Six Weeks ‘Til Monday

Yesterday was my daughter’s 20th birthday, and my appointment with the oncologist. My mom and step-dad took us to lunch, then Aubrey had to go to work at her second job. When she got home last night, she was excited and bummed. If she had been out of training, she would have walked away with well over $200 for five hours of work. Fortunately, today is the day she takes all of her tests, and assuming she passes all three (which she will), she will officially be on her own and will be able to keep her tips. Although she wasn’t happy about having to work on her birthday, she felt a lot better about it knowing that everyone deemed her ready to “graduate” from training today.

I wish I could say that my appointment with the oncologist was as fulfilling. Although they had received the current mammograms from last week, he did not receive my previous mammograms, so had nothing to compare the new ones to. In other words, my life is still held in the balance based on the opinion of a single radiologist.

However, the doctor did physically examine me, checked all my lymph nodes, thoroughly palpated both breasts, and based on that, felt I had nothing to worry about. He’s convinced it’s most likely hormonal, since I do still have my ovaries. He prescribed evening primrose oil twice a day for the next six weeks, and wants to see me again in six weeks. That gives him a chance to look at ALL of my scans, and we’ll know by then if the oil is working.

I didn’t realize how much I had been running on adrenaline until I got home from the doctor’s. I sat down on my bed with my laptop to check my email and facebook; instead, I passed out with my hands in mid-typing and woke up at 9:30 pm. I was exhausted, emotionally and physically. Even without a definitive diagnosis, I am reassured enough that I can stop the incessant worrying, and spend more time on the important things.

I can honestly say, though, that my life has changed. For one thing, I am now a huge advocate for breast cancer awareness, particularly Inflammatory Breast Cancer (IBC). I enjoy my family more than ever. I appreciate the wonderfulness of my kind and caring friends. Last but not least, I know how important it is to live in the moment, to be present both physically and mentally, to focus on what’s in front of me, instead of what might lie ahead. In other words, life goes on.

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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.

I Don’t Know A Dream That’s Not Been Shattered

There is much heartbreak in our house tonight. After hearing that her brother got his financial aid award today, Aubrey checked her MHC email to see if she’d gotten anything yet. She did, and…she didn’t. Yes, she did get awarded financial aid, but they have our family contribution at $22,000. That’s almost half our yearly income after meds, doctor visits, treatments, dental bills…She was already expecting to have to take out a personal private loan in order to cover the parental contribution, because she knew we just plain don’t have any extra. There is just no way that as a parent, I can in good conscience allow or encourage her to take out that much debt for one year of school. When she saw the “award,” she just sort of crumpled to the floor in a little ball and started to cry.

She’s worked her ass off for the last year, and even got a second job so that she would have enough to get up to school, as well as cover some of her other expenses like books and supplies. The second job is destroying her knee; we had already planned to schedule an appointment with the orthopedist who took care of Matt’s knee when he tore his MCL. We think she may have gotten a hairline fracture when she hit it on one of the metal supports for the glass of the wine wall. She hurt it ages ago, but was able to nurse it along until she started waitressing. Now that she’s on it for five hours straight in the morning, and then another five hours at night, it’s become unmanageable.

Now it seems like it’s all been for nothing; at least, in her eyes. I know that there are countless options for her, but at the moment, she can’t see any of them. In my experience, things tend to go the way they are meant to go. While it’s too late to register for classes at anywhere other than the local community college, she can take a few music and dance classes very inexpensively. She can focus on her modeling, or save up to travel, or even work in a different city for a while. She’s not married and doesn’t have kids, so she’s light years from the few opportunities I had at her age.

I’m not sure who is more disappointed…me or her. I think it’s more that I am disappointed for her. But I know that Aubrey is amazing and will always find a way to soar. She just has to remember where the sky is.

You Left Me Hanging From A Thread

Yesterday was more than a little tense in our house. Aubrey and I were arguing, so we spent the day on opposite sides of the house, not speaking to each other. Even though she had a job interview yesterday for a second/day job yesterday afternoon, I didn’t wish her good luck, nor did I chat with her about it when she got home. Ron was the one who asked her about the interview…she got the job!

Why were we fighting? It was the same old argument about her cell phone and her not calling to tell me where she was. I have both kids as extra lines on my cell plan, because it is so much cheaper than them each having to pay for their own line. It also assures me that they will both always have working cell phones in case of an emergency. At 19 and 24, they both have fluctuating income which means that sometimes, choices have to be made about where the money goes. I would rather know that I can always call them (or they can call me), rather than someone not paying their bill and having their phone cut off.

However, there is a strict rule that comes along with the phone. For Matt, it means I expect him to answer when I call, or at least call me back in a reasonable amount of time. Since Aubrey still lives at home, I expect her to either call or at the very least, send a text to let me know when she is changing locations, and when she gets to the new location. I’ve tried to beat it into her brain that not only is it common courtesy to let the person you’re living with know when you’ll be home, it’s also a safety issue. I’ve told her time and time again that it doesn’t matter if I answer the phone, especially if I’m asleep. I wake up throughout the night (especially if she’s out) and check my phone; if it’s 3am and she’s not home, I had damn well better see a text or have a voicemail telling me that she’s safe.

On Sunday night, she went out with a friend and sent me a text at 6:30 pm to let me know they were hanging out at a large shopping center. I didn’t hear from her again; finally, at 12:45 am, I called her several times and her phone went straight to voicemail. Finally, I started to panic, knowing what a horrible driver she is. Fortunately, I was able to pull up her cell phone record with the current useage and figured out which number belonged to the friend she was with. I called her friend, who didn’t answer, but who immediately sent me a text saying Aubrey didn’t have any cell service, but she was safe and was heading home.

I was absolutely livid. She had said she would be home at 9:00 pm. No matter what, she should have at least sent a message that she was going to be out later than that. The only other rule in our house is that neither of my children is allowed to do anything that would require emergency services of any kind to come to my door. Being four hours late is something that would break that rule, as I was about to call the police to say she was missing. If her friend hadn’t texted me, you can bet I would have called the police and every hospital emergency room in town.

As a result, when she got home, I took away her phone. Because she didn’t use it for its intended purpose, she lost the privilege of having it. I told her she’d get it back when I felt like it. Arbitrary, I know, which is always bad parenting, but I was really pissed.

When she got home from her interview last night, right before dinner, I bitched her out again while Ron cooked dinner. Of course, he’s always good cop to my bad cop, which can sometimes irritate the hell out of me; yesterday was one of those times. After I got through yelling at her, I told her she could have her phone back, but if it happened again, the phone was going to be taken away permanently and she would have to spend upwards of $50 a month for her own line.

That got her pissed off at me. She went and sulked in her room, and I came in the office and watched Star Trek (which acts as Aubrey repellant). We probably said about two words to each other by the time I went to bed.

This morning, though, I came into the office to get on my computer and found an Aubrey peace offering…there were three Hershey’s Kisses sitting next to my laptop, on the bed. I know it was deliberate because she keeps the bag of Kisses in her room (otherwise I eat them all), so it’s not like they fell out and landed there.

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So once again, she is my sweet, loveable daughter whom I adore. How can I stay mad after that?