be a break between biopsies anyway. The time factor didn't get messed up because of my episode. I was much calmer going into the second biopsy, because I now knew what it was like. I was prepared and ready to go. They got me set up, shot me with some more Lidocaine and we proceeded with the second biopsy.
The second biopsy didn't go well. It hurt. I don't even really feel pain in my torso area and this hurt. It was like the Lidocaine did nothing. They kept shooting me with more and more of it and it did nothing. I sucked it up and let them finish the procedure, but I wanted to scream bloody murder. I still have no idea why that didn't work, but it did not. The pain was grueling and I was a little woozy once again. At least it was finally done and I could go home.
This was another issue. I was told that the procedure was nothing and that I could drive myself home. I was in such pain and was so woozy that I drove myself home, but I shouldn't have. I'm still not sure how I got myself home and don't like that feeling. Take someone with you. You'll need a ride.
So, I had been told that the results would take 24 hours and that they would call me the minute that they heard the results. I made them promise, because I was waiting to hear whether or not I had breast cancer, and I had to know. My mind could not take the stress of not knowing. They promised.
So, I sat at home while my breast turned black from whatever happened with that second biopsy. I could barely move my arm and no amount of Tylenol helped. All I could do was sit and wait and suffer the pain that I was told I wouldn't have much of. I was cranky and my family didn't know what to do with me. They were as scared as I was, and it was a very rough night.
I had already reached that point where I didn't want to cause pain or suffering to my husband and son. My newly widowed mother was sitting in Arizona where she lives, worrying about her daughter. I had entered a phase that most women go through which is that I didn't want to cause my loved ones pain. I couldn't help it. There was nothing I could do but wait.
My story will continue. I hope it helps someone out there.
As we travel on my journey, the next step that I had to go through was to have the biopsies. I had not checked too deeply into my medical situation at that point, because we weren't sure that there was anything wrong yet. I was told by doctors, navigators, and technicians that 90% of biopsies did not come back as a cancer result. I was very nervous and no one could seem to figure out why.
Let me explain. I've always been special. When I was a kid, I had problems that were rare. They had to be taken care of. When I had my son, we had an unusually complicated delivery that ended in a C Section. Then I almost had my Gallbladder blow up and didn't realize that there was a problem. I had Pneumonia and ended up with an inhaler for life. I started to produce kidney stones a couple of years after that. My favorite was the affliction that I called boo boo gut, because no one could figure out why I had pains shooting up my left side. I went through six weeks of tests and no one knew. Several years later we discovered that the pain comes from Osteitis Pubis; a break in the cartilage that holds the pelvis together. It's a permanent injury that normally only happens to Australian football players and only effects around 40 women a year around the world. Special. That made me nervous. I'm always in the 10%.
I was told that it would be wise to give myself 48 hours to recuperate from the biopsies, because there was more than one and I had to be able to lift 50 pounds to go to work. I was told that I wouldn't have hardly any pain, but that I might be tired. I made arrangements at work for the test procedure. We shuffled the schedule around for coverage just so I could have this done.
I reported for my biopsy and found the doctor that had been so nasty to me. He was nasty again, and I reacted. At this point, he refused to do the biopsies and walked out. The technicians and office people tried to find another doctor that could come to the mammography center from the hospital and do the biopsy, but they had no luck. I had inconvenienced everyone I work with for no reason. I didn't realize that they had scheduled me with this nasty doctor who did nothing but be rude and yell at me. I had told everyone at the mammography center that I couldn't deal with this man. So, after all the trouble, we had to reschedule the biopsies and I had to rearrange my work schedule again to have this done. More hassle, and not just for me.
I rescheduled and did what I had to do. The biopsies were to be done just before Columbus Day Weekend. They had scheduled me outside of the normal schedule so that I could have another doctor. I felt horrible, but the doctor who apparently handles all the biopsies was nasty to me. He refused to continue, so what could I do? I said that I would let him do the procedure. He was the one who refused.
I arrived and changed into my easy access boob shirt and went for my biopsies. The other doctor was very nice. He was young, but nice. So starts the odyssey. They marked my breast and clamped me into the mammogram machine. There were two technicians and the doctor in the room. Now, let me describe the procedure, because I was shocked. I don't know if it would help most women to know what was coming or not, but it would have helped me, so I'm telling.
Once they get you into position, they take a needle and shoot you with a numbing agent--Lidocaine. It stings, but I would rather be numb. If you have anxiety, this alone will freak you out. You are sitting for this procedure, so if you tend to faint, this is a touchy situation. I was nervous but okay at that point. One of the technicians came over to my other side and started to make small talk with me to keep me calm and in place. That was fine. She and I had the same name which immediately gave us something to talk about.
What I did not know, and I didn't see coming was the device that the biopsies are done with. The technician was trying to keep me distracted while the doctor and the other technician did the procedure. I heard a click that sounded like a big gun being cocked. I looked, and I shouldn't have. What they do is that use what looked like a drill press. They attached it just above the plate where your breast is clamped on and then they drill right in there to get the tissue. I was so shocked at the sight of the thing that I nearly passed out right on the spot. I'm a really tough cookie, and it freaked me right out. I did not look at it after that moment.
The doctor had no trouble doing the first tissue removal, and I didn't feel a thing. It was all good, but it had freaked me out so bad when I saw the device that after the procedure, I was shocky and unstable. They had to get me something to drink and I'm allergic to oranges, so orange juice wouldn't do. The only thing that they had in the whole building was a juice box that belonged to the technician that had been trying to keep me distracted. She graciously donated her apple juice and I went about trying to calm down.
Fortunately, there had to be a break between biopsies anyway. The time factor didn't get messed up because of my episode. I was much calmer going into the second biopsy, because I now knew what it was like. I was prepared and ready to go. They got me set up, shot me with some more Lidocaine and we proceeded with the second biopsy.
The second biopsy didn't go well. It hurt. I don't even really feel pain in my torso area and this hurt. It was like the Lidocaine did nothing. They kept shooting me with more and more of it and it did nothing. I sucked it up and let them finish the procedure, but I wanted to scream bloody murder. I still have no idea why that didn't work, but it did not. The pain was grueling and I was a little woozy once again. At least it was finally done and I could go home.
This was another issue. I was told that the procedure was nothing and that I could drive myself home. I was in such pain and was so woozy that I drove myself home, but I shouldn't have. I'm still not sure how I got myself home and don't like that feeling. Take someone with you. You'll need a ride.
So, I had been told that the results would take 24 hours and that they would call me the minute that they heard the results. I made them promise, because I was waiting to hear whether or not I had breast cancer, and I had to know. My mind could not take the stress of not knowing. They promised.
So, I sat at home while my breast turned black from whatever happened with that second biopsy. I could barely move my arm and no amount of Tylenol helped. All I could do was sit and wait and suffer the pain that I was told I wouldn't have much of. I was cranky and my family didn't know what to do with me. They were as scared as I was, and it was a very rough night.
I had already reached that point where I didn't want to cause pain or suffering to my husband and son. My newly widowed mother was sitting in Arizona where she lives, worrying about her daughter. I had entered a phase that most women go through which is that I didn't want to cause my loved ones pain. I couldn't help it. There was nothing I could do but wait.
My story will continue. I hope it helps someone out there.
Wednesday, February 22, 2017
Then They Definitely Saw Something...
The next step in my particular odyssey was to have an ultrasound. I asked that I not have to see the nasty doctor ever again, and the girls in the office at the mammography center gladly obliged and scheduled me to come in when the one other doctor that worked on site was there. That appointment was for September 28th.
I came in and the technicians were very nice as was the alternative doctor. They were doing ultrasounds on both breasts, because there was something that was unclear in the left one, as well as something definite going on in the right one. No one at this point was sure what the calcifications were in the right breast or what the node in the left breast was.
Just a note here. If you get the okay for assistance through grant money for help with your diagnostic bills, let the office at the mammography center know about this. They will list the grant organization as secondary insurance so that they can submit it after they have attempted to submit it to your primary health insurance. Always check before you go in for additional imaging from a mammogram. Do not ever presume that your health insurance will pay for additional imaging or a biopsy. Some will, many won't. Check first, then talk to the people that work at your mammography center. Get all your information. Have it done, but figure out the financials first. It only takes a day or two to figure out how you will pay for the imaging. Then you can get on with the diagnostic process. Remember, if you are worried about money it will do you no good. Get the peace of mind of resolving the money. A couple of days is worth it.
So, I let the girls in the office know what agency the breast cancer navigator had told me to have them bill as secondary insurance and then I went to have my ultrasounds. Ultrasounds are painless, even better than the mammogram. Mammograms are really not painful. I'd heard that for years, but when it was time for me to start having them, I didn't know what all the fuss was about. Ultrasounds are just like the ones you have when you are pregnant, just on you boobs. The goo is warm, and the whole things actually tickles. After it's done, you are just a gooey, tickly mess. Nothing that little clean up won't cure.
My results were given to me immediately from these ultrasounds. The node on the left breast was nothing. Yippie! Half of my concerns were already gone. The right breast, not so lucky. They indeed found what looked like snow in the breast. There were little calcifications all over the breast. There were two groupings that were of particular concern. I would have to come back for multiple biopsies.
Let me pause here to explain a calcification. Being a woman, you would think that I completely understood how a breast works. I had two of them. But, as most women will tell you, we know a lot more about them as a toy for our husbands or a milk distributor for our children than we know about the actual goings on inside of them.
A calcification is a mass that develops inside the milk ducts of the breast. There are over a thousand ducts in a breast. This is a lot of potential for masses to develop. There is nothing that a woman does that causes this to happen. Heredity is probably the leading factor as in most cancers. There are theories that diet or if you didn't breast feed your children causes this, but there is no evidence of such craziness. Mine was caused by an overabundance of Estrogen. This is not something that I would have known or been able to control however. Cancer just happens.
When dealing with calcifications there are different levels as in any other issue. Not all calcifications are cancerous. Some are just mass. That's why they do biopsies. That's why I had to come back. That's why I hate the way insurances have worked especially since Obamacare. A lot of them won't pay. I couldn't pay a couple of thousand dollars for multiple biopsies. I couldn't pay a thousand dollars for an ultrasound, or more for two. Without the help of grant money and breast cancer navigators that help you find a way to pay, I don't know what I would have done. Fortunately, those people are there, and it was done.
I made an appointment for the following week on October 3rd, to have the multiple biopsies and went on my way for the day. Now I had to wait a week or so to find out what was going on inside my breast. Now I had yet another week for my mind to wonder where my life was about to go. I still had to take care of my life, my family, work, pets, and house. Because of everything that was potentially happening to me, my mind couldn't focus on much else. Cancer is the scariest word I ever heard. I was only 51 at that time. I was way too young to die. I spent the next week trying to function while being about as distracted as I had ever been. All I could do was wait.
I hope that breast cancer patients will find this helpful. I wish that I had been more prepared for what I would go through. I hope that people will continue to follow this as I continue my story. I hope that it helps at least one person with their journey.
I came in and the technicians were very nice as was the alternative doctor. They were doing ultrasounds on both breasts, because there was something that was unclear in the left one, as well as something definite going on in the right one. No one at this point was sure what the calcifications were in the right breast or what the node in the left breast was.
Just a note here. If you get the okay for assistance through grant money for help with your diagnostic bills, let the office at the mammography center know about this. They will list the grant organization as secondary insurance so that they can submit it after they have attempted to submit it to your primary health insurance. Always check before you go in for additional imaging from a mammogram. Do not ever presume that your health insurance will pay for additional imaging or a biopsy. Some will, many won't. Check first, then talk to the people that work at your mammography center. Get all your information. Have it done, but figure out the financials first. It only takes a day or two to figure out how you will pay for the imaging. Then you can get on with the diagnostic process. Remember, if you are worried about money it will do you no good. Get the peace of mind of resolving the money. A couple of days is worth it.
So, I let the girls in the office know what agency the breast cancer navigator had told me to have them bill as secondary insurance and then I went to have my ultrasounds. Ultrasounds are painless, even better than the mammogram. Mammograms are really not painful. I'd heard that for years, but when it was time for me to start having them, I didn't know what all the fuss was about. Ultrasounds are just like the ones you have when you are pregnant, just on you boobs. The goo is warm, and the whole things actually tickles. After it's done, you are just a gooey, tickly mess. Nothing that little clean up won't cure.
My results were given to me immediately from these ultrasounds. The node on the left breast was nothing. Yippie! Half of my concerns were already gone. The right breast, not so lucky. They indeed found what looked like snow in the breast. There were little calcifications all over the breast. There were two groupings that were of particular concern. I would have to come back for multiple biopsies.
Let me pause here to explain a calcification. Being a woman, you would think that I completely understood how a breast works. I had two of them. But, as most women will tell you, we know a lot more about them as a toy for our husbands or a milk distributor for our children than we know about the actual goings on inside of them.
A calcification is a mass that develops inside the milk ducts of the breast. There are over a thousand ducts in a breast. This is a lot of potential for masses to develop. There is nothing that a woman does that causes this to happen. Heredity is probably the leading factor as in most cancers. There are theories that diet or if you didn't breast feed your children causes this, but there is no evidence of such craziness. Mine was caused by an overabundance of Estrogen. This is not something that I would have known or been able to control however. Cancer just happens.
When dealing with calcifications there are different levels as in any other issue. Not all calcifications are cancerous. Some are just mass. That's why they do biopsies. That's why I had to come back. That's why I hate the way insurances have worked especially since Obamacare. A lot of them won't pay. I couldn't pay a couple of thousand dollars for multiple biopsies. I couldn't pay a thousand dollars for an ultrasound, or more for two. Without the help of grant money and breast cancer navigators that help you find a way to pay, I don't know what I would have done. Fortunately, those people are there, and it was done.
I made an appointment for the following week on October 3rd, to have the multiple biopsies and went on my way for the day. Now I had to wait a week or so to find out what was going on inside my breast. Now I had yet another week for my mind to wonder where my life was about to go. I still had to take care of my life, my family, work, pets, and house. Because of everything that was potentially happening to me, my mind couldn't focus on much else. Cancer is the scariest word I ever heard. I was only 51 at that time. I was way too young to die. I spent the next week trying to function while being about as distracted as I had ever been. All I could do was wait.
I hope that breast cancer patients will find this helpful. I wish that I had been more prepared for what I would go through. I hope that people will continue to follow this as I continue my story. I hope that it helps at least one person with their journey.
Tuesday, February 21, 2017
So, They Said They Found Something...
My world is my family. Combined with work, hobbies, food, travel, and more work. I'm 52 years old as of last October. I live in Connecticut in the hills and most of the time I consider myself to be surrounded by idiots. Not at work or home mind you, but out in the world. The strangers seem like the idiots, not the coworkers or family. I like to picture myself as a self sufficient homosapien that does what the world would expect her to do and pays her bills. I raise my son, take care of my pets and husband, and run the house. Pretty uninteresting. What I do have is a keen mind, a great IQ, and a strong will. Maybe that's what made this experience so interesting. Maybe that's not what did it.
I went in for a routine mammogram in September. For me, routine means that I go in and have the mammogram. The doctor reviews the mammogram and discovers that I have what's called dense breast tissue. This means, in layman's terms that I have small boobs and that makes the tissue more difficult to examine. Just one more reason why it's better to have big boobs. What they want to do after that is have you come back for what they call additional imaging, which in my case means that I have to pay for it, because my private health insurance won't pay. I have private insurance because I work for a company that offers it. I could have had Obamacare and gotten government subsidies, but because of the way that law is written, I have to pay the crazy amounts for private insurance and suffer the indignity of getting no tax credit for it. But I digress.
Anyway, I went through the process of not being able to pay for additional imaging just because my breasts are dense for years. Last year, the OBGYN had told me the same thing as many times before. This year I go in and I am accosted by a radiologist in the waiting room while I'm wearing my easy access breast shirt. He starts yelling at me in front of patients and staff about how I was irresponsible because I didn't come back for additional imaging the year before. I'd never met this doctor, and I instantly was not impressed. I asked if we could discuss the matter somewhere else, as I was embarrassed. He moved to the hallway next to the waiting room. I was still not impressed.
At this point, I went with a technician to have my mammogram done and the doctor went on his way. I had the mammogram which seemed uneventful and went to get dressed. A technician came and asked me to come to an office. The nasty doctor was in the office waiting for me. Finally, we could talk someplace that wasn't completely public.
He explained that there had been something called calcifications found on my mammogram the year before. I told him that my doctor had only talked about dense tissue once again. He called me a liar. I was done with this relationship. I would rather have dealt with a witch doctor after that. He told me that I had to come back for extra imaging so that they could find out what was going on. The technician that was now standing in the office with us agreed with him. I trusted the technician more than the doctor at that point, so I agreed. I told them that I would just have to figure out how to pay for it. The doctor didn't seem to care if I could pay.
I left the office and the technician approached me in the hallway. She told me to give this woman a call and handed me a post it with a woman's name and a phone number on it. Then she went away. I went home not knowing what to think, because it was such a bizarre experience and there wasn't really any breast cancer in my family. My dad's mom did have it, but I'd always been told that it didn't normally travel that hereditary road. I didn't know what to think except that I wanted to beat that doctor with a stick.
I arrived home and told my husband about my adventure. He got all upset that someone would treat me like that. After I calmed him down a little, we decided that I should call the number and see if we could manage to pay for the tests. Once that was decided, he went online to write the most scathing review that I'd ever seen about a doctor. I know for a fact that the doctor is still working at that office, and no one ever got a hold of either one of us to discuss out thoughts, so I guess that filling out the feedback section or even taking a survey does nothing for customer service in the medical field.
The next day I called the number and reached a breast cancer navigation unit at my local hospital. I had no idea that such a thing existed. There were two very nice ladies that worked there and they told me that they had grant money that they use to help women in my situation pay for the tests that we need. They promised to pay for both ultrasound and biopsy so that I could see exactly what I was dealing with.
I don't know how I ever would have gotten through my experience from beginning to end without the navigation unit and the two wonderful ladies. For anyone out there that thinks they aren't necessary, they are.
So I come to the end of chapter one. I hope that as I write this, someone will find it useful. I found as I went through this that I was not prepared for the real issues and problems that came with it. All the things that I was told about were not the problems. That's why I'm writing this and I hope that ladies will find it helpful.
Soon will come another part of this story.
I went in for a routine mammogram in September. For me, routine means that I go in and have the mammogram. The doctor reviews the mammogram and discovers that I have what's called dense breast tissue. This means, in layman's terms that I have small boobs and that makes the tissue more difficult to examine. Just one more reason why it's better to have big boobs. What they want to do after that is have you come back for what they call additional imaging, which in my case means that I have to pay for it, because my private health insurance won't pay. I have private insurance because I work for a company that offers it. I could have had Obamacare and gotten government subsidies, but because of the way that law is written, I have to pay the crazy amounts for private insurance and suffer the indignity of getting no tax credit for it. But I digress.
Anyway, I went through the process of not being able to pay for additional imaging just because my breasts are dense for years. Last year, the OBGYN had told me the same thing as many times before. This year I go in and I am accosted by a radiologist in the waiting room while I'm wearing my easy access breast shirt. He starts yelling at me in front of patients and staff about how I was irresponsible because I didn't come back for additional imaging the year before. I'd never met this doctor, and I instantly was not impressed. I asked if we could discuss the matter somewhere else, as I was embarrassed. He moved to the hallway next to the waiting room. I was still not impressed.
At this point, I went with a technician to have my mammogram done and the doctor went on his way. I had the mammogram which seemed uneventful and went to get dressed. A technician came and asked me to come to an office. The nasty doctor was in the office waiting for me. Finally, we could talk someplace that wasn't completely public.
He explained that there had been something called calcifications found on my mammogram the year before. I told him that my doctor had only talked about dense tissue once again. He called me a liar. I was done with this relationship. I would rather have dealt with a witch doctor after that. He told me that I had to come back for extra imaging so that they could find out what was going on. The technician that was now standing in the office with us agreed with him. I trusted the technician more than the doctor at that point, so I agreed. I told them that I would just have to figure out how to pay for it. The doctor didn't seem to care if I could pay.
I left the office and the technician approached me in the hallway. She told me to give this woman a call and handed me a post it with a woman's name and a phone number on it. Then she went away. I went home not knowing what to think, because it was such a bizarre experience and there wasn't really any breast cancer in my family. My dad's mom did have it, but I'd always been told that it didn't normally travel that hereditary road. I didn't know what to think except that I wanted to beat that doctor with a stick.
I arrived home and told my husband about my adventure. He got all upset that someone would treat me like that. After I calmed him down a little, we decided that I should call the number and see if we could manage to pay for the tests. Once that was decided, he went online to write the most scathing review that I'd ever seen about a doctor. I know for a fact that the doctor is still working at that office, and no one ever got a hold of either one of us to discuss out thoughts, so I guess that filling out the feedback section or even taking a survey does nothing for customer service in the medical field.
The next day I called the number and reached a breast cancer navigation unit at my local hospital. I had no idea that such a thing existed. There were two very nice ladies that worked there and they told me that they had grant money that they use to help women in my situation pay for the tests that we need. They promised to pay for both ultrasound and biopsy so that I could see exactly what I was dealing with.
I don't know how I ever would have gotten through my experience from beginning to end without the navigation unit and the two wonderful ladies. For anyone out there that thinks they aren't necessary, they are.
So I come to the end of chapter one. I hope that as I write this, someone will find it useful. I found as I went through this that I was not prepared for the real issues and problems that came with it. All the things that I was told about were not the problems. That's why I'm writing this and I hope that ladies will find it helpful.
Soon will come another part of this story.
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