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.