Archive for April, 2005

Results & decisions

Friday, April 29th, 2005

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

Posted in My story, Tests | 5 Comments »

Suspense

Thursday, April 28th, 2005

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

Posted in My story, Tests | 1 Comment »

Physical therapy & more

Saturday, April 23rd, 2005

Yesterday I went for a physical therapy consultation. My therapist specializes in lymphedema which is a swelling of the arm that results from the removal of lymph nodes during a lumpectomy. I had four lymph nodes removed so I am risk for this condition. It can be a mild swelling or it can be quite obvious. It is usually permanent so therapists try to address the condition before it happens. There is no real prevention for it but awareness is still important. And radiation therapy can contribute to the swelling because it damages the effectiveness of the lymph nodes — which work to drain fluid from the body. When some are missing and others are damaged, fluid can build up and cause swelling.

I have a low risk of getting lymphedema — four missing lymph nodes is not so bad — but I will still be monitored. So yesterday I had my arm measured. My affected arm (left) was a tiny bit larger than my right arm but this is not significant right now. I was given some exercises to do at home to maintain good range of motion — I feel some tightening in my armpit — and I need to purchase a compression sleeve to wear on my arm if I experience swelling or if I ever fly on a plane. It is not recommended that I lift more than 15 pounds with my left arm (Danny weighs 30+) and I cannot ever have my blood pressure checked on this arm — or have a needle stick or any other procedure that could affect the flow of blood and fluids.

I will go back to physical therapy in two weeks and will be monitored throughout radiation — which is 1/3 of the way done now.

I just completed my 10th radiation session and have 23 to go. It is making me very tired but I have not experienced any skin irritation yet. I am prepared for something to happen in the next week or so. I am applying aloe vera gel and calendula (an ointment made from a flower) to treat my skin. When the burning occurs (which is expected), these will soothe my skin. I was told not to wear a bra throughout the whole radiation phase — or to at least wear something that is not tight or restricting on the skin that is being treated. Today I am wearing a bikini top because I have not found anything else that works. Since I can tie the string that goes around my back, I am able to adjust the tightness and pull it low enough that it doesn’t touch my affected skin. I tried jog bras and tight camisole shirts and wearing nothing at all. I am not comfortable without any support so I hope the bikini works out.

So now I am struggling to find the best bra and the best support — exactly what I was doing up until 1996 when I had a reduction surgery. And I thought then I was forever free of this problem. You never can tell what lies ahead.

Jacki Donaldson

Posted in Lymphedema, My story, Physical therapy, Radiation | 6 Comments »

I’m not alone

Tuesday, April 19th, 2005

Friendship:

quilt.Two weeks ago, three friends brought a very special gift to my doorstep — a hand-made quilt. The secret — that bunches of women from my MOMS Club group had been meeting and creating a patchwork of support for me — never got out. I was surprised and flattered and honored that so many moms contributed by cutting and sewing and assembling this gift for me. Twenty-one moms signed my quilt — they signed their names and wrote messages like “before flowers grow, there must be rain. You will get a whole garden!” When I wrap up in my new quilt, I know I am not alone.

Survivorship:

Cancer walk.This past Friday, I participated in the Gainesville Relay for Life event. Sponsored by the American Cancer Society, this is an all-night walk for cancer survivors and caregivers and community supporters. I didn’t walk all night — but I did walk the survivor lap where my name was announced, along with all other survivors who walked with me.

Cancer walk.My support team was with me at the event — John, Joey, Danny, my mom, my sister, and my niece Jordan. We got a free meal and I got a free purple t-shirt. We listened to music and visited with friends. They boys ate snow cones (Danny shared his with me) and played in a pile of dirt. And we took in the sights — which were dominated by purple shirts worn by those who are surviving cancer. Some were younger than me; some older. Some were men and many were women. Regardless, they are like me and I am surely not alone.

Partnership:

my profile.Yesterday I had three appointments. I received my sixth radiation treatment and then met with a radiation oncologist. Then I met with my medical oncologist — this is the doctor who oversees chemotherapy and monitors me for five years after diagnosis. This oncologist is the one who told me I do not need to continue chemotherapy and who seems genuinely concerned with my health and well-being. He takes time to answer my questions (I always have a lot) and he reminds me that I am not alone — he is my partner as I navigate this breast cancer journey.

Posted in Inspiration, My story | 4 Comments »

Zapped

Monday, April 11th, 2005

I’ve been zapped. Today was my first radiation treatment — one down and about 32 more to go. It was a pretty uneventful treatment, really. I was in my reclined position with no shirt or bra and just a pillow case resting on my chest. The pillow case was positioned so that my left breast was exposed. My head rested on my very own personal mold, and I had to breathe using an assisted breathing device (a plastic tube). Clips were placed on my nose so that I could only breathe out of my mouth and into the tube. Two therapists got me set up and then left the room. Then a voice came over a speaker and said, “When you are ready, take a deep breath and hold it.” I have to hold my breath for about 15 seconds while the treatment machine delivers the radiation. Then the voice says, “You may breathe.” The reason I have to hold my breath is because my heart is located behind my left breast. To minimize the exposure to my heart, I hold my breath which moves my heart out of the way while the radiation occurs. After about four different zaps (I hold my breath for each one), I was done. Besides a machine moving around me, I could not tell anything was happening. I didn’t hear anything or see anything or feel anything. It was less invasive than a tanning bed. I may see some effects with time — apparently most people experience burning or blistering skin and some people report fatigue as a side effect.

I do have a few more markings on my skin — blue ones this time. Eventually, I will not have marker all over my skin. But during the first few treatments this is necessary for lining me up correctly with the machine.

Blue must be the color of the day. I got a blue card at my appointment which I will use to automatically check in for radiation each day. I slide the bar code of my blue card under a machine and then wait. Then I hear my name announced over a speaker. Then I walk to waiting area “C” until my designated therapists come for me. I will see the same four therapists until my treatment is complete.

Until my treatment is complete, I also see my radiation oncologist once per week so she can check on me — mainly to see how my skin fares through the ordeal. I saw her today and all is well so far. And I learned from her that about 90% of breast cancer recurrences happen in the same general area as the first cancer — so the purpose of radiation is to attack the local area, while the chemo attacks cells that may have gotten away from the breast and landed somewhere else.

I go back again tomorrow — and the next day and the next day and the next day, until the end of May rolls around. I hear that I have to look at this phase of treatment as a job in order to not burn out completely. Fortunately, this job only lasts for 6 1/2 weeks. And then I can get back to my other job — full-time mom — without this distraction.

Jacki Donaldson

Posted in My story, Radiation | 8 Comments »

Simulation

Friday, April 8th, 2005

Preparing for radiation.Today I had a simulation for radiation — which begins Monday and goes on for 6.5 weeks, 5 days per week. The simulation is kind of like practice for the actual radiation treatments. The key to radiation is delivering the same exact treatment in the same exact manner each day. So each time, I will rest on my back and my head will sit in a mold (made just for me). I have tiny little permanent tattoos (dots that look like moles or freckles) that serve as guides so the treatment machine lines up correctly each time. A therapist pulls and pushes me around on the table to get me in the right position. And in preparation for my very first treatment on Monday, I now have black and red markings all over my body. When Danny saw the writing all over my body, he said, “paper” because we tell him all the time that he can only write on paper (and not on walls, floors, furniture). He must be very confused.

Before today’s appointment, I had my blood checked again. It’s normal — and my white blood cells have dropped from 58,000 to 34,00. It appears that I will return the normal range of 4,000-10,000. And I appear to be healthy enough to begin radiation on Monday.

I feel pretty well — and my headache is mostly gone.

I am truly taking one day at a time now. Today I feel well and that’s great. But there is no predicting what tomorrow will bring — it could be a good day; it could be a bad day. I’m taking small steps.

My next step involves dinner!

Jacki Donaldson

Posted in My story, Radiation | 8 Comments »

Good news

Tuesday, April 5th, 2005

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

Posted in My story, Side effects, Tests | 6 Comments »

More drama

Monday, April 4th, 2005

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

Posted in Chemotherapy, My story, Side effects, Tests | 3 Comments »

Discharged

Sunday, April 3rd, 2005

I am home from the hospital—hopefully for good this time. After my first hospital stay, I had in my head that I couldn’t go through that experience again. And I thought there would be no reason that I’d need to. Until March 30. On that day, I felt once again that my body was struggling in so many ways.

For the past 4 1/2 days, my emotions have been like a yo-yo. At first I was told that it is very odd for blood counts to drop again without another chemo treatment to precipitate a drop. I have been without a chemo treatment for four weeks. And I should have been healthy after my first hospital visit where I got new blood and a clean bill of health. So this second drop was a mystery. My first team of doctors (an attending oncologist and team of residents) were stumped. One doctor even paced my room saying, “You know this is odd, don’t you?” He just couldn’t figure out why this had happened. He told me I might need a bone marrow biopsy to determine what was going on. The worst-case scenario could include a diagnosis of leukemia or lymphoma—both cancers. I lived with that fear for several days. I worried and cried and was completey unsettled. I already knew there is a chance of getting leukemia as a byproduct of chemo. But I was still shocked that this would be considered for me.

I never got the bone marrow biopsy. I was monitored for a few days, received IV antibiotics, and had my temperature taken religiously. Although my fever never dropped and my counts never increased, something good did happen. I got a new team of doctors

On the first of each month, a new team takes over. My new team never even considered a biopsy. The attending doctor believed I had a viral infection (due to my severe sore throat). He did not believe it is odd for counts to drop four weeks out from chemo. And an onset of a virus would bump them down even more. He added an anti-viral drug to my treatment plan. It worked. My sore throat was better the next morning. He also ordered injections of a growth factor to grow my bone marrow, which stimulates the growth of blood cells. This worked too. After two shots (one per day), my counts were even higher than they were when I was discharged from the hospital the first time. These injections do cause aches in my bones but this is manageable for now.

I will go to my oncology clinic on Monday and Tuesday for more shots and to have my blood checked. I’ll take an oral anti-viral medication at home to make sure the virus is gone. And I’ll hope this never happens again. If it does, a bone marrow biopsy may be necessary. Although there still is a chance that they will drop a bit due to radiation which is to begin in a week or so. If only I can breeze through this portion of the treatment.

There is no way to clearly express my feelings in writing about this whole ordeal. I can say that I’ve been up and down and sad and hopeful. I’ve sobbed and smiled and questioned and wondered. I mostly know that I will be okay when this is over. But sometimes I look at Joey and Danny and think about what their lives would be like without me. This is not negative thinking. I really do have a positive outlook, and I know I will fight whatever comes my way. But cancer brings mortality to the forefront. We are all going to die—some at an early age; some at an old age. But the gift for many is not knowing when it will happen. I don’t know when it will happen either, but my illness can be life threatening and the possibility for me seems more apparent now than before my diagnosis. So I am searching for the strength to live each day to the fullest, knowing tomorrow is not a guarantee. When my body is weak and sick, this is harder to do. But I feel so much better today so I think my yo-yo emotions should start to taper off. I’m going to start talking with a psychologist too—she focuses on young women with breast cancer—and I think she will help me put all my thoughts into perspective.

It is so good to be home. I’ve been without my boys for too many days. They sure are a sight for sore eyes—all three of them.

Jacki Donaldson

Posted in Chemotherapy, Counseling, Hospitalization, My story, Side effects | 5 Comments »

Update

Saturday, April 2nd, 2005

Jacki is on the mend. Her fever appears to be breaking and some cell counts have risen. Others are a bit low, but doctors believe they will recover soon. Her recovery is a result of two different antibiotics and a daily shot of a human growth factor indented to grow bone marrow and stimulate growth of blood cells. There is no plan for a bone marrow biopsy at this point. That’s good news.

Jacki’s current symptoms include periodic headaches and aching in her back and legs. The aching is a side effect of the injections.

There’s a possibility that Jacki will be home in a day or so and will be monitored by outpatient visits to an oncology clinic. We’re hoping for the best, yet are prepared for anything.

John Donaldson

Posted in Chemotherapy, Hospitalization, My story, Side effects | 3 Comments »