June 15 - Julie receives a forwarded email, an animation of a woman walking from one woman’s house to another’s, spreading the word about the symptoms of ovarian cancer. Julie reads the symptoms, and calls her doctor and makes an appointment. (More on her symptoms at the end of this post. If you’d like the email to be forwarded to you, request it from Diane at jakipp@comcast.net.)
June 18 – Julie is examined (internal exam) by a nurse practitioner who finds nothing to be concerned about, no tumor is detected, her ovaries feel fine, but the NP gives Julie the option of having the CA125 blood test. (From http://www.medicinenet.com/: “CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. CA stands for cancer antigen.”)
June 22 - Julie has the CA125 blood test. Her number comes back as 225, definitely elevated (under 35 is preferred) but not necessarily alarming; some people have numbers in the tens of thousands, and the test is known to have a high rate of both false positives and false negatives.
June 25 – Julie has an ultrasound which shows a tumor. Her doctor says she will definitely need surgery, cancer is a possibility but not a given, and the doctor wants Julie to see a gynecological oncologist in Spokane, Dr. Melanie Bergman.
July 10, Friday – This was the soonest Dr. Bergman could see Julie for an exam and consultation. The doctor has a rare cancellation in her surgical schedule, only three days away. Julie takes the spot; she’s had enough of waiting. She tells the doctor to take out everything that can be taken out.
July 13, Monday – Those waiting at home and at Deaconess Hospital begin to fear that the “benign” outcome that we were so sure of is not going to happen as the surgery takes longer than expected. Finally, the doctor tells Joe and Rob (Julie’s brother) that Julie has stage 3C ovarian adenocarcinoma, that surgical “debulking” was done (removing as much of the cancer as possible), and that Julie will need intraperitoneal chemotherapy as well as “regular” intravenous chemotherapy, so a port was installed during surgery to facilitate this. (Intraperitoneal chemotherapy delivers chemo drugs directly to the abdominal cavity.)
July 13 through 18 – Julie recovers in the hospital. She does well physically, and her attitude, unfailingly, is very positive. She is the favorite patient of all her nurses. On Friday a second port is installed for the intravenous chemotherapy. She goes home Saturday July 18 and continues her recovery there.
July 31 – Follow-up appointment with Dr. Bergman; everything looks good.
August 5 – A port check is done on the abdominal port pre the first chemo treatment. Bad news – the port is not functioning properly; scar tissue evidently formed after the surgery and since the chemo can’t go everywhere it is supposed to within Julie’s abdominal cavity, that therapy will not be done. Quel désappointement! (French doesn’t really make this any better.)
August 11 – First chemotherapy. Carolyn (one of Julie’s sisters) accompanies Julie to Cancer Care Northwest in downtown Spokane. Julie initially has some reaction symptoms (understandably, her body is not thrilled with being poisoned; reactions are common) but they subside. Chemo goes smoothly.
August 14 – Julie has typical fatigue for some days after chemo. The third day is the hardest, she has “achy bones” – in particular, her feet, ankles, and legs hurt. By the next day, the worst is over, just the fatigue remains but it lessens daily. Initially it looks like Julie’s hat collection (courtesy of talented friend Kathy) won’t be needed quite yet as there is no hair loss, but after a week to ten days, strands begin to fall out in large numbers. Julie has very thick hair – she can lose quite a bit before it becomes noticeable. She had her hair cut short a few days before, a transition step to help everyone get used to her looking different, before the anticipated complete hair loss.
August 21 – The neck pain starts, as detailed in August 25th’s post, “The Fun Never Ends.”
Note about Julie’s symptoms: Of the dozen or so typical symptoms of ovarian cancer, Julie had only 1 ½ - she had had a gassy, bloated stomach for a couple of months, and very mild constipation. Both are very common for many, if not most people, at least occasionally – see the “Warning Signs/Symptoms of Ovarian Cancer” post. In addition to the symptoms usually listed, Julie had two others, both of which indicate the presence not of cancer but of a tumor. For a couple of weeks, she had felt a “hardening” in her abdomen; at the time, she wasn’t even sure there was a change and it was only in retrospect that she realized the significance. She also felt some discomfort when bending over to tie her shoes, but she attributed that to (actually non-existent) weight gain. In the earlier stages of Julie’s cancer, she had no symptoms.
Saturday, August 29, 2009
Meals the Week of Second Chemo Round
For those of you who are local and may be concerned about the meal situation this coming week when Julie has her second round of chemo – her ward (LDS church congregation) will be bringing in dinner on Tuesday, Wednesday, and Thursday.
Friday, August 28, 2009
Julie's "PICC Up" Line
In spite of the blood thinners, which are thinning Julie's blood, the blood clot remains. Her doctors decided the port (site/cause of the clot) needs to be removed so Julie went to the (Spokane) Valley Hospital outpatient clinic today, where it was found that her blood was actually too thin for an invasive procedure, so Julie will discontinue one of her blood thinners over the weekend and will be retested Monday morning - if her blood has thickened a bit, the port will be removed Monday. (Guess which thinner Julie gets to temporarily discontinue - the pill or the shot in the stomach?) Whether or not the port is still there, it can no longer be used for her chemo, so a PICC line was inserted today - a less invasive procedure, from a bleeding point of view. (See below for PICC line definition.) Today is the first day that Julie’s neck is less painful, though it is still somewhat swollen from the clot.
From http://www.cancerbackup.org.uk/ and wikipedia - A PICC line is inserted into one of the large veins in the arm [usually near the bend of the elbow] from where it is threaded into the superior vena cava. (The superior vena cava is a large, yet short vein that carries deoxygenated blood from the upper half of the body to the heart's right atrium.) The initials PICC stand for peripherally inserted central catheter.
From http://www.cancerbackup.org.uk/ and wikipedia - A PICC line is inserted into one of the large veins in the arm [usually near the bend of the elbow] from where it is threaded into the superior vena cava. (The superior vena cava is a large, yet short vein that carries deoxygenated blood from the upper half of the body to the heart's right atrium.) The initials PICC stand for peripherally inserted central catheter.
Tuesday, August 25, 2009
The Fun Never Ends
Late Friday (the 21st) Julie developed a fairly significant pain in her neck which she probably would have ignored until her next doctor’s appointment had she not also developed a low grade fever on Sunday. She actually did not connect the fever with the neck pain and would have blown that off, too, but thankfully the fever finally jumped to 100.8 (her doctor has told her that the point of concern is at 100.5 degrees.) Joe took her to emergency, where a CAT scan showed that she had blood clots caused by her chemo port which is in her chest and extends up to her neck. (Blood clots anywhere have deadly potential, thus the thankfulness for the relatively elevated fever.) So now Julie gets to give herself a shot in the stomach, a blood thinner, twice a day for . . . she's not sure at this point how long. The fun never ends!
Julie saw her doctor today (not her oncologist, her regular doctor in Coeur d’Alene) who prescribed coumadin, another blood thinner, which she will probably need to take throughout the time she is receiving “chimiothérapie.” She has to have her blood checked fairly often to see if the thinners are doing their job, and to regulate the amount she takes. Because of the blood thinners, she has to be very careful about not being injured; a bump bad enough to cause a bruise will have to be seen by a doctor (immediately, not after a bruise actually forms.) She can exercise, but not strenuously – walking is the best bet. For now, she can continue her normal diet while the thinner is being regulated but she can't introduce any new foods that are on the "problem food" list.
Her neck was still sore as of today, and she was tired; hopefully the pain will dissipate, along with the clots, very quickly.
Next doctor’s appointment – Thursday the 27th, 8am – blood and port check.
Next chemo treatment - Tuesday Sept. 1.
Julie saw her doctor today (not her oncologist, her regular doctor in Coeur d’Alene) who prescribed coumadin, another blood thinner, which she will probably need to take throughout the time she is receiving “chimiothérapie.” She has to have her blood checked fairly often to see if the thinners are doing their job, and to regulate the amount she takes. Because of the blood thinners, she has to be very careful about not being injured; a bump bad enough to cause a bruise will have to be seen by a doctor (immediately, not after a bruise actually forms.) She can exercise, but not strenuously – walking is the best bet. For now, she can continue her normal diet while the thinner is being regulated but she can't introduce any new foods that are on the "problem food" list.
Her neck was still sore as of today, and she was tired; hopefully the pain will dissipate, along with the clots, very quickly.
Next doctor’s appointment – Thursday the 27th, 8am – blood and port check.
Next chemo treatment - Tuesday Sept. 1.
Thursday, August 20, 2009
Warning Signs/Symptoms of Ovarian Cancer
For all of you who are female, or know someone who is female, here are the warning signs of ovarian cancer, from www.mayoclinic.com:
Abdominal pressure, fullness, swelling or bloating
Urinary urgency
Pelvic discomfort or pain
Persistent indigestion, gas or nausea
Unexplained changes in bowel habits, such as constipation
Changes in bladder habits, including a frequent need to urinate
Loss of appetite or quickly feeling full
Increased abdominal girth or clothes fitting tighter around your waist
Pain during intercourse (dyspareunia)
A persistent lack of energy
Low back pain
Changes in menstruation
(Julie's addition - It's uncomfortable to bend over to tie your shoes.)
Symptoms of ovarian cancer are nonspecific and mimic those of many other more common conditions, including digestive and bladder disorders. A woman with ovarian cancer may be diagnosed with another condition before finally learning she has cancer. Common misdiagnoses include irritable bowel syndrome, stress and depression.
The key seems to be persistent or worsening signs and symptoms. With most digestive disorders, symptoms tend to come and go, or they occur in certain situations or after eating certain foods. With ovarian cancer, there's typically little fluctuation — symptoms are constant and gradually worsen. See your doctor if you have swelling, bloating, pressure or pain in your abdomen or pelvis that lasts for more than a few weeks. If you've already seen a doctor and received a diagnosis other than ovarian cancer, but you're not getting relief from the treatment, schedule a follow-up visit with your doctor or get a second opinion. Make sure that a pelvic exam is a part of your evaluation.
If you have a history of ovarian cancer or a strong history of breast cancer in your family, strongly consider seeing a doctor trained to detect and care for ovarian cancer patients so that you can talk about screening, genetic testing and treatment options while you are disease-free.
Abdominal pressure, fullness, swelling or bloating
Urinary urgency
Pelvic discomfort or pain
Persistent indigestion, gas or nausea
Unexplained changes in bowel habits, such as constipation
Changes in bladder habits, including a frequent need to urinate
Loss of appetite or quickly feeling full
Increased abdominal girth or clothes fitting tighter around your waist
Pain during intercourse (dyspareunia)
A persistent lack of energy
Low back pain
Changes in menstruation
(Julie's addition - It's uncomfortable to bend over to tie your shoes.)
Symptoms of ovarian cancer are nonspecific and mimic those of many other more common conditions, including digestive and bladder disorders. A woman with ovarian cancer may be diagnosed with another condition before finally learning she has cancer. Common misdiagnoses include irritable bowel syndrome, stress and depression.
The key seems to be persistent or worsening signs and symptoms. With most digestive disorders, symptoms tend to come and go, or they occur in certain situations or after eating certain foods. With ovarian cancer, there's typically little fluctuation — symptoms are constant and gradually worsen. See your doctor if you have swelling, bloating, pressure or pain in your abdomen or pelvis that lasts for more than a few weeks. If you've already seen a doctor and received a diagnosis other than ovarian cancer, but you're not getting relief from the treatment, schedule a follow-up visit with your doctor or get a second opinion. Make sure that a pelvic exam is a part of your evaluation.
If you have a history of ovarian cancer or a strong history of breast cancer in your family, strongly consider seeing a doctor trained to detect and care for ovarian cancer patients so that you can talk about screening, genetic testing and treatment options while you are disease-free.
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