La Muffin's Journal

JOURNAL OF A BREAST CANCER PATIENT
An intimate and candid account of my personal experiences with breast cancer

This journal is quite long. You will have the chance to jump around the page every so often.

Most recent entry: 9/25/00 (at bottom)

6/18/98 Thursday - I went to my new internist’s office for a routine physical on this day, after having recently moved back to Denver from Wisconsin. Although I already had multiple sclerosis and adrenal insufficiency, I did not expect her to find much except maybe an elevated cholesterol. I had asked in a whiny voice if I really had to have a pap smear, since I was 4 years post-total hysterectomy. She let me slide on that one. So, I pushed my luck and asked if it was necessary for me to have a mammogram this year, since I hadn’t felt any new lumps and I’d read that the National Cancer Institute was now recommending yearly mammograms only after age 50. I thought it had been 3 years since my last one, but I was just too tired and didn’t feel like messing with it. She told me it could probably be put off, but then did a thorough exam of my breasts. I remember noticing how much time she spent, more on the right than on the left. When she was done, she didn’t have any comments about it but said she thought it would be a good idea to get the mammogram after all.

6/24/98 Wednesday - I went for my mammogram at the Porter Breast Center, which is affiliated with PorterCare Hospital in Denver. I had been there before and everyone who works there is just as nice as can be! After my mammogram I was asked to wait while the technician made sure the views were good ones. I remember thinking, as I always do, that I should just get dressed because I know it’s going to be fine and I didn’t like sitting there with nothing but a skimpy gown on. When she returned, she said she wanted to take one more picture. I thought, okay she must be seeing the scars from the removal of a benign fibroadenoma in the right breast years ago... OR... maybe I have another fibroadenoma. I thought she might want to do a spot film (close-up) of one area but all she did was repeat one of the previous films. It wasn’t the right one though - it was the left. I figured the first one must have been blurry or something. I waited again and this time she said I could go. “Good. Now I won’t have to do this again for another 3 years.”

6/25/98 Thursday - I received a phone call from the Breast Center and they wanted me to return for a spot compression of the left breast. But because they didn’t yet have my old films for comparison they scheduled me for 2-1/2 weeks later. I thought, okay this must be a fibroadenoma because they wouldn’t let me wait that long if it was more suspicious. So I made the appointment and allowed myself to relax but was thinking what a pain this was becoming.

7/13/98 Monday - I went to the Porter Breast Center for my spot compression (also known as cone view). It was at that time that I saw the original films. The technician put them up on a light box on the wall so she could determine exactly what part she had to do the spot compression on. I was determined to get a good look at them because I knew what my previous fibroadenoma had looked like. My heart sank as I looked at what was in front of me. I am no radiologist mind you, but what I was seeing leapt out at me like it was shouting and I didn't feel good about it at all. On a normal mammogram you can easily see the breast tissue inside the surrounding fatty tissue. The denser breast tissue is whitish with little irregular spots connected by a lot of curvy “strings”. These are all well-contained within a tight network of lines and spots with easy-to-see boundaries. But on my left breast there was something new that was separate from the rest of the breast tissue. To my untrained eye it looked exactly like normal breast tissue but it was off to one side by itself, like a satellite in the fatty area, and it appeared to be “tethered" by one thin white line. It was “spiculated”, as I would learn later from my research on the internet - kind of star shaped with pointy extensions.

So, she did the spot compression which was more painful than the last one I'd had for the fibroadenoma. I mean, she really wanted to compress that area! Don’t get me wrong... I know she was doing it the way it is meant to be done, but I was surprised at how uncomfortable (downright painful) it was! I was literally standing on my toes to keep my skin from ripping off (LOL). When she brought back the film, the area in question looked just like the one on the other film but bigger (because it was a “close-up”). I still could not distinguish it from normal breast tissue as far as its appearance but I did know this was not another fibroadenoma. It did not have smooth edges.

The x-ray tech asked me to wait in the waiting area while she had the spot films looked at briefly to make sure they were good enough. At that time, I asked her whether there would be enough time that day to get me in if it happened that they wanted to do anymore studies such as an ultrasound. She said if they wanted more tests it probably would not be the same day. "Great, they are going to drag this thing out as long as possible."

After a few minutes, she returned and said the radiologist wanted an ultrasound and they were able to do it right then. I was relieved that I wouldn’t have to wait another week or more. I went into a new room with another technician and had the ultrasound done. I watched as she did it and I noticed differences from my last ultrasound. Where the fibroadenoma had been round, smooth, and very easy to distinguish, this mass did not have easily-seen boundaries. It did not look perfectly round or smooth and I could not make out all of the margins. But, the most striking difference was that there was what appeared to be a moving shadow beneath the mass. As she moved the ultrasound probe, the shadow moved opposite it. It is like the affect of shining a flashlight from above on a small ball that is stuck to the wall. My fibroadenoma had not produced this shadow. I asked the technician why it looked like that and she said the shadow is caused by the mass blocking the ultrasound waves. When she was done, she asked me to wait in the room while she showed it to the radiologist.

At this point, I did not know about the significance of shadows on an ultrasound but I was still fairly sure it was not another fibroadenoma. I did begin to think this might be cancer but my mind kept telling me that couldn’t be possible because I was only 41. I was trying to think of the other benign types of breast lumps but was unable to remember any of them. Soon the technician returned with a tray of sterile packages and instruments in hand. She said the radiologist was on his way to talk to me and I said, “Hmm... it looks like someone wants to do a biopsy?” She chuckled and with a big grin said, “You’re right!”. I am so impressed with the friendliness and cheerfulness of everyone who works here! Even in the face of something possibly wrong they put you at ease!

Doctors, on the other hand, make me nervous. Some of them can be so serious and impersonal! I figured that would be especially true with a radiologist, who doesn’t have all that much patient contact. He walked in and introduced himself with a big smile. I said, “I’ve heard of you! I used to work for [so-and-so]!” (I had been a medical assistant for 15 years prior to becoming disabled). He was just as nice and friendly as everyone else! Then, he got a bit serious for a moment as he told me that he thought this mass needed to be biopsied that day and he had already called my internist who agreed 100%. I told him, “No problem! I’m just glad I don’t have to wait another two weeks!” I was smiling and very upbeat throughout the procedure, an effective way to cover up my fear. I think I felt I needed to remain cheerful for the benefit of those around me and I think they did the same for me!

This was not the fine needle aspiration I’d had a few years ago, but an ultrasound-guided needle core biopsy. I was glad because my previous needle aspiration had come back “indeterminate”, necessitating surgery to remove the lump for biopsy. I figured a needle core biopsy must give them a thicker core of tissue to look at, making it easier to make a diagnosis (and easier to rule out cancer without missing it!).

When the radiologist was done he said my internist should have results by the next day. After he left the room, the technician told me it usually takes two days, so I should not be alarmed if it wasn’t back tomorrow. When I left, everyone seemed even more cheerful than when I had gotten there (my imagination, I’m sure!).

7/14/98 Tue - I waited anxiously until 4 pm and then called my internist’s office. They did not have results yet but they did call the pathologist to see if they were available. When they called me back, they said it had not been read yet and there was no convincing the pathologist to do it that day. But I was thankful she had at least tried without my even asking.

7/15/98 Wed - I received the phone call about mid-morning... the caller-ID told me it was my internist. My heart leapt as I answered and listened intently. “Barbara, I’m glad you had this mammogram!” (...AND...?) “...because the biopsy shows cancer.” (Thud!) I can’t remember the rest of the conversation but she did say something about "grade 2" and "intermediate". These meant nothing to me at the time. She referred me to a surgeon who specializes in breast cancer surgery. I called his office and they got me in the very next day.

I then called my Dad to tell him the news. I hated doing this but he knew I was expecting to hear the results today. It was the worst phone conversation I’d ever had with my Dad. I started out talking about everything else I could think of. Then he asked me if I had gotten the test results. When I told him it was cancer, he became very quiet and his voice got very low and shaky. He suddenly sounded so depressed, you would have thought I’d been given a death sentence! I immediately went into high-gear cheerfulness and tried to reassure him that this sort of thing is very easily cured these days. I told him I’d come through this just fine, that I was strong, and said he’d better smile now. It didn’t work... his voice didn’t change. My heart sank. I got off the phone and bawled hysterically. I was more worried about my Dad than myself, because he’s already got a lot on his mind with my Mom in a nursing home in the final stages of Alzheimer’s. And I have heard that the hardest thing for a parent is to realize a child is sick with something serious like this. They start fearing they will outlive their child. But, I had tried my hardest to cheer him and it hadn't worked...

I called my sister-in-law hysterically, asking her to have my brother call Dad and tell him I’d be okay. He was still asleep (he works nights) but she said she’d give him the message. It was my hope that hearing reassuring words from my brother might work better than hearing them from his only daughter who had already been through so much.

About a half hour later, Dad called back. He sounded much better this time and asked if he could go with me to the surgeon’s appointment. I was so relieved to hear this and knew this visit would help him calm down. My brother never had to call him.

7/16/98 Thursday - I met the surgeon and he was so nice! He reminded me a lot of my Dad, only younger. After my exam, we sat in his office and listened as he educated us about cancer. Then he gave me my options. I could have a lumpectomy followed by radiation, or a mastectomy without the need for radiation. Either one could be followed by chemotherapy, depending on what they find. He recommended the lumpectomy because of the size of my breasts. I told him I’d feel more comfortable with a mastectomy (after having watched my dear grandmother die an agonizing death from metastasised cancer) but if he took one, I’d want the other one taken because I didn’t want to be “unbalanced”. I also wasn’t thrilled about going to radiation therapy 5 days a week for 6 or 7 weeks. He said, “I think taking both would be overkill”. I thought, hey this is MY life we're talking about isn’t it? I had done research on the web and had learned that my type of cancer (invasive ductal carcinoma) starts in a duct and then invades the duct wall to spread into the fat. I was worried that a lumpectomy would leave the original cancer in the duct. I did not know at the time that a lumpectomy is actually a “segmental mastectomy”, in which they remove a wedge-shaped piece of breast as well as lymph nodes in the armpit.

The surgeon explained that this tumor was small (1 or 1.5 cm) and that was very good prognostically. He quoted a 5-year survival rate of 98%. Why can’t they give you a 10-year or 20-year survival rate? By the time we left, it was after hours and nobody was left in the office. He had said this didn’t have to be done tomorrow, but he didn’t want me waiting more than 2 weeks. Tomorrow was Friday and I wanted to get scheduled for the surgery in the following week. He said his secretary would call me tomorrow to set up the surgery. As it turned out, she took the next day off! (ugh!)

7/20/98 Monday - Jeanette called me to schedule the surgery but there were no openings left that week. I had to wait another week - it would be Monday 7/29/98. The next seven days would prove to be the longest week of my life. I made sure all my laundry was done and my apartment was clean for my Dad when he brought me home. And I did more research on the web.

7/27/98 Monday - Finally, the day of surgery to get this thing out! I am terrified of surgery. I had been diagnosed with adrenal insufficiency earlier this year which can be life-threatening if not treated properly, especially in times of stress like surgery. I have also had a morbid fear of being put under general anesthesia since 1985, when I was given the paralyzer too soon and was aware of not being able to breathe or open my eyes or move to let them know. It must have taken 20 seconds for me to finally “pass out” but it felt like 40.

Before the surgery, they gave me 100 mg of IV solu-cortef (steroids) to treat the adrenal insufficiency. I was amazed at how relaxed I was that morning without having received any drugs yet. They even offered, but I had turned them down. Before the surgery, I had to be taken to radiology for a wire localization, since my tumor could not be felt.

The operating room at this hospital was really neat. It had windows and a great view of the majestic Rocky Mountains! I jokingly told my doctor not to let himself get distracted by what was happening outside.

Once I was situated on the operating table the way they wanted me, the anesthesiologist told me he was giving me some Versed. This drug is wonderful. Although you don’t feel very relaxed with it, it does cause some memory loss of the events surrounding the surgery. I had asked him ahead of time to tell me everything he was giving me before doing so. I told him I was determined to get over my fear of being put to sleep. I really hated that feeling of going under... the ears ringing, the taste, the vision spotting up, the loss of control. I think that is a normal reaction because the body knows it’s receiving chemicals it’s not supposed to have normally. When he told me he was ready to give me the induction agent, he warned me I’d feel some pain in the IV arm. That’s all I remember. I never felt the pain and I don't remember going out. That’s the beauty of Versed.

When I woke up in recovery I did not expect the kind of pain I was having! I had had a benign mass removed from a breast and another mass removed from an armpit in the past, but it was nothing like this! The worst part was the nerve pain radiating down my left arm. I thought he had nicked a nerve by mistake. The nurses asked me if I was in pain and I said, “YES!”...... then, remembering they give you a pain cocktail if you answer yes, I quickly added, “but I don’t want anything right now because I’m too nauseated!” I kept taking deep breaths to try and clear the anesthetic (most of it leaves the body through respiration) so I could get rid of the nausea and take something for pain. By the time the nausea was under control and I was able to sit up to elevate my arm and shoulder, I was leaving for my room. The nurses said they couldn't believe I hadn’t taken anything for pain. It was then that I realized this much pain was normal for this procedure. It’s a good thing I have a high pain threshold!

When I got to my room I was ready for a Vicodin, the only pain med that doesn’t upset my stomach and works really well for me. I was disheartened when my nurse told me the only thing she had on order was IV morphine. I have yet to find an injectable pain med that doesn’t nauseate me. I asked her to please find out if I could have some Vicodin, but agreed to try the morphine while I waited. My pain was an 8 on a scale of 1-10 and I had taken about as much as I could handle. I asked her how much was ordered and she told me 2-4 mg. I said, "Okay, let’s start with 1 mg. and see how it goes." I asked her to put it in slowly. She was very nice and was happy to oblige. Something about IV morphine... it works for about 5 minutes on severe pain and then it seems to quit. I asked for another mg. and then asked how long I’d have to wait to take a Vicodin. She said one hour. So I sat up the entire time, keeping my arm raised on a pillow... getting loopy-headed and becoming nauseated, but I could handle it.

When that hour rolled around I gobbled down the Vicodin and within an hour I was feeling much less pain. When the nausea subsided, I got up and took a short walk down the hall with my Dad. I am one to get up and move as quickly as possible. I do not do well under prolonged confinement.

By the next day, the pain was significantly better!! I got dressed walked the halls waiting for Dad to come pick me up. On one of my trips I spotted one of my bosses from 6 years ago. “Dr. Cox!”, I said. “Barb!”, he said as he came over to give me a hug. I said, “Careful!!”, as I gingerly hugged him back. He asked what I was doing there and when I told him he got very serious and puppy-dog-eyed and said many times how sorry he was. I said, "Hey, it’s not a death sentence! I’ll be fine!" He told me I certainly had a good attitude and I began wondering what it was that everyone else seemed to know that I didn’t.

8/4/98 Tuesday - I went to my surgeon’s office for a follow-up.

Oh, I forgot to tell you about... (dramatic music)... "THE DRAIN". When I came out of surgery, I had this funny looking drain hanging out of my breast. It was a tube with a grenade-shaped plastic bulb on the end (they actually call it a grenade!). It has to be emptied every 8 hours or more often if it’s full, the fluid measured, color noted, and then capped after you compress the air out. This provides the suction for allowing more drainage. It had to stay in until the amount was under 30cc in one day, and the worst part was that I couldn’t take a shower while it was in! (UGH!) I spent that week taking sponge baths and making sure I didn’t stink (LOL). I was so thankful when he said it could come out on this 8th day!

The size of my tumor was 1.5 cm which was very good. It made this a Stage I cancer. The nodes were free of cancer and so were the margins of the tumor. This was indeed good news, but for some reason I still had an uneasy feeling. I did not convey this to him but did ask if I would be getting chemotherapy. I was actually hoping I would because I wanted to make sure all cells floating around after surgery would be killed. He said because of my age he thought for sure I’d get it. He also said the pathology showed perineural invasion and lymphatic involvement and that’s another reason to have chemotherapy. I was relieved and said I thought the nodes were clean. He said, "There can still be lymphatic involvement within the breast, and remember I told you that 25% of the time it can bypass the nodes.” I hadn’t remembered that part...

He was ready to let me go and I asked how I would get my chemotherapy. He didn’t realize I hadn’t seen an oncologist yet. His secretary had told me I could meet with the oncologist before or after the surgery. This would later turn out to be a mistake in my opinion. The surgeon called my internist to see if she had a preference for an oncologist, and then told me to make the appointment as soon as possible... this week. As it turned out, I wasn't allowed to start chemotherapy until my incisions were healed, and that meant NO scabs.

Here’s a great tip: Put a good amount of antibiotic ointment on the incisions 30 minutes or so before you take your shower; rub it in with circular motions. Then use a washcloth with antibacterial soap in the shower to gently wipe the incisions (don’t let it hurt!). When done, put more ointment on and rub it in good. You will notice even more comes loose - it feels like granules. If you are “spitting stitches” like I was, I don't recommend trying to pull them out yourself! I don’t know how fast they “absorb” on the inside. If they aren’t absorbed beneath the skin, you could tear something trying to pull them out. Let your doctor do that at your next visit. Also, NEVER use rubbing alcohol on healing incisions! It keeps them from healing as well as they should and increases scarring! I've heard the same may be true for full-strength hydrogen peroxide. I found betadine to work well for antiseptic purposes.

8/14/98 Friday - I met my oncologist for the first time. What a nice guy!! He seemed very knowledgeable and talked fast (just like me), so we exchanged a good amount of information during that visit. I did begin to worry a bit though. He must have said four or five times how he did not like my pathology report. He kept referencing the perineural and lymphatic involvement. He said the perineural involvement meant it could have already spread elsewhere in the breast, or anywhere in the body (HUH?!). And, the lymphatic involvement meant it had potential to spread elsewhere in the body. He quoted the same statistic that 25% of breast cancers with lymphatic involvement and negative nodes can still spread by bypassing the nodes. But he also said he was sure he could kill any cells floating around in my body with the chemotherapy drugs. I learned that the chemo would come before the radiation, so at least I could put off those annoying daily visits for a while. He also wanted me to have a port put in for the chemotherapy because the drugs are very hard on the veins. He suggested I get it as soon as possible to allow healing time before starting treatment.

When he examined me he said he was worried that it may have spread up higher in the breast. He thought he felt a “thickness” that he didn’t feel was due to the surgery. I told him I had felt the same thickness prior to surgery and had thought it was where the tumor was. But apparently it was not. My tumor was not palpable by the surgeon (or myself) and had to be located using a procedure called “wire localization” before surgery.

My oncologist ordered an MRI of the breast because it can see much more detail than a mammogram. He also ordered the usual tests to check for metastasis; bone scan, cat scans of the chest, abdomen, and pelvis, and an MRI of the brain. I was to return after all the test results were back. As I was leaving, I told him I figured perineural and lymphatic involvement were pretty common. He said they were not and my case was an interesting one (oh joy). My tests were scheduled over the next week and a half and my return visit would be in two weeks.

8/17/98 Monday - I had an appointment with one of my surgeon's associates, since he was out of town for the week. She was also very nice and explained the procedure and showed me the actual device that would be implanted. It is a catheter that goes into the subclavian vein (a large vein in the chest) and it has a port attached. This one had a double port which she said is nice if they want to give me something else while the IV is running. She said they can also draw blood from it so I could look forward to not being “stuck” multiple times. The entire thing is implanted, so yes I could take showers! The implantation would be done using local anesthetic and a relaxing agent so I was thrilled about not having to be put to sleep!

Addendum - I just want to say that I didn't feel there was any advantage to having a port as far as being stuck was concerned. My experience was that the skin over the port in my upper chest was more sensitive to the needle pricks than my usual faithful vein was, but it does save the relatively smaller veins from the hardening and darkening caused by the chemo drugs.

8/19/98 Wednesday - The day for the implant. I opted for a local surgical center that was closer to my apartment than any of the hospitals. It was in the building next to my surgeon’s office. The anesthesiologist came to say hi before the procedure and told me what concoctions he wanted to use to relax me. I asked not to receive Versed because I was aware that it removes one’s inhibitions and I had been told in the past I had a pretty “colorful” mouth when I felt pain while on Versed (grin). He told me what other things he had in mind and I asked what they were. He said they were narcotics and I said those nauseate me (just call me worry-wart! LOL). He smiled and said, “How about I don’t tell you what I’m going to give you and just see how it goes?” I agreed with a sheepish grin.

The operating room was freezing but had no windows this time. There were lots of people in there bustling around. When they had me situated the way they wanted me, I felt the relaxing agent taking affect. It felt good... didn’t nauseate me. There were only about three times I felt real pain and I don’t know what she was doing at those times, but they all put me in tears. A couple of times the pain radiated all the way to my back.

And the cautery... ack! I felt an electrical shock going down my arm every time she used it! It was traveling along a nerve that had to be right next to where she was using it. I am a bit afraid of electricity and I told her I was feeling that! When it was all over she came to see me in recovery and told me she was sorry she hurt me and that she had hoped I wouldn’t be so aware of everything. (Translation: “The anesthesiologist didn’t give you enough stuff”)

It took about 11 days after that procedure to finally be able to move that shoulder inward without too much pain. I must have bruised pretty good underneath the port because I had radiating nerve pain from the base of my skull down to my elbow for several days afterward.

8/21/98 Friday - Had my bone scan and cat scans today. Noticed they repeated the pelvis and a portion of the chest.

8/24/98 Monday - Got the MRIs done today. The breast one is very strange. It is done on your stomach and you have to place your breast into a hole in a form that is hard and about 9” high. They put cushions above and below the form for your head and lower body, but they weren’t thick enough. My ribs were pressed against the edge of this hard form for 20 minutes and it wasn’t comfortable at all. I had to put my left arm over my head which was still a little hard after surgery, and the other arm under my pelvis to keep it from falling off the narrow table. My head was turned to one side. It's kind of like playing Twister (LOL). They slid me into the machine this way and I could not move any part of my body for 20 minutes. Do you know how hard it is to breathe and not move your chest?

8/26/98 Wednesday - It was 10:10 pm when my phone rang. The caller ID gave a number but no name. I picked it up and it was my surgeon (at this hour?!). I listened and my heart sank as he told me that the MRI of my breast showed two or three more “spots” that he was sure were more cancer. I blurted out something along the lines of, “Take the breast! I’m not dealing with this anymore!” I think I remember hearing things like “I think these are areas of carcinoma in-situ” (tiny and contained within a duct), “can be biopsied or removed easily”, and something about “I thought the breast contour came out nicely and you were happy with it”. I really don’t remember very clearly at all, but I was more sure than ever that I wanted a mastectomy. He said he wanted to see me in his office within the next two days.

8/27/98 Thursday - The surgeon's receptionist got me in at 11:30 that morning. My appointment with the oncologist was at 2:15 so this worked out well and I would get two opinions on this day. I held off calling Dad until I could make a decision. I couldn’t bear the thought of having to give him this awful news. Finding more cancer after lumpectomy is a possible complication of lumpectomy, but it is rare.

11:30 AM - Dr. Clark showed me the MRI. I could clearly see the areas that were enhancing and they didn’t look that big to me. But neither did the breast. The pictures were small and it was hard for me to determine just how big these spots were. There were actually 4 of them.

We went into his office and during the conversation I asked him why he was so interested in preserving the breast (that was the impression I had gotten). He immediately replied with eyes wide as saucers, “I’m not! I just want to make sure we get it all this time!” I took this opportunity to tell him I wanted the whole thing off and to my surprise I didn’t get an argument. So I pushed it and said, “If we take this one I want the other one off, too.” I explained that I didn’t want to be off balance or have back problems but more important, I did not want to have to go through all this again in the future. Women today have a 1 in 9 chance of developing breast cancer at some point in their lives. Once diagnosed, the risk for a recurrence in the same breast or the other one doubles (1 in 4.5, now). I have several other risk factors that make my risk even higher - not having had a baby before age 30, being overweight, having large breasts, eating a diet high in fat (which I have improved on vastly), and having a family history, although it was an aunt and not a mother or sister. My grandmother had some kind of adenocarcinoma which could have come from the breast or a number of other places, but they never did find the original cancer. My mom is in a nursing home with Alzheimer's and probably hasn’t had her breasts examined or had a mammogram in over 20 years - the aunt was her sister. Additionally, I told him that my MS was reactive to stress and since I’d just gotten out of my wheelchair and off the crutches (because of a wonderful implanted drug pump), I didn’t want to take the chance of relapsing so badly that I ended up where I was a year ago. He was agreeable to the idea!

I was scheduled tentatively for Friday of the following week for a bilateral mastectomy. They told me to call back if I changed my mind. I assured them I wouldn't. They told me not to rush into the decision and I reminded them that this was what I had wanted in the first place.

For the benefit of those reading this, I should mention that I was informed that in 15% (or 25%?) of these cases, the pathology comes back negative. It was also explained that an MRI is extremely sensitive to even the earliest changes in tissues, so even with a negative pathology report there is no way to be certain there weren't some very early changes going on. I wasn't even remotely interested in gambling with these kind of odds.

2:15 PM - While I waited to see the oncologist, I noticed all the test results paper-clipped to my chart. I asked the nurse if I could get a copy of them while I waited. One thing about having cancer - you get copies of everything so you have them for yourself and can supply copies to any other doctors who may want to see them. A feeling of relief came over me as test after test showed no gross metastasis. I saved the breast MRI for last. As I read it, I could not believe what it was saying. There were “several” enhancing masses, the largest of which was 2 cm (that’s larger than the one they took out!). I knew right away that if these were more cancer, they were not carcinoma in-situ. I had learned on my first visit with Dr. Parra that cancer with perineural involvement spreads by moving (undetected) along nerve pathways, starting another tumor somewhere nearby. As I read on, I saw that the “contiguous” tumor was about 4 cm. The contiguous size is the measurement around all tumors combined - I did not know the significance of that yet. One of the masses was right up against the chest wall, but the radiologist reading the MRI could not be certain as to whether it had actually invaded the chest wall. Now I was more glad than ever to have made the decision that I had.

When my oncologist arrived, I learned that the contiguous size of several tumors is considered equivalent to one tumor the same size. If this is true, that would make this is a Stage II cancer based on size alone. I told him of my decision to have a double mastectomy and the reasons behind it. He said we would change my chemotherapy drugs and the treatment would be a little more aggressive. It would be about 3 weeks after the surgery before we could start the chemo.

I’d like to note here that I have been increasingly uncomfortable with how long it has been taking to start the chemo since I had that needle core biopsy. I know that once a tumor is cut into, cancer cells get spread into the blood stream. My surgeon had told me the body’s defense mechanisms can handle most of these cells because it can destroy them on at a time, as individual cells. But, “most” is the operative word here. I don’t want to give even one cell an opportunity to plant itself in one of my vital organs and multiply (remember the Star Trek eposide, "The Trouble With Tribbles"? LOL).

4:45 PM - I stopped at Dad’s to give him the news. This was again the hardest part of all of this. I sat down and he turned off the golf game on television. I started by telling him the good news - the scans showed no gross metastasis. As I continued, I was searching for the right way to word it all so it wouldn’t scare him too much. I just kept talking, with thoughtful pauses, as I tried to sound as optimistic as possible. When I told him that my chances of a local recurrence would be “zero” (surgeon’s words) with the double mastectomy, I detected a hint of a smile. He remembered that this was what I had wanted in the first place. He knew I wouldn't miss them a bit. And I think it helped him feel more secure about my prognosis. As for me, I’m still being cautious. I won’t let my guard down until all treatment has ceased and I see repeatedly clear follow-up exams for.... I’m not sure how long yet.

8/31/98 Monday - Went for the MRI of my right breast. At least their mold had some padding on it (about half an inch), but it was still uncomfortable since the exam took a lot longer than I had anticipated. This technician was more thorough about maneuvering my breast so that as much tissue as possible could be seen. I had both arms over my head this time. Once I was in the machine, I waited impatiently to hear the familiar sounds I had heard the last time. MRI machines have different types of sounds... knocking, clicks, taps, loud buzzing noises of varying lengths, etc. A breast MRI is done using a special imaging technique and with the MRI of the left breast, I had noticed the sounds were different from any I’d heard before. It sounds like a bunch of loud long “boiiinnnggggg”s, one after another. I waited impatiently to hear those sounds now, but all I heard for about 15 minutes were taps and knocking. At this point, I am rolling my eyes and thinking the machine is either broken or the guy operating the machine is new at this (has it become evident that I’m becoming annoyed with this whole thing? LOL)

Finally the sounds I awaited began and in less than 10 minutes he was in the room to administer the contrast into a vein in my hand. About 10 minutes later I was done. It was already an hour and a half later!!!

9/2/98 Wednesday - The day before surgery. I had left a message with questions at my surgeon’s office on Monday, but had not heard from him yet. So I spoke with my oncologist and got the answers I was looking for. I think it's important for anyone going through something like this to get the answers they need and to be persistent in getting them. I have always had a hard time "bothering" my doctors but I'm learning how important getting timely answers to questions really is best for the soul.

9/4/98 Friday - Surgery day.... again. The surgeon never did return my phone call from Monday, but I did get to see him prior to the surgery and I asked the rest of my questions. The surgery was booked for 3 hours but would probably take less. He did not have my right breast MRI results with him and did not know what they were! I thought: Well how in the heck are you going to know whether you need to check nodes on the right if you don’t know those results?! He said he could get them right away and I said "Please do!" It was normal (whew!) and I assured him I still had not changed my mind about removing both breasts. One thing to remember: Always be firm and persistent when it comes to your own healthcare and especially your life!

They took me into the O.R. about half an hour late... he had said there was plenty of time to do this, the day was not full (Good!). I didn’t remember most of it again. When I awoke I felt miserable. I had a strong taste of anesthetic in my mouth and was nauseated yet again (why can’t they do something about that?). The pain, however, was not as bad as the last time (probably because no nodes were taken). I never did take anything for pain during that hospitalization. This time, my biggest problem was the nausea which lingered for four days. I was unable to lie down or even recline in the hospital bed without being hit with major nausea. It felt like my stomach was full of burning acid. Normally, the last thing I want to do when nauseated is walk around but I quickly discovered that I felt better when up and walking. So, I took many trips around the halls that night, dragging my IV pole with me. When I finally dozed off at around 4:30 a.m., my IV fluids ran out and the alarm started beeping..... so much for that sleep! I was so drowsy... it was a major chore trying to keep my eyes open, but allowing them to close increased the nausea. I felt as though I was killing myself with lack of sleep and there was nothing I could do about it.

I was allowed to go home the next day, though still nauseated. When I’d had enough of that I called and got some antinausea suppositories. They worked great and they made me drowsy enough to finally get some badly needed rest.

Even on my first day home I was amazed at how much less pain I had this time considering all the work they did! Apparently, there was no need to take any muscle because all margins were clean. That was great news because it meant no radiation treatments. Something I found interesting... when I asked my surgeon before the surgery whether he would be looking at the regional nodes to determine if any looked abnormal and needed to be removed, he had said it would be impossible to visualize them. I had said something about wanting to make sure I would never need surgery again and he said there was no guarantee.. "This is still cancer. You will still have to be checked for the rest of your life." Now, I distinctly remember him telling me in his office the prior week that removing the other breast would bring my chances of a local recurrence down to “zero”. Now he’s telling me there are no guarantees? (rolling eyes) I wish these doctors would make up their minds!

9/8/98 Tuesday - I saw my surgeon in follow-up today and he was again impressed with how good I looked so soon after surgery. I begged to have the drains removed (I had two this time) and he obliged. (Hurray! Now I can take a shower again!) He said I had some fluid pockets that may need to be aspirated, but we didn’t need to do anything that day. I told him, “as long as I don’t need more surgery!” He chuckled and said I wouldn’t need more surgery.

I then asked him about the very dark (almost black) areas of skin near parts of the incisions. “Are these bruises or is the skin dying?” He said it could be either and it had to be watched. I asked, “Are we talking possible gangrene here?”. He told me not to worry about it... it could be easily taken care of. Months later, I would learn that cigarette smoking greatly increases the chances of skin or tissue death due to decreased skin circulation.

9/15 Tuesday - Got some shocking news at the surgeon’s office today. The pathology report said there was NO more cancer.... in either breast! Both breasts showed the same fibrous changes, so I am wondering just what was enhancing on the left side that wasn't on the right. The surgeon was not bothered by this at all, but did say an MRI could detect very early changes in tissues - changes so early they would not be detected by pathology. I was still very glad I had both breasts removed. I now feel safe that at least I can’t have a recurrence in a breast. However, this news still bothered me quite a bit. I was very worried that the pathologist might have missed something. After all, there was a lot of tissue to examine and I didn’t imagine they made slides of every single piece of tissue. I went home not knowing what to think or how to feel.

9/16 Thursday - Saw my oncologist today in follow-up. I asked him about the pathology report and whether it was possible something was missed. He told me they only made slides of the tissue immediately surrounding the seroma (the pocket of fluid replacing the previously removed lump). They did not examine the rest of the breast microscopically as it would “take too many slides”. He said while it is possible that something was missed, it shouldn’t matter to me now because there is no breast tissue remaining to be a threat. I agreed, but pointed out that any tumor missed could change my staging and therefore my treatment and outcome. I also asked what steps would be taken to find out whether there might be a metastasis in the future and how he would know whether the chemo was working. It turns out my CEA (carcino-embryonic antigen, a tumor marker) was normal when it was taken 2-1/2 weeks after the original lumpectomy, so that test would not help us (it can drop that fast or it could have never been elevated, making it a useless test). He said I would just be followed closely with clinical examinations for the rest of my life.

As for the chemotherapy, we will stick with the original plan of CMF-T (Cytoxan-Methotrexate-5FU and Tamoxifen). He did not like the appearance of my incisions with all the necrotic skin. One side was firm and he said that was the way he wanted the other side to look, which was still soft and squishy.

I did get some good news on this day! My cancer was strongly ER-positive, which meant it would respond to hormone therapy as well and it has a more favorable outcome.

9/22/98 Tuesday - Saw my surgeon in follow-up. He was again very pleased with the rate at which I was healing. His assistant surgeon cut away some of the hardened dead skin and I never felt a thing. They drained more fluid so things could begin to adhere inside. I got the okay to start chemo the following Monday.

9/27/98 Monday - This was the day I was to start chemo but it will be put off for at least a week now. I have been terribly sick for the last week with the worst virus I've ever had. It started with a headache and slight sore throat a week ago. The next day there were body aches and a slight fever. By the third day it felt like lingual tonsillitis with a painful earache, and by that same night I was having difficulty swallowing. I ended up in the Emergency Room where they passed an endoscope into my throat to check for swelling. By Thursday I was unable to swallow solid foods and it was feeling more like a muscular problem. Foods and liquids I tried to swallow were going half upward (behind my nose) and half downward, like the muscles weren’t coordinating their efforts. On Friday I saw my internist again because of severe neuralgic pain involving the left side of my head, face, throat, and ear, and increased fever in spite of antibiotics. I also noticed I was having problems with my soft palate when I was speaking to her. This was new. I was unable to close it completely, making my speech sound somewhat like that of someone who has a cleft palate. By Saturday I was in the Emergency Room again, this time getting fluids and stress dose steroids. The soft palate muscles were even weaker and I could not swallow water because it kept splashing up into the back of my nose and then dripping down and choking me. By Sunday my vocal chords became involved and deep breaths became raspy and noisy. I decided to stay at my Dad’s that night because I was worried about swelling or worsening of that symptom which might cause difficulty breathing. On Monday the swallowing was improved a bit but everything else was not. It was unanimous that I would not start chemo until I was feeling much better.

9/29/98 Tuesday - Saw my surgeon in follow-up. I was able to peel away most of the dried black skin the night before and they removed the last remaining piece today. I again discussed the pathology report with my surgeon. I told him it mattered to me because a change in the staging would change my treatment and outcome and I wanted to have it looked at again. He said this was not an exact science (it’s not??) and described how the tissue that’s not looked at on slides is examined with gloved hands for abnormalities. Sounds kind of primitive, doesn’t it? I find it interesting that it is accepted that a pathologist using gloved hands can determine the difference between "fibrous tissue" and cancer (sigh). Another thing he said that was disturbing was the fact that when doing a sentinel lymph node procedure they sometimes find a lymph node so small, it would most certainly have been missed on manual examination of the tissues. But then he added that there really wasn’t any difference in outcome between CMF and CAF (more aggressive) therapy, so I finally settled for no second opinion on the pathology. I hope I did the right thing.

10/5/98 Monday - Saw oncologist to determine if I was ready to start chemo. I was not. The virus was now in my lungs and I had bronchitis with a bad hacking cough.

10/12/98 Monday - Saw oncologist again. This time I requested blood work to determine that I was truly on the mend. He ordered the labs. My white count was at 13,700 (normal is 5,000-10,000)... he said it's too high, come back in a week to recheck it.

10/19/98 Monday - Returned to oncologist's office in follow-up. My white count was now 18,500, but he felt I could start chemo the following week. I asked if it was too high to begin chemo last week, why was it not too high now? He said this elevation in white count meant my body was putting out a final battle to get rid of the virus and I should be fine by the next week.

10/27/98 Tuesday - This was the day I had been dreading. The entire time I was sick with the virus, I was feeling so miserable that I became even more terrified of chemotherapy. I had felt so bad for so long, I just couldn't bring myself to accept more suffering. But as this day finally rolled around I found myself more relaxed than I had been for the last 5 weeks. My Dad brought me and sat with me this time because I didn't know what to expect. It was very comforting to have him there.

The treatment went surprisingly well! Much better than I had anticipated! They started an IV in my port and gave me a hefty dose of two anti-nausea drugs (32 mg of Zofran and 20 mg of decadron) over the first 30 minutes. Next, they gave me a bag of fluids with the Cytoxan in it and that ran over the next 60 minutes. During the last half hour they injected the Methotrexate and then the 5-FU into the IV line. I was amazed that I not only didn't "feel" it, but I also didn't taste the metallic taste I had been told about. In fact, the only effects I had were from the anti-nausea drugs. The dexamethazone first made me feel hyper, then the Zofran made me quite drowsy. I think I could have fallen asleep if my Dad hadn't been there talking to me. I was still drowsy when we left. Keep in mind that 32 mg of Zofran is a pretty significant dose... they only gave me 8 mg during a previous surgery.

That night about 4 hours later, I started feeling the side-effects of the chemotherapy. I had a bad headache (which is actually caused by the Zofran), muscle aches all over, and the nausea began. I was not allowed to take anything for the nausea until the next day because what I got in the IV was supposed to be enough for 24 hours.

The second day was the hardest. My headache, body aches, and nausea (which was worse by now) continued all day long. Unfortunately, the BDR (benadryl-decadron-Reglan) suppositories only helped the nausea for one hour, but they did work well on the headache! And, the Anzemet tablets I was given (for nausea) were supposed to last 24 hours so I could only have one all day. It only lasted 8 to 10 hours and there was nothing else I could do but sip tea or clear soda to try to combat the nausea. It was that night that I began having serious doubts as to whether I could do this five more times.

10/29/98 Thursday - On this third day, I woke up feeling much better! I was quite fuzzy-headed but the nausea and pains were almost gone. This was my birthday and my Dad had wanted to take me out to dinner. I eventually decided I felt well enough to do that and we had a wonderful time!

It took me about a week to recover completely from that first treatment. The fact that I was having stomach problems unrelated to the chemo didn't help! Another side-effect you can get from some of the drugs is constipation (or you can have diarrhea... I was unlucky enough to have more trouble with the former). I had a number of side-effect management instruction sheets but nothing was working very well, so I just had to deal with it. I was also still coughing from residual bronchitis.

11/2/98 - This second week I felt great for the first time in two months!! I was now confident that I could get through the treatments. I was at the oncologist's office today for my weekly blood count. My white count (which started high at 12,300) was down to 9,300 - still in great shape.

11/9/98 Monday - My second weekly blood count check. This time I was only down to 8,200. They told me if it didn't drop enough to require a Neupogen (filgrastim) injection after my second chemo treatment, they would have to increase the dose of the drugs. Neupagen is an injection used to stimulate the bone marrow to replace the white blood cells known as neutrophils that are killed by the chemotherapy. If the chemo doesn't suppress your bone marrow, it may not be killing cancer cells. Thus, the reason for increasing the dose if necessary.

One of the girls in the lab had recently told me the Neupogen injections make you feel worse than anything else they give you. I had only heard of bone pain which can be controlled with Tylenol (Tylenol is supposed to be especially good on bone pain and is even prescribed for patients with early bone metastasis). I guess I will find out soon enough how it will affect me.

11/17/98 Tuesday - My second chemo treatment. They check your blood counts again before the therapy. My white count was almost back to where it started... it had climbed by 3,000 in the past week! My oncologist told his nurse to watch my blood counts closely over the next 14 days. If they didn't drop significantly, she was to increase the three intravenous chemotherapy drugs by 10% the next time.

Again, I didn't taste any metal, but the apple juice I was drinking started tasting bitter. I think that's from the steroids more than anything. My vision is blurred but that is definitely from the steroids and should be better by tomorrow. My account of my first treatment wasn't written until several days afterward. Today, I am paying attention to what side-effects hit me and when, for the benefit of anyone wanting to know in advance. Keep in mind though that everyone is very different! The headache started about 3 hours after the end of the treatment and I took two extra-strength Tylenol this time. The body aches started in another half hour but so far are not as bad as the last time (probably because of the Tylenol!). The nausea has hit me a few times even since the ride home, but it leaves about as quickly as it comes and it's not very bad at all.

11/23/98 Monday - Went for my weekly blood count and my white count was higher than it was last week before the chemo... bummer. We will see what it does next week. I am more tired this time and my muscles are somewhat weak, but that may be due to the multiple sclerosis and the physical stress of the chemo. Otherwise, I still think I can do this! I am a bit afraid of the next treatment if they do have to increase the dose, as each time it seems to get a little bit harder, but I will take one day at a time.

The thinning of the hair has started and for some reason this thrills me! Actually, the thinning started about a month after they took me off my replacement hormone therapy (estrogen). I began losing more than the usual amount of hair in the shower and that's been going on for more than two months already. But, beginning last week (about 3-4 weeks after chemo), I began losing 2-3 times as much hair as I had been. It is interesting to watch it slide slowly down the bathtub to the drain... and look at the web of hair on your hands after applying cream rinse. I don't mean to make light of this for those of you who might find this one of the hardest side-effects to deal with. It's just that I was told not to get a perm or color prior to or during chemo and since the chemo was delayed for 6 weeks, I was REALLY overdue for a perm/color by then. I have had my hair cut shorter and shorter, it has gotten grayer, and I can't do a thing with it so I won't miss it if it falls out! I understand it is common for it to grow back thicker, curly, and less gray. :-)

12/4/98 Friday - On Monday, my white count was down considerably from the previous week and I thought that was a good sign. It was 5,300. But, I guess it still wasn't low enough and they are still going to increase my chemo dose next week. They had me return today to make sure it wasn't still falling. It was down just a tad more, to 5200, but no shots yet. I'm concerned about getting chemo next Tuesday with a starting white count this low, but I have 4 days to increase my numbers. If it's not a lot higher by Tuesday, they may have me return on Wednesday, Thursday, and Friday for Neupogen injections. I didn't know it took more than one!

12/10/98 Thursday - In spite of the increased chemo doses, the side-effects aren't as bad this time. I am learning a lot about dealing with them and I will share some here. If you have problems with constipation, try eating a LARGE salad every day. I eat one to two salads in a large serving bowl per day. If you need something even stronger than salads, I've found that shredded mini-wheat cereal works wonders!! I have one or two bowls a day. And I drink more than 3 quarts of water a day on the first 3 days (that is an order from the doctor to avoid hemorrhagic cystitis, a possible complication of one of the drugs). Something else I never would have expected... chocolate seems to help a lot with muscle aches, fatigue, and even nausea. I take extra-strength Tylenol every four hours when needed and the chocolate seems to enhance its affects. At the same time, I found it eased any nausea I might have. It also lifts the spirits! A word of caution though - chocolate may aggrevate constipation.

I am very pleased that this treatment went so well. They want me to return on Monday for a blood check, this being my third treatment and at a higher dose. I did not need any neupogen this week because my white count had climbed to over 8,000 again. But, I think they expect me to need them next week. We will see... I seem to have a very healthy bone marrow!

12/12/98 Saturday - For some reason, yesterday was a rough day and today is starting out the same. I have more muscle pain (mostly in my legs), fatigue, mental clouding, taste and smell distortions, and nausea than I had the first three days. I thought the drugs were supposed to be out of my system by now. Maybe this is a chemo hangover or something - haha! I will try not to get discouraged though because I was told each treatment could be different as far as side-effects go. If you are going through this, HANG IN THERE!! I will if you do!

The muscle spasms in my legs are becoming unbearable. The right outside thigh muscle is by far the worst. Each chemo treatment makes it worse and my doctor has no explanation for this. I can't wait to get my baclofen dose increased next week. I wonder how many others with multiple sclerosis have gone through this chemo stuff and how they came out of it. My oncologist had told me that chemotherapy is very stressful on the body and I know that stress can exacerbate MS. I pray I come out of this as good as I went into it.

12/23/98 Wednesday - I got my baclofen increased yesterday and today saw a neurologist who injected my right thigh in three places with Bo-tox (botulinum toxin). It should weaken the muscle enough to ease the spasms.

My white count had still not dropped below normal on Monday... they said he may increase my dose again next time.

12/29/98 Tuesday - Well, the baclofen didn't make much difference, but the bo-tox injections seem to be helping the right thigh spasms! This is encouraging!

I went for chemo today.... he increased my dose by a little less than 15%... my second increase. They said he wants to "challenge" my bone marrow. This is good because I feel it gives me a better chance for a cure. I am beginning to wonder if I should have chosen the more aggressive treatment for the shorter period of time but that Adriamycin scares me because it can cause permanent heart damage, though "rare". It's just that the women on both sides of the family have lived into their 90's. That means, if I follow the same trend, I have more than half my life left... 50 years... that's a long time. I don't want to risk a recurrence (I read in Reader's Digest that there is still some breast tissue remaining even after a mastectomy) or metastasis years down the road.

This time, I felt some affects when they injected the methotrexate... my taste became distorted for a bit, I experienced nausea, and I had a burning-like sensation in the stomach area. It went away shortly after she finished injecting it. She said some people don't like methotrexate because they can "taste it" or "feel it". That was the first time I noticed it. This was my fourth treatment. I'm 2/3 done!

By the way, the side-effects from the previous treatment were worst on the 4th, 5th, and 6th days which I can't explain because the drugs are supposed to be out of your system by then. I had more pain, more nausea, and more fuzziness in my head on those days. I also had some more cumulative side-effects - I tasted the metal for about the first time with that one and have continued to taste it intermittently every day. It's not unbearable for me yet... I just pop some sugar-free peppermint gum in my mouth and it helps.

TIP: A friend whose sister went through this said to be careful about the gum I choose because I won't want it ever again after chemo is done. She also said that "everything" you touch while on chemo will develop a "smell" that apparently only you will notice. She ended up throwing out her purse, a teddy bear, and some clothes because of it. You might want to keep this in mind if you have favorites you don't want to give up.

Addendum: Just a quick note to let you know that as of the writing of this addendum, I am eleven months post-chemo and I still like my peppermint gum and never had to throw out any clothes as a result of residual smells.

1/2/99 Saturday - This week has been a bit rough. As before, the side-effects became a little worse each day. And, they started out a bit worse. I think the hardest part is the mental clouding I get by the second or third day, the irritibility, the fatigue, the muscle pain... At times I feel somewhat detached from reality which is scary but today, at this moment, all these symptoms are much better than they were yesterday. If you are going through this, you may find that you go through lots of tearful times as I have. It's okay to cry. It's a stress reliever. :) Last night I had serious doubts again as to whether I could finish this chemo stuff, but today I feel better about it. I can't wait to see how my white count changes next week. I don't think I could handle another increase in chemo drugs.

1/12/99 Tuesday - I MADE IT!! In spite of a really miserable cold that began two days ago, my white count finally dropped below normal!! 3,300 <beam!> It's only a little low, but it's enough to guarantee he won't increase my doses anymore. I even went so far as to ask if he might be able to lower it the next time (LOL), but they said Noooooo! Oh well, I had to try. :-)

I got my first Neupogen injection today too. I have to get another one tomorrow and a third one on Thursday with another blood count at that time. I have been experiencing aching tonight, though I would not call it "bone pain"... it's more like the muscle aches of the flu or a fever. Tylenol works pretty good and a hot bath really helps too. I am still not looking forward to the next treatment (next week) and especially the one after that, but I am going to do my best to stay strong.

TIP: I would like to recommend to anyone out there who is facing chemotherapy for the first time to make sure they have a support network set up in advance. It sure would have made a big difference for me. I chose not to participate in any local support groups (the hospital had called and offered after my first surgery), and now I'm wondering if that was a mistake. Just like the MS support groups, I don't care to sit around and listen to talk about nothing but what is making us sick. It's a bit depressing and I am the kind of person who prefers to accept something and then move on. However, it sure would be nice if I had several people I could call and talk to when I'm having a hard time with side-effects... someone who understands what I'm going through. I do have a couple of very good friends, one of whom I have called a couple of times (long-distance), but I hate to overtax my dependence on her for support. My mom is in a nursing home and my dad is the kind of man who simply doesn't know what to do when faced with a bawling woman (LOL). My brothers are both in another state and are worse than my Dad. They don't understand emotions and they have never been the sentimental "huggy" type. So, make sure you have some good sources of support before starting chemotherapy.

2/3/99 Wednesday - I had my fifth chemotherapy cycle on January 19 and it went better than I had expected! I think it's because he didn't have to raise my dose again. It seems like the body adjusts to it after a while. I am losing less hair now too.

This one was much easier than the previous two and now I know I can do this! My white count dropped faster this time. It was down to 4,000 yesterday and they want to check it again on Friday, in case they need to give me an injection before my next (and last!!) cycle on Tuesday. I'm almost there!!!

2/11/99 Thursday - Well, I've done it!! I had my LAST chemotherapy treatment on Tuesday! Yippie!!! I am still fuzzy-headed at this point and am experiencing occasional nausea, etc, but it's a thrill just to know I've made it and there will be no more! My white count was the same last Friday and had climbed to 8,000 by Tuesday, so I didn't need any injections this time (as I had suspected). I am positive I will drop enough to need one or two injections before these next two weeks pass, but that's okay.

I will now see my oncologist monthly for a while (I don't know how long), and then the visits will become farther apart. I am trying to be as positive as possible but I don't think I'll let my guard down for a year or two. Although I'm a pretty upbeat and positive type of person in most situations, I sometimes find it better to remain cautious on certain things so anymore disappointments won't be so shocking. Does that make sense?

2/20/99 Saturday - I think I am nearing my final entry (unless there's a recurrence down the line, heaven forbid, LOL). I had a really rough time with that last one. The 3rd, 4th, and 5th days were the worst of any day I'd had throughout this whole thing. I felt so toxic.

My white count this past Tuesday, one week post-treatment, was actually a bit higher than before the treatment. This was the first time that had happened but I found out why that night. I woke up at 2:30am with the stomach flu and a fever of 102. I was pretty sick. Vomiting aside, everything hurt terribly and I couldn't stop shaking. Something I've noticed about chemo... your white counts may or may not drop below normal, but you do pick up more viruses than you normally would. I used to only get something (like a cold) every four years, but I got three viral illnesses during the 5 months on chemotherapy.

Here's another tip: Whenever you go someplace in public, especially the grocery store, wash your hands frequently! The hands are most likely to pick up germs and spread illnesses to you! Just think about how many people handle those grocery carts evey day and then you put your hands on the same handle! I washed my hands as soon as I got home and then again after putting the groceries away.

As the side-effects diminish for the last time, I find I am finally able to look to the future with a much more positive attitude. I am attemtping to quit smoking (smoking is not linked to breast cancer), trying to continue losing weight, and am going to attempt to get into shape. The multiple sclerosis and my type of muscle fatigue make exercise almost impossible, but what little I can do will help.

I am experiencing a strange new inner peace... my muscles feel more relaxed than they've been in a while (without any adjustments in the baclofen pump), my heart rate is about 30% slower than it was last year, I am finally sleeping through the night for the first time in over a year, and many other little things. It feels great!!!!! :-)

3/4/99 Thursday - I thought I would add one last note and then take a break for a while. Thank you for reading this far. I may add short notes in the future about my check-ups, etc. Last week, to my surprise, my white count had again dropped below normal so I got two more Neupogen injections. I am not sure but I think I was actually hurting more than the last time by the afternoon of the second day. But the worst was over in about 5 hours. It's really a small price to pay for the benefit of having enough white cells to keep you healthy.

3/22/99 Monday - Well, the oncologist wanted me to keep my port in for six months, "just in case". I talked him into letting me get it out now. It was removed last Friday and I finally feel free of all connections! I am now a SURVIVOR!! :D

4/13/98 Tuesday - Okay, I had said I wouldn't miss them, and I don't! I do not have the feelings that many women have about not feeling like a "complete woman" because I have no breasts. However, there are outfits that just need something there, you know? I have already shelled out hundreds of dollars for two pairs of prostheses and I find them to be a royal pain in the arse. Aside from being too small for my frame (they really should train these "trained" people better), they move closer together the longer I have them on (even in a pocket bra) to the point that they are touching by the time I take them off. That's worse than having none! LOL. So, I decided to look into my options for reconstruction.

I had read a lot about the Tram Flap procedure, also known as "tummy tuck breast reconstruction", and thought that was my best option. They take muscle and fat from the abdomen and move it to the breast area to create new breasts, resulting in a flattter tummy and breasts created with autologous (your own) tissue. Unfortunately, my plastic surgeon did not recommend (and would not perform) this surgery for me. For just one side, it's at least a 9-hour procedure and she didn't like my surgical risk factors for such a long procedure. I have cardiac arrhythmias (successfully controlled with medication right now) and I'm a smoker - both are potential fatal risk factors for surgery over 4 hours long and the smoking is almost a guarantee that the transplanted flaps would not survive due to decreased circulation.

That leaves me with two options - saline-filled breast implants and silicone gel-filled breast implants. She sent me home with the latest report on the safety of silicone gel-filled implants, which explained how further studies by the FDA and numerous medical experts had failed to find any correlation between silicone and the reports that it caused all kinds of auto-immune disorders. The fact is, people with silicone gel-filled implants have the same incidence of these diseases as the general population of people with no implants. In fact, silicone is in some of the food we eat, hairsprays, and other implanted medical devices (such as artificial joints and drug pumps), and all of us have some level of silicone in our bodies. It was concluded that these cases were merely coincidental and would have occurred with or without the implants. Because of this finding, the silicone gel-filled implants have been released for use in mastectomy patients and a very small number of otherwise qualifying patients. I believe they would be available for everyone if not for the world-wide scare about silicone.

As I spoke with the plastic surgeon, I had a chance to look at both types of implants. The silicone gel-filled implant felt so much more real than the saline-filled implant and there wasn't even any comparison to my prostheses. I had pretty much decided by then that I would want the silicone gel-filled implants, but I went home and read all the literature given to me and came up with 15 more questions (LOL). So I went back the next day to ask them and discuss the procedure a little more.

There are four steps to reconstruction with implants. First they have to implant a tissue expander, since the removal of a breast leaves little or no extra skin. That takes about an hour and a half to two hours per breast. The tissue expanders are injected with more saline about once a week until the desired size is reached. Then you have more surgery to remove the tissue expanders and put in the implants. This second procedure takes a little longer because the surgeon is more fussy about getting them as symmetrical as possible. Both procedures will require one night in the hospital for the purposes of administering IV antibiotics. The third step is to rebuild the areola, which is done using a circular skin graft which turns dark as it heals (I believe this is because it is grafted over existing skin but I'm not sure), and create a nipple. The fourth and final step is to tatoo the new areola and nipple with further color.

My surgeon is most emphatic about not smoking for one week prior and two weeks after the first two surgeries. Smoking delays healing and reduces blood flow and can result in possible tissue necrosis and/or loss of the implant. I am commited to doing this when I am ready.

9/15/99 Wednesday - Well, it's been a while since I've added to this journal and since it's 3:50 AM and I'm not sleeping, I figured this was as good a time as any. :)

My first surgery has been scheduled for over two months. I'm going in on 9/24/99 to have the tissue expanders placed. I am terrified. I did not realize I'd still be this scared of the anesthesia but I am. I have never been so unsure about surgery in my life, but I know if this could be done under local I'd do it in a heartbeat. So, I know it's the general anesthesia that I'm dreading. Somehow I know I'll get through this but it may take more pre-op sedation to get me there. LOL. Even though I'm laughing, I am truly petrified to the point that it's already starting to keep me up nights and I still have 9 days to go!

I learned a few more things about this surgery and tissue expanders. I had thought I was told that I'd have to wear a bra for the rest of my life, but according to my surgeon's nurse that's absolutely not true after the first five weeks. I also found out last week that I will be allowed to take showers after the 3rd day (even with two drains in)!! YAY!! :) The only "bad news" I got was that the tissue expanders are just that - tissue expanders - they will expand in the direction of least resistance which means I may end up having to get very creative to hide any differences, which will become even more noticeable as they are filled more. This news is dissappointing to me. It means that I may not be able to put off the second surgery as long as I would have liked. I don't think I'd enjoy going around with one breast 4 inches higher than the other <grin>. I will write more after the surgery on the 24th.

Oh! I almost forgot to tell you!! I FINALLY QUIT SMOKING FOR GOOD ON 7/18/99!!!! YEEEEEEEEEE-HAAAAAAW!!!! :D

10/2/99 Saturday - Well, I'll tell you... it's a good thing I have a high pain tolerance because I sure didn't expect the kind of pain I had for the first 3 days after surgery. It literally felt as though my chest had been cracked open. My sternum was the most painful part on the first day. It hurt dreadfully to cough, move, even breathe. I was too nauseated from the anesthesia to take pain meds even though I was hooked up to a patient-controlled morphine pump. When I'd finally had enough of the pain I broke down and started taking half of a Vicodin. That didn't touch the pain for more than two hours. By late that night I was ready for a whole one. Even the whole ones didn't last longer than 3 hours. Getting into and out of bed was a major undertaking. I couldn't use my arms, I couldn't use my chest muscles, and my legs are weak due to MS. I didn't get a wink of sleep that first night. I never sleep in a hospital and the nurses were coming in every two hours to check vitals and drain drains. By the next morning I was in tears most of the time from pure lack of sleep. I think they expected me to stay another day because of the pain but I told them I would not get sleep unless I went home, so I opted to go home.

It has now been a week and I am doing much better! Most of the soreness is gone completely. Any pain I do have is controlled with Tylenol. I am ready to begin with the expansions, but I have to wait another week. My drains are still in and are a royal pain, as usual. I am going back to the office on Monday to see if they're ready to be pulled.

10/4/99 Monday - I had a disappointing day. I went back to my surgeon's office for a follow-up visit to see if my drains could come out. I already knew they weren't ready to come out because they were still draining too much fluid. But I got a lecture about doing "too much". I told her I lead a very sedentary lifestyle, spending most of the day in front of the computer, and I asked if it could be because I drink so much water. She said no, it was directly related to activity. She said if all I do is sit at my computer, then I have to go to bed all day long. Good grief! It's not like I'm not bored enough already! She said even though I'm feeling good because the pain is gone, "you still had major, major surgery! You have to rest." I was like... how can I survive lying in bed all day long staring at the ceiling? This would be a good time to have a roommate for sure!

She also told me of a patient who was like me. She had her drains for two months. But, when she got her permanent implants she did even more (because that procedure is a lot less painful). She ultimately ended up with an infection and lost one of her implants. They could not go back and put another one in for at least 3 months, so she ended up without one "breast" as a result of her stubborn independence.

When I got home, I realized just how much I'd been doing. I've been cooking for myself, loading and emptying the dishwasher, going grocery shopping, driving myself places, and taking out my own trash!! So, now that I know it's this activity (the use of those chest muscles) that's keeping the drainage too high, I will cut back on it. I'm considering going to stay with my Dad for a while just so I will have company. LOL

I'm signing off now because typing this addition was probably my day's limit for activity. :-(

10/18/99 Monday - I finally got one drain out today!! The other one has to stay in because the drainage is still too high. I also had my first expansion today! They injected 60 milliliters of saline into each tissue expander. It wasn't bad at all. They use a little tiny magnet on a pivot, much like a stud finder, to locate the injection port in each expander. They make marks on your skin to indicate the ports' positions and then inject the saline using large syringes with very small needles. The initial results are slow to be seen because the mastectomy leaves a hollow in the chest. The implants have to fill that hollow before they can expand outward enough to be noticeable under clothing.

10/26/99 Tuesday - The second drain came out today!! Boy, am I happy!! Now it will be expansions once a week for weeks to come until I reach a proportionate size. I began a physician-supervised fast on 10/22 so I could lose this extra weight as fast as possible. My goal is to lose as much as I can before the next surgery so my doctor can determine the best size for the implants. I have 80 pounds in all to lose.

12/7/99 Tuesday - I have received a total of 720 ml. in each tissue expander over the last 8 weeks and my surgeon and I agree it's enough. 720 ml. is approximately 3 cups - that's on each side. Sounds like a LOT doesn't it? I have lost 25 pounds in my first 6 weeks on the supervised fast, so I'm well on my way! My next surgery is already scheduled for 3/31/00 and I will probably lose another 30 to 40 pounds by then!

1/6/00 Thursday - Just a quick note to say that one expander has decided to settle higher than the other and it's become more obvious. I have found a solution to this problem - I use small shoulder pads in my bra. I put one on the bottom edge of the higher-sitting expander and one on the upper edge of the lower-sitting expander. The bra holds them in place and they now appear to sit evenly under clothing.

TIP: I found the perfect bra for expanders (and will continue to wear them with the implants!). Most bras wouldn't fit properly because of the shape of the tissue expanders. They tend to be more spread out and flat so they don't fill a C-cup or even a B-cup, and that makes the bra pucker and wrinkle in the center of the cup(s). The bra I found is made of stretch lace and has soft padded underwires. The cups have no real shape of their own - they stretch to fit the shape you put into them. I found the bra at Dillard's and it is called Cabernet style 03712. It is the the store's own copy of a much more expensive brand name that I can't remember right now. You will find even the larger cup sizes will fit and provide more coverage. They will hold (and even hide) the shoulder pads in place all day long and the bra is very flattering and feminine.

I continue to lose weight and am working on increasing my exercise level. I have lost a total of 36 pounds so far in the first ten weeks of my protein fast!

4/4/00 Tuesday - Well, today has been a pretty disappointing day. My surgery was last Friday, 3/31/00, and it didn't go as well as the previous one. I was about as nauseated as a person can get for the first 10 hours post-op, except for one hour when it completely vanished for a reason I can't explain. I was hanging over a basin and holding a washcloth to my face the rest of the time. It sucked so bad and I decided then that I'd never ever have another surgical procedure that required general anesthesia as long as I lived - even if it meant I'd die.

Today, I had my first post-op visit at the surgeon's office. I have one "breast" that's larger than the other because it's got a collection of fluid around it - that drain didn't drain one drop for the first 24 hours after surgery. I'm wondering now why the nurses didn't let the doctor know about that while something could have been done before it caused the next problem. The second problem is that as a result of this fluid build-up, it weakened and spread the bottom edge of the pocket made for the implant. On thinking back, I felt this happening and wish I had put two and two together. It stings and burns kind of bad, just like the burning sting you have after you burn yourself on the stove. That kind of burning is also a symptom of stitches ripping through flesh slowly. I guess I just didn't think it could possibly be that because I knew I wasn't raising my arms higher than my shoulders. So, that "breast" is not only larger, but noticeably lower than the other one.

The nurse told me today that we will keep an eye on it and if it doesn't drain on its own, I will have an ultrasound-guided needle aspiration of the fluid collection. Of course, it's too late to fix the fact that it's sitting lower (I think).

The last problem I had was that a large wrinkle appeared in the other implant and it was very obvious through the skin. Unfortunately, it is at the top of the implant, where it would show if I wanted to wear a tube top.

Solutions: They took a long piece of tape and wrapped it around the bottom of the low implant to help hold it higher and in the hopes that it would help the weakened bottom edge of the pocket to adhere to itself and heal that way.

Then I went straight home and put my surgical bra back on. I didn't know it would make any difference - they said to wear a bra that gave good support. But since I put on the surgical bra, the wrinkle has disappeared. I also learned that to fix wrinkles that don't go away, they cut out a section surrounding the incision so they can pull the pocket tighter and stitch it back up. So, I figure if I give it a little time for the capsule (scar pocket) to contract (a little), it will keep the wrinkle away. ;-) The surgical bra has also reduced the swelling in the left one quite noticeably!

4/11/00 Tuesday - I had another follow-up visit today and saw the doctor this time. She appeared to be surprised at the asymmetry of the two sides and asked if I had been massaging them (I do that every 3 hours because my computer reminds me to). I got the right drain out today and she wanted to take the left one too, but I begged her to leave it in a little longer since it was still draining more than the other one and because it hadn't drained the first 24 hours and because it was still larger. She finally agreed. (whew)

4/13/00 Thursday - Today I was getting more and more upset about the asymmetry and found myself wondering how I would learn to deal with it for the next 10 or 20 years (that's about how long it is before they recommend you replace them). I didn't think I'd be able to live with it and was beginning to contemplate having her just take them out because I didn't want to risk needing more and more surgery to get them right. But instead, I stood in front of the bathroom mirror and pushed and pulled and rubbed and tugged until I was sore but I actually got the right one to drop very close to the same level as the left! I don't recommend anyone doing this on their own - I happen to be very familiar with my body and I recognize the symptoms of going too far (the burning of ripping out stitches, etc). I decided it was worth taking the chance before going to the extreme of having her remove them forever. I just feel I've been through way too much to come this far and be unhappy. When I was done, they were looking MUCH more even and I was thrilled! I hope I don't get yelled at tomorrow when I go in to get the other drain removed. LOL

4/14/00 Friday - I saw the nurse today to get the left drain removed and I told her what I had done (beaming with pride, of course LOL). To my surprise, I didn't get yelled at. Maybe it's because she had recently had implants put in to enhance her own breasts and she said she kind of had to do the same thing. So, I am reasonbly even now (one's still a bit larger but it's hard to tell under clothing) and I think I will be very pleased with what I have now. I am somewhat of a perfectionist, so I'm hoping that doesn't change my mind later. LOL

P.S. For those of you wondering, I lost a total of 45 pounds on the protein fast until I ended it for the surgery. I have maintained my weight within 3 pounds so far (by eating low-carb) and am planning on going back on it to lose 10 or 20 more pounds. I also went shopping for a bathing suit and found one that's very flattering!! This summer will be the first time I'll be seen in public in a bathing suit in over 4 years!! :-)

9/25/00 Monday - Wow! I can't believe it's been over 5 months since I last typed an entry! I had a great summer! I spent almost 2 months with a very good friend out of state and it did wonders for me. I went in the swimming pool a lot and played with my friend's grandchildren. I learned a new craft (an expensive one...yikes!) and learned new recipes from her full-blooded Italian mom! It was just wonderful therapy!

However, I'm afraid I got very lax about massaging the implants while on vacation. At home I have the computer to remind me every two hours but I wasn't on the computer much there so I had no reminders. I know the recommendation is only 3-5 times daily, but I like to do it more often because I'm prone to capsular contractures, so I figure I can't do it too much. But, while I was away I neglected them and they got pretty hard. So, now I'm working to soften them again, though I don't know how much it can be reversed now. It doesn't matter much to me anyway, but for those of you who have a husband/boyfriend/significant other, it's a good case in point for making sure you continue to massage them according to your doctor's instructions. I even sometimes lie on the floor on my stomach to give them a really good compression. Sometimes it helps; others it doesn't. I have days when they are very hard and other days when they are nice and soft and it doesn't seem remotely related to how much manipulation they had that day. (Any ideas on that one, anyone?).

I recently gave my friends a good laugh. I was bored one day and was wondering whether I really would be interested in having the nipples done or not. So, I got out my art markers and started drawing on myself <grin>. As it turned out, I think I did a pretty darn good job. I took a self-picture in the mirror for future reference in case I really went ahead with it. I wanted to see if I could find the correct placement. I'd post a picture here, but AOL would probably pull it and cancel my account for posting "pornography" <groan>. I guess I'd better ask that you don't e-mail me for a picture either, because I don't know you and I don't want to risk losing my account and then having no way for you to read these experiences, which I think are probably very helpful to someone wanting to know what to expect.

It seems with time (months), they get a little more even, though one is still larger than the other. I can't figure that out because it's the larger one that's tighter than the other. I don't want to say I don't trust my doctor, but I'm almost convinced two different sizes were put in. I also have a hernia in the smaller one, where my skin ballooned out from a weakening caused by an instrument that pushed through my skin during surgery. They say that can't be fixed either. I don't know if it would do any good to get a second opinion, but I know Medicare wouldn't pay for it to be fixed anyway and I don't have $15,000 for the surgeon and the hospital! I will tell you that if you are persistent in manipulating and massaging them, you should be pretty pleased with the results eventually. Keep in mind that scars take at least a year to end up the way they are going to end up, so you can expect changes in tightness, color, thickness, etc, for at least that amount of time. Hang in there! :-)

(more to come)

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