I called Bay Health and spoke to the women who referred me to the plastic surgeon I have now. I told her the new surgeons office was charging me co pays and that I didn’t think I should have to pay because its post op. She said, “You are seeing a new surgeon but let me call the office and see what I can do.” She would see if they would waive the fee for me.  I said, “Thank you that would be great.” She told me if I didn’t hear from her in a couple of days I should give her a call back. The last thing I needed was more bills so I was hopeful that she could take care of this for me. Even though I was insured through my husband’s company, I still had hospital bills after the insurance paid a percentage. I had been out of work because of the cancer and with the relapse I would not be able to return to work. I had applied for disability when I was diagnosed in December of two thousand and thirteen. I was denied twice and I had to obtain a lawyer to help me get a court date so a judge could hear my case and make a decision. With the recurrence of cancer I did not think I had to wait months for a hearing.  I had contacted my lawyer and made her aware of my recurrence. When there was nothing she could do I took matters into my own hands. I emailed a letter about my situation to our senator for our county. I received a response and he had someone contact me who sent me out a form so that I could get my hearing moved up. All I had to do was fill out the form and get a letter from my doctor stating that my cancer had spread and I would be getting more treatment. I did this right away and faxed it off to the number that was on the form. It was about a month later when I heard that based on the relapse my disability was approved. My lawyer had called to tell me the news and then I received a letter in the mail. I had asked my lawyer when I would start getting my payment. She told me she did not know how long it would take social security to process it. He guess was 3 months. I was so happy. I did not understand why I did not get it with my first cancer diagnosis but I would be getting now. Having this money would allow me to pay bills. I would no longer have to worry about not working for income.

plastic surgeon discussion

I went home that afternoon to discuss the new surgeon’s practices and procedures with my husband. I told him the surgeon and staff was nice and caring but, I had felt uneasy about the way he filled my implant. I also told my husband the surgeon said no more fills where necessary.  I love my husband and I value his opinion.  I asked him what he thought because people just have a way of looking at things from a different perspective. He didn’t think I should worry and that the other surgeon was just overly cautious. He said, “Didn’t other women get their reconstruction from him and were happy.” I said, “Yes he came highly recommended.” My husband said, “This is your first appointment give him a chance.” He said, “Maybe next time it will be better.” I said, “It better be.”  My husband then said, “You should be happy about not getting any more fills, don’t they hurt anyway?” I said, “Yes but I just don’t understand why the other surgeon wanted to over expand to 640 and this one said he doesn’t need to.”  My husband said, “We are just lucky that you could get another surgeon to take over for the other one and finish what he had started.” I said, “This is true.” I went on to tell him I was going to have to give Bay Health a call about the copay I was charged. I told him with the other surgeon I had no copay because it was post operation.  Even though I have a new plastic surgeon, it should still be the same. He agreed with me. 

New Plastic Surgeon appointment

Today I will be meeting with my new plastic surgeon. His office is about the same distance away but in a different direction of my previous plastic surgeon. I walked in the office and signed my name in. The nurse gave me a bunch of forms to fill out. There office had received all my records from the other plastic surgeon. They did charge me my co pay which I later dispute with Bay Health. The nurse who called me back was very nice. She had a pleasant personality. She went over with me where I am with my reconstruction. She told me the doctor will be right in. I was greeted by a tall athletic looking man with sandy blonde hair. I would say he is about ten years older than me. He was quite attractive. I think I remember hearing about his reputation from other women as being very handsome. I see know what they meant. He told me he had looked at all of my records.” I will be taking over for your other plastic surgeon and finish your reconstruction”, he said.  He asked me to take of my shirt so that he could take a look at my implant and tissue ex-pander. He said that my tissue ex pander looked good but he would fill it just a little more. I told him the other surgeon was going to fill it to 640 which is the same size the other one was over expanded to. This surgeon than said, “I don’t need to over fill it by that much.” He then told me to lie back and he would go ahead and fill it now. The nurse then took a swab and cleaned my skin where my right breast used to be.  She then took out a magnet and lined it up with the metal that is under my skin. She then marks the spot where the needle will go in. The surgeon then injected some saline in to expand my skin. Right away I said, “You do this different than the other surgeon did.” The nurse asked how. I said, “The nurse would line up the magnet with the metal and mark the spot with a magic marker. “The nurse would then lay the chair back flat and I would wait for the surgeon to come in.”  “She then would put a bib on my tissue ex-pander with a hole in it to the ex-pander could be accessed.” I then said the surgeon would clean the area with iodine real well as the nurse filled a syringe with the saline. I told them the syringe he used at a tube connected to the end of it.  My new surgeon then said, “He must have used a butterfly needle.” The nurse just gave me this puzzled look. My new surgeon said, “This is how we fill your ex-pander here. He told me to come back in about a week so he could check the ex-pander. He also said that he was aware that I had a biopsy done and we would not be able to replace the ex-pander with an implant if I have to get more treatment. 

swelling from lymphadema

I am three months into my second chemo treatment and aside from the fatigue; I am not feeling too bad. I have been getting pain in my arm that has the lymphedema in it.  I have been wearing my compression sleeve and using my compression machine for the swelling I have. I have difficulty with using this arm and hand for tasks. I sometimes cannot wear my wedding ring on my left hand ring finger because of the swelling.  One day I had my wedding ring on and could not get it off. I had to wait for the swelling to go down. I wear my ring around my neck now to avoid this. I also take a medication that causes swelling in both my hands and feet. I use this medication to treat my syncope. I was diagnosed with syncope back in two thousand and eight. This was the same time I was diagnosed with the gastro paresis.  Syncope is when your blood pressure drops and you pass out. I discussed how I was diagnosed with syncope in an earlier post. Since my double mastectomy and the lymphedema, I have had to buy bigger shirts. I used to be in a small now I wear medium and even large depending on the cut. When I had my left arm in the mummy bandage I had to cut holes in two of my shirt sleeves in order for them to fit.  My implant and tissue expander are positioned differently as well which makes me need bigger size shirts. I have been wearing a large size in sports bras.  I guess once I get my other implant I can go bra shopping. I will have to get resized to find out what size cup I will need. I have not decided on whether or not I will be getting nipples tattooed onto my implants. Some women choose not to and some do. The nipple tattooing is something that my plastic surgeon does not do. I am not at this point yet so I have a lot of time to decide what I will do.

diet

Since it has been hot this summer, I have been eating watermelon as well as eating the popsicles. They both really cool me off. I have been trying to eat better since my diagnosis. My husband and I grow a garden every summer. We have grown fresh peppers hot and sweet. We have also grown cucumbers, eggplant, zucchini, squash, tomatoes and herbs. If a recipe calls for basil or rosemary I just go out to my garden and pick what I need. We have not grown any fruit so I just go to the local farmers market and get berries and bananas.  I make smoothies with the fruit and veggies often. I have bought Kale at the market which I add to my smoothies. My husband and I like caesar salads we eat them with our dinner often. We did not grow green beans or carrots so I get them from the grocery store. I use garlic in most of my cooking. People who eat about a clove of garlic a day are less likely to develop various kinds of cancer. According to Everyday Health these cancers include the digestive organs like esophagus, stomach, and colon. Berries are another cancer fighting fruit that contain powerful antioxidants. The compounds in these berries can help keep cancer cells from growing or spreading. According to Every Day Health tomatoes may help protect men from prostate cancer.Tomatoes contain an effective antioxidant called lycopene. Your body absorbs lycopene better when it is in the form of sauce. Further reading of Everyday Health goes on to talk about the benefits from the antioxidants from green tea. The antioxidants in green or black tea are called catechins.  The catechins keep free radicals from damaging cells.  The article goes on to say that the catechins can shrink tumors and reduce tumor cell growth. Some studies have linked drinking tea to a lower risk of cancer.  I have been drinking green tea with honey and lemon for years in the mornings with my breakfast. According to the American Institute for Cancer Research, eating whole grains can lower your risk of cancer.  A large study proved that people who ate more whole grains might be at a lower risk for getting colorectal cancer. These whole grains would include oatmeal, barely, brown rice, and whole wheat bread and pasta.  Another cancer fighting agent I started using in my food is called Turmeric. Turmeric a spice known in India can be used to flavor foods. This orange colored spice contains curcumin. The American Cancer Society states that the ingredient has been known to slow the spread of cancer and shrink tumors in some animals. I like the taste of turmeric and I use it as a spice for meats. Another good source of antioxidants is beta-carotene and lutein. You can find these in vegetables like spinach and lettuce. They can also be found in vegetables that you cook like collard greens, mustard greens, and kale.  This next fruit I eat on occasion but I actually drink the liquid form more often. Wine which is good for your heart comes from grapes and both contain an antioxidant called resveratrol. The skin of the grapes is rich in 

resveratrol. The National Cancer Institute reports that resveratrol is useful in keeping cancer from beginning or spreading. Studies have shown that it limits the growth of many kinds of cancer cells.  Moderate amount of red wine have been linked to a lower risk of prostate cancer for men. Eating a diet rich in these foods is good for your overall health but has shown to be useful in the prevention and spreading of cancer.

chemo and menopause

I have been feeling very tired from the chemo. I have been getting hot flashes throughout the day and I have been moody at times. If I could only take those hormones to help with my menopause symptoms, I could get some relief. My doctor said, “I could not take them.” I did some research online and found out that hormone therapy can be linked to an increase in breast cancer in women. I did not know this. According to the Breast Cancer Organization there are two main types of hormone replacement therapy. One contains the hormones estrogen and progesterone. The other hormone replacement therapy contains estrogen only.  The Breast Cancer Organization states that a combination of the hormonal replacement therapy increases breast cancer by about seventy five percent. This is when it is only used for a short period of time. The estrogen only therapy causes breast cancer but only when used for more than ten years.  They go on to say that if you have already been diagnosed with breast cancer or have tested positive for BRCA1 or BRCA2 you should not use this therapy. The Breast Cancer Organization goes on to say that HRT can cause hormone-receptor positive cancers to develop and grow.  If you have menopausal side effects and had a personal history of breast cancer, talk to your doctor about other non-hormonal options. Menopausal symptoms can be relieved with dietary changes, exercise, acupuncture or meditation.  I keep a portable fan handy for my hot flashes. I also wear light clothing. I do eat Popsicles to help cool my body temperature. 

February oncology visit post surgery

It has been two weeks since the surgery. I had some follow up appointments with other doctors about my health. My appointment with the oncologist is going to be in a few days. Until then I get a break to rest and catch up on things around the house before starting another treatment.  At my visit my oncologist told me I would be getting two more chemo therapy medications. He wanted me to be put on the schedule for next week to start chemo therapy for 6 treatments.  So, here I go once again with chemo.  With this round of chemo, this will make my tenth different kind of chemo I have been on in my lifetime. I have not been healthy ever since I had my first chemo back in nineteen ninety four. My doctor also wants me to go back to speak to the radiation doctor. He wants me to get radiation as part of this cancer treatment. The only problem with this is, I had radiation in the past and a person can only get so much radiation without risk of complications. I had to miss my support group meeting the week I was getting chemo. The chemo was given to me the same way it was the first time I had it. The only difference with this round was I did not have to take the steroids beforehand. I would also be getting the Nuelasta shot twenty four hours after as well.  The first chemo treatment is usually the longest. If the room is full with lots of other people getting treated it can slow thing up as well.  I was hoping that when next week came around I would feel well enough to go to my support group to give them an update about my surgery and treatment.

post operation

I was still kind of groggy from the anesthesia and I just felt like going back into my slumber. My husband said, “The surgeon said everything went well with the surgery.” The nurse came in to see if I wanted anything to drink. I was very thirsty and asked her for some water. My mother and step dad told me they were going to leave so that I could rest. They gave me hugs and kisses and we said our goodbyes. My mom told me she would call me later at home to see how I was doing. I was in recovery for about an hour and I was told by the nurse I could go home. She told me a follow up appointment had been made with the surgeon. The nurse said, “The results will be sent to your oncologist.” I told her I had a follow up appointment with him.  I was given discharge papers and instructions from the nurse. She then wheeled me out of the hospital in a wheel chair.  On the way home we picked up food to take home. I was feeling soar so after I ate I rested on the couch watching television.  I had a very uncomfortable night sleeping with the pain in my chest from surgery.  I rested the next day as well.

thoracic surgery continued

A nurse called my name and we followed her back to the pre operation department. She led me to a numbered space with a bed and a curtain. The department was pretty full that morning with other patients going in for surgery.  My family waited outside of the curtain while I changed into the gown. When I finished they sat beside me as a nurse came in to ask me questions about my medications and the last time I had anything to eat or drink. A nurse came in to stick me with a needle for an IV. She found a good vein but then it disappeared or blew because she had to stick me again. I think it went into hiding just like I wish I could do right now. This always seems to happen to me in the hospital when they are putting in an IV.  When I get blood work done this never happens. Luckily the second time was a charm. The IV was following and I sat there talking to my family waiting for the anesthesiologist to come in and talk to me.  After the drug doctor introduced himself he asked me some questions.  He said, “If I ask you to lift your arms would you be able too. I said, “Would this be before or after you drug me.”  I thought that was funny but he didn’t laugh. I raised my arms and he just went on with a serious disposition and asked more questions. He explained what knock out drug I would be getting the surgeon appeared. He marked the spot to be operated on with a marker. The nurses who would be in the operating room with me would be there. The one nurse told me not to worry because they had slept at a holiday in the night before. I had said, “Finally someone with a sense of humor.” I told her what I had said to the drug doctor and she laughed. I had a cap that was given to me that I had to put on my head prior to surgery. My husband had to get a picture of me in it even though I refused.  The nurse told my family they could go back to the room we were waiting in that morning. She told them the television in that room shows my name and what part of the operation process I am in. She said, “When the operation is over the surgeon will come out and talk to you and once she is in recovery you will be notified to come back.”  Everyone gave me hugs and kisses and then it was off I went. On the way a calming drug was put into my IV. I must say after this happened I don’t remember anything and when I awoke I was back in a numbered room with my family staring at me.

Thoracic surgery January 2015

The night before my scheduled surgery I could not sleep. I tossed and turned all night. I was anxious and nervous about the surgery. I was mad that I had to have another surgery.  I did not want any more scares on my body.  I did not want any more tissue or body parts taken from me. I did not want to be in any more pain. I am beginning to feel like that frog in science that I had to dissect. He just sits there alive while we just dissect him picking apart his insides.  In the last two years I have seen more doctors and nurses than I can count on my fingers. Here I lay wide awake with all these thoughts in my head about the last two years of fighting cancer and the effect it has had on me mentally and physically. I had to be up at four thirty in the morning which is way too early for me.  I had to be at the hospital by five thirty. Once again another surgery scheduled for early in the morning. My husband and son accompanied me to the hospital for support. My mom and my step dad would also be meeting us there. I tried to convince one of them to take my place but they weren’t going for it. My mom told me I would be fine and that I was is everyone’s prayers.  It was very comforting to have my parents there before going into surgery. I do not see them that often but they were always there when I needed them the most. We were all lead to a waiting room of the hospital so that I could get preregistered for the surgery.  The room started to get pretty full about a half hour into our wait. A nurse called my name and I went into the office and sat down. She was very kind and asked me about my surgery and had me go over all my information to make sure it was correct. She said to me, “I must have missed you last time you were here but I have a care package for you.” She told me about a support group called the Wings of Hope that meet on Saturdays at the cancer center next to the hospital. I told her I go to the group that meets on Tuesdays there.  I thanked her for the package and she wished me well. I then went back out and sat with my family and waited to be called back for pre-operation. 

January 2015

Our New Year’s celebration was a quiet one.  I was having stomach pain and nausea from the gastro paresis. I lay on the couch watching television with my husband and my son. We watched the ball drop and then we went to bed. The next few days I was still not feeling well.  There is nothing I had I could take to help with the pain. I put a heating pad on my stomach to help relieve the pain.  My stomach was full and I could not eat anything. I sipped on some chicken broth and a hot cup of green tea. I drank a full glass of water with Miralax in it. I take Miralax on a regular basis to help me poop. When I am feeling like this I cannot eat solid food. Sometimes I can even get down liquids without wanting to throw it back up. On days like these   I just have to stay home in bed or lye on the couch and wait for my symptoms to go away.  My symptoms could last for a couple of days to two weeks. This is called a gp flare up and when it happens I cannot make any plans to go out. I can’t hang out with friends or family unless they come to see me. My husband and I can’t enjoy a nice dinner out on the town. I feel like I have become a prisoner to this disease and food. I was hoping I would feel better soon because my surgery was coming up and I did not want to feel bad from both the surgery and my gastro paresis.

December 2015

It has been one year since my diagnosis of breast cancer and I am going in to have the cancer romoved in January.  I am beginning to think that December Just is not my month.  This is when they seem to find spots in my body that turn out to be cancerous. Christmas this year was not that great. I brought my dad down like I always had to celebrate.  While he is here we go visit my nephew and give him his presents. We also went to go visit my mother in law who had been in the hospital. We took her some presents and a little blue Christmas tree that I had bought and decorated for her to keep.  My husband and I wore our funny musical Christmas hats to cheer his mom up. We also brought a hat for her to wear as well. We had pre ordered dinner and the four of us crammed into her hospital room to have dinner with her. She really enjoyed us being there. She had asked me how I was doing but we had agreed not to tell her about my upcoming surgery. She was worried about me and we did not want to make that any worse while she was in the hospital. She needed to concentrate on getting better so she could get home.

December 2014

The breast surgeon was very forth coming with letting me know that I did not need a breast surgeon. She had told me she read my reports and looked at my scans. She said, “The spot on your chest wall is nowhere near your left breast. “  “What you need is a thoracic surgeon.”  She then proceeded to make a call to a surgeon and was able to get me seen that same day in the afternoon. She was going to fax all my reports and scans to the surgeon so he would have them ahead of time to look at. I thanked her for all her help.  She wished me luck and we said our goodbyes. The Thoracic surgeon had an office in Milford about ten minutes from my house. His main office was about a half hour away in Dover.  He performs his surgeries at the hospital in Dover.  I had a consultation with him about the spot on my chest. He told me by looking at all the scans that the spot was behind my pectoral muscle. He said, “I will have to move muscle apart to get to it. “ He told me the surgery would be done at Kent General Hospital in Dover. He told me I should have minimal pain afterward. The surgery would not take very long but they never do. The registration and recovery time are what take the longest.  

December 2014

I had a scheduled follow up with my oncologist several weeks later. This is when he told me that the biopsy came back positive for cancer. He said it was the same triple negative breast cancer. I was told that when breast cancer relapses anywhere in the body that it is still considered breast cancer.  I was not happy about the fact that my cancer had spread. It meant that the chemo treatment I had already gone through had not worked. The oncologist wanted to send me to a breast surgeon because of the location of the cancer. He told me he thought it was close to the left breast.  He then said I would need to do more chemo. He would give me two different chemo meds used for breast cancer.  I would have another six rounds of chemo ahead of me. I left the office devastated. I was not happy that the chemo didn’t work and the cancer had spread. I had an appointment with the breast surgeon scheduled for the following week. The surgeon I was going to see came highly recommended. I wish I had seen her when this all started but I did not know about her then. I know of other breast cancer patients who have gone to see her for their surgeries. I actually found her name to be very familiar and then I realized I saw her speak at an event. I felt very confident about seeing her. De

The morning of my appointment I was up at 5:30 to get ready. I had to be at the hospital a half hour before my appointment. I arrived in time and had to be checked in. I walked back to a room alongside the nurse who was going to be in the room with me.  She had me get undressed and put on a gown. She asked me to lie on the table.  She had asked me if I ever had an ultra sound guided biopsy before. I said, “Yes but I am supposed to be getting and MRI guided biopsy.” She said, “That’s not what they have you scheduled for.” I said, “I am supposed to be.” She said, “Let me see what I can do but, the room might not be available or a surgeon here that can do that procedure.” I told her I did not want to have to come back. I said, “I was there when the appointment was made and the nurse specifically told them what test needed to be performed.  By this time a tech came in to perform the ultrasound. The nurse was telling her the situation and the tech said, “Let’s just see if we can see the spot that needs to be biopsied.” She said, “If we can see it by ultrasound, the surgeon may be able to get it without using the MRI.  The tech had spotted it but just had to wait for the surgeon to come in to give her the ok. The surgeon told me the reason my doctor might have wanted the MRI was because the spot was deep inside my chest wall. He said, “Lucky for us the ultrasound has picked it up and we can go ahead and take a sample to be biopsied. Once the biopsy was over it would be time to play the waiting game. Now it would be just a matter of waiting and praying that the biopsy is not cancerous. 

Here it is December again one year since my diagnosis. I had a pet scan scheduled the first week of the month. I had a follow up with my oncologist the week after. My doctor showed me the results of the scan on his computer. Everything was fine except for one spot that was highlighted on my chest above the left breast.  This was something I did not want to hear. He told me I would need to have this spot biopsied. There was a chance it could be a recurrence of the breast cancer. He told me the girls in the front would make an appointment for me to have the biopsy done at Kent General. The nurse at the front desk was on the phone trying to schedule my appointment for a MRI guided biopsy. She was having trouble getting the appointment because my doctor wanted it as soon as possible and because it was for an MRI guided biopsy. The person on the other end had originally scheduled it for an ultra sound guided biopsy. The nurse had to specify it was for an MRI guided biopsy. The hospital had to make sure a surgeon would be available to do it. I told her I could have it done here at the Milford Hospital. She told me the doctor doesn’t fool with the staff at the Milford Hospital and prefers the biopsy to be done at Kent General. I said, “He won’t be fooling with them I will or they would be fooling with me anyway.”  This meant I had to travel a half an hour instead of just 10 minutes to the Milford hospital.  After all the confusion I finally had an appointment for the following Monday three days from now. I had to be there at 7:45 in the morning. 

Since being diagnosed with breast cancer, I was made aware of all kinds of information and programs for cancer patients. One thing I found out about was that a cancer support group meets every Tuesday in Dover at twelve thirty to two thirty. I joined the group so I could meet people like me who have had and or are going through breast cancer. The group is mainly made up of women. One man attends regularly and he is the husband of one of the women who was diagnosed with breast cancer. Her husband is a cancer survivor himself. There is about ten of us in the group. We have a facilitator who works in the health care field. In the group we talk about our cancer and what is going on with us currently. We give each other advice and learn from each other. One woman attends because she was a caregiver for her husband who passed away from cancer. She is full of knowledge and insight as a caregiver. She also supports other women in the group by taking them to their appointments, providing meals and helping them cope with the cancer. I have been going now for two years. I have become to know each and every one of these strong women who may not have the same cancer as me but are fighting the same battle. The group has been very helpful and encouraging. I have been able to get through my treatments with the help of them. One woman I met at the group has been an inspiration.   She fought hard and stayed tuff with a positive attitude and sense of humor. With a diagnosis and spread of ovarian cancer the doctors gave her six months to live. With treatment after treatment and trying new meds to stop her cancer from the spread she survived 2 years before she passed away. She is sadly missed and the cancer center support group will be hanging up a plaque in her honor. 

Chewy worked out and he even gets along with my cat Herbie that I have had for five years. They both follow me everywhere.  I call them my shadows. Herbie sleeps with me and wakes me up throughout the night with his head butts. Herbie has always slept with me in our bed. Now we have Chewy in our bed along with some more of our cats. We have seven cats all together. My husband had five when I met him and we added two more. They each have their own individual personalities. The cats are smart too. We have one that can open the kitchen cabinet where we keep the snack. One is an escape artist who darts out every time someone opens the front door. Our cat nitrous will come to us for love and petting but it has to be on his terms. In the summer we bring in moths from outside and the cats go crazy trying to catch them. The animals have helped get through the cancer. I enjoy the comfort and joy they provide. I get exercise when I walk Chewy. My friend has a dog and we do play dates with the dogs often. I have taken Chewy to the beach and he loves getting in the water. On days I don’t feel well Chewy and I hang out together lounging around on the couch. Sometimes a cat or two will join us. I can’t imagine my life without my dog and our cats. Most of the cats are pictured here in our bed.

I made my appointment with the new plastic surgeon for the upcoming week. I was a bit nervous about it. I liked the plastic surgeon I had and was not sure what this plastic surgeon would be like.  There are only about three plastic surgeons in our area. The last year and a half had been exhausting. I had been fighting for my life and the last thing I needed was to have my surgeon taken away from me in the middle of him treating me.  But with all this going on, I was given a surprise by my husband that would change my life forever.  I was given Chewy. Chewy is our half Shitzu and half Cocker Spaniel puppy.  A friend of ours female Shitzu was pregnant. She had mated with the neighbors Cocker Spaniel.  My husband was over there house for band practice when the wife told him she had puppies for sale. Their dog had a liter of three. My husband went upstairs to look at them. She told my husband two were spoken for and she had one left. A few years prior to this, I would ask my husband every so often if we could get a puppy. He always said, “No, I don’t think the cats will adjust.” So I would drop the subject. So when I received a text from my husband at band practice, I was not expecting to see a cute fury puppy. He told me this puppy was up for adoption. This I told him was a big mistake. There was no way he was going to tell me I could not get this dog. When my husband came home, he told me that next week I could go to band practice with him to look at the dog.  I was so excited and could not wait till next Wednesday. I had decided to do research about his bread and how to introduce a new animal to existing cats. I wanted to be prepared so the transition of a new animal would not be stressful for the cats or us. I had brought a few wash cloths with me to pat the puppy down so his scent would be on them. I then would lay them out around the house for the cats to sniff. This would help the cats get used to the familiar smell of our new pet. That night at band practice I hung out with my friend, the singer of the bands wife. We sat and watched the puppies play. I held the puppy that would soon be ours. I wiped him with the cloths and played with him. My husband and I were going to bring Chewy home the following week. We wanted to get a crate, food and toys for him. You can see from the picture why we named him Chewy which is short for Chewbaca.

I told my husband what was going on with my plastic surgeon and Bay Health. He was not happy either. I told him I would be going to Bay Health in the morning to the main office to speak to someone. I was directed to the hospital administration. The hospital administrator introduced himself to me. I told him about my concerns over the fact that they were doing away with my plastic surgeon.  He told me he would look into it and give me a call back. He gave me his card and told me to call him if I do not hear from him. A few days later I received a phone call from a woman at Bay Health. She said she had received my message about my plastic surgeon and his leaving. She told me they could recommend another plastic surgeon. I said, “You do not have a replacement?” She said, “No, there is another plastic surgeon located in Dover and I can give you their number. I let her know how unfair this was of Bay Health and that it should be their responsibility to keep the doctor I had around to finish the surgery. She responded by saying that this was not an option. I told her to make all the arrangements so that I can be seen by this other plastic surgeon. She said, “She could see what she could do and would call me back in a few days with the information.” I had received a phone call and a letter giving me the new plastic surgeons information. They made his office aware of my situation and that I would be calling to schedule an appointment. 

Today I am not feeling well. I had my last round of chemo in May and I am still not feeling a hundred percent. I have not been feeling well at all much this week. I do not blog when I feel like this. I will be back with more of my story very soon. Thanks to all of my followers and stay well.

The first week in July I was scheduled to have my right tissue expander that had a leek fixed with surgery. The surgery was going to be an outpatient procedure. After the surgery I had to recover for about a week and then the plastic surgeon would start to fill it again.  I was given about four fills of saline which brought the tissue expander to about 400 cc. During my fourth fill my doctor had told me that he would no longer be able to treat me and I would need to find another surgeon. He told me that Bay Health was doing away with his practice. Wait I said, “What”?  “I am in the middle of getting my second implant put in.” He said, “I know I have made Bay Health aware of the situation.” He said, “I have you and one other patient I am treating. I said, “How can they do this?” He told me to call them and see what they would be willing to do for me. He told me there is another plastic surgeon in Dover that I may be able to see. I said, “what If I want to see you?” He said, “You would have to take a plane.” I was upset. I liked my plastic surgeon very much and did not want to go see someone else in the middle of my treatment. If it wasn’t for the stupid leak I had, I would have been finished and not have had to worry about this. I asked the girls in the front office what was going on and they told me I would know more than them. She said, “Bay Health hasn’t told us anything. I was not happy when I left his office. I would be going home and discussing this with my husband. 

That weekend I realized how hard it was to just have the use of one hand. The wrap was itchy and sweaty. It was on tight to my skin so I had no room to with my fingers to scratch an itch. I could not make my jewelry. I just used this time to relax and not do anything that would involve using both of my hands. Monday morning I went in for physical therapy. The wrap came off and my left arm was the same size as the right. My arm looked normal again the way it should be. The therapist was right the mummy wrap worked. He told me we will do massage and the machine and he would give me a compression sleeve to wear. He would like to wrap it again but he was going to wait a week. My compression sleeve he ordered was not in yet so he gave me one. The one he gave me was a sample one he had gotten from a company called lymphadiva. He told me they sell compression garments and I could find them online. The temporary sleeve had tattoos all over it. When I had it on I looked like I had a tattoo sleeve. It was a tad to big so the therapist wasn’t sure if it would help. I would have to wear the sleeve all day or I could wear it all night when I sleep. I could choose to wear it day and night if I wanted to. The first time I wore it out my husband and I were eating at a restaurant I had him take a picture. From afar it didn’t look like a sleeve but just a bunch of tattoos. I sent the picture he took to my mom via text. I got a txt back from her asking what I had done. She said, “Tell me they are not real.”  I said, “No it’s my new compression sleeve for my lymphedema.” She was relieved. It wasn’t until my therapy sessions were just about to end that I had received my own compression sleeve and machine. I had gotten a call from a gentleman of the company where my sleeve and machine was ordered. He wanted to deliver the sleeve and machine to my house. The day he arrived he showed me how to use the sleeve and the machine. He had me use the machine while he was there to see if it had been working properly.  He left me with a video tape and some books with information about the equipment. The sleeve had Velcro going all the way up so I could fasten it snug to my arm. The other sleeve I had just fit over my arm like a stocking. I have to use the machine every day for about forty five minutes. I usually use while I am watching television. A couple of time I used it while lying in bed before I go to sleep. The sleeve and machine has helped me to manage my lymphedema. My arm still does swell with fluid but I was told it will do that. I might need more therapy from time to time. Since there is no cure, the sleeve, machine, and physical therapy would be the only way to manage the fluid and swelling from the lymphedema.

In my second week of therapy, I had what is known as the mummy wrap. The physical therapist wrapped my arm after he massaged it. He told me with this wrap, my arm would shrink back down to the way it was before the lymphedema.  The therapist put a sleeve witch looked like a sock on my arm. He then took this white light bandage and wrapped it around the sleeve. The therapist took some white cotton and wrapped that around the bandage.  He then wrapped some ace bandages around the cotton. When all was said and done I looked like I had and arm from the Michelin Man.  The therapist then asked me to bend my arm to my chin. This was not easy to do. My arm was wrapped so tight I could not get it to bend.  I would have to wear this wrap until I saw him again. Unfortunately this was a Friday appointment and I would not see him until Monday.  I would have this wrap on all weekend. I basically would have the use of just my right hand. I am glad I am right handed. My arm with the mummy wrap felt like it weighed a ton. It was so tight I thought my circulation would be cut off.  I could not drive with the wrap on. On days when I knew I would be getting the mummy wrap my son would drive me to therapy. 

I was evaluated by a physical therapist that specialized in lymphedema of the arm. Based on his evaluation of my arm he told me I would need to be treated. He told me I should come in three days a week for about 2 hours each time.  During my appointment he would give me a massage of the lymph system of my legs, stomach, neck, and arms. We would have lengthy conversations about the lymph system and other things like family and my cancer history. The first hour was for massage and the second hour I spent with my left arm in a compression machine. My arm was in the machine for forty five minutes.  I asked the therapist if there was a way to treat the lymphedema. He told me I could get the fluid removed but that it would just come back. He fit me for a compression sleeve and compression glove I could wear at home. He ordered a compression machine for my arm that I could use at home. He told me that lymphedema is an ongoing issue I will have it for the rest of my life. I He said, “If you use the machine and the sleeve at home you should be able to keep the fluid down in my arm.”  If the lymphedema keeps coming back I would need more therapy. I was scheduled to see him for three times a week for four more weeks. He would then reevaluate me to see if I need any more therapy. 

I had three weeks in between my chemo treatments to rest. I was fatigued and I was having fullness and stomach pain from my gastroparesis.  I would type my blog or watch television. My husband is in a band and I would lie on the couch some evenings and listen to him practice upstairs. I had a hobby of making jewelry and I would do that on days I felt up to it. One day my husband noticed that my left arm was bigger than the other. It looked swelled up. I told him I will let the oncologist know at my next follow up appointment. I saw my doctor the second week after my chemo treatment. He had asked how I was and I told him about the arm. He wrote me a prescription for physical therapy. He told me the arm was retaining fluid and called this lymph edema. He stated that when they take out the lymph nodes during surgery fluid can back up causing the arm to swell. He told me physical therapy and a compression sleeve could fix the problem. So when I was done with my appointment, I headed over to the physical therapy department of the hospital and made an appointment with them. I would be getting an evaluation to determine the need for physical therapy. If I did get physical therapy I would be going three days a week for about 2 hours. They scheduled me with a physical therapist that specialized in lymph edema of the arm. 

My sex drive is not what it used to be either since chemo. My husband and I have had to find other ways to be intimate. Lately it’s mainly all about him. I have no desire to have sex. With my boobs gone and the loss of hair I don’t look or feel attractive anymore.  My husband still finds me attractive and he tells me all the time.  I will be researching alternatives to hormone therapy. I love my husband and I would like to have sex with him. When we have tried it just hasn’t been the same for me. Sex has been painful even with lubricant. When I am on top I look down at my chest at the scares and I feel less attractive.  Breast stimulation was a big turn on for me during sex and now it’s gone. I do not get the same feeling from my implant. I have some numbness around and under my armpit from the doubles mastectomy. I have a scar that goes from the left end of my breast to the right end of my breast. I do have scare cream I can put on to diminish the scar. Not having my real breast and desire for sex is just one more thing cancer has taken from me.

I was still tired from the chemo and I was getting hot flashes every ten minutes on a daily basis. I hadn’t had my period since my diagnosis in December two thousand and thirteen. I was told by other cancer fighters and by reading cancer books that chemo can put you in permanent or temporary menopause. Well that explained the hot flashes and night sweats. I was getting night sweats and would have to change my pajamas throughout the night. My bed and clothes would be soaked. I have turned our air conditioner up because of the hot flashes. I have found that a hand held fan and eating Popsicle help. I had asked the oncologist if I could take hormones that my gynecologist prescribed to deal with the symptoms but he told me not to. He had said that even though my cancer was not hormone driven he suggest I do not take them. So in the mean time I deal with the hot flashes until I can find a save and approved by the doctor alternative. It is not just the hot flashes but I have also had issues with vaginal dryness. I noticed this when my husband and I tried to make love one night. We used lube but it still hurt. That’s why I went to the gynecologist and he prescribed me hormones. He told me when you go through menopause your vaginal tissues become thin. He said the hormones would help with this and the hot flashes. I was already taking Selexa for depression so he increased my dosage because this medication can help with hot flashes as well.  I will be looking into alternatives because I still have symptoms. 

The shot I was given is called Neulasta. This shot is given to keep your white count from getting low.  Chemo can make your red and white blood cells low. Neulasta works on your bone marrow so your white counts will not fall low. I was told to take Claritin the day before the shot and the day of. Taking Claritin is to help with the pain you get from the shot. Even though I took the Claritin I still had pain. I took over the counter pain relievers but they did not help. I was in pain for the next four days.  All I could was laid down on the couch. I called the doctor’s office and spoke with the nurse. I asked her why I was in so much pain all over. She said, “That’s how you know the shot is working on your bone marrow.” She told me she would speak with my doctor and ask him if there is something else I could take. My doctor prescribed me twenty milligrams of oxycodone. I had taken this before as needed with my pain from the gastroparesis and it worked. It worked for the Neulasta all the excruciating pain I had all over my body was gone. I heard this shot called New Nasty instead of Neulasta. Now I know why. The pain is unbearable for me.

The morning of my chemo treatment my husband gets the laptop. Since it would be a long day we figured we could watch a movie to pass the time. When I arrive at the office I was called back by a nurse who led me to the room where the chemo is given. There were chairs on either side and televisions hung on each side facing the chairs. I had to sit in a chair by the nurses’ station so they could draw blood from my port. The results from the blood work take about twenty minutes to get after it’s drawn. I have to wait and if the blood work comes back fine I can get the chemo. The nurse gave me two different anti-nausea medicines through my port before chemo is administered. The chemo is ordered while the anti-nausea medicines are being administered. There were other patients getting their chemo treatments at the same time I was. On most chemo days it seemed to get pretty busy and I had a chance to meet other patients. . Since I would be getting my chemo through lunch a volunteer came around with a lunch menu. I could order from the choices of food from the menu. The volunteer would go get the food for the patients from the cafeteria. The one volunteer I had met that day was a breast cancer survivor herself.  All the volunteers I have met there are very nice. They come around and offer you water, soda, crackers or cookies. I had a volunteer come in and offer to give me a hand massage. I wasn’t about to pass that up.  I was not feeling that hungry because of my gastroparesis but I picked something to eat anyway. I figured I would need my strength after getting chemo. Because I have the gastroparesis the chemo filled my stomach up and it was starting to feel full and hurt. My husband went to the cafeteria to get lunch for himself. We ate lunch while finishing up our movie. I had arrived there that morning about eight thirty. It was three thirty by the time I was finished getting my chemo treatment. I was tired. I went home and took a nap. I would have to go back tomorrow at three thirty to get a shot for my white count.

I had a scheduled appointment to meet with my new oncologist in Milford. I would be getting treatment at the Milford Oncology Department because it was close to my house. I was met by a nurse navigator who walked me back to the exam room. She gave me a binder filled with information. She told me if I needed anything she could help me. The oncologist went over the notes from my previous oncologist. He told me I would be getting two chemo meds once every three weeks for six times.  The two meds would be Cytoxan and Taxotere.  He explained that both would be given at the same time and would take about five hours. The oncologist went over the side effects and gave me an information packet on the medication. He told me I could come back in tomorrow to start treatment. He gave me a script for numbing cream for my port. I did not have the cream with my previous cancer. He told me to put the cream on a half an hour before my appointment. The cream will numb the port so I will not feel the stick from the needle. I went home and felt really anxious that night about getting chemo. I remembered how sick and drained I felt before with the chemo I received with my other cancer.  My husband took off from work so he could be there while I get treatment. 

Before I get implants I have to have my skin of my breast area stretched out. The tissue expanders I had put in get filled up by a syringe with saline by the plastic surgeon. I go once a week and have my tissue expander filled. This is not fun and causes pain and pressure to the breast area. I take a pain med that was prescribed to me before I go for the fills. I can feel the tissue expander harden and fill up. On days when I had my fills I slept on the couch surrounded by pillows. It was more comfortable for me to sleep on the couch. The plastic surgeon said he would need to overfill to fit my implants in. I had about 600 cc of fluid go into each tissue expander. I was scheduled to have my port put in  on the right side just above my tissue expander. The surgeon who removed my breast was going to be putting in my port. This was an outpatient procedure and I was scheduled for the early morning surgery. I did not get home until dinner time that night. I had to stay a little longer to be monitored for a collapsed lung I developed during the surgery. I had to wait a few more hours then get an ex-ray which did not show the collapsed lungs. I finally got to go home to rest and recover. The next week I had to get another fill of my tissue expanders. When the plastic surgeon asked me to look in the mirror I noticed the right expander was smaller than the left. He took a look and said, "Your right." He told me it could be leaking and he would need to go back in and fix it. He said, "Sometimes these things happen or when they put your port in they could have hit it." He told me that he would continue to fill the left tissue expander for now. He said, When we put the left implant in I will go ahead and fix the right tissue expander." He would then continue with the fills. So for months I would have one implant and one tissue expander. He told me to start thinking about the size of the breast I want. It was hard because the size would not be in cup size but rather volume of the silicone implant. I went home and held up my bras to my chest to see if I was getting close to the size I was before. I went online and looked at other women with my body type and weight, who had implants after breast cancer to get an idea of size. I didn't want to be too big or go too small either. The size was very hard to determine and I became frustrated on not knowing how big to go. 

I am angry. I feel like I have been cheated in life mentally and physically.  I was not prepared for what having breast cancer would have in store for me.  I was sad and thought no one could understand what I was going through.  The funny thing is I didn’t realize how much I missed my breast till they were gone.   I had two children and with gravity it’s not like they were firm and perky but they were mine and I didn’t want to lose them.  Its one thing to have cancer but to get body parts removed is another. I don’t think it would matter so much if my boobs hadn’t served a purpose all these years.  My breasts were known for feeding children, providing cleavage and sexual arousal.  But regardless of all that, having breast is just knowing and feeling like a woman.  This is how we were made and once it is taken away you feel less like a woman.  I feel different.  It feels like something is gone.  It was a loss.  I want to say this is when the depression hits. I look at it now thought a grieving period.  You cannot get them back once they are gone.  Everything from this point physically changed for me.  While all this is happening and your head is still spinning you have to make a very important decision.   Should I get implants or should I go without. I would have never thought I would have to hear this question in all my life.  I wasn’t prepared to make this decision.  I wasn’t prepared for any of what breast cancer had to offer me.  I felt I was dealt a shitty hand in a poker tournament and I was about to lose more than I had bargained for.  The hard part was that I had to make this decision on my own.  It is my body and no one else could help me.  I had to decide if I should get implants or not.  

It felt good to be home. I was greeted by my cat that came to sit next to me on the couch. The couch is where I sat and fell asleep that night. I had to prop myself up with pillows around me for comfort. The pillows helped ease the discomfort from the surgery and helped to keep my cat from jumping up on my chest. I was still in a great deal of pain. I had the tubes sticking out from each side of the sides where my breast used to be. I had to be careful with the drains to make sure nothing happened to them. The next few days were hard mentally.  I became depressed. My husband and son hung out with me and we played some board games. We watched some movies and played cards. They tried to keep my mind occupied. My son would put on Americas Funniest Videos to make me laugh. I said to my husband, “why wasn’t I depressed in the hospital?” He said, “Your body and mind were busy trying to recover and overcome pain so you had no time to be depressed.” This made sense to me. When I looked in the mirror It was a constant reminder that my breast where gone and I would be fighting cancer. I decided I needed to speak to someone who had gone through what I had. I contacted my aunt who is a breast cancer survivor. She told me to call the Delaware Breast Cancer Coalition. She told me they could put me in touch with someone who had been through the same thing as me. The Mentor Program matched me up with another survivor close to my age who had gone through the exact same surgery as me. After speaking with the mentor, I did not feel so all alone. I was able to talk to someone else who knew how I was feeling and what I had gone through. I was also prescribed depression medication at my follow up appointment with my primary care. Through the Delaware Breast Cancer Coalition I found a support group in my area for cancer survivors. It was great to be able to have these resources and people I could talk to. My family has been here for me but they cannot understand how I am feeling.

In the morning my surgeon came in to see how I was feeling. I told him that I was constant pain from the surgery.  He told me that during surgery they had to give me 2 pints of blood. He said, “I would like you to stay for another night, I will come back in the morning to check on you. My husband stayed with me both days. There was a chair that reclined back into a bed for my husband to sleep on. He wanted to stay with me which was nice. I enjoyed him being there. He would bring me back food when he went to the cafeteria.  It was not long before the nurse came in again to give me my medicine. She informed me that the doctor ordered a morphine drip.  The drip was for the pain. I could press the button on the drip every 3 minutes.  I could use the drip whenever I wanted and did not have to wait for a nurse to come and give me pain meds. The next day my surgeon popped his head in and said, “I think you’re well enough to go home today, I will discharge you.” A few hours later my plastic surgeon came in to see me.  He wanted to know how I was and wanted to check my bandages. He told me my bandages felt wet.  “Has the other surgeon been in to see you he asked?” I said, “He popped his head in and told me I could go home.” “Did the other surgeon check your bandages he asked?” “No I said why?” He said, “The bandages where the other doctor performed the surgery are leaking,” as he shook his head. There were 2 nurses standing by and he told them to put a fresh bandage on the site. The nurses must have known about the other surgeon because we all kind of looked at each other in agreement when my husband said we were not to found of him. The plastic surgeons bandages where dry and looked very good to him.  He had no problem either with sending me home.

The morning of my surgery I was a bit nervous. I was put into a holding room to be prepped for surgery. I was given a gown to put on and slipper socks.  I laid on a gurney while a nurse went over all my medical history and medications. Both of my surgeons came in prior to talk to me about the surgery. The anesthesiologist came in to explain the anesthesia I would be getting and how it will affect me. First I would be given a medicine to help me relax and then I would be wheeled to the operating room. I don’t remember anything after getting the medicine to relax me. The surgery must have been done because the nurse woke me up. I was still feeling a little groggy. She asked me how I was feeling. She informed me that I would be going to a room for an overnight stay. During surgery I had lost blood and they had to give me two pints. The surgeons wanted to keep in the hospital so that I could be monitored. I was in a lot of pain from the surgery.  As soon as there was an available room I would be wheeled upstairs.  It was not till that evening that I was in a room. I didn’t get much sleep that night. It seemed like nurses were coming in around the clock to take vitals and give medicine. 

Filling the expanders would be done with a syringe and saline.  The doctor pointed out that I should feel some pain and pressure with the filling of the tissue expanders. He asked me if I wanted saline implants or silicone. He told me he would over expand in order to fit the implant in. Over expanding would stretch the skin in order for the implant to fit. All of my original breast and tissue will be gone so the plastic surgeon wouldn’t have anything to work with.  I chose silicon because with saline the breast over time would sag. He asked me how my New Years that just passed was. I told him great me my son and husband went out for dinner at the casino. I told him I had a lot of pain in my left breast that night and we had to leave early. He told me not to worry about the surgery and to make sure I get those test done prior. I told him I would. After signing my life away and filling out forms, the next time I would be seeing this doctor would be the day of my surgery.  I went home and did some light cleaning and straitening up of the house. I did not want to come home after surgery and worry about anything. I would be concentrating on healing. I was scheduled for surgery the week of January ninth.  I went into the hospital to get my blood work and ekg done. I also pre-registered for surgery while I was there. They told me to expect a phone call as well a day before surgery so they can go over my medical information and give me instructions. Since I was diagnosed with breast cancer and I would have to go through surgeries and treatment, I decided to file for social security. I considered myself disabled and would not be returning back to work. I could not do the job I had under these conditions. I had filed with the social security office as soon as I received my diagnosis because I know it takes about six months for them to make a decision.

I had my follow up with the plastic surgeon a few days later.  I told him I decided to go ahead and get the implants. The plastic surgeon informed me that he spoke with my surgeon and it would not be a problem for them to work together. He told me once my surgeon removes all the cancerous breast tissue and the lymph nodes from under my arm pit, he would go in and place the tissue expanders in. The surgeon said, “Tissue expanders will be used to stretch the skin so that an implant can eventually be placed in.” He told me I would need to have blood work and an ekg done prior to surgery.   He said I should expect to be in surgery for at least eight hours. He also said this is an outpatient procedure and I should have minimal pain to none at all. He told me the tissue expanders would have two tubes on each that would need to be drained twice a day after surgery. He said it would be important for me to write down on a piece of paper the amount of fluid that gets drained.  I would need to bring this paper in to show him on my follow up visits. I would need to empty the tubes till they run clear and there is little to no fluid left. He then would remove the tubes and filling of the expanders would begin. 

I went home and read all the books. My husband and I talked about it in detail but he said, “It is your decision and I will be happy with whatever you chose.” He did say if I get them I should go bigger. I laughed. He said, “You laugh but if I had to lose my penis and they were going to give me another one I would go bigger.” I didn’t want to laugh but I did. This was one of those times when you realize you can find humor in cancer. I said, "I would be happy with the size I had." As long as I had some shape to fill out my clothes and to keep me looking normal I didn't care how big they were. I then came to the realization that this is real and I would be losing my breast and getting fake ones. I didn’t want to have to make this decision it was not fare that I had to. I also researched online about making this decision.  I did find some information that stated women, who do get implants after removal of breast from cancer, psychologically feel better. I went back and forth on the decision and weighed out the information I had collected. 

I was curious about implants. I wanted to see if this would even be an option for me. I wasn’t sure I wanted them just yet. I was told if I did decide to get them it could be done the same time my surgeon removes all my cancer and tissue. This was an option for me and would save me a surgery. I decided I would consult with a plastic surgeon to find out the information and what would be involved. I made an appointment with the surgeon who was part of Bay Health. He had done many reconstructions on women like me who have had breast cancer. He had been very thorough and went over all the information. He gave me booklets to read at home. The plastic surgeon explained that he would need to contact my surgeon who would be removing the cancer. He said I will need to ask him if he will let me work with him on you. He explained to me that once my surgeon removes the breast and all the tissue, he could go in after him and do his part of the surgery. He told me he would contact my doctor and that I should go home read the books and make a list of any questions I may have. He told me to come in next week for a follow up. If my surgeon gives him the go ahead, and I decide I want the implants, he will explain the surgery and the procedure then. 

I just knew I wanted to make an appointment with my oncologist to see if he agreed with the surgeons plan. My oncologist office is an hour away but it would be worth the trip. My husband and son wanted to come with me. My mother and stepdad wanted to be there as well. They would be meeting us at my doctor’s office.  My doctor entered the exam room and we all introduced ourselves. The doctor already knew my mother and my son but, my son was only two at the time.  My son is 22 years old now.  The doctor went over my MRI and mammogram with us. He suggested I get a double mastectomy.  He said I could get a lumpectomy which is the removal of the left breast but chances are, the cancer would eventually spread to the right breast. If I get a double mastectomy both breast would be removed.  He also stated that the lymph nodes under the arm pit would have to be removed and biopsied. He told us breast cancer can spread to the nodes. He then said I would need to have chemo. I asked him about getting reconstruction surgery. He had no problem with this at all.  The doctor gave me a paper with statistics on it.  The paper showed the prognosis in percentages with treatment and without. The unfortunate news about my cancer is that it is triple negative, this type of cancer doesn’t respond well to chemo. My doctor seemed hopeful and with surgery they could remove all the cancer. I trusted my oncologist. He was there for me when I had the Hodgkin’s lymphoma. We all agreed that this would be the plan and the doctor was going to fax it to my surgeon. Before I left the office I had to have a consult with the nurse about the chemo meds I would be getting. After she went over the medication, dosage and side effects I had to sign consent for treatment. I would be getting the surgery first and then the chemo.

My husband came with me to my appointment with the surgeon.  We were in the exam room with the nurse when the doctor walked in.  He had my chart in his hands. He proceeded to tell me that they found cancer in my left breast.  There were four spots and he called it stage two triple negative breast cancers.  The spots had been measured at four centimeters.  He said my cancer did not test positive for hormones and that’s why it is triple negative. I would not be a candidate for hormone therapy. He suggested I get a lumpectomy which is removal of the left breast and chemotherapy.  He then asked if I had any questions. Of course I had questions but could I think of any? My head was still spinning from the words you have cancer. I did not hear anything after that. I am glad my husband was there. Maybe he had questions but he didn’t. I think his head was spinning to. The surgeon examined me and I asked him if he could send the report to my oncologist. He told me he would along with his notes from today’s visit.  He then left the room and I got dressed.  I went out to the waiting room with my husband. We were discussing what we were just told, as I was wiping tears from my eyes. An elderly women who was in the waiting room as well, came up to me and asked if I had gotten some bad news. I said, “Yes I have breast cancer.” She said, “I am sorry to hear that can I have your name so I can put you on our prayer list at church?” I said, Sure that would be wonderful.”

It was three weeks before Christmas and I had noticed a lump on my left breast while in the shower. I ran my hand over the lump and felt pain. After getting out of the shower, I showed my husband who also felt it.  He said, “It does feel like a lump.  I said to him that I would call Monday morning to see if I can get a mammogram. Because I had a suspicious lump on my breast, my primary care had to fax a doctor’s order to the hospital. Once that was done I made an appointment for a mammogram. The mammogram showed two spots on my right breast. I was then sent for an MRI. The MRI showed four spots. My doctor suggested I have these biopsied. So once again I have an ultra sound guided biopsy preformed. The tech was the same one who performed the one I had done in October for the right breast. She was surprised to see me back so soon. I told her I felt a lump in my right breast. She said, “Let’s hope it’s just fluid like last time.” I wanted so much for this to be the case but when the doctor said it was hard tissue, I did not have a good feeling. All along I felt this lump was different. I think it’s the pain I had with it. I had no pain on the right side of my breast with the previous lumps. The tissue was taken out to be biopsied. I would wait for my doctor to call with the results.

It was Monday morning when I received a call from one of the nurses at the hospital. I was on my way into work. This would be my last day of work for the holidays. I had the rest of the week of for Christmas.  The nurse had asked me how I was, and if I had made an appointment with my doctor to go over the results. I had told her I thought he would call if something was wrong. She insisted I call my doctor’s office. So when I hung up with her that’s just what I did. My doctor’s office gave me an appointment to come in. The next day while I was home my primary care doctor called me. He said, “There was no need for me to come in.” He told me I should make an appointment with my surgeon.

I laid on the gurney while the tech proceeded to look for the spots on my right breast.  I could see everything she was doing on her computer monitor. The tech put warming gel on the end of a device which she then runs over my breasts looking for the spots to be biopsied.  When the doctor comes in she numbs my breast area using medicine in a needle.  Once the area is numb, the tech runs the device to the spot. The doctor then extracts the tissue or fluid from the breast.  The doctor had informed me that all my spots were fluid filled.  She took all the fluid out and I was done.  If it had been tissue, it would be sent out for biopsy.  I was so relieved that nothing had to be biopsied. I was not in much pain and I would be returning back to work the next day.

  In July I had started my new job working for a neurologist. I ran the front of the office by myself.   The practice I worked for was small just like the practice of my previous par time job. I enjoyed my position and was working full time. I was traveling further but making more money. There was no previous employee to train me so I learned the computer system and the office functions on my own. So when I had my biopsy in October, It was a relief to know I could go back to my new job and enjoy life again. My husband started playing guitar again with a gigging band. I would go with him when he played at different venues. In November it was my younger son’s birthday. We took him out to dinner to celebrate.  The Christmas holiday is right around the corner and its one of my favorite times of the year. I could not wait to decorate the house and our tree.

The day of my MRI appointment I was told to change into a gown.  I was given dye intravenously. I then had to lie on the machine flat on my stomach.  My breast where positioned in cushioned holes. I was given earphones that played music to drown out the sound of the MRI machine. This is not very effective. I could still hear the MRI machine.  The machine slowly moves back into a tunnel and then pictures are taken. My doctor had told me that the MRI pictures will pick up anything that was missed with the mammography. The MRI did just that. I had three spots on my right breast that would need to be biopsied. This is when I started to panic and nerves set in. You think the worst when you hear this not even knowing that it could turn out to be nothing.

I was scheduled for another procedure at the hospital. This time I would be getting an ultrasound guided biopsy. This did not sound like something that was going to be fun. I was very nervous on the day of my biopsy.  I was reassured by the ultrasound tech and the other nurse that I had nothing to worry about. They would be in the room along with the doctor during the biopsy. 

mammogram

In October of two thousand and thirteen I had my yearly mammogram done at our local hospital. The female technician led me to the room with the machine for taking pictures of breast.  I had to take off my shirt and bra.  I was given Band-Aid strips to cover my nipples.  I then had to lift my right breast up onto a flat plastic plate with the help of the tech.  She then brought down another plastic plate slowly onto my breast.  This squishes your breast onto the plate and pulls your skin on the chest area.  A mammogram is uncomfortable but doesn’t last but a few seconds.  The same thing is done to the left breast. They get pictures of both breasts while you are facing forward then the tech changes the position of the plate and more pictures are taken.  The films are read at the hospital by a radiologist then he types up a report that is then sent to my doctor. I had gotten a call from my oncologist a few days later and he wanted me to have an MRI. He said, “The mammogram showed some spots which could be seen better with an MRI.” An order was faxed to the hospital and they called me to schedule an appointment.

 I didn’t’ realize how many people had gastoparesis till I went on Facebook and found the gastorparesis awareness page.  I then came in contact with three other people in my state that have gastorparesis. I did not feel so alone anymore and I realized some with the same condition are far worse off than me.  I learned a great deal about the disorder and how other people handle their symptoms. Some have lifelong feeding tubes for nutrients and some have died from complications of this disease.  Dealing with gastorparesis and eating has been stressful on my body and mind. I hope that one day there is a cure.  I would like to have a normal stomach and be able to eat when I get hungry without any complications.  At this point my doctor can do no more for me.  I have purchased a few books from the author who has gastroparesis herself.  One book has recipes that she has had success with herself.   I was diagnosed with syncope about the same time as my gastroparesis diagnosis.  I was referred to a heart doctor because I had passed out a few times.  I had to have my heart checked and a tilt table test done. I had an echocardiogram and an ekg to check my heart which was fine. I then had a tilt table test that confirmed my syncope. I had to go to the hospital for the tilt table test.  I was met by a nurse who prepared me for the test. The nurse strapped me on to a table.  She then explained that she would raise the table while monitoring my blood pressure and the time. I was to stand up for thirty minutes. My doctor came in shortly after and the test began.  We were all chatting and having a good laugh.  I was standing for almost a full thirty minutes when the nurse asked if I was ok.  I told her I felt dizzy and sick to my stomach.  She said, “Your blood pressure is dropping.”  She then tilted the table back done and unstrapped me.  The doctor gave a prescription to help with the symptoms of the syncope. He was not sure how I got it and told me that it could go away on its own. Here I am seven years later and I still have the syncope. I believe it is somehow related to the gastroparesis. I believe both of these things are because of either the previous radiation or chemo I had in the past. I have come to realize in my own experience this is how things work. I had one disease and was given two different medical treatments to cure it, only to end up with something else. I was not told by my oncologist about getting the syncope or gastroparesis from my previous treatment.  He did however tell me that woman who have had radiation to the chest area, are more likely to get breast cancer. He said, “I would need to have a mammogram starting now and every year because, I am at risk." At age thirty five I had my first mammogram and have been getting them ever since. 

I felt like I had hit a brick wall.  I could not believe I had a stomach that did not work. How could this not be fixable? I wanted to be able to eat without being in pain or feeling sick. Eating for me was not fun anymore. I love to cook and come up with new recipes but sometimes, I couldn’t eat what I made.  When I go out to restaurants, I always take a doggie bag home. With my stomach condition, I cannot finish a full meal. I have a gastroparesis card which entitles me to smaller meals or a kid’s menu meal.  The card states my condition and the need for a smaller meal. This card can be used in any restaurant.  You just have to show the card to the waitress.  I have not had a problem yet with any restaurant refusing it. I bought a nutri bullet for making smoothies.  I mix fruits and vegetables with some yogurt or orange juice so my meal can be in the form of liquid. I have trouble with feeling hungry in the morning often.  I usually don’t feel hungry till around noon.  This is usually because I am still full from the dinner I ate the night before. I eat solids and do liquids and when I have symptoms I mainly stick to a liquid diet. If I have stomach pain and vomiting I don’t eat anything. I just lay in bed and rest.  I have anti- nausea medicine but sometimes it’s not enough. I also have pain meds but they cause constipation which is not good with gastroparesis. I usually use a heating pad or get into a hot bath for the stomach pain I get.  One week I had a flare up which put me in bed and I made the mistake of watching the cooking channel.  I became depressed as I watched chefs cook all the foods I could not eat during my flare up. 

The endoscopy confirmed that I had something called gastroparesis.  I had no idea what gastorparesis was.  I had the doctor explain it to me. He said, “When we eat, our stomach muscle contract to push food through.”  The doctor told me when I eat my stomach muscles don’t contract.   So the food I eat is taking longer to digest or might not digest at all.  He told me that there are very few treatments that work for GP. He then went on to say that doctors are aware of this condition but they don’t know how to treat it. He told me he would put me on a medication called erythromycin.  He said this can help stimulate my stomach muscles so that I could digest my food. I agreed to try the medicine.  My doctor told me that I should notice a change within two weeks of taking the medication.

I was on the medication and was not seeing a change in my condition.  During my follow up appointment with doctor, I told him the medicine was not working.  The doctor told me about another medicine that works but it was not FDA approved.  This medicine was called Domperidone. The only way I could get this medicine was to go online.  Since this medicine was not FDA approved it was not covered by insurance. I had to pay fifty dollars a month out of pocket to take the medicine. At first it seemed like the medicine was working but after several months, my symptoms started coming back.  I would feel full after just the tiniest bites of food. I would burp and regurgitate food back up into my throat.  I felt nauseas. I then went back to my doctor to find out what else I could do.  The doctor told me that no more options where available.  There was no way to cure my condition. I was not losing weight so a feeding tube was not an option yet. He told me to eat six small meals a day and drink lots of liquid. My doctor said liquids are easier to digests than solids.