my Breast Cancer blog

2004, age 34 — this is my story

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Mammogram and MRI: Mix ‘Em Up

Check this out: I just read in Family Circle magazine (October 1, 2009) that alternating between mammograms and MRIs every six months is a potentially lifesaving measure for women at high risk for breast cancer. This comes straight from new research out of the University of Texas M.D. Anderson Cancer Center. I find this reassuring because it’s the exact schedule I follow — mammogram, MRI six months later, mammogram six months later, and so on.

More research, from Dartmouth University in Hanover, New Hampshire, found that MRIs can spot tumors not found in mammogram or ultrasound in 20 percent of breast cancers.

I think I’m covered. Whew.

Mammogram Bus Rolling Through Puerto Rico

ruta pink mammogram bus

Ruta Pink mammogram bus

With early detection often leading to a 98-percent survival rate, mammograms are essential for women over 35. Unfortunately, millions of American women are uninsured, and don’t have the means to afford an annual mammogram test. But in Puerto Rico, uninsured women are turning to a new program for help.

Last year, Doral Bank in Puerto Rico partnered with Susan G Komen for the Cure and launched “Ruta Pink” (Pink Route). Ruta Pink is a pink mobile mammogram clinic that stops through various towns in Puerto Rico, offering women (and even men!) free mammograms, but also biopsies and referrals. These healthcare services are offered free of charge, for both sexes, whether they insured or uninsured.

In addition to providing direct health care services, Ruta Pink is also running free educational seminars about breast cancer prevention. The sessions also address self-esteem and healthy living tips for breast cancer survivors.

Since launching in June of 2008, Ruta Pink’s medical team has performed over 2,000 mammograms. And Doral is also committed to helping the Susan G Komen foundation by offering contributions every time a woman opens a “Pink” account with the bank.

With breast cancer awareness month (October) just around the corner, Doral Bank in Puerto Rico is leading the way for breast cancer prevention and education with its innovative, award-winning Ruta Pink initiative.

For more information about the program, you can contact the program’s exclusive hotline at (787) 625-5830 or visit their website at www.RutaPink.com. You can also watch their videos on YouTube at www.youtube.com/rutapink

Fine

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At 8 a.m. this morning, I arrived at the oncology clinic at Shands Hospital in Gainesville, FL for a six-month breast cancer follow-up. I sat in a nearly empty waiting room for a short time, then was moved to an exam room, where I had my blood drawn (ouch!), my weight checked (good news), my blood pressure taken (low, but good) and my temperature taken (98.3). Then met with my lovely Dr. who checked my boobs, my lymph nodes, my belly and my breathing.

Everything was just fine.

And then I drove away. And it’s been a glorious day ever since.

Clearly great

jerrythesaint.jpgMammogram: Clear
Ultrasound: Clear
My mood: Great

It could have gone the other way. One of my imaging tests today could have turned up something suspicious which would have dictated a completely different outcome and a much worse mood. It happened three and a half years ago when the doctor who'd seen my tumor on ultrasound said, "I want this out and in a jar." That tumor that landed in a jar days later was cancer. And so every time I'm screened and every time I see my oncologist for a follow-up (coming this Monday), I'm never really sure how clear or how great things will be. I'm sure for now, though. My boobs show no sign of cancer. My mood shows no sign of worry. I couldn’t ask for anything more.

Sigh.

photo courtesy of JerrytheSaint on flickr

Clarification

My doctor says those disturbing words used in my echocardiogram report to describe the valves of my heart—dilated, thickened, insufficient—are “normal variants.” They are medically insignificant. Just as I’d imagined they must be. I’m thankful for the clarification, though. And my doctor is glad I poked around for more information.

“I would have been disappointed if you didn’t ask about them,” he said.

I would have been too.

Context matters

Quick. Get me a cardiologist. My right ventricle is mildly dilated. My aortic valve is mildly thickened. And my tricuspid valve is mildly insufficient.

I’m sure this is all somehow medically insignificant. Otherwise my oncologist would not be telling me I’m good to go should I opt for a tummy tuck surgery (more about this tummy business later). If my heart couldn’t take it, surely he’d be warning me. The guy did save me from breast cancer, after all. He clearly knows what he’s talking about.

This morning, my good doctor e-mailed me a copy of my latest echocardiogram—that’s how I was able to pour over the details of this July 2006 report. I’d asked him for it as I continue to search my soul for guidance regarding my tummy, and he swiftly sent it my way. I wanted to know how my strong my ticker is—both my year-long therapy with the breast cancer drug Herceptin and my four doses of the chemotherapy drug Adriamycin put me at risk for compromised heart function and so my heart was monitored for a bit. I wanted to know today, based on my last screening, how I’d fare under general anesthesia and how my heart would tolerate a two-hour surgery—should I go through with it.

I’m good to go, says my doc. Still, I’ve asked him for a bit of clarification. What does this troublesome wording—dilated, thickened, insufficient—mean, I want to know.

This is what I want you to know: Context matters.

More and more, we patients rely on information via the Internet or in this case of mine, e-mail. These methods of research are void of human contact and medical opinion and therefore lack context. Who knows, maybe a thickened aortic valve is a good thing. Maybe it’s not necessarily good but not bad either. I don’t know. Until someone clears things up for me, I will remain uncertain. That’s why I’m following up with my doctor. You should too.

Whenever you are concerned about your health, do your research, ask around, dig up all you can. Then talk to a medical professional who can iron out all the kinks in what you’ve gathered. Balance is always a good bet. Really, it is.

Checking out my boobs

First, my boobs were squashed like pancakes in a digital mammography machine. They were squashed from the front and squashed from the side and when the squashing was done, I was called back for more. The doctor wanted to see additional images of my high-risk breasts, so the tender little things were flattened again, and again, so more shots could be snapped. It hurt, all that squeezing. It didn’t hurt as much as breast cancer hurts but still, it hurt.

Next was my ultrasound, a painless but messy test that involves loads of gel dripping from my breasts and a wand that travels every inch of skin in search of suspicious stuff. A few questionable areas popped up but were quickly dismissed. No breast cancer, according to that ultrasound. And the mammogram too.

A breast MRI rounded out my morning — I spent about an hour sliding in and out of a tube, IV in my arm, boobs dangling toward the floor through openings on a table, buzzing sounds blaring in my ears — and while I don’t yet know the results of this humbling experience, I am confident everything is A-OK. It has to be. I’m not sure I could handle it any other way.

Why girls have so much stuff

Joey asked John last night, “Why do girls have so much stuff?” Hiding his laughter and feigning a serious tone, John asked Joey what he meant. Joey said, “Why do girls have boobies and bras and pants and shoes and shampoos?” I am not sure what John told Joey — I’m not sure if John even knows the answer. I do know John and I are still laughing today at this question, posed by a five-year-old who is trying to figure out this confusing world. Sometimes he can’t figure out the complexities; sometimes he gets it right on. Like the other day when Danny asked me while we were driving in our van, “Mommy, are you winning?” I told Danny that driving is not a race — even though a car had just passed me by — and that I do not try to “win.” I told him some cars drive faster and some cars drive slower but that we should all go the speed limit. Joey piped in and said, “Danny, actually, the cars that are going faster are the ones who are losing because they are going to get pulled over and get a ticket.” What perspective. Now he just has to grasp this girl thing. Maybe that won’t ever happen. All I can do is tell him why I have so much stuff. Because it makes me feel good.

But “stuff” alone doesn’t make me feel good. Simple joys do the trick too. Like watching Danny yesterday as he learned to pump his legs while swinging. And watching him today learn to start himself on the swing, without a push from anyone. He is a whole year younger than Joey was when he learned this daunting task. Danny is not even three years old. Close, though — he will be three on May 30th and he talks constantly about his party where he wants to invite Wyatt and Jayda — two five-year-olds from preschool. He invites everyone, really. At the pediatrician’s office one day recently, the doctor asked Danny his age. He said, “Gonna be three. Want to come at my party?” I’m not sure what will come of this party, which I think I will have one afternoon on the school playground. But joyous it will be. I know that for sure.

Other simple joys — a new job I was just recently offered at www.thecancerblog.com. I will work part-time writing posts that relate in some way to cancer. They can reflect news and information and personal perspective too. Oddly, several people contacted me during the same week asking if I would write for them. They found me through this blog, liked what I’ve written, and offered me jobs. I could only accept one and am honored, flattered, happy that I will get to write not only for pay but for an audience that may benefit from what I can offer. I also found out today that my site is featured as one of the top 10 sites for breast cancer information on http://breast-cancer.toptensources.com/TopTenSources/Default.aspx. And I may do some volunteer guest articles and Q & A sessions for some other sites.

More joy: a training/exercise routine that has me actually noticing a few muscles I never knew I had, a ban on candy in our house that we hope will encourage healthier eating, and a check-up with my surgeon that revealed that my breast thought to be infected is not in fact infected.

When it rains, it pours. Downpours of simple joy.

Jacki Donaldson

The room full of uncertainty

I waited for hours yesterday to hear the results of my mammogram and ultrasound. It’s not an odd thing — the waiting — and the women revolving in and out of the doors of this office know the routine well. We sign in and wait. We are led into another room, lock our clothing in a locker, put on a cape-like gown so that we are all partially revealed to one another — and we wait. We are called back to the exam room where our breasts are squeezed and manipulated and squashed like pancakes into a machine. Photos are taken, we are excused, and we report back to our previous location — and we wait. We are called again, into a hallway, where a nurse usually says, “The doctor has looked at your films and everything is just fine. You may put your clothes on and check out.” A sigh of relief for many. And then the chore is done for one whole year. Unless you are me.

For women like me, who have had breast cancer, the scenario is a bit different because regardless of what the mammogram shows for me, I go on to get an ultrasound and meet with the doctor. And I visit this office twice a year — not once. This came as a shock to the draped women who sat with me in the holding room who assumed I was there for the obligatory one-year check-up. One woman stated the assumption and then I told her of my story — that I am still receiving treatment for breast cancer and am monitored more closely than some. She apologized for steering into my business but I really didn’t mind. I enjoyed telling my story and answering questions and offering hope to those who sat uncertain of the news they would receive. You see, you don’t have to feel a lump to find out you have cancer, like I did. Often, the mammogram picks up on a problem when there was never a suspicion at all that anything existed. So the women who enter this office and wait for hours do so with anxiety and a tinge of fear. So I think these women asked me questions in order to prepare for the potential bad news they may one day receive. And I wanted them to know that the bad news doesn’t have to be all that bad. Because here I am, healthy and strong and happy and with a mop of brown curls that no one in the room would have ever known is my second batch of hair. One woman said to me, “I am so sorry.” And another responded, “Don’t be sorry. Look at her — she’s surviving.” And that is exactly what I wanted them to think.

I got a round of applause at the end of my visit — from these women who I talked with for more than hour. They clapped for me and smiled for me and sent me on my way with tears welling up in my eyes. I know they were clapping to honor me — for fighting this sometimes deadly disease. But I hope they were clapping also with the knowledge that they too can fight and win this battle.

For now I am still winning my battle. My mammogram looked good and my ultrasound did too. The doctor did determine that I have an skin infection on one nipple — which worries me a bit when I allow myself to really think about it. But I will take an antibiotic for one week and will not dwell on this hopefully normal occurrence.

And then back in six months when I enter the room of uncertainty again.

Jacki Donaldson

Good news

About a week ago, I had a breast MRI. It was recommended by my radiation oncologist who in January felt some dense, lumpy tissue in my right breast. As this doctor was feeling my breast during the exam, she said, “Does this hurt?” I said, “Yes” because it felt very tender and sore. She was not really worried and told me that it is normal to have some lumpy tissue and that soreness is usually a result of hormones. Since my left breast has received radiation, she said I will not feel much sensation on this side — the tissue has all been zapped and fried and is now numb to hormonal influences. But the right side is still affected and this is perhaps why she felt lumpiness and I felt discomfort. But (there is always a “but”), there is the chance that this was not normal so to be cautious, she referred me for an MRI. I’m on the every-six-month rotation for mammograms but had not yet had a MRI which offers a different look at the breast and can perhaps pick up something left unnoticed by mammogram.

So I had the MRI. The experience was fine — despite the IV contrast that was injected into my arm, the tight tube I was plunged into, and the loud, banging noises that made it all but impossible to hear the music that was piped into the headsets I was wearing. The whole process took about 30 minutes and was pretty uneventful — so much so that I forgot that I could call for the results in one week’s time. Yesterday was the one week mark. My mom called to ask me if I’d received the results. No, I had not. The MRI was off my radar. No worries. No concerns. No memory really that I’d had it done. I figure this a good thing. I could have been anxious and worried and on pins and needles for the week. Instead, I was oblivious. I’m not sure if this is a result of better coping on my part or if chemo drugs have affected my memory (this is called “chemo brain”). Regardless, I am thankful for the absence of thought on this topic.

I called my radiation oncologist for the results after my mom reminded me about the MRI. And I got a call back late in the afternoon — a message on my voice mail that told me “I cannot tell you the results on this message. But I can tell you that it’s good news.” Before I called back to get the specific results, I checked my mail and got a letter that read:

“We are pleased to inform you that your MRI examination did not show any problems at this time. Please remember that some cancers (about 10%) cannot be found on mammography alone. Early detection requires a combination of monthly breast self-examination and a yearly breast exam by your physician.”

Another “but” — everything looks good, “but” there still could be cancer. I’m OK with this. I think that if cancer returns to my breast, it will be caught early with the combination of monitoring I will receive for the next five years. And while I am not sure how I would handle cancer somewhere else in my body, I think I can handle breast cancer again. I know the process, I know what to expect, and I even know what I might do differently (like rest more and keep up my normal routine less).

For now, I will go with the 90% chance that everything really is OK. To me, that is good news.

Jacki Donaldson

Nothing but normal

I got my clean bill of health today. My mammogram and ultrasound both showed nothing but normal tissue. And I walked out of the doctor’s office with nothing to worry about. No sinking feelings. No anxiety about a biopsy. No fear. No gut feeling that cancer lives in my body. That was last year — at this very time of the year. This year, I am off to a smooth start. A relief, to say the least.

Last Thanksgiving, I was terrified. This Thanksgiving, I am thankful. Truly thankful.

Jacki Donaldson

Answers

Today I got some answers. I learned that the bump on the roof of my mouth appears to be normal and is maybe just a swollen gland. My dentist says the tissue looks pink and healthy and the bump should go away on its own. He will check me again in six weeks or so when I go for a cleaning. If it continues to worry me, he will look at it again.

I also learned from my OB/GYN that I am anemic. My iron should be at about 14 and it’s 10.8 which is moderately low and is perhaps why my fatigue is so extreme on some days. I will take an iron tablet each day and will investigate this further when I see my oncologist in a few weeks. Otherwise, I got a clean bill of health from this visit.

My day ended with my sixth dose of Herceptin. Tracy visited with me in my private infusion room and the time passed by quickly — a blessing given that I’d been in the care of doctors since 9:45 AM.

When I returned home at 5:15 PM, I was greeted by Danny’s warm welcome as he raced into my arms, hugged my tightly, and flashed his oh so sweet smile. He brightened my day!

Jacki Donaldson

Fear

About a week ago, I felt a small bump on the roof of my mouth, approaching where my throat starts. I could feel the bump with my tongue and then it would disappear or flatten a bit and I’d forget about it. Then it would come back but disappear again.

So tomorrow I am going to the dentist to have it examined. It could be a canker sore, something swollen from the cold and cough I had recently, or something completely not worth worry. But I worry about everything and anything that pops up — literally pops up, like this bump. I am hoping the dentist looks at it and says “no big deal” but I worry he’ll say he needs to take a piece for biopsy. And then will begin the same path I went through one year ago — the quest for answers about a suspicious bump. So I am unsettled tonight. Writing helps.

After the dentist tomorrow I go for my annual GYN visit which means I’ll get a breast exam and a PAP test — both screenings for cancer. Then I go for chemo and spend the rest of the day treating cancer. The theme of the day — cancer — is not so comforting.

This is when I have my darkest moments — at night. Right now my boys are sleeping. It’s quiet. And my mind wanders. I think this wandering will never really end and is a result of facing a life-threatening illness. Before cancer, I may have ignored this little bump in my mouth. Now I think the worst.

Jacki Donaldson

Peace of mind

Today I learned that my CA 125 test was negative. That means that there is no indication that I have ovarian cancer. But because I have breast cancer and the two are cancers are linked, I will continue to be screened for both. I also learned that Friday will be my last day of radiation. It was scheduled to end on Tuesday, May 31st but my radiation oncologist thought I could end on Friday and not come back after the Memorial Day holiday. She will adjust my treatment doses so that I get what I need this week. Four more days.

My real peace of mind came today from a discussion I had with my radiation oncologist. She is a well-respected doctor and has been highly recommended by many. So I have been interested in her opinion about my chemotherapy treatment but have been afraid to ask her. Since I’ve had two different opinions (one to continue with chemo and one to stop), I was scared she would say I should continue. I do not want to continue and do not think my body could even tolerate the treatment. But I still second-guess myself and have had some dark moments contemplating whether or not I cut myself short on treatment. This oncologist said I did not. She agreed that I should not have received Taxol, the drug I refused. Like others, she said the benefit would be so small and the toxicity could be so great. She said she would not have done it herself. And she said if I do have a recurrence of cancer, it will not be because I didn’t receive Taxol. This brings me great peace.

I hope to gain more peace of mind with my therapy — which begins tomorrow.

Jacki Donaldson

Overcome

I am overcome with emotion and fatigue. Today I had five medical appointments. First, I had my port flushed. This has to be done once every four to six weeks when the port is not used regularly. My port gets accessed with a needle and saline and a blood thinner are flushed through the line to keep it clean and clear.

Second, I met with my oncologist who told me he thinks having my breasts and ovaries removed at this time is a radical approach. He thinks I should give myself some time to think things over and to live life a bit after treatment. Perhaps my worry will subside when life becomes normal again. He also recommended that I take an anti-depressant for a few months to ease my mind. I’m thinking about it. I really don’t like taking drugs. But my doctor says sometimes cancer patients need to clear their minds — and this helps. He says some describe the effect of the drug as bringing them out of a dark room and into the sunlight. I’ve filled the prescription and it sits on my kitchen counter. Another decision.

Third, I went for my 16th radiation treatment and learned that I will have 12 more of what I’ve been receiving and then will get 10 “boost” treatments. After radiation and fourth, I met with a radiation oncologist — this happens once per week to monitor my skin and any other side effects. So far, my skin is not affected. My side effect is fatigue — which today seems to have tripled with my busy schedule.

For a break, I met John, Joey, Danny, my mom, and Jordan for a quick and hectic lunch. Then I dropped off a prescription and went to get my arm fitted for a lymphedema sleeve (to help with swelling due to lymph node removal).

Fifth, I met with my OB/GYN to talk about ovaries. He did an ultrasound and pelvic exam and like popular opinion, told me screening for ovarian cancer is not very effective. But from what he could see, my ovaries look fine. He told me they are not fully functioning due to chemo-induced menopause but he saw signs that they may return to full function. If they do not, he says there is no need to keep them and I could have them removed. But until he knows of my true menopausal state — which could take up to one year — he does not recommend removing them. There is no evidence that I will get ovarian cancer at this time. I will still have the CA 125 test done to see if there is any elevation in levels that detect ovarian cancer — but this too can be deceiving.

For the near future, I will continue my treatment without making any big decisions. For today, I think I will put the topic of cancer to rest.

Jacki Donaldson

Results & decisions

My genetic test is negative. That means I do not have a genetic mutation that caused my breast cancer and that my sister and children likely do not have a defective gene. It does mean I now have no idea why I got breast cancer. It could be sporadic or it could be familial (a family connection that cannot really be traced). This will remain an unknown.

The negative result is good news. But it leaves me a bit confused and lost. Had the test been positive, I knew what I would do — remove both breasts and ovaries too. Doing so would give me a 90% chance of not getting cancer in these two areas. Without the surgeries and with a positive test, there is a 60-80% chance of getting these cancers. With my negative test, my chances are not so high — but there is still a chance. And since I am young, I have many years to have a recurrence or a new cancer. To still remove my breasts and ovaries would give me that same 90% outcome, with other implications (two major surgeries and possible breast reconstruction, early menopause and many years of bone loss, no more children, etc.). I am a worrier so perhaps these surgeries would give me peace of mind. Perhaps this is a radical approach and I will be fine as is. So goes my next personal debate.

I will meet with my OB/GYN on Monday for some screening to look at my ovaries. I will have a pelvic exam, an ultrasound, and a test called CA 125. This is the only screening test used to diagnose ovarian cancer — and it’s not very good. There are many false positives and negatives which make it inaccurate. But it’s the only real tool available. So I will have this test done and see what comes of it. Unfortunately, ovarian cancer is typically caught late (in stage three or four) because of poor screening. Many women find out they have it because they start to feel symptoms. A reason to have my ovaries removed, maybe. Removing the ovaries also cuts down the risk of breast cancer since breast cancer can be fueled by hormones and hormones come from ovaries. Breast cancer is easier to screen — with self-exams, mammogram, and ultrasound — but even if caught early, like mine was, the journey is still cumbersome.

My plan for now is to talk with my oncologist, my OB/GYN, a psychologist, and a woman I just learned of who had her breasts and ovaries removed. She is in her 30s also and decided to have these surgeries as a prophylactic measure. Just as she opted for the surgeries, I know many women go on to live full and healthy lives after breast cancer — with their breasts and ovaries in place. It’s a personal choice. I just don’t know yet what my choice will be.

Jacki Donaldson

Suspense

All this waiting — five weeks — and tomorrow I will know whether or not I have a genetic mutation that caused my breast cancer. I will meet with a genetic counselor at 9:30 AM. I am nervous.

Jacki Donaldson

Good news

My head CT scan is normal. My headache is lingering this morning but I think Ibuprofen helped yesterday. From 5:00 PM until I went to bed, I felt completely normal. That felt good. I hope today follows the same path. Regardless, I know there is no serious cause of my headache and that brings relief.

Jacki Donaldson

More drama

Last night I did not feel well due to a horrible headache (I’ve had one on and off for 6 days now) and I thought maybe I was getting a fever again. So I called the on-call oncologist before I went to bed and he told me that the fever alone, without other symptoms, did not indicate a problem. I knew my blood counts were up, and I’d had a shot that very day to boost them further, so it was not that they were dropping. Another mystery — the headache. He said he would try to get me in for a CT scan of my head.

I did not get out of bed today until noon which is when I got a call that a CT scan was scheduled for me. After the scan, I was to go get my blood checked and get another shot for my blood cells. So I got the scan and then went for blood draw — which revealed that my white blood counts are up to 58,000. They were 1,200 when I was admitted to the hospital. So I did not get a shot today and won’t get one tomorrow as planned. The job is done in that area. My other counts looked good too.

So my counts are good and I do not have a fever. But the headache is holding me back now. I have some medications to try — some over-the-counter and one for migranes. I hope it’s just a temporary condition brought on by stress and tension and everything that’s been happening to my body lately. I should hear the CT scan results tonight or tomorrow.

If it weren’t for my headache, I think I would feel good. With counts at 58,000, I better.

Jacki Donaldson

Radiation

I had a consultation today with my radiation oncologist. I will begin radiation soon — maybe next week — and then if my genetic test comes back positive and I opt to have a bilateral mastectomy, I will just stop the radiation (without breasts, there is no need for radiation).

I am not so worried about radiation, although there are still side effects. I may feel tired. And I may experience skin redness, burning, itching, and irritation. Since I tend to burn in the sun, I am likely to burn from the radiation. Long-term side effects include damage to the heart, lungs, and ribs since they all are located near my breast and will be exposed to radiation. So I’m learning over and over again that to survive cancer, I must accept other potential health issues in the future. One author wrote about cancer patients that we should all be so lucky to live 20 years to have a heart condition.

There is a possibility of an arm condition as a result of having lymph nodes removed (I had four removed during my lumpectomy). This condition is called lymphedema — a swelling of the arm that can be permanent. My arm is not swelling, but I am being referred to a physical therapist who will work with me on exercises to help prevent the swelling. Doctors are trying to be more proactive about preventing it and not just addressing it once it occurs.

So radiation and physical therapy are on the horizon. And my blood test results should be back in 2-3 weeks. Then I will know if a genetic mutation is to blame for this journey.

What a crazy journey it is.

Jacki Donaldson