Thursday, June 26, 2008
Kellie's June Update
Wednesday, June 25, 2008
Charlavan's Story
Yep. Me.
I have had lumps in my breasts for 20 years, but they were a fibrocystic condition and every doctor who looked at them had reached the same conclusion. They kept changing in size, got sore, went away, swelled again (occasionally became inflamed) but had nothing to do with cancer. The reason I even went to the doctor just before Christmas last year was because one of them in the right breast was enlarged, inflamed and annoying. I had the doctor take another look at it even though I had had mammogram just scant months before that. We decided to do it again. However, I went on an antibiotic to see if the swollen lump would respond, indicating it was a little inflamed.
The pictures showed the lump was there all right but was reducing in size and it was just that – an inflamed cyst. Since it resonated, we were sure it contained fluid and not a problem. But there was a shadow in the left breast that was harder to identify if indeed it was anything at all. The tissue was dense and there were no visible edges to the possible lump.
The doctor was comfortable in assuming that it was nothing to worry about but suggested we have someone else look at it. He said there was no hurry but after Christmas sometime I should call the surgeon he suggested and have him look at it. I called him in January and he couldn’t see me until February 10. Again he looked and said "It is probably O.K. but I will get the opinion of someone I really trust to take a look at the pictures." The considered opinion was to have a biopsy.
When I arrived for the biopsy they started the procedure by scanning the breasts first and started to prep the RIGHT one. I said, "No, it is the left one that is suspect." "No, the instructions read the RIGHT." The ‘last word’ on this was actually evaluating the left one but the instructions were written wrong. The actual culprit was all but ignored. At any rate, they gave me a mild general anesthetic, which only lowered my blood pressure but didn’t deaden the area or me. I am an unpredictable "putter outer" but it was tolerable and over quickly. (Sounds a little like a high powered staple gun.) Guys love guns.
I again waited for a week for the results and when I called the office to get them they asked that I come in and talk to the doctor. First clue. Then when he arrived at the examining room he came in with two other doctors. Second clue. One was a family counselor. ---Turn out the lights. The party’s over.
He said, "I am afraid the news is not good. It is not only cancer, but a very aggressive type and all of your options involve surgery. In fact, since it is right under the left nipple and we don’t have the option of a lumpectomy but it will have to be a modified radical mastectomy and we will lose the nipple. It was already large and growing rapidly. Your real options are just whether to have reconstruction or not and if so, which method you prefer."
"We can have them insert an implant or you can choose to have a beast built from your own tissue from the stomach." He then examined my stomach and said even that option was not a given since we need maybe more fat than I had. (A first for me.) He told me to go home and gain some weight and have a plastic surgeon look at it right away.
I have always had a morbid fear of having a breast removed because when I was young, I had an aunt (no blood relation) who had died from breast cancer and that was AFTER the operation had left her mutilated. I had visions of my aunt when all of those words tumbled out of the doctor’s mouth. (I learned later than one of my grandmothers had also died of breast cancer but didn’t know that at the time.) They have improved the procedure now of course, but I wanted nothing to do with the whole thing. I was just sure that as soon as I gave them the OK to cut, they would come up with a miracle cure.
Women shouldn’t be asked to give up their looks and health at the same time. In our culture there is a bigger than life interest in that portion of the anatomy. I had no trouble deciding on reconstruction so I called the plastic surgeon. It was now Friday and I couldn’t see the doctor until Monday. It was a long weekend but I consumed about 10,000 ‘fat calories’ and didn’t spend any of them except on a modicum of worry and anxiety.
When I did see him though I had about resigned myself to the fact that I was not going to risk dying with this thing, which the first surgeon had assured me would be my other option. This plastic surgeon was at the top of his field and I had no qualms about taking his advice. He said that the T.R.A.M. flap reconstructions would produce the best results since building a breast out of your own tissue would be more apt to match the remaining breast and it would involve only one operation instead of several. When we finished with the left side he would then reduce the right side to match it and that is what we decided to do.
Again we had to address the stomach fat issue and he concluded that he could get probably a C- but not a C+. Great. He explained that he would be removing some muscle on one side as well as the available fat because fat doesn’t contain a blood supply.
The first week I put on 5 pounds and could have played middle line backer for any respectable team. We were still 10 days away from the scheduled surgery and counting….(With all those doctors and that much time needed for the operating room that was the best we could do.)
I am an artist and I painted furiously during that time, trying to lose myself in the work and it was a Godsend. Staying busy is an absolute necessity.
The big "O" turned into three big operations and I can tell you for sure I wasn’t ready for that. When I first decided to write this I had two things in mind. The first was to quell the fears of anyone who was facing the same issue. With that in mind I intended to keep it all very positive but informative. But there are some things between ‘frightened at the word cancer’ and ‘gee, it is all over and I am fine’ that aren’t all that much fun. The second was to give me a project and a vent mechanism. I also knew that if I had been able to see pictures of someone else it would have been easier.
If I know what to expect, I will adapt and won’t be afraid. Well, all of that ‘adapting crap’ is just that. It does hurt. General anesthetics are dangerous any time but along with the natural dangers they impose are some very annoying things they may or may not be responsible for. As I sit here almost a year later, the bottoms of my feet are still a little numb. No one is this medical circuit claims any knowledge of it so maybe it is just unique to me. The most logical explanation came from a friend who happens to be an anesthesiologist. He suggested that perhaps I wasn’t moved often enough during the long surgery and a nerve that supplies feeling to the feet was damaged.
Also, one of the most irritating things you endure even though it is only for a few weeks are the drainage lines that you wake up with from the surgery. I had two in the lower abdomen and one under the arm. They have to be addressed and emptied several times a day and night and you WILL catch those lines on something regularly and they will ‘spill’ regularly. Now you just know these are necessary and short term but they ARE hard to dress around. The only saving grace is that you feel so crappy most of that time it isn’t quite such a big deal in comparison.
For the T.R.A.M. flap they remove a ‘flap’ by cutting a line from behind the hip bone on each side, down to the hairline, then another curving line above the belly button, removing the flap and re-joining the lines. They make a new belly button! You wake up with the tummy of a 12 year old but one in a good deal of PAIN. They configure a breast out of the flap they removed and reattach the supply lines. It was beautiful…….for 8 days. Then it turned black and died. The doctor was successful in getting the blood to supply it but it would not ‘return’ so it collected.
I was operated on Tuesday and released from the hospital on Saturday afternoon. On Monday I went to the doctor’s office to have him check it. His first words were "WHAT HAPPENED??? SOMETHING WENT HORRIBLY WRONG."
Now I will admit that the color was suspect since it went from blue/red/purple to something bordering royal burgundy but there was so much bruising I really didn’t know what to look for to determine that everything was not going well. I did know I had had a bad night on Sunday and the breast seemed to be growing!!! But no, I didn’t know there was anything wrong. The doctor had performed this operation hundreds of times in 20 years and it had never happened. I had and still have great faith in him. He was crushed. Me too. He said in all that time he had ‘lost’ 3 or 4 but all within 48 hours and with those it was evident from the start. This, however, looked like a great job and he suspected nothing.
He started puncturing the center of the new breast with a very large needle. It looked gross but didn’t hurt. In fact, he did this in the office after calling the hospital for a quick admittance. Then he said something I thought surely I had misunderstood but it SOUNDED like ‘then we will have some leeches flown in.’ Some ‘not for your ears’ medical term??? NO, real leeches as in African Queen.
When the additional hole punching and abrading didn’t work, we started "leech therapy". (The leeches fill themselves with the blood from your body and this sucking action will often make the blood flow sufficiently to re-establish the supply and return lines.)
This procedure involved cutting the bottom out of a Styrofoam cup and positioning it over the breast. When it was taped in place they would place a single leech in the cup. It’s only job was to have a party and feast on my flesh. It was the main event at the hospital and at times there was standing room only. My gallery and I named them everything from Horatio to Monica. We recorded their progress for four days and they were replaced every few hours when they were full. But on the fourth day we stopped because they had overworked the area so much they were crawling out of the cup and onto other parts of my ‘tired-of-it-all’ body.
By this time we were closing in on two weeks since the original surgery and we went back into the operating room to remove it and start the process for a regular implant. This would involve putting in place an inflatable device that would be used to stretch the skin enough to hold the implant (just what I was trying to avoid in the first place because it would now take longer and with lesser results.)
One more time I had to go back onto the operating table when the sutures became infected after the second surgery. The doctor had to cut along the incision, irrigate the site and sew it up again. The only good thing about this is that the surgeries were scaling down in magnitude each time.
The tumor they removed was about the size of a thumbnail and the cells had also migrated into several lymph nodes under the arm, etc. so the recommended treatment was chemo therapy. Radiation works best on smaller and more contained areas.
I started chemo while we were waiting for the final operations. I was admittedly scared of this. It was not simply because I knew it would make me sick and I would lose my hair, etc. but I have a very delicate chemistry balance and I figured it would be difficult to tolerate. I routinely refuse drugs if they can be avoided. They schedule you for four sessions of treatment and these are three weeks apart. The oncologist had told me about when to expect my hair to fall out and I waited for a couple of weeks and shaved my head. It was much easier for me that way than to wait and watch it go. (I think it is a little control issue.) It had started to become very brittle and it was time.
In my case they used adriomyacin and cytoxin. It is administered through an IV after ample blood work. They start with just saline solution and anti-nausea medication. Then they slowly inject the first of two cocktails into the shunt they place into your arm. It is very important that the fluid doesn’t seep out onto your skin since it would cause a severe burn. They follow that with more saline to push it through. I reacted to the second with some itching and burning at the site but they gave me what seemed like about a liter of benadryl and I walked out. (I don’t remember much of that part abut I was in no pain.)
The rest of the day I felt surprisingly well (until the anti-nausea med wore off.) Then I got sick. They say some people actually never throw up during this part but I wasn’t one of them. They have some very good medications for that now, but they aren’t without side effects. I stopped after taking the first one. (They are also VERY expensive.) Even the meds I had been taking for pain now would make me nauseous. That subsides somewhat after about the fourth day. I even tried to smoke a couple of joints but I did a laughable job of that. I am pretty determined to "try everything’ and even more so once I decided I was mortal.
Veronica's Story
These are the words of Methuen City Councilor Debbie Quinn and Methuen Fire Department and Veterans Affair employee Dottie Avery when speaking of Riverbank Vice President and Branch Manager Veronica Calixto.
Quinn and Avery are taking part in the breast cancer three day walk benefiting the Susan G. Komen For the Cure Foundation. The walk will take place August 15-17 in Boston and Quinn and Avery will be walking in Veronica’s honor. Veronica’s name will appear on their t-shirts and anyone who makes a donation in honor of a loved one or in memory of someone will have that name appear on their t-shirts.
Quinn met Veronica at a recent Board of Trade meeting where Veronica was seated at her table. “Her story is so compelling and moving and we knew that we needed to tell it,” related Quinn. “I noticed this young, pretty girl wearing a wig. She was speaking so bravely and confidently about the situation she was going through that I was overcome by the reality of her situation. She was facing life and death and yet was moving forward in a positive and optimistic manner. Right then and there I knew Dottie and I needed to walk in honor of Veronica,” concluded Quinn.
Veronica is 31 years old, married to Johnny and they have two beautiful, young daughters, ages 7 and 2. Veronica jokes that last year around January or February she began hearing commercials for the walk for cancer and heard the statistic that one in five women will be diagnosed with breast cancer.
She said, “I have four very close girlfriends whom I grew up with and we are in our 30’s and I used to say to them, jokingly, that one of us is going to get it.”
Then she recalled, “But that statistic of one in five kept playing in my head over and over and I decided to begin doing self exams.”
Several months later, in September 2007, Veronica became a statistic from that commercial when she found a lump. “Because I had no family history of cancer, a mammogram would typically not be performed until I was 40. As my case illustrates, women under 40 need to do self exams and go for annual doctor visits,” says Veronica.
“I was extremely angry when I found the tumor and I figured this can’t be happening to me. This is not part of my plan. This is not acceptable. But then I got over it and realized, thank God I found it!” she says.
Veronica immediately called her doctor, Dr. Kaul in Methuen, who scheduled a mammogram and biopsy at Holy Family Hospital.
“I am very grateful to her (Dr. Kaul) because she dealt with it very urgently. She called the hospital to get me in for a mammogram and biopsy and told them that I needed to be seen immediately,”
After the tests confirmed that Veronica had breast cancer, she then contacted Dana Farber in Boston for a second opinion.
“I had been watching TV and following WCVB Kelly Tuthill’s story of how she was dealing with breast cancer and I contacted her plastic surgeon at Dana Farber, Doctor Donald Morris.” says Veronica.
Veronica had a 3 ½ cm tumor and was diagnosed with grade 3 cancer and, in December 2007, underwent a transplant mastectomy.
“My breast cancer is HER-2 positive,” Veronica explained. “Up until two years ago, Herceptin, the treatment used for patients with HER-2 positive breast cancer did not exist....my prognosis would have been a lot worse.”
“I had a transplant mastectomy and a tummy tuck where the doctors used my own tissue for reconstruction. It led to a very difficult recovery and issues with the healing process. That is why I need to undergo a second procedure, because of issues with healing “ says Veronica. After the surgery in December, Veronica underwent both chemotherapy and radiation with her last radiation treatment on April 30th .
Veronica will be undergoing further re-constructive surgery this month and then will begin additional radiation treatment the first week of June and additional chemotherapy shortly after that.
“They were able to remove all of the cancer the first time but because Grade 3 cancer is the most aggressive type of can-cer, and because I am so young, the doc-tors and I opted for aggressive treatment with both radiation and chemotherapy after this surgery,” she says.
After Chemotherapy the first time, Veronica lost her hair, eyebrows and eyelashes. Her husband has “been amazing,” she says noting that he took several months off from work to take care of her.
“This month is our 10 year anniversary, and, hopefully, we can go out for dinner to celebrate.”
Her mother also helps take care of her and has taken her for treatments. Her seven year old daughter is quite aware of the situation and they have included her in what Veronica is going through, explaining the process to her, so she will understand.
“I have taken her to chemo and we have met with a councilor. She is having a very difficult time with it.” Veronica began to cry while talking about her daughter.
“The other day, she came home from school and asked Mommy, “Are you go-ng to die? Because kids at school say that people with cancer die.” Veronica then had to reassure her daughter. Her two year old sees what is happening to her mother but is too young to understand. According to the American Cancer Foundation, an estimated 182,486 NEW cases of invasive breast cancer will be diagnosed in 2008.
“These figures are staggering,” commented Quinn.
Veronica is not able to walk with Debbie or Dottie this year, but excitedly says, “I will absolutely be walking with them next year.”
Veta's Story
Walking into the office was a real challenge because the former group manager who was a close friend to me had been transferred to Virginia and the position that I assumed had been vacant for about three months. A lot of customers were lost in that timeframe including a few national accounts. Anyway, to make a long story short, I was well into my learning curve and accomplishing a lot of things to get the group of three branch offices back in the green.
And because of my hectic schedule, I called to cancel my annual physical for a scheduled mammogram. My physician at that time was a wonderful young female doctor whom I still admire greatly. When I called her office to reschedule my appointment, her nurse got on the phone and encouraged me to keep my scheduled appointment because I would have had to wait about another three to four months to get a different appointment. I told her how very busy I was at the time and she encouraged me to keep that appointment.
The day I went for my mammogram will forever live in my memory. I had found a lump in one breast which I was concerned about. The technician took the films, and after a very long time, she came back and said they needed to re-film one of my breasts. I said “oh no, it is something in my left breast.” She stated “that one is okay, you just still have the fibracystic breast disease in that one.” The doctor wanted to check the right one again. So we went through the “pancake compression” process again. I waited for about 20 minutes and she came back and said the doctor wanted her to retake the film again. So here we went all over again. The technician said “I hate to hurt you, but I have to really flatten this and get a good picture for the doctor.” I told her to do whatever they needed to do and I gritted my teeth.
I waited again for what seemed an eternity. Then the technician came into the room and said “Mrs. Weaver, the doctor wants to see you.” I felt as though I were walking to my execution going down that long hallway. When we arrived in the room, the female physician just simply told me that she was not going to sugar coat it, but she had found something of great concern. She showed me on the film up on the wall and she said she needed to do a sonogram and try to pinpoint the exact location. I shall always remember how she, the nurse and I just sort of joked through the entire process and I even told her at one point that I certainly wanted to save both breasts in case I ever decided to be a topless dancer. I was of course just kidding, but the doctor said “yes we always should keep all our options open.”
After this process, I was then scheduled to see a surgeon who scheduled the surgery and I had to have a needle biopsy just before the surgery. They actually rolled me from the hospital into the breast clinic, inserted the needle into the exact place, then rolled me back to the surgery area for the removal of the lump.
It was a really easy process and since one of my sisters had a benign lump removed, and my mother also had a benign lump removed several years before that, I just was absolutely not concerned.
After the removal of the lump, I went back to work and on the day for my follow up appointment, I was in the Tyler office alone. I had sent two of my office managers to a training session in Austin and had one open position and I was trying to man all three offices alone. We had the capability to forward phones from one office or several offices to another and we could work within each location’s data on the computers since they were all networked together.
I went for my appointment and remember that the nurse came out in the waiting room to ask me if I had brought anyone with me. It just never dawned on me that I should have brought someone with me. Finally, the nurse called me into the doctor’s office and the surgeon began to tell me that I had a “Non-invasive carcinoma.” In other words, he was saying, it was malignant. I just sort of went into shock, but I felt like I had left my body and was listening to someone ask questions (me) about what should we do now.
After going through all the details of my options which included another surgery to remove a much larger area where the lump had been removed already, or a mastectomy, or a mastectomy and reconstruction, I pulled myself together and asked “Which procedure will allow me to live the longest?” My surgeon stated to me that anytime you do the mastectomy, there was a greater chance of living longer without it returning. I told him “Then there is no decision. Let’s remove it.”
I went back to my office and could not call anyone because I knew I could not allow myself to discuss this over the phone. Miraculously, the phones that had been ringing off the wall for days just stopped ringing. After about 30 minutes, my surgeon’s nurse called me and she advised me that the doctor was worried about me because I had appeared to go into shock. She said “Do you understand what he told you and that you are so very lucky?” I then broke down and sobbed for a while with the nurse gently talking me through this over the phone. After a while I calmed down and said, “I am not the first woman that this happened to, and I won’t be the last.”
Later that day when I returned home, my husband was in the kitchen and he was talking a mile a minute and I thought he would never stop. Finally I told him that I needed to talk with him. And he looked at me and said “It was cancer wasn’t it?” and I broke down again.
After the surgeon scheduled me to go see a radiologist, a cancer doctor, and a plastic surgeon, I tried to decide who to take with me. My husband and I discussed it at length and I decided to take my only daughter. Upon hearing the details of my options from the various physicians, I made my decision with the encouragement and support of my daughter.
Because my cancer was contained and had not traveled outside the walls of one gland, and since it was about the size of a pencil eraser, I did not have to have radiation or chemotherapy by choosing the mastectomy option. My reconstruction was difficult for me, but I am so glad that I selected that option. I never saw myself without a breast.
I believe that my recovery was easier than most because I had a very supportive husband, family, my daughter was there for me every minute, and my neighbors and friends were there for me. And my employer had wonderful medical insurance coverage, I had a nice cancer coverage policy, and my medical insurance paid for a home health care nurse to come to my house to assist with bandages etc for weeks. And since I had taken out the extra disability insurance on my job, I received 100% of my paycheck for approximately three months that I was off.
Now I say I was off, however, since I was the manager with a huge responsibility, my husband drove me regularly several times a week to one of my offices to hold a staff meeting and make sure that things were going well. He would help me into the car and out of the car and then come back to get me later. Not many women are as lucky as I was. And the young man that had breast cancer at the same time that I did was not so lucky. My surgeon told me that young man was not going to survive.
I talked with my two sons and told them how they could be just as vulnerable as their sister in getting breast cancer. My youngest son laughed and joked with me about it, but I hope that all three of my children know what a great risk factor they have. Men should examine themselves regularly as well because they can get breast cancer too.
When I was diagnosed, I had sisters, friends, cousins, and numerous relatives that all rushed in for mammograms. Many of them had never had a mammogram. No one in my mother’s side of the family had ever had breast cancer. I am the only one in the entire Johnson family to get breast cancer. Since my cancer, one of my cousin’s wives has had breast cancer and she is not a blood relative of the Johnson family. My father’s mother had died from double breast cancer when I was a child. Surprised? Not nearly as much as my family was. The physicians even raised eyebrows over this one.
Given the circumstances leading up to my diagnosis, I just feel so very blessed. God had a mission for me and I may never know exactly what that mission was or is, but God knows. I am a SURVIVOR!
October 19 is National Mammography Day. Don’t take a chance. The cost without insurance is probably less than maybe a hundred dollars. Don’t take a chance with your life. Go ahead and make that call. Do it for your children, your grandchildren, your spouse, and your elderly parents. But most of all, do it for YOU!
Betty's Story
I have been divorced for 12 years and was tired of being away from my family. I had a mammogram before i left N.M. in October. By the time the letter found it's way to me, 4 months later i was already living in Texas. I was shocked to see an "abnormality" noted in the letter. I immediately consulted with my family doctor who sent me to Paris Digital Mammogram Clinic where they promptly diagnosed me with invasive breast cancer, estrogen fed. I was absolutely scared to death. I cried a lot, my sister slept with me for days, i could not bear to be alone.
I finally got up the nerve to call my son's father; I could not bear to break the news to Seth, my son. I immediately consulted with a surgeon about a mastectomy, he recommended that I have a lumpectomy with chemo or radiation treatments whichever my oncologist referred me to have. And my cancer is estrogen fed so i was prescribed a new medication (arimidex) which is what i refer to as my "birth control pill" for cancer. It kills all the estrogen in my body which is what the cancer feeds off of.
Long story short, I ended up going to a doctor in Mt. Pleasant, Dr. Cuenca, and she advised the lumpectomy because she had requested a "Oncu" test that determines how high a risk factor recurring cancer is in a person. Mine was low, 11% so I had a lumpectomy March 10th and started radiation treatments in April. I have take 32 of them and tomorrow June 25 is my last one.
I met with Dr. Cuenca last month and asked her, "Will I ever be cancer free?" She told me that I really needed to have some FAITH, that the doctors are doing everything they can to make sure that I am going to be. I am truly blessed though. I sit with people everyday at the cancer center and we share our stories. At first I was scared and apprehensive about going to treatment, but as I am approaching my "graduation" day, I realize how thankful I am that there are Cancer Centers to take care of people like me. I am a totally different person, I see things very differently now and I am working on that FAITH the doctor spoke with me about. My son and his father as well as my twin and my brother-in-law are my biggest support group, I would love to share my story to help encourage other women.
Carol's Story
The results of the biopsy were that I had pre cancer (atypical cells) and was sent to a medical oncologist. His treatment plan was for me to go on the drug Tamoxifen. After reading the side affects of the drug I was reluctant to go on this drug as it can cause other types of cancer. At this time I decided to go to Sloan Kettering for more advice regarding possible new drugs. My pathology slides were sent to Sloan and I was prepared with a notebook filled with questions. At my visit the doctor came in took out a diagram of a breast wrote atypical ductal hyperplasia on it, then crossed it out and wrote ductal carcinoma. She then proceeded to tell me that I didn’t have atypical hyperplasia that I had ductal carcinoma and needed further testing to determine how much of the cancer was in my breast. The next thing I heard was mastectomy and the tears filled my eyes. The doctor then said, “Oh I’m sorry, didn’t your doctor explain this to you?” I said no he didn’t know I was coming for a second opinion. At some point she acknowledged my notebook of questions. She also excused herself and left the room to check as to why the pathologist didn’t inform my doctor of the change of diagnosis. When she came back she explained that my oncologist should have received the new diagnosis she also told me I should be happy that I would have one breast. I didn’t quite feel that way.
Upon arriving home I called my oncologist and was told he wasn’t available to speak to. This was a Thursday. I continued to try him by phone the entire weekend. On Monday I had an appointment with him. I had such mixed feelings, I didn’t know if I could trust him. At my visit he seemed sincerely upset at the new diagnosis but informed me that the two diagnoses can be could be misunderstood. He apologized that his staff didn’t inform him of my calls and proceeded to give me his beeper number and his secretary’s direct number. I decided to continue my treatment with him, for some odd reason I was comfortable with him and did not want to change doctors at this point. I made my decision to remove both breasts even though the MRI indicated I only had cancer in one breast. The oncologist didn’t try to change my mind however; he didn’t seem to think I needed to remove both breasts. He recommended me to two plastic surgeons on my request. The plastic surgeon I chose felt removing both breasts was the safest way to go. During two different telephone conversations with the oncologist I realized that he had me confused with another patient. When I confronted him with this he apologized. All of this created much confusion and fear however I stayed with him.
On March 28, 2006 I had bilateral mastectomy and the start of reconstruction. I was in surgery about eight and a half hours. At my post operative visit with the oncologist I was informed that I made the best choice having both breasts removed because they had found cancer in both breasts. At that point I became terribly upset and my doctor couldn’t understand why. He just didn’t understand. Yes, I was happy I made the right choice but he never helped me make that choice. I did that because I didn’t want Radiation treatments and I didn’t want to repeat all this at a later date. I wanted the quickest and easiest way out. I didn’t want my husband and children to be burdened with me being sick. Having both breasts removed brings a roller coaster of feelings. These feelings change daily. One minute you’re happy to be alive the next you feel guilt. My reconstruction took four separate surgeries. In clothes I look great without clothes is another story. The scars are a constant reminder. But yes I’m alive. It’s difficult to forget because most of the day I feel the implants, they are hard and not normal. I was a stomach sleeper not anymore. If I end up on my stomach I wake up in pain. Please understand I am not complaining just stating the facts. By the way shortly after my mastectomy surgery my oncologist moved to California and by the way never told me, I found out when the secretary called to confirm my appointment and to inform me that I would be seeing a new doctor. My plastic surgeon and his staff have been compassionate and understanding during all my treatment. Throughout all my surgeries I never considered myself sick. I truly believe that is what helped me and my family get through all this difficult time. I have met so many wonderful friends due to my breast cancer and for this I am so grateful.
If I were a spokesperson for surviving breast cancer I would tell everyone to explore all options, get more than one opinion, go with your heart, and most of all pray. Prayer is so powerful.
Wednesday, June 11, 2008
Amanda's Story
Since getting diagnosis on August 15, 2007 with Stage 3B Breast Cancer, I have been undergoing treatment to combat this aggressive cancer. I've gone through the perils of chemotherapy with the hair loss and the new body image adjustment that I have to undergo because of the bilateral mastectomy. Lastly, the very visible skin burns on my neck and chest due to the 35 radiation treatments. Going through this treatment regiment has been one of the toughest things I have ever done.
Now at 26 and done with treatment, I am just waiting to see if the treatment regiment worked. Cancer-free are words that I will be longing to hear, but unfortunately I was told by one of my doctors that the term Cancer-free isn’t used until it has been five years without recurrence. So, my countdown towards Cancer-free started on May 1, 2008….so hopefully I’ll hear the words in 2013.
Being diagnosed with Breast Cancer has been a life changing event. Not only did it make me realize my own mortality, it gave me a new outlook on life. Everyone knows that one day they will die, but like most people I figured that would be when I am old and gray. I never in a million years would have thought that I would be dealing with a cancer diagnosis. The things that I was too scared to do suddenly were less scary, and I have started to take charge of my life. Having cancer has made me realized how short life can be, and I must live each day to the fullest cause I will never know when it will be my last.
In an effort to help raise awareness and money, I have decided to registered a team to take part in the Breast Cancer 3-Day in Dallas, Texas on November 7-9, 2008. To be a part of the Breast Cancer 3-Day, each of my team members must raise a minimum of $2,200. The 3-Day is a 60-mile walk over the course of three days where the net proceeds benefit Susan G. Komen for the Cure and National Philanthropic Trust, funding important breast cancer research, education, screening, and treatment.
Breast cancer is something that no one should ever have to go through, and by participating in this walk I hope to get one step closer to help find a cure. Until that day comes, I will walk. I walk for myself, fellow survivors, and for all who have lost their battle with breast cancer.
Cathy's Story
A visit to the Doctor for my first mammogram in May of 2006 would changed my life. On May 15th I was told I had breast cancer in my left breast and would need more test. I was scheduled for a MRI that would light up my breast to see just where the cancer was. My test picked up a spot in my right breast as well.
So my battle begins. I was scheduled for a bi-lateral mastectomy with immediate reconstruction. After learning I had positive lymph nodes removed from my right side I was scheduled for 8 rounds of chemotherapy to start no later than six weeks after my surgery. I developed an infection in my left breast and was taken back in to surgery to hopefully cure the infection. (This would be the first of 12 surgeries I would endure in a 20 month period.) After my chemo started I was very sick most of the time. My infection did not heal due to my immune system. I was in and out of the hospital every couple of months due to my infection. I found myself feeling bad more days than good. After my second treatment of chemo I started losing my hair. I was very self-conscious about my hair loss and did not want to leave my house.
I just had my 12th surgery on March 25, 2008. My Doctor decided to remove all the tissue from my left breast and put in an implant. So far it has healed well and I've had no sign of infection. I will go back in the hospital around July of this year to have a few revisions, and hopefully I will stay out of the operating room for a very long time. Before my diagnosis I had lost my wonderful Mother to lung cancer and learned my Mother-in-Law had non-hodgkins lymphoma. Sadly my Mother-in-Law lost her battle in November 2007. During this time of my life I have lost my home, my husband and I lost our cars. My husband lost his job due to the fact I only had him to care for me and take care of our children. I've lost what it felt like to feel good anymore. After 12 surgeries, neuropathy and lymphadenitis in my left arm, I rarely have a good day physically.
I ask myself more times than you can imagine how do I keep going with all I've been through. My answer is my faith in God keeps me strong. My incredible husband and two children who put up with me no matter what. Although we may have lost alot of material items, we have each other. For God to allow me to wake up every morning to the two beautiful smiling faces that greet me, I feel like I have all the love in the world.
UPDATE TO CATHY'S STORY
My name is Cathy. I am 44 and a 2 year breast cancer survivor. My battle begin in June 2006 when I was diagnosed with breast cancer. I underwent bilateral mastectomies with immediate reconstruction. Unfortunately, I developed multiple post operative complications including an infection in my left breast following my chemotherapy treatments To date I have had 12 surgeries, with my most resent on March 25 of this year. I will go through one more in July and I pray this will be the last.
I've had a lot of struggles during this 20 month period. I currently suffer from peripheral neuropathy, a painful condition of my lower extremities, which is thought to be a result of chemotherapy. I also have upper extremity lymphedema which occured after my breast surgeries. I have been on an oral anit-estrogen agent since January 2007 I experience side effects from this medication which include bone pain, fatigue and an increased risk of osteoporosis.
Financially I've lost my home, our cars, and the ability I had before to obtain credit. We are currently in a rental home and drive cars that were given to us by friends. My goal from the minute I learned I had cancer was to survive. I have a husband who believes there's nothing I can't handle. Although, I sometimes have to disagree. I have two remarkable kids, a daughter (11) and a son (8) whose faith in me just takes my breath away. These two children have already been through so many emotions at such young ages. They lost both of their Grandmothers to cancer. My Mom in September of 05, and their Dad's Mom in November of 07.
If I've learned anything during this oh so difficult time I've been through, is to never give up on your faith or yourself. Believe in the power of prayer and the healing hands of God.
Crystal's Story
Have you ever thought you were “all that?” Untouchable? Invincible? On top of the world? That’s how I felt on my wedding day. I was a successful single mother and Houston entrepreneur with several major awards under my belt, a 2006 Ebony magazine top bachelorette and had reconnected with my college sweetheart after a sixteen year hiatus. Yes, I was finally getting married after a string of painful relationships at the age of 35 and ready to live happily ever after.
As I flip through my wedding album, all of the details are a blur. I don’t notice the flowers or the detailed cake. What I cherish is the genuine smile on my face which reflects the love in my heart for so many things- life, my husband, my daughter, my family and friends. Dazzling in my strapless wedding gown, little did I know I had breast cancer. Ironic isn’t it? I look so happy while cancer was dwelling inside me.
I never would have imagined that I would grow up to have breast cancer. When I first noticed the marble sized lump under my armpit area eight months prior to my wedding day (August 2006), I dismissed it as a swollen lymph gland as a result of a sinus infection. Life went on while the tumor grew. I found every excuse not to go to the doctor. My grandmother had breast cancer so I knew that there may be a slight likelihood that I would have it but I convinced myself that Superwoman doesn’t get cancer.
Shortly after my honeymoon, my husband urged me to go to the doctor to determine the cause of the lump which was beginning to get bigger. Within four days of seeing the doctor, I was diagnosed with Stage III A breast cancer on April 24th, 2007. I had a lumpectomy and axillary lymph node dissection with 16 positive lymph nodes. Due to the positive nodes, chemotherapy would be a treatment option. The thought of chemotherapy was terrifying to me. I had always had a headful of beautiful long hair which was highly prized in the Black community. I couldn’t imagine being bald and taking my new husband through the negative cosmetic changes.I’m going to get real shallow here. From the moment of my diagnosis, losing my hair was one of my greatest concerns.
After much research and consideration, I opted for 4 cycles of chemotherapy which consisted of taxotere, cytoxan and epirubicin. My hair began to fall out about twenty days after my first treatment. One day while driving, I got a wave of courage and drove to the nearest salon. I decided it was time to empower myself and just shave my head. It was falling out daily and was matted and dry. To my surprise, I didn’t shed one tear in the chair. The big picture was extending my life; hair couldn’t rob me of that.
Since the thought of losing my hair was so frightening to me in the early stage, I went on a Houston, Texas community affairs program completely bald to show viewers that being bald wasn’t so bad and what the result of chemotherapy looked like. I even shared home video of my hair falling out to help other women facing this medical challenge. For a former Texas beauty queen, this took a lot of courage.
As I celebrate my one year “cancerversary”, I realize that God was holding my hand the entire journey. He gave me strength and courage when I needed it and he broke me down so I could grow strong with Him again. I also realize the meaning of true beauty and it isn’t based on external features.
There are days that I get down about the loss of my long hair. I will see a shampoo commercial and wish for longer locks. I may flip through a fashion and beauty magazine and notice that most celebrities, even men, have long, flowing hair these days. But then, I think about why my hair is short and the feeling of sadness goes away. I’m still here! Nothing is better than that.
I never heard my 13 year old daughter say to me that she was proud of me, despite my numerous accomplishments, until I showed her my bald head. She gave me the biggest hug and I knew that it would be ok.
You never truly move on from cancer. The possibility of recurrence always lurks around the corner. Sadly, while writing this book, several people I know have been diagnosed with a recurring cancer. I wonder when and if my time will come. Until them, I will maximize each day and each experience.
My scars are a daily reminder of how far I have come. You can put it out of sight and mind for the moment but you never forget what you have been through and how hard you had to fight on the journey.
My outer perceived beauty was not who I really was. I had a genuine spirit just fighting to come out. In order for me to grow, I had to know true sacrifice. In order to truly know God’s power, I had to feel powerless.
As I look back over how quickly the last year has passed, I realize how much I have grown as a person. I also realized that not everyone in my circle has grown; and that circle is getting smaller. I appreciate life more, don’t take anything for granted, enjoy the simple things in life and I enjoy life to the fullest.I am forever humbled by this experience and hope to share my testimony with other young patients someday.
Cancer doesn’t care if you are all that and a bag of chips. Cancer doesn’t care at all.
My name is Crystal and I am a breast cancer survivor.
Puala's Story
2. LIFE SINCE BREAST CANCER...has been an absolute educational thrill ride! As a matter of fact, I (& my hubby) have rolled up our sleeves and presented our first Annual Breast Cancer Conference at the holiday Inn in Huntsville, AL - 40 attending - just 61 days after my surgery! Currently, were planning our 3rd Annual Breast Cancer Conference this October. In addition, I have presented a cooking class for the oncology nurses at CCI educating them on food preparation for those going through chemotherapy. Furthermore, I volunteer at the CCI, assisting and comforting those going through chemotherapy. Too, I'm a member of two cancer support groups. Yes, my life has truly been different by the many blessings I have received when I share my story, time and experience to others as a breast cancer "conquerer"!
3. SIGNIFICANT LESSON LEARNED... To trust God completely in every decision that needs to be made. If He [God] will bring you to it, He will take you through it!
4. AS A NATIONAL SPOKESPERSON ALREADY... educating breast cancer awareness and delivering my story currently in over 17 cities, my message is
a) HAVE BREAST EXAMS: particularly self exams. The majority of breast cancers are found by the person themselves! And, for younger (dense) breasts, I emphasize having "digital" mammograms if available. In addition, not to neglect "clinical" breast exams.
b) BE PROACTIVE: When diagnose, take someone with you to the surgeon/onc. appointments to take notes. Ask for all pathology reports and tests and, seek knowledge to be able to understand them. Jot down any questions before appt. Contact the American Cancer Society (ACS) to find any vibrant, active support groups in your area.
c) SPIRITUAL GUIDANCE: Seek divine wisdom for all decision making. A calm peace will simply embrace you. Immerse one self with uplifting music, positive people - and stand back and breathe! Breast cancer is not a death sentence!
Dianne's Story from CA
Where have all the millions gone?
Prior to becoming concerned about the financial aspect of Cancer, when I was diagnosed on March 8, 2008, I developed a “plan of battle,” to fight this enemy as though I were laying in for a military siege; Cancer is definitely an enemy within. Alexander the Great’s seven-month battle in Tyre became my model; it was his most difficult military feat and my battle looks as though it will take a similar amount of time. At age 23, Alexander readied for battle by erecting barriers, lay in stores, gathered his troops, negotiated for support from surrounding kings and won the battle.
I followed his lead . . . my “kings” being my family, friends, co-workers and all the fine people at Kaiser . . . this action helped me move forward calmly and strongly. However, within weeks, my co-pays exceeded $1400. My modest nest-egg went the way of those Chinese fossil eggs considered delicacies: it shriveled. When seeking minimal assistance, I am told that I “make too much money.”
During my tenure as Executive Director of a successful fundraiser staged by a San Francisco major media company, donations exceeded $25 million from inception in 1986 through my departure in 2002. The premise was that one-time critical needs grants were made to San Francisco Bay Area Families to help them through a rough spot. Unfortunately, too many grants were made to multi-generational welfare families already receiving services (ranging from $20,000 to an appalling $65,000+ per year in services for one non-working grandmother raising her two grandchildren. That family received Catholic-School tuition/uniforms, food stamps, housing, etc. She had a superb case worker.)
The decision as to who gets what from fundraisers disturbs me. That decision-making-reality has just hit home: I was diagnosed with Breast Cancer on March 8, 2008, had a lumpectomy on March 31, went back to work on Friday, April 4, back in for surgery on Wednesday April 9, stayed home Thursday and Friday, and went back to work on Monday, April 14.
Like many of the well-regarded organizations managing such funds, social service entities are stuck in their own dogma: they fund people they understand, which are often people who have been on various public programs for decades. They can make exceptions. But do they? This system confuses me.
My immigrant great-grandparents, grandparents and my parents always worked, sometimes holding down two jobs each to keep us fed, warm and safe in America – we are German Jew and Irish Catholic and came to these shores to save our lives. I have worked every single day of my life: part-time since age 9 and full time since age 15 (and often at two jobs to cover living expenses, particularly when raising my daughter on my own). I have never received welfare. I always go to work: One morning, after a night of being threatened at knife-point while standing naked, I arrived at work at 9 a.m . . . wearing sunglasses. My employers never did know what was up. They offered me a wonderful new job in a beautiful remote location.
-At 7:30 a.m., slipped on ice on my front stairs, cracked bones in my foot, took the bus to work, got there at 9 a.m. and took a cab to Kaiser at 5 p.m., Straggled in at 9:30 a.m. after a falling gas pump cracked my big toe and I had to visit Kaiser to get a brace.
-Worked full time through Tuberculosis (didn’t know I had it)Worked until my doctor told me to take maternity leave two-weeks prior to my daughter being born.
I also volunteer for animal rights organizations by building websites at no charge to help with their efforts: www.AmazonAnimalOrphanage.org, and I volunteered to build a site for a cancer survivor who started her own health spa in Rohnert Park, California: www.lepapillondayspa.com/
On May 22 I started chemotherapy; radiation treatment is down the road. Although I have been told that working throughout is impossible, I’ve learned that some women have done so, and I must to cover expenses. While I have excellent employers, it is one-person office and I neither have medical leave nor sufficient funds to cover expenses.
SSI won’t begin to cover the overhead of a person living in Marin County. And even though I’m considered near “poverty level” given Marin’s cost of living, and even though some of my funds go to help keep other family members safe and sound, there are no funds for anything other than a quite lovely wig (thank you American Cancer Society and private donors through Kaiser Foundation).
With interest, I view the Susan G. Komen Foundation: According to BusinessWeek.com, the Foundation raised more than $30 million in 2005 from the sales of pink products alone through cooperating corporations. I appreciate this creativity, but as one who has witnessed rules around those funds, I wonder about their use.
What is the math on that? Will any of the “pink product funds” be used to directly underwrite, say, a middle class/middle income person who has worked every day, supported their own family, raised children, and now could use $1,000-$2,000 a month for several months?
Monday, June 2, 2008
Kellie's May Update
So let’s start with the cancer part of my life. I was able to participate in The Race for a Cure this year. Wow! I was truly amazed at the amount of people that were there that day. I believe it was around 17,000, which really goes to show how far the ripples of this disease reach. I was in a group of about 14 and we were busy passing out fliers and bracelets for I Think Pink, all except Parker who slept through the 3 mile walk. I was exhausted afterwards, much more than I thought I would be. I really need to work on regaining my stamina, not that I had a lot pre-cancer. I also just had my 3rd, 3 month check up and everything looks fine. My hair is getting a little crazy. It’s growing and still thick and now wavy/curly and looks pretty large in the morning. I’m not going to do anything with it until the end of June, just let it go until then.
I’m looking forward to this summer, even though it will start with another surgery, my hysterectomy. At least I won’t be out of commission the whole summer like last year. I’ve already been able to do a lot of planting and yard work that I wasn’t able to do at all last Spring. Summers are my time to be a full time mom, which is one of the perks of my job. As far as that goes, I feel that I have the best of both worlds. And when people comment or complain about one role (working mom) or the other (stay at home mom) I’m able to respond to both since I do both, though I believe all moms are working moms, 24/7.
I never intended to be a stay at home mom, knowing that my profession would allow me to experience both roles, which it has done. Had I known that I was going to have the boys that I have, I probably would have planned to stay home, but how would I have ever known that? Financially, staying home is just not an option, and right now I am so grateful to be employed in a secure job that I love doing during these unsettling economic times. That’s why I am also so grateful to the “village” that helps me with my kids. I really could not do it without them. All the family, friends, neighbors, school personnel, therapists, doctors, nurses, and co-workers that assist and love our boys give our family so much support and strength. I hope that all of you have or will experience that type of encouragement either by giving or receiving it, many times over throughout your life. It’s a beautiful thing!
Don’t forget to do your self-exam or to schedule your mammogram. And please, submit a story. We can all learn from each one of them.