Good News…

Yesterday was a good news day. I’m still not really comfortable talking about it. It’s not that I believe in hexes or anything like that (although at least one of my children does, but I won’t tell you his name). It’s just that maybe I believe in bad luck…like…if you hear really good news and you get too excited about it or talk too much about it or actually start to believe it, somehow or other it will get ripped away from you. I have a recent story to vouch for that belief. Mary told me about her sister, who just underwent cancer surgery. Although her sister was experiencing some post-surgery pain, they were all celebrating that she made it through, etc. The next day, her sister got a call that they did not get it all; and she has to have another surgery in July. So, being superstitious, or whatever you want to call it, I started thinking today…What if I have a message at home that this good news was all or mostly a mistake? He didn’t mention blood test results, what if I have Leukemia, and he overlooked it? What if? What if? So far today, no calls or messages to pull the rug out from under me, so I guess I’ll share……As you might have guessed, Susan and Krista both went to the oncologist appointment with me. Susan actually met me there earlier, since I had an appointment to see about a wig. Being the day after a long weekend, things were mixed up and hectic at the Cancer Institute. The wig lady was running late, and so was the doctor. Susan and I went and sat in the café and waited. As she told the boutique lady, we just want to talk anyway. The doctor’s appointment magically got moved up a little earlier. We called Krista and told her she should leave work because we were going up…The assistant said if Krista didn’t get there in time, she would just have the doctor see another patient ahead of us. Krista did get there in time, and there we were with the oncologist waiting to hear results of the PET/CT scan that searched for cancer cells throughout my body. What is it about doctors? They never jump right in to what you want to know. Remember the surgeon…he truly never said the word cancer until I asked him a direct question. Here we go again…the doctor read the report of the scans as we sat there. He didn’t say anything about what was in it. He just started talking about chemo, asked to see my surgery site, etc. Finally, I had to come right out and ask, “Was there cancer anywhere else?” “Oh, no,” was his reply. And here are the best words I’ve heard from a doctor yet, “You do not have an incurable disease. You have a curable disease.” Halleluiah! Why couldn’t he have said that right up front? I kept giving sideways glances to both of my daughters, which meant, “Why isn’t he saying anything about the results?” In hindsight, his news was worth waiting for; but don’t they get why you’re there and what your worst fears are? Next, he explained all about chemo…the drugs, the regimen, other tests I need first, etc. Susan took notes on everything so we can review it again. He even told us a good website to visit to read more about chemo. During the course of the visit, we discovered that my surgery site was most likely housing an infection. I have no idea why this would happen after three weeks, but it did. Susan immediately wanted the number of the surgeon’s office to call and tell them this latest update and get help. The oncologist had a bit of a sense of humor, as he advised Susan of the two buzz words she needed to use… red and  painful. He also said not to let them put her through to the nurse or assistant. He doesn’t know Susan very well yet. There was no doubt in my mind that she would get this taken care of…red and painful. They said they would be calling in a prescription for an antibiotic right away. O.K., so chemo has to wait a little bit while I get rid of the infection at the surgical site. Also, I have to have a MUGA Scan. Boy, what else? The MUGA (Multi Gated Acquistion) scan looks at your heart. I think, without looking at Susan’s notes, that this is for baseline data to be able to keep track of any heart damage the chemo drugs may cause. I told him I already had an angiogram, but he said that wouldn’t work for him. Online reports show that this is another two hour test. I hope I won’t be lying prone with both arms above my head like the PET/CT scan, but I’d be willing to bet that it will be close. Also, another out-patient procedure to go through is to have an intravenous port implanted (I hope this is in the arm, but I’m not sure and don’t want to think about that right now.) So, another visit to my surgeon to check the status of the infection, another scan, and another out-patient procedure…and I’ll be good to go for chemo…Oh, about the wig. The day I went for the PET/CT scan, I also met with the boutique lady about a wig. She matched the colors in my hair, not easy since only my hairdresser knows the real formula. But Louise did a great job. After the doctor’s appointment, Susan and I met with the wig hairdresser. All I can say is, “First time’s a charm.” The first wig I tried on was perfect, and although it’s hard to imagine… I think even cuter than my own hairstyle.:) As Louise pointed out, sometimes as we get older our hair thins out, and the wig will seem quite thick. Oh, yes, that was a perk…nice thick hair, closely matched to my color, red highlights, and I can spike it out and it looks great. Susan suggested just getting my hair cut off and wearing the wig….not to mention, it makes me look younger….who would have guessed that we could find positive things in all of this? As soon as Krista left to go back to work (She didn’t stay for the wig party), I’m sure she was on her phone calling other members of the family with the good news. Jay and John both called me within an hour or two. I always tell them to check with the Communications Specialist (that’s Krista), but last time she reminded me that title is no longer correct…she’s now Communications Manager. By the way, I posted that announcement of her promotion to a piece of black construction paper, laminated it, and hung it up in my office today. It’s on a bulletin board that houses a picture of Jay, John, and J.J. that was published in a San Diego newspaper as they attended a Chargers/Raiders football game; an article and picture of Jason for winning the Geography Bee at his school two years in a row; and Teresa’s and Elliott’s engagement announcement and picture from the R.J. I called Teresa my self and told her the good news. She and Elliott made it safely to their new home in the Bay area and are settling in to their very small one bedroom apartment and new engineering office. Things are moving right along…that’s life.

Another Milestone…

Yesterday was another milestone in my life…a return to work (school) two weeks and one day after M&M&M Day. My colleagues and friends were so generous with their support and compliments. Some were surprised I was back; others commented how “good” I looked; others were surprised that I made it through the whole day. My continuing complaint (a small one, all things considered) is the damn camisole. I don’t like it. It doesn’t feel right. I hope I can get back to a bra pretty soon. It makes me think of those poor women in the 1800s or whenever it was that they wore those laced up corsets. I’m sure the camisole is not that uncomfortable, but it’s also not that natural to me. Today was my second day back and even better than the first. There was a double baby-shower after school today. We have a population explosion of babies at our school this year. Today’s shower took me back to a day in March when we also had a double baby shower after school. On that day I got a call from a friend who is a doctor who managed to get a copy of the results of my biopsy. At around 3:00, she calmly said, “I’m sorry. It’s cancer.” Until that moment in time, I still had hope that I would escape membership in the Cancer Club. After all, the biopsy could have come out differently. The lump/mass could have been a mistake as I thought it was the first day I discovered it. Couldn’t it have been something that I could take a pill for to dissolve it and have it disappear? Couldn’t it have been some latent infection from nursing babies? All moot/rhetorical questions…we all know it wasn’t anything simple…it was (calmly) cancer. Following that phone call, I went to the teachers’ lounge and joined in the double shower festivities. No one could have known the news I had just received or possibly have guessed such a thing from my countenance. Inside, I was wondering what on earth I was doing sitting there celebrating the pregnancies and future family members, when life for me could be slipping away. Of course, since then, I’ve come to realize that, for the most part, cancer is not a death sentence any more (probably depending on where it is in one’s body). But today did take me back to that day. That was the first actual acknowledgement that I had cancer, and the circumstances will probably remain a memory for some time. Like, for you older folks, what were you doing when you heard that JKF had been shot, and for many more, what were you doing when you heard about the World Trade Center? Those become moments frozen in time. I don’t want anymore of those in my life. Next week I will meet with the oncologist (really never wanted to have one of those) and hear the results of the PET/CT scan. I have an on-going argument with Susan and Krista that I want to go alone. For every other doctor’s visit, someone has gone with me, especially if bad news could come out. I know that’s the smart thing to do; that’s why I did it before. At some point when a doctor is talking to you, you lose focus on the details of what he said, and you can’t think of all the right (or wrong) questions to ask. Krista said, “We’ll talk about it later.” Susan will not take, “No” for an answer. Let’s see…when I went back to the cardiologist months ago to hear the results of my stress test, Krista and John went with me. Dr. B. said that I didn’t pass the test, that I had a 20% chance of having a heart event (interpreted by me to mean attack or stroke) within the next six months, and that I needed an angiogram. It was hard to look at Krista’s and John’s faces as they received the news at the same time I did. I didn’t have a heart event in the next six months, but Dr. B. did control my life for quite some time. I paid out-of-pocket to have a coronary CT scan to prove to him that I didn’t need an angiogram, but he said I still needed it. While I was retracing my medical steps and going back through my Primary Care Physician for a referral to Dr. B. and also stalling on the angiogram (which scared me out of  my wits), I one-upped Dr. B and got cancer instead. He would not approve my going off aspirin for the biopsy, but they did it anyway. Then, no doctor would perform any surgery on me until I had the angiogram. So, Dr. B. got his way. I had the angiogram, but he was on vacation so one of his colleagues performed it. I was cleared for surgery. Back to the children and their responses to my medical updates. Although we already knew that I had cancer when I went to get the official news from the surgeon (soap opera doctor) because my friend had already checked it out, the news seemed to be traumatic for Susan. She and Krista and Joe went with me. The soap opera doctor never said the word cancer. He said lump, surgery, lumpectomy, mastectomy, lymph nodes, margin of tissue, etc. Finally, I said, “Are there cancer cells in there?” He said, very much like the other doctor who told me first, “Oh, yes, it’s cancer.” When I told him about the angiogram thing, he said they would call Dr. B.’s office and try to get them to speed up a date for it so I could hopefully get clearance and move on to breast surgery. Susan would not let us leave the office until we found out if they were calling and what they would find out from the cardiologist’s office. If you knew Susan, you would know that she has had her own medical issues; and you would not expect a lot of sympathy or empathy from her. She would be someone I would not expect to become emotional over the cancer diagnosis, which we already knew about before he said it. Also, to interject another short story about my family dynamics…when I discovered the lump in my breast, I did not rush to tell anyone about. I really didn’t think I could say the words. For the previous four months, Susan had constantly badgered me about getting the angiogram. What was I doing about it? Who was I calling? When was I going to have it done? Well, one day, Susan, Kathi, Krista and I went for coffee. Susan started again, “Have you called the doctor to schedule the angiogram?” Being slightly irritated, I responded (not very nicely and I’m not proud of it). “Actually, I found a huge lump in my breast, and I think I’m going to have to take care of that first.” In education we talk about the multi-dimensionality of the classroom, the simultaneity…the teacher might say something to a child on one side of the room that overheard by a child on the other side of the room will bring tears to his eyes. This scenario was much like that. When I addressed my answer to Susan, quiet tears rolled down Krista’s cheeks. Susan basically told her to stop crying right now and then demanded more answers about what I was doing about this latest development. After coffee, as we all walked out to our cars, Krista and I ended up in proximity to each other; we both started to cry. Susan came over and once again told us to stop crying. So…what a surprise while waiting in the surgeon’s office for them to call the cardiologist, who tears up? Susan. Go figure. I looked at Krista, pointed to Susan, and said, “What’s this?” There was more bad news from the soap opera doctor following the lumpectomy in the hospital. He told me (while I was in an anesthesia hang-over) along with some configuration of my family that I would guess to be Joe, John, and Krista who were at the hospital all day and Susan, who came from work, that I had much lymph node involvement and that he had removed many of them and that I would next need a mastectomy. For a few moments I knew what he had said and understood it. As Susan, alone, approached my bed/cot/guerney/stretcher in the recovery area, we both cried. Krista reported this to Joe and John and said Susan was going to be out of the loop if she didn’t stop crying in front of mom. Interestingly enough, I forgot this information when I went home on that Thursday. I felt that people were talking like I wasn’t done and things hadn’t gone that well and there was more to come, but I did not consciously remember that information. That is, until Sunday afternoon when Susan mentioned that I was going to have a mastectomy. I don’t think I showed any surprise when she said it, but when she left, I questioned Teresa about it. So, my family, from Thursday to Sunday knew that I needed a mastectomy, pretty much suspected that I didn’t remember or know that, but no one old me. The reason behind all of these stories is to support my stance that I don’t want anyone to go with me to the oncologist next week. I know my feelings are not going to be honored or accepted by some of my children. Here’s the part that’s hard to explain.
Above and beyond anything else in this world, I am a mother. I’ve invested a lifetime in that position and role in life. It defines me and makes me what and who I am. I can take any more bad news about me. I can hear it, try to absorb it, and try to bear it. What I can’t take or bear is having to sit through another encounter with another doctor and try to ignore the looks on my children’s faces, masking their true emotions, as they hear more bad news about their mother. Do I expect bad news from the oncologist? Do you think I’m being pessimistic here? Jay would probably say so. Joe would say so. I disagree; I’m being realistic. Chances are there may be more bad news. Would you want your child to hear it with you? Wouldn’t you rather digest it first, get used to it, and explain it in your own maternal fashion? If it’s good news, Joe and I have been saving a bottle of champagne to open the first time we get good health news (the champagne’s getting old). We can pick up another bottle on the way home from the Cancer Institute, and everyone can come and celebrate together!

PET Scan/CT Scan

I made it through the PET Scan/CT Scan. If you have a claustrophobic bone in your body or if you have the slightest hyperactive tendency, I don’t recommend these tests. I called and spoke to the technicians long before I scheduled the test, and I took notes on what they said. I had a copy of the directions and what to expect when I arrived. First, you have to get there an hour before the scheduled time and have blood drawn. Actually, that’s not first. You really start the evening before, eating nothing-after-dinner and drinking only two glasses of water the morning of the test. I got around the nothing-after-dinner by going out for a great dinner that lasted through several courses, so I didn’t need  anything else to eat last night. I was a little late arriving (very unlike me, but for many of the places I’ve had to go lately, I tend to drag my feet getting ready). Joe wanted to go get coffee for himself, which at first I said, “No” to, but what’s the difference? If it were he getting the test, I guess I would still want my morning coffee. After the blood test, you go to the Lower Level (I think they should call it something else because right there it sounds ominous like inner sanctum or down in the dungeon.) After sitting there for awhile, they called me up to the desk. The girl asked me what flavored Barium drink I wanted: apple, berry, banana, or vanilla. I looked at her like there must be some mistake. I can tell you right now there was nothing in any of my notes or directions about drinking anything with the word Barium in it. I told her that I was having a PET scan, thinking surely they had made a mistake. She said that it wasn’t a mistake, and I asked her to repeat the flavor choices. I took vanilla, and I know the Vanilla Bean Frappuccino at Starbucks is never going to be the same again. Of course, she replied in the affirmative when I asked if I had to drink it all. I took my vanilla Barium (Doesn’t just that word Barium alone bring up bad connotations of intestines and bowels, etc.?) and sat back down next to Joe and pouted. I pulled my directions for the test out of my purse and asked him to go ask the girl about the Barium drink that was not listed in the directions. Joe loves to ask questions, so he did. There was no other answer. I had to drink it all. Pretty soon they called me back. I brought the Ipod, not set on the sad section of Jay’s All Time Favorites, and I was ready to sit quietly in the recliner after they put in an IV and some shot of something (harmless). By the way, I had already signed the waiver stating that minor allergic reactions occur in 1 to 30 patients; severe allergic reactions occur 1 of 2,000 patients; and, as Joe reminded me earlier, the actual risk of death is less than 1 in 150,000. I was supposed to be seated for approximately 45 minutes to one hour listening to the Ipod and waiting for the injection to circulate through the tissues of my body. Sooner than that, one of the technicians appeared with a glass of water, of which I needed to drink the whole thing. Following a trip to the restroom, I was ushered into the inner sanctum in the Lower Level for the test. I was told that I could listen to the Ipod for part of the test; and if I wanted to, I needed to turn it on then and leave it playing and ready to go when we got to that part. About the technicians…really everywhere I’ve gone for tests, labs, surgeries, etc., I have found the technicians and nurses so very nice and compassionate (There was one exception in the lab before the lumpectomy, but that’s a story for another time.) The ladies explained the procedure, got me settled on the 12” wide cot/bed/whatever and had me place both arms above my head. They started the first part for which I could not use the Ipod. When that was finished one came and told me I could use one hand to insert the ear pieces for the Ipod, Then I had to put that hand back above my head joining the other hand where she placed the Ipod, which could not be manipulated. Honestly, it took everything I had to make it through the rest. They said there would be a total of around 20 minutes. They lied. I think it was double that. I kept my eyes closed almost the entire time so I could pretend I was not in the tunnel part of the machine. I heard American Pie and several other songs. When we got to the The Road-Out by Jackson Browne, I just knew if I could make it through that roughly six minute song, I had to be done. No, not yet. It had to be way past 20 minutes. They lied. I said pretty much the entire Rosary, and I knew when I finished that and The Road-Out, I would be rescued. I didn’t think I could take another minute. I wanted to ask how much longer, but I was afraid. If they said more than two minutes, I couldn’t make it. I’m so grateful to Donna M. who told me to get over the machinery and just think of it as my friend, to know that it’s tracking down any cancer cells I have in my body. Thanks, Donna, I kept that in my thoughts as much as possible and used it to chase away the anxiety. Mercifully, one of the tech ladies came in. She said they had to make sure the pictures took. I asked her if she could help me sit up in the meantime. I could not possibly have gotten up by myself. She helped me, said the pictures were good, and that I could go. God Bless. When I ran for my life from the Lower Level, I went to meet with the lady who runs the boutique at the Cancer Institute. She was very helpful, very honest about side effects of chemo, which will be my next challenge. You know, I thought I was going to save money on hair products and stuff (since I’m not going to have any hair), but I can see that I’m going to need many other products for scalp, skin, make-up, special deodorant, toothpaste, etc. It’s going to be a whole new world!