Fade To Black

Yesterday was my first Thursday night knitting group. Several of us from my Sunday group decided to start one on our side of town, just so we’d have something midweek. While I was there, my mom called me twice, but my phone was in my bag and on silent. Matt’s like a toddler whose mom goes to the bathroom: they can be fine for hours and hours, but the instant mom has to pee, they suddenly NEED attention. Yup, Matt does the same thing to me while I’m knitting.

Anyway, I called my mom thinking she wanted to ask/tell me something about my step-dad’s birthday party on Sunday. Instead, she told me my dad died. Technically, he was also my step-dad, but he adopted me when I was a toddler, so he was the only dad I really knew. He was a pretty shitty one, and I hadn’t talked to him for at least four years. Now I’m trying to process and getting nowhere, because I just don’t feel anything. No sadness, no regret, nothing. At the most, I feel bad that I didn’t have the kind of dad, or the kind of relationship with my dad that would make me sad that he’s dead.

I never met his new wife. I haven’t talked to my sister in seven years. It’s been even longer since I talked to my aunt, after she screwed me over on my inheritance from my grandmother (which my dad did nothing about…but I’d already stopped talking to him long before that point). The only reason my mom even found out was because a friend ran into a friend who knew a friend who saw my dad while he was in hospice. My mom wasn’t even sure what day he died, but it was sometime this week.

Maybe I’ll feel something later, though I doubt it. I spent decades getting past the not so lovely job my parents did. I look around at my life now, my wonderful husband, amazing children, and good friends, and I am grateful for what I have, but… On the plus side, I’m obviously past all my anger issues, because I’m not happy that he’s dead. I used to dream of dancing on his grave, but that mostly went away by the time I hit thirty-something.

I’ve tried to think of the good things, and can only come up with six. He taught me to snorkel. He stayed in the hospital with me when I had my tonsils out. He got my tuition refunded when I had to stay in the hospital for a week with a kidney infection while I was pregnant with Matt. He went to as many of Matt’s football games as he could and taught me about football. He taught me how to make spaghetti.

That’s my eulogy.


Six Days ‘Til Monday

While I wait until Monday afternoon to see the oncologist, life goes on. Last Tuesday, the day after having my mammogram and ultrasound, I couldn’t stop talking about the possibilities of what it could be. Matt, in all his 24 years of wisdom, gave the best advice. He said, “Mom, you have six days ’til Monday. Do you want to go to the doctor on Monday and find out you have cancer, then realize you spent your last six cancer free days worrying that you have cancer? You should be living for the next six day.”

Although it’s impossible to stop thinking about what is going to happen (or not happen), I know that Matt is right. So I’ve been spending time with my family, doing all the normal things. Of course, normal with fibromyalgia is a different sort of normal. I still have to take it easy, and I still have to deal with exhaustion. But in the moments in between, I’ve helped Matt start painting his apartment. I’ve kissed my husband goodnight every night. I’ve watched movies with my daughter, helped her deal with her disappointment at not being able to go to MHC this fall, and looked online for apartments for her and her potential roommate. I’ve hugged my dog, talked to my mom, and told friends how much I love them.

I can deal with any medical stuff that comes my way. Fibro has made me a stronger self-advocate, and taught me how to cope with discomfort. I have no fear of needles, x-ray machines, or anesthesia. I know that my family and friends are here for me no matter what.

The stuff that’s harder to deal with is all the stuff that research sites don’t tell you. While the CTRC spits out the facts in concise, easy to understand bullet points, there’s nothing on their page that says what to do to prepare your children and life partner. There are guidelines for eating right, but nothing to help me figure out how to make my mother understand that for the first time in my life, this HAS to be about ME, not her. Support groups tell you not to be afraid to ask for help, but they don’t tell you who you should ask when your friends live on either side of the country while you’re in the middle. There is no page that explains how to give your children a lifetime of love, when your lifetime may only last two more years. There’s nothing to prepare you for the disappointment of never seeing your grandchildren, for not being there on your daughter’s wedding day, for not seeing your son win his first grammy, for having a marriage cut short by that last bit of vows, “’till death do us part.”

That’s the stuff I have trouble with.

Today is the last of my six days. What will I do with it? Spend time with my husband. Help my son paint. Talk with my daughter. Bake her a birthday cake (tomorrow she will be 20!). Today, I will be here, in the present. Tomorrow…will bring what it will bring.

*** I always use song titles or lyrics as the titles for my posts. When Matt said, “six days ’till Monday,” we all agreed that he should write a song about it. I said I’d use it as a title, but only if he promised to write the song. I’m holding him to that.

To Hear What The Doctor Will Say

I am scared. Not just scared…I am terrified.

About a month ago, I noticed that my breasts were sore. Because I have fibromyalgia, I’m used to odd body parts being randomly sore, so I didn’t think much of it until I realized it had been a week and they were still hurting. I told my husband I was going to call the doctor, but then promptly forgot.

The third week, they were much more sore, but I still hadn’t called my doctor. I did, however, get a reminder call from the place where I go for my mammograms, as it was time for my yearly. My mother had breast cancer, although hers was found early enough that it was considered stage 0. Even so, it puts me at higher risk; add in my risk for melanoma from my father’s side and I’m pretty much screwed. I think I was avoiding calling my doctor because I didn’t want to hear the bad news. Typical reaction for women who find a lump or some other symptom of disease…we figure if we don’t get an official diagnosis, we don’t really have whatever it is.

By Saturday night, my breasts were in serious pain. I couldn’t feel any lumps anywhere, but I did notice that when I pressed around my areola, there was a distinct thickness to the underlying tissue. On Sunday, I started researching, which is something I am VERY good at. I began with the myth that if there is pain, it can’t be cancer. Not true. Pain is a sign of advanced cancer.

Next was the myth of the lump. It’s not cancer if you don’t have a lump. Not true. Some cancers are interstitial (between the tissues); this is when I found articles on inflammatory breast cancer. With IBC, there is no lump in the early stages, although there is usually thickening of the tissue. When a lump is found, it usually appears very quickly. It’s not there one day, and is there the next. Other symptoms of Inflammatory Breast Cancer are:

  • Changes in the appearance of the nipple
  • Itching of the nipple or breast
  • Pain and soreness of the breast
  • Tingling in the breast and nipple, much like the feeling of milk “letting down” during breastfeeding
  • Swelling of the breast that does not go away with antibiotics
  • Redness and warmth that does not go away with antibiotics
  • A pink or red rash on or near the breast, or a dimpled appearance in the skin of the breast, resembling orange peel
  • Swollen lymph nodes
  • Discharge of fluid from the nipple, particularly fluid that looks like puss or has blood in it

IBC is the most aggressive, fastest spreading and deadliest form of breast cancer, with a five year survival rate of 40%. It is also extremely rare with an occurrence rate of 2% to 6% of all breast cancers. It is often misdiagnosed in the early stages as mastitis, as all the early symptoms mimic mastitis. It’s also very difficult to diagnose in early stages because it doesn’t show up in a mammogram, ultrasound, or MRI until later. The lack of early diagnosis is what leads to the high death rate. It is almost always considered Stage IIIB when found, or Stage IV if it has metastasized. Early diagnosis depends on needle biopsy, especially from different parts of the breast. Unfortunately, most doctors will not order a needle biopsy unless there is a lump, hence the death spiral.

Because IBC is rare, a radiologist may have never seen it anywhere other than a textbook. Doctors often see only one or two cases in their careers. This is why it is vital to get a second opinion, and even more vital that one finds a cancer research facility that specializes in breast cancer.

After all my research on Sunday, I began counting down the hours until I could call my ob-gyn. He’s been my doctor for almost 25 years, so I felt like I could trust him with my life. Since the mammogram place opens before my doctor’s office, I called them first. They asked if this was for just a yearly, and I said no, that I was having severe pain in both breasts. Normally, I don’t need a doctor’s order to get a mammogram, but they said I needed a diagnostic as well as an ultrasound, which do require doctor’s orders.  They did, however, make an appointment for me for later that morning, assuming I could get the order faxed over. When I finished that phone call, the doctor’s office was open, so I called and explained my symptoms, and asked for the diagnostic orders. The office person said she’d have someone get back to me.

An hour later, I called back, explained that I had managed to get a same day appointment at the screening place, but still hadn’t heard from them regarding the orders. Again, she said she would have someone call me back. Finally, an hour before my appointment, she called to say that the orders would be faxed to the screening facility.

Of course, when I got there, they didn’t have any orders. Worse yet, they had no record of my having made an appointment. This particular screening facility kicks ass, though, as they called the doctor and had the orders in a matter of minutes. They were also able to work me in; I literally had to wait five minutes before I was seen.

One of the technicians came out to get me, then took me into a little locker room and told me to put on the robe with the opening to the front. I kid you not, I could not for the life of me figure out how to get it on so that it opened to the front! No matter which hole I started with, nor which arm, I still ended up with the opening on the side. I finally gave up and just went to sit in the second waiting area.

The technician called me back to the mammogram room, and told me to take off the right side of the gown. I realized it didn’t matter where the opening was, as I had to remove the damn thing anyway. She apologized for how cold the machine would be and explained the procedure, which I already knew, but it was nice to know that she also understood how it worked. Once she took all the different angles, she sent me back to the inner waiting room while the radiologist read the scans.

As I sat there, I looked around at all the other women in their blue robes. One by one, they were called away for their procedures until it was just me and a 70 year old woman. I asked her if this ever gets easier, and she said no. She was there for her routine screening, and I explained that I was not; that I was sure something was wrong. We chatted for a few minutes until the technician came back to say the radiologist wanted a few more scans.

We went back into the mammogram room and she took the second set of scans, then was really nice and showed me the difference between last year’s and this year’s. There was a very obvious, large white mass in my right breast. She said that the radiologist wasn’t too concerned, as at my age, there is often a natural thickening of the tissue, but that they definitely wanted an ultrasound, just to be sure.

I somehow found my way back to the inner waiting area, feeling stunned and sick to my stomach. I only had to wait a couple of minutes before they took me to the ultrasound room. Honestly, that was more painful than the mammogram, because she had to put so much pressure on my extremely sore breasts. She took at least 20 pictures of each breast, while I watched to see what she thought was important enough to snap and measure. Even I could tell there were no cysts, and the white mass was diffusing to the surrounding tissue.

When she was done, she gave me half a roll of paper towels to wipe off the sonogram goop, and told me to wait (again) for the radiologist to read the scans. Less than ten minutes later, the first technician came to get me, and explained the results as she walked me back to my locker area. She said the radiologist wasn’t too concerned, but that I should come back in six months. I told her that if I have IBC, I could be dead in six months. To her credit, she did not roll her eyes, but said the radiologist suggested I have a breast MRI just to make sure.

I called my doctor when I was done, relayed the message that the radiologist suggested a breast MRI, and asked if my doctor would order it. The office woman said she’d have someone call me back. Sigh. She did call back rather quickly, and said the doctor was willing to talk to me if I wanted. When he came on the line, he said he’d order the MRI, but he didn’t think I needed it. I agreed and said I needed a needle biopsy. After a few moments of explanation, he agreed to the biopsy, but told me there was no need for me to go in to see him, as there was nothing he could do for me. Seriously! What if I have some kind of infection, or reaction to something? How could he dare to roll his eyes at me when he had neither seen nor examined my breasts? In the 25 years that he’s been my doctor, I’ve never gone all hypochondriac on him, so I felt I deserved to be taken seriously. I was frustrated and irritated, and reminded of what it was like when I was trying to convince my old GP that I had interstitial cystitis and fibromyalgia. He insisted that I didn’t, and that I just had depression (i.e. it was all in my head). Of course, I did have IC, I did have fibro, and I did change doctors. Fortunately, that whole experience taught me to be my own advocate and always get a second (or third!) opinion.

When I got home, I started looking for a doctor here who specializes in IBC. It turns out that one of the top research facilities in the country is about ten minutes from my house. I called them and explained my situation and my fear that it was IBC. The receptionist listened to my symptoms and my description of my scans, and said, “You need to be seen immediately. We’ll order your scans to be sent here, and someone will call you back with an appointment time either this afternoon or tomorrow morning at the latest.” That’s when I lost it. I started crying and blubbering, “Thank you! Thank you so much!” while she made comforting murmuring noises at me.

She was as good as her word, as I got a call just a few hours later with an appointment for Monday the 24th. That’s also my daughter’s birthday. Not exactly how we planned to spend it, but at least I’ll know something by the time we go out Monday evening.