Sharing Hope Ask Grace and Friends

Grace: I felt mine in the shower. It was on my left breast nearest my armpit.

Faith: My doctor found mine during my annual ob-gyn appointment.

Hope: I didn’t have a lump. The first cancer was found during my annual mammogram. The second cancer was found a year after the initial diagnosis with the MRI. The mammogram was normal, but the MRI showed changes from the year before.

Grace: Like a little hard bb. It was as small as a pea. I actually could move it all around and could not stop touching it and trying to figure out what it was. Everyone told me because it moved around like it did, it most probably was not cancer.

Faith: The mass alternated between being rock hard in the middle and squishy all around the sides and was the size of a walnut. The hard part of the lump hurt when felt and the squishy areas ached. The skin even hurt after too much palpitation. I even had a friend who was in the medical field tell me it couldn’t be cancer because cancer didn’t hurt to touch it.

Hope: N/A

Grace: Since I received the diagnosis call at work, my co-worker friends knew what was going on and called my husband while I was on the phone receiving the news. I could not pull myself together; I was crying uncontrollably. After he and I drove home and grieved and did some Internet research (which I found overwhelming and would not do that again until after I received my pathology report and opinion for treatment). My husband made the phone calls to explain what we knew so far to my mother-in-law and father and then I would get on the phone to talk with them. I called my brother myself.

When you ask, how you told your family, I have to say it was not easy, there is not a script that will help one deliver that type of news. It was a difficult conversation. My husband and I had to be strong for them and that was hard. They asked lots of questions that we still did not know ourselves so that was extremely hard also. The phone then subsequently rang off the hook for the next week. Each time I had to tell the story again I seemed to lose the fear of it. Although I did not like telling it over and over it actually helped me come to terms with it while explaining and comforting others about it. That is why Lump to Laughter seemed so important to me, I have always had a drive to inform and help others and my life’s purpose was being born through breast cancer.

Faith: My daughter actually went with me to get the results and that support was priceless. I can never thank her enough for all she did for me during that extremely difficult part of our lives, (Looking back, neither one of us thought it was cancer.)

My daughter and I gathered the plan to tell others outside the doctor’s office in the parking lot in the car. We started planning out phone “trees” (one call to someone who would call several others). She let me decide the plan. There were no tears at this point, only a plan to get the word out so people would start praying. I’m not sure how I arrived at who would call whom, but it seemed it depended on who could head up a phone “tree” so that with a few phone calls many people could be reached. I called my mom and dad and my brother myself. I only had energy for about 3 of my numerous close friends and my friends did the rest. That night within one hour after calls had been made 15 people showed up at my house for support. Grace was probably the first person to show up that I hadn’t called yet; I’m still not sure how she found out. She just came to my house. The phone probably didn’t stop ringing for a month. I wasn’t able to get my surgery scheduled until a month later because there were so many breast cancer surgeries. I realized after all the support, love and help I had it was because one of the gifts I have is to network. That’s what I want for Lump to Laughter to become the network connection of grace, faith and hope for the world.

Hope: When I was asked to come back for more views of my annual mammogram, and then a biopsy, I called my sisters, my dad, and my mother-in-law to ask them to pray for my guidance and strength. I sent an email to friends and family asking for the same thing. I was pretty open about it, even putting myself on our church’s prayer chain. Because I lost my mom to breast cancer my anxiety was pretty high when I got that postcard-after ten years of normal mammograms! I figured there was strength in numbers and I needed to be surrounded by prayers, even if it was nothing!

Two weeks of waiting between the post card and the diagnosis was difficult, but I think it would have been worse if I had kept it to myself and tried to pretend nothing was wrong.

When I was diagnosed I just emailed everyone to thank them for their prayers and tell them the outcome. I didn’t want to talk to anyone right away except for my husband and sisters. I think that night we (Gray, my husband) and I told our 3 sons during our family prayer time before bed. They were 16, 14, and 11 at the time.

The next year when the cancer recurred I waited until it was confirmed to tell everyone (except my sisters, my in-laws, my dad and my best friend). My husband was sailing for the week on a delayed trip and I didn’t want to tell him, but he kept calling and asking me how the MRI went, I finally told him over the phone (and ruined his trip). That night, I sat down with our sons and told them about the MRI, the doctors thought the cancer was back. I wasn’t as strong this time-I cried and they hugged me and told me “you beat it once, you can beat it again mom!”

Grace: I had three opinions and did lots of research and I prayed. I had two young babies to think of so I wanted to do everything possible to keep the cancer from returning. I know there are no guarantees but at least I knew I had done everything possible and would have no regrets. I read a lot about recurrences and how common they were and I did not want to go through this a second time. The physician at Duke told me that the beginning is the only time you can be curative and that is what I wanted. Because my MRI indicated there were several suspicious spots in both breasts I ultimately chose a bilateral mastectomy and immediate reconstruction with saline implants. (After the surgery these spots were determined not to be cancer). After about two years I adopted these new breasts as my own and they became apart of me. I barely notice they are any different than before except bigger.

Faith: I came to the conclusion the best surgery approach for me would be a tram flap and unilateral mastectomy on my left breast and reduction of my right breast to match. I wanted both my breasts to match as much as humanly possible and I truly didn’t want to worry about anything malfunctioning with the one implant. I was only planning on doing this one time and didn’t want to have to do anything over. This came after prayer and an appointment with my general surgeon, as well as my plastic surgeon. My general surgeon informed me that only one breast would be removed, due to a lack of breast cancer in my family. My plastic surgeon educated me on the tram flap versus an implant. Ultimately I chose the tram flap because my breast would be made up of my own tissue, fat and muscle from my stomach. Essentially, I received a boob job and a tummy tuck. I now know how it feels to have an extreme makeover.

Hope: After getting 3 opinions, telling me the same thing I was comfortable with the advice to have a lumpectomy and radiation. The area of malignancy was so small that it made sense to take the least invasive route.

When my cancer reoccurred a year later in the lumpectomy bed there was no question about doing a mastectomy. I was advised that at some point the cancer might recur again in the other breast and I should consider a double mastectomy, but it was up to me. I chose to have a single and keep my other breast…for now. Because of the time of year (early December) it was difficult to co-ordinate with a plastic surgeon and I didn’t want to rush into reconstruction with a surgeon I wasn’t comfortable with. I also didn’t wan to wait to have the mastectomy, know the cancer was aggressive. So I chose to wait on the reconstruction until later.

I had my mastectomy on December 3, 2007 and found a wonderful plastic surgeon that did a tram-flap reconstruction in September, 2008. I decided on the tram-flap because I had a lot of stretch marks and saggy skin from my 3 pregnancies. Despite the long recovery, it was worth it! I’m very happy with it!

Grace: My initial general surgeon who performed the biopsy did not make me feel comfortable. When she delivered the diagnosis and offered her opinion on treatment she also referred me for a second opinion. I realized the second surgeon was the best at what he did in the area and the best at sentinel node biopsy (yes this is an exact science). After praying for God’s guidance I felt we chose this surgeon together. I did not have peace with any other surgeon. I ultimately chose him instead of my third opinion at a large cancer institute for his ability and his focus not only on getting the cancer out, but maintaining my beauty in the process. The added bonus was he was a strong Christian and that he was local and I would not have to travel for treatment or surgery. For me peace was also in being close to my family and knowing their lives would be as normal as possible since mine was not going to be for awhile.

The plastic surgeon was an easy choice. I loved him and his staff from the start and he is now a corporate sponsor for our organization. He made me feel at ease and he answered my questions. I knew he would make me beautiful again and he did.

The oncologist decision was the hardest choice. The first oncologist was too technical and I had no rapport with her at all. The second one was a second opinion at a large hospital too far away. I ultimately chose my oncologist by personal referrals. I liked him immediately. He was real. He was laid back. I felt comfortable with him from the beginning. He spoke to me in terms I understood and didn’t talk to me like a physician, but as if he were a friend. You need your physician to be your friend during chemotherapy for sure.

Later I was surprised to know that Faith would also chose two of the same doctors and the third was in the same physicians office. I truly believe God placed us together to turn this horrible event into good for others.

Faith: I had received the general surgeon’s name from my OB-GYN physician several months prior , so needless to say I had lost it. Delight filled my heart when I remembered him from my Chaplaincy residency program as a surgeon “on-call” at night. After discovering his name and making an appointment, Grace and I were surprised to find each other at the same office. I don’t believe in happenstance, I believe in divine appointments.

My plastic surgeon was a referral by my general surgeon, which again turned out to be the same plastic surgeon Grace had. We both fell in love with him. He is a corporate sponsor for Lump to Laughter, so we are all still connected.

I was very disappointed with the bedside manner and care of the first oncologist I visited. It was very eye opening as well when I wasn’t allowed to even schedule my own appointment with another oncologist in the same office. I actually had to call back to my general surgeon and tell them who I wanted to see, again, (Grace’s doctor) and they had to refer me so I could get an appointment. The office wouldn’t see me otherwise. I was very upset over that policy. I already felt like oodles of control had been taken away from me and now I can’t even select my own oncologist, but I now understand it’s for my protection and the oncologists. This is such an intensely emotional time so make sure you have peace with all of your doctors. If you don’t get your questions answered or feel any pressure to do something you don’t have the peace to do, get another opinion and another. This is about you and your journey, not the doctors or the disease. You have options and don’t forget that.

Hope: The first time I got recommendations from my gynecologist, other breast cancer survivors, and friends that were pharmaceutical reps and knew the doctors in the area.

Yes, I actually got 3 opinions from surgeons. I interviewed the oncologist I have now, I liked him right away, so I cancelled the other 2 oncologists I had scheduled to interview. My radiation oncologist was recommended by my surgeon and oncologist and my friends, so I didn’t interview anyone else.

The second time, despite the recurrence I was happy with “my team” so I stayed with my surgeon and oncologist.

My plastic surgeon I found after interviews with several in the area. I wanted someone who could do the ‘tram-flap’ and who cared about they way it looked. I knew right away when I had found ‘the right’ surgeon for me-he had a good bedside manner, he had done several of these, he was very current in the field and involved in breast cancer organizations. He also had a similar personality to me…a bit of a perfectionist, so I knew he would make my breast look good!

Grace: Since I was having a bilateral mastectomy with implants my pre-op was pretty cut and dry. We are taking those off and inserting these! There was the typical blood work. When I went in to have my nipples made the doctor had to mark me for evenness, but all the other pre-op’s for me were just talking about what was going to happen, signing a living will, which was intense, and making sure everyone had the insurance information so they could all get paid.

Faith: Pre-op for me was very intense. For a tram I had to get pictures taken of my breasts and stomach, front and side. I also had to be marked up by the plastic surgeon to show the general surgeon exactly what he wanted to do. The rest was typical, chest x-ray and blood work, urine, etc. The advance directive, living will were something I had to talk over with my adult children and that was intense. No one really wanted to search through any of the “what if’s” but they had to be discussed.

Hope: The lumpectomy pre-op was much more involved than the mastectomy pre-op. They had to mark the area of the surgery and put guide wires in that area of my breast. This had to be done without anesthesia and was so painful that I fainted. The nurse was wonderful and when they had the first one in, I was allowed to lie down for the others. This helped some, I held onto the nurse’s hand and had a stress ball the other, when the doctor would insert a wire I would squeeze the nurse’s hand and the ball-this helped. The blood work and paper work were just like any that you would do before any surgery.

The mastectomy pre-op was simple-making sure they knew which breast.

The tram-flap pre-op was exciting, as I had been living with a bony chest wall for almost a year, along with a saggy, stretchy stomach. The plastic surgeon came in after all of the blood work and paperwork were done. He marked my stomach and left side of my chest, explaining again how all of this (my stomach) was moving up to here (my chest wall)!

~ Photos of actual breast reconstruction

Grace: The surgeon made an incision across each breast, peeled back the skin and removed all the breast tissue. Instead of loosing that “pocket”, the plastic surgeon participated in the operation and inserted an expander into this “pocket” filled with just enough fluid so the “pocket” would be made into a small breast which is then expander over the next several months and becomes a larger breast. I left the hospital the same day with two drains attached to tubes that were surgically implanted under the skin for draining fluid and blood from the surgery sight. I also had to wear a tight fitting support bra, which holds everything in place. So when I finally mustered the courage to look, I was really shocked that my “breasts” were there only a little different shape and they had two scars across them that have since healed and are barely visible. The drains were overwhelming at first, but they are necessary so that fluid will not build up and cause an infection to occur. With the help of my husband we managed emptying the drain bulbs twice daily and I was sure glad when they were gone. You cannot get them wet or take off the fitted support “bra” so you can imagine how I smelled after a few days. Birdbaths just simply do not do the trick.

Faith: The general surgeon made an incision vertically from underneath my left breast to the areole; then cut a circle completely around my areole to keep that skin for the plastic surgeon as well as horizontally beneath the whole breast. After removing the breast tissue he also removed one lymph node under my left arm as well. The plastic surgeon then cut a line from hipbone to hipbone and removed all the fat, tissue and part of a muscle that moves horizontally across my stomach and rerouted it vertically up the center of my stomach and across the left breast where he connected the muscle for blood flow. I came home with 3 drains for draining fluid and blood from the surgery sight. Two were sewn into the incision across my stomach at both sides of my hips and one sewn into the incision located near the underside of my left arm. The right breast was then reduced for evenness and the incision was made vertically underneath my breast and horizontally up the middle to the areole. The new areole was smaller and they used my original nipple. By far the toughest part of this surgery was the incision that made from hipbone to hipbone. This incision caused me the most pain and took the longest to recuperate from. With all this said, you can imagine what my chest and stomach “looked” like after the surgery. This surgery is so extensive and does leave scars, but they are fading. With all that said, I am very please with the procedure I chose and if I had to do it all over again I would do it the same way.

Hope: After the lumpectomy, my breast had a little dimple or concave area between my nipple and my arm pit. I also had a diagonal scar under my armpit from the sentinel node biopsy.

After the mastectomy I had a diagonal scar that cut across the left side of my chest from my arm pit to the center of my body-lower cleavage (or what would have been, had I two breasts). It was actually very neat and tidy, but flat and bony-you could see all of my ribs and chest wall.

~ See photos of actual breast reconstruction

Grace: To understand this you must visualize a map. Your lymph nodes are like a road map and the beginning of a fork in the road is called a sentinel node. This sentinel node links with many lymph nodes like a fork will link to many roads on a map. The physician’s goal is to find the route your cancer would have taken if it would have spread to your lymph nodes and then he will remove only those lymph nodes to biopsy for cancer spread. To determine this, the physician has to perform a dye flow test. To perform a sentinel node biopsy the physician will first insert a dye into the site of where the breast cancer is and while you are lying under a machine that is similar to an x-ray machine the dye will flow is being watched and recorded by the machine. Where it goes determines to them the “road” or sentinel node your cancer would have drained into IF it had. Once they determine the path your cancer would have spread, the physician can then remove the sentinel node during the biopsy and several lymph nodes attached to it and they dissect and test these for cancer cells to determine if your cancer has spread into your lymph nodes. It is very accurate and saves you from having ALL of your lymph nodes removed to test for the spread of cancer. Other than the initial prick it did not hurt. The worst part was the need to stay in one awkward position while the dye flowed and for the machine to record and observe the dye flow, just uncomfortable.

Faith: On the day of surgery this is the first test you have after admission. They have you come around 4 hours earlier than your surgery. This procedure is done in the X-Ray Department of the hospital. The surgeon injects a dye into the base of the nipple and that’s where the dye is inserted. It was uncomfortable to me because of the reason I was there and having to lay unclothed on metal and it’s extremely cold in the rooms, however, the technicians and the doctor were wonderful, always making sure I was okay. The actual test takes about two hours to make sure they have gotten the results they want and to wait for the dye to flow. Other than that I won’t elaborate on anything else because Grace has done a wonderful job.

Hope: I agree with Faith, Grace did a good job explaining it, and my experience was similar to both Grace and Faith’s experience. I’m just thankful they can do this now, as women used to have all of their lymph nodes removed, then had to deal with lymphodema-arm swelling!

Grace: They were like soft plastic bulbs attached to tubes that were inserted under the skin. The blood drains from the surgery site into them and then you empty the bulbs twice a day. They were alarming at first but then part of the “drill” of recovery. It was hard to get dressed and I mainly had to wear a robe all the time unless I ventured out to the doctors office. I had to have oversized tops and big jackets for those trips. And they had to zip up the front. Nothing goes over your head during the recovery days.

Faith: A tram is more extensive than a mastectomy. I only left the house for my plastic surgeons’ appointments which were once a week for one month. I lived in my pj’s and didn’t even get to take a real shower for 14 days. I really didn’t even go out of the house for any thing other than a doctor’s appointment for 3 weeks. However, it was I believe the 2nd follow up appointment (2 weeks) that the plastic surgeon took the drains out. The area surrounding the tubes was still numb so for me it was a quick and painless procedure. I was shocked at how long the tubes inside of me were. I was very fortunate and didn’t have any bruising what so ever. People had actually prayed specifically that I wouldn’t bruise and the pain and recovery process would be quick.

Hope: Again, my experience was similar to both Faith and Grace. I was amazed at how tiny the plastic tubing was and how much of it was in my body when they removed it. After the mastectomy I did have some fluid build up under my arm pit, which was very painful because we removed one of the tubes too early, but this was relieved by my surgeon when I went in for a check-up. He basically inserted a needle and removed the fluid. This wasn’t painful because the area was numb under my arm.

Grace: Yes, I chose chemotherapy.

Faith: I decided to investigate all the information associated with every method of treatment available today. I am wired with a barometer ruled by peace, if no peace, I don’t do it. The only pathway of treatment that provided me peace was nutrition. I found my answers through Dr. Lorraine Day and with the Hallelujah Diet by George Malkmus. After going through this experience, I now believe you really are what you eat. The doctors are there to help you, but ultimately you have to decide what you can live with or without. I didn’t like the down side of chemotherapy. My dad is a farmer. Never did I ever see him put a “weed killer” on a crop that killed only the weeds. With that revelation, I knew that I needed more of a “win-win” scenario and chemotherapy and radiation just didn’t offer that for me.

Lorraine day is a doctor who had a “grapefruit size lump in her breast with cancer spread to the lymph nodes in her neck and down the lymph nodes in her arm. After her name was mentioned to me about three times I decided I needed to investigate. I ended up doing the treatment steps she used with a mixture of the Hallelujah diet by George Malkmus.

I have made this new diet my lifestyle. My oncologist was shocked at how well I looked and asked me what I was doing to be in the “peak of health.” I was shocked myself at how well I felt, I lost about 25 pounds and my skin was radiant. Even my friends and family have tried various parts of this diet and have are watching what they eat and reading the labels. I believe the “Maker’s Diet” by Jordan Rubin is another healthy way of eating.

I found that another common problem associated with cancer is the crashing of the adrenal system. Adrenal fatigue and stress are part of the arena of cancer. Practically every person on this journey will deal with this area even after they are done with their treatments. The adrenal system can be rebuilt. My friends in the medical field help lead me to a dietary supplement program for Adrenal Fatigue and Stress called Future Formulations, by Dr. James L. Wilson.

The other ingredients I have added to my daily supplements are vegan type vitamins, “whey” protein supplement daily, mangosteen (the queen of the fruits) and essiac. Essiac was discovered among the Ojibway Indians in 1922, Essiac tea is made with herbs. The primary herbs in the Essiac formula are Sheep Sorrel, Burdock Root, Slippery Elm Bark and Rhubarb Root. Four other herbs, kelp, red clover, blessed thistle and watercress, are added in small amounts.

Another interesting thing is Mangosteen. It is a fruit now prescribed by James E. Graham, JR. M.D. , an oncologist at Genesys Hurley Cancer Institute. He has been giving his patients this fruit as part of their health and wellness program.

Last but not least, I also saw a pharmacist /herbalist to help assist me in my complete recovery. Again, this is not medical advice just the pathway I discovered for myself from lots of research. Any decision you make should be discussed with your attending physician.

Hope: The second diagnosis, yes. I had 6 rounds of 2 drugs given every 3 weeks, along with Hercepton infusions (which is a targeted drug therapy) given weekly for the first 4 months while going though chemotherapy, then only every 3 weeks after that for the next 8 months. I eventually had to get a port-a-cath installed near my collar bone to receive the infusions, as my veins in my arm were breaking down.

Grace: I slept after the treatments on treatment day, the next two days I would feel fine, by the third day my skin would turn red and my mouth would feel slimy. I had to drink LOTS of water which helped flush out the chemicals. My taste buds were completely different, too. After the third day, I would become very sluggish like I was coming down with the flu. By the fifth day I would start feeling better and each day got better until the next treatment. I would tire easier than I normally did, so naps were a must when I could take them. I used this time to get closer to God. I prayed if I had no energy to read. I watched inspirational Christian programs that would uplift me. I read books about Christian peace. I wrote my thoughts out. Mostly I had an ongoing conversation with God. I gained enjoyment from Him and from time with my family and realized there are many people who have neither. That is why Lump to Laughter is so important. It is bringing a family of God to those who suffer from this disease. Without both of them, cancer would have stolen me away and I know I would have died.

Faith: No chemotherapy or radiation.

Hope: Chemo was a rollercoaster. After the first round I got used to the rhythm and tried to just ‘go with it’. The first round didn’t hit me until day 3. When I woke up, I had to lie back down. The anti-nausea drugs made me pretty tired, but kept me from throwing up. I was told I would only be on the couch for 2-3 days, so by the 4th day when I wasn’t feeling any better and completely incapacitated I was freaked out and depressed. It was my mother-in-law who helped me realize that each of us is unique and would handle the treatment differently. She also made me laugh when she told me the nurse who told me I would only be feeling badly for a few days had never been through chemo!

After that I knew a little better what to expect and I allowed myself my ‘lazy’ week after the infusion before I bounced back and was able to do a little more the following two weeks before the next chemo. I looked at it as a ‘mini-vacation’ allowing myself to lie on the couch, sleep and watch television. I did make sure NOT to stay in bed during the day, and would sleep on the couch! I also allowed myself to eat whatever appealed to me, therefore I didn’t eat very healthy and I gained a lot of wait, despite walking each day for the two weeks in between the infusions when I felt better.