Another hospital stay

I took Jacki to the emergency room at 5:00 AM after she woke up with a fever, chills, sore throat, sore gums, and a headache. We already knew her white blood cell counts were low and she’s been told to report any of these symptoms to a doctor immediately. So she called the doctor on-call who told her to report to the emergency room. After 10 hours of receiving care in the ER, she was admitted. She’s now resting in a private room. She’s receiving an IV antibiotic to treat the fever and her blood counts will be monitored with the hope they will all rise. In addition to the white blood counts, other counts have dropped.

The reason for this fever and the drop in blood counts is a mystery. After the first hospital stay and treatment, everything should have been on the upward climb. Doctors will meet at length tomorrow to discuss the situation. It is possible Jacki may receive a bone marrow biopsy to further investigate the problem.

More to come.

John Donaldson

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White blood cell count

My white blood cell count is down again. I was worried about it so had my blood drawn yesterday after my radiation appointment. I called this morning to get my results and learned that it has dropped since my departure from the hospital — it was 3,400 then and now it’s 1,200. It was 700 when I first was admitted to the hospital so it’s not the worst it’s ever been, but it’s low. All other blood counts are normal (like red blood cells which were replenished with my blood transfusion).

My new oncologist is not worried at this time. He says it’s just a delayed recovery from chemo. If I end up with a fever, I will call and notify him.

I had been worrying about my blood for a few days because I’ve been so tired. By early afternoon, I am fatigued and in the morning, I feel like I could keep sleeping and sleeping — even after 8-10 hours of sleep. So now this makes sense. And hopefully I will be on the mend with each day that I move further away from chemo.

Jacki Donaldson

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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

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Heat wave

I’m having hot flashes. This is one of the many side effects of chemo. I’d been hoping that I’d had my fair share of side effects with nausea, hair loss, dizziness, fatigue, hospitalization, allergic reactions, and a blood transfusion. I thought hot flashes might just pass me by. But they didn’t. So now I feel these brief waves of heat come over me. I can feel completely comfortable and within seconds, I am warm and then hot and then my head starts to sweat, which is a really strange sensation when I’m not wearing any hair. Instead of just dampening my hair, the sweat makes my head drip — instantly. This happens mostly at night when I wake to find I am burning up and my head is wet.

These hot flashes are a symptom of menopause. Usually, the closer a women is to menopausal age, the more likely she is to be pushed through menopause as a result of chemo. Since I am young, I am likely to feel the symptoms but then reverse back to my pre-menopausal state.

The hot flashes are annoying. But they are not horrible. In the past, without having endured chemo, I probably would have whined about them. This is minor compared to how bad I have felt.

Chemo is by far the worst thing that has happened to me. It seemed tolerable for my first three treatments but after my fourth dose of drugs, it challenged every fiber of my being. One of my drugs, Adriamycin, was called “Kool Aid” by my chemo nurses. It is bright red in color. I had heard other patients call it “the Red Devil.” Now I know why. Those who experience it know it’s nothing like “Kool Aid.” It truly is the devil.

On the bright side — I have survived the devil and hopefully will never see it again. I am coming out of my fog and feel generally well. My hair should get longer with each day (I should have about six inches within one year). I am living without the fear of drugs and side effects and sickness. And it’s sunny and 80 degrees in Gainesville.

Today is a good day.

Jacki Donaldson

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A hospital & a beach

Emailing at the hospital.My hospital costume — mask, gloves, hat, and an IV that travelled with me much of the time. I was hospitalized for neutropenia (chemo-induced fever and low blood counts) and received a blood transfusion on hospital day #4. I went home on day #5. March 11-15, 2005.


Us at the beach.Crescent Beach, Florida — a few days after I was discharged from the hospital. I was away from my boys for four and 1/2 days while in the hospital. Watching all three of them play in the sand and surf was a beautiful sight. March 17, 2005.


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Escape

I made it to the beach. My mom, Joey, Danny and I arrived at Cresecent Beach, near St. Augustine, on Thursday afternoon. John joined us Friday at a friend’s beautiful condo and we had the time of our lives!

For me, knowing that I no longer have to endure chemo, everything is so much more simple — and it didn’t really matter at all that the temperature when we first arrived was in the 50′s with no sign of sun. I still sat on the beach and watched Joey run in the freezing cold water. And it was not so horrifying (although a bit embarrassing) when we took our first walk on the beach and the strong wind blew my hat off. I was left standing with just my wig (there is no hair on the top of it which is why I wear hats. Without a hat, it looks like clown hair). My wig was flapping in the wind as I tried to hold it down on my head. My mom chased after my hat and then helped me get it back on my head. It was full of sand and salt water so we quickly made an escape back the condo.

Our four beach days were full of sand and surf and Gator basketball. We took a trip to an alligator farm and went out to eat. We watched videos and danced and slept well too! John and I went out to dinner — alone — and we all enjoyed every minute of our escape.

My escape to the beach will forever remind me of my escape from chemo — which has brought me more peace and happiness than I think I have ever felt.

Now if I can just keep my hat on until my hair grows back!

Jacki Donaldson

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A second & third opinion

I changed oncololgists. I did not feel much warmth from my first doctor and needed someone who would be a partner with me in my medical decisions. So yesterday, I met with my new doctor. He told me something I did not expect to hear — that I do not need Taxol, the drug I was to receive via chemotherapy for the next eight weeks. I liked his opinion since I felt really apprehensive about this next round of chemo. He told me some doctors rely a lot on computer programs that spit out statistics on recurrence and mortality. He likes to balance statistics with intuition. And his intuition is that the side effects of Taxol, some potentially long-term, do not outweigh the benefit of receiving this treatment. In essence, receiving Taxol would be an overtreatment for me.

But the decision is ultimately mine — and all last night I was plagued with what to do. So I called my doctor this morning to ask him one more question and he told me he’d been thinking of me since our appointment yesterday. He said he called another well-known oncologist in town and shared my history. They did some research and concluded that with Taxol, I may have a extra .7% chance of survival. Both doctors agreed they would definitely not use Taxol for me. My doctor said that if his wife was in my same situation, he would not advise her to go forward with treatment.

So my decision is made. I will not continue with chemotherapy — which means it’s over! No more drugs. No more side effects. No more hospital trips. My hair can start growing back.

There are some other big things coming my way. I will give some blood in the next few days for a genetic test that will determine if I have a breakdown in a gene that may have caused my breast cancer. If I test positive for this breakdown, the implications are huge. It will mean I have a pretty good chance of getting breast cancer again. And my chances for getting ovarian cancer will be high also. Some women who test positive opt to have their breasts and ovaries removed which cuts down on the risk significantly. If I were to test positive and proceed with the surgeries, I would not need radiation. If I test negative and keep all my body parts, then I will have radiation. It takes four weeks for the test results to come back so within a month or so, I should know which path I might take. But that’s all in the future and I’m going to live in the present right now and enjoy the complete relief I feel that chemo is behind me.

I have long felt that something was not right with this next round of chemo. My gut told me not to do it. But my head argued with my gut and I was completely torn. Just as I gave in and told myself that I must go on, this change of events occurred. I should have trusted my gut.

Jacki Donaldson

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Home sweet home

I am home. And I am fine. My skin rash is a bit worse but otherwise, I feel pretty good — and some good lessons came my way during the past few days.

I learned that I can let go of my responsibilities and that life goes on. In the hospital, I had control over nothing. There was nothing I could do about my health, my kids, my house. Despite this, everything is fine. I got well. My kids did great. And my house is just as I left it. This is largely due to John — who became a full-time dad and excelled at the job. He even kept the house clean, did the laundry, and found time to visit me at the hospital — thanks to my mom who filled in when John was away. Thank you John and mom for taking over and for keeping Joey and Danny so happy.

Thank you also to my friend Bev who watched Joey and Danny today so John could work and my mom could be with me at the hospital. Joey and Danny have been left with non-family members on only a few occasions . Joey has loudly protested each time (Danny does fine). So I’ve protected Joey and have avoided leaving him. I predicted today would be a challenge, and it made me nervous as I watched the hospital clock this morning in anticipation of Bev’s arrival at our house. But there was no protest. Joey welcomed Bev, allowed John to leave for work, and played like he always does. I am so relieved. And I am so happy to be home.

Jacki Donaldson

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New blood

I have never been a blood donor — well, once I was. I donated blood once at Kent State University while going to college. But I got dizzy and thought I would faint as the blood was being taken from me. Someone had to ring a bell and someone else came running with a special red chair and wheeled me away. I think I got cookies and juice and was saved. I never gave blood again. But today, because of all my dizziness and low blood counts, I received blood. One bag of blood has gone into my body already and I’m waiting on the next one. It’s been strange, watching someone else’s blood, 0+ like my own, drip into my system. It is definitely a gift. Maybe once I am well, I will try again to donate so someone else can receive such a gift.

I feel pretty well right now. I do have an allergic rash on my chest and back — it was determined that I am probably allergic to the antibiotic that has been dripping into me for the past three days. So the IV antibiotic was stopped and now I’ll take an oral antibiotic for a while. I’m hoping the rash does not get worse — and that I continue to feel well. I really want to go home.

Jacki Donaldson

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My hospital stay continues

It’s Monday — and I’m still in the hospital. Some of my blood counts are up but others are down. So today I will get a blood transfusion to raise my red blood cells. Maybe I will go home tomorrow if all goes well.

I got to see my boys today — after three long days. John brought them to a family room near my floor and I got to visit while wearing my mask. Joey said I look like an alien. He may be right.

Jacki Donaldson

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A getaway

Yesterday was the day we planned to go to the beach — me, John, Joey, Danny, and my mom. We planned to relax, play on the beach, and dig in the sand. I didn’t feel well but I thought the break would be good for me. I wanted to clear my mind and return to Gainesville with a positive attitude about my next phase of chemotherapy.

I got my getaway — but I never made it to the beach. Instead I had a one-way trip to the hospital. I don’t know when my return trip will be.

So now I sit at a computer in a little room on the 4th floor of Shands Hospital. I have a mask over my mouth and nose and gloves on my hands. An IV pole sits next to me, with antibiotics and other fluids dripping into my port. I’m staying in a room with special air flow to minimize the chance of infection. I’m restricted from receiving flowers or eating foods grown in the ground. Every time I leave my room, I have to wear a mask and my kids are not permitted on this floor. All this because of low blood counts and a fever.

I never felt well following my last chemo treatment on March 4th. In addition to the crummy way the anti-nausea drugs made me feel, I began feeling generally unwell. I felt lightheaded and dizzy and could hardly stand up after my shower yesterday morning. So when my mom and I went to a genetic counseling meeting yesterday at 9:00 AM (prior to our beach departure), I told her I would have my blood drawn to see if my blood counts were okay. So I had my blood drawn, walked just around the corner for my counseling appointment and sat for an hour learning about a blood test that can determine if I have a breakdown in a gene that may have led to my breast cancer. After the appoinment, I was handed a mask and whisked into an exam room. I was told my white blood cells were low — they were 700 and should be between 4,000 and 10,000. With this and a fever of 100.4, I was considered “neutropenic.” This sometimes happens with chemotherapy. Cells are attacked and immune systems suffer. I never expected this to happen to me — the shots of Neulasta I receive the day after chemo are intended to prevent this — but I hear now that many women are hospitalized at least once during chemo. Antibiotics are the course of treatment, to break the fever, and IV antibiotics are the fastest method for addressing the problem. So I went to my usual infusion room for my first dose and then was transferred to the main hospital for the rest of my treatment and observation.

My fever is gone. And my white blood cells are up to 1,200. But these are still too low to go home. The doctors say I may go home tomorrow (Sunday) or maybe Monday. They are looking for a trend that I am steadily getting better. And while I really would like to be home in my own bed, I am okay here. My mom spends the day with me while John takes care of Joey and Danny. Then my mom gives the boys dinner and a bath while John joins me for dinner. I know I am safe and protected here — and I am going to get well.

This is a getaway, really. And it’s probably just what I needed. When I look back on the past week, I don’t know how I was surviving. I kept going because I thought I had no other choice. I went to playgroups and registered Joey for preschool. I played in the yard and washed and vacuumed my car. But things happen for a reason — and for some reason, I knew on Friday that someone needed to look at my blood. Thank goodness for that genetic counseling session that got me on the oncology floor that day. Had I not been going for the appointment, I may not have thought to stop by for a blood draw. Now I know when to turn myself in for a hospital getaway.

Now I also know that I must continue with my chemotherapy — only eight weeks remain — but I am going to slow down the process a bit. I am going to push my next treatment from this coming to Friday to the following Friday. I think I need an extra week to recover and to feel normal before my body gets blasted again. Hopefully it won’t get so bad this time — and if it does, I will have to conquer it. I now know that my best attack on this disease is the first attack so if I quit now, I can’t ever go back. So I’ll do it now. And somehow I will survive it.

Jacki Donaldson

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Ups & downs

The drugs I had for this round of chemo kept me from feeling sick this past weekend. But for the past day or so, I have felt foggy, incoherent, sleepless, and like I want to jump out of my own skin. And I now feel a bit nauseated and queasy. I guess there’s a trade-off for everything. I had a good weekend — but all I really did was buy some time and then borrowed some additional side effects. I guess the combination of nausea drugs, anxiety drugs and steroids were bound to catch up with me.

So now I am trying to rid my body of these drugs. And I am faced with the sickening feeling of putting more drugs into my system during my second phase of chemo. I want to stop. Yet I don’t want to worry and second-guess myself in the future. I want to ensure I have the best chances of surviving this disease but I don’t want to feel crummy in the present. And right now, I do.

Time for some soul searching — after I take a nap!

Jacki Donaldson

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A better sunday

Today was a much better Sunday than last. The combination of drugs must be working. I woke up feeling well, took a walk with my mom and Danny, and spent much of the day outside in the beautiful weather, watching my boys play while John did lawn work. I rested a bit this afternoon but still feel pretty good. I am now waiting for a meal to be delivered — we have received so many meals from kind friends over the past few days — so we will dine in and relax for the evening.

All should be well for this week, if I continue on schedule. I just have to control my hiccups — these are a side effect of one of my new drugs, and they keep coming and going. My hiccups are loud, if you’ve never heard them. My mom and sister have even been known to walk away from me in public when I have them — out of embarrassment! But hiccups are the least of my worries, so I’ll take them!

Jacki Donaldson

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Another post-chemo day

Last night I felt horrible and went to bed at 8:00 PM. But before I went to sleep I took a handful of pills I am armed with this time. Since the Zofran alone did not work well last time, my oncologist gave me Emend, Decadron, and Ativan — all for nausea and some for anxiety as well. So I took them all, doubled over in bed, and now this morning I feel well. I am about to take them all again this morning, and then tonight, and then in the morning. I hope this will get me through my usual tough weekends.

Time will tell.

Jacki Donaldson

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Chemo #4

Today I had my last chemo treatment with the Adriamycin and Cytoxan drugs. I have had a total of four treatments and now they are behind me. But I have four to go — with a different drug called Taxol. I’m worried about this one — it has nerve implications and other potential side effects. My hands and feet may tingle or go numb. I may notice changes in my nails. I may feel aches in my joints and bones. And what I dread most is that I may gain weight from the steroids I will take to prevent allergic reactions to Taxol. But I hear nausea and vomiting are not very common with this drug so that’s a plus.

I worried a lot about the Adriamycin and Cytoxan too. While I have felt some nausea (and may again this weekend), my experience has not been horrible. I think some women have worse pregnancies than I’ve had with my first chemo experience. So I will hope my side effects with Taxol will be minimal. And if for some reason I cannot tolerate the drug, there is another drug that can be substituted (Taxotere). Interestingly, I was told Taxotere was the drug I would have. But my oncologist decided on Taxol instead because it’s been around longer and has more research backing it.

I didn’t have my private room today. But I did have my mom, Tracy and Jordan with me. And I had two new visitors — my friend Bev and her baby Etta. They brought me beautiful fresh pink tulips and helped take my mind off the chemotherapy. Despite the ill feeling this disease still gives me, the gifts that come from cancer are endless. Friendships are deeper. Love is stronger. And a walk on a beautiful day is truly appreciated.

My mom, Jordan and I took a walk once I got home. It was sunny and crisp and perfect.

Jacki Donaldson

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