Cancer Free!!! (?)

Julie had her post-chemo CAT scan on Tuesday Dec. 8, and Friday the 11th saw her surgeon for an exam and to find out the results of the scan. Julie qualified to be pronounced officially “cancer free,” with one little tiny temporary question mark. The surgeon said there is a small unidentified something or other that shows on the scan; she is confident it is not cancerous, it is probably a leaking fluid-filled sac related to a lymph node removal that was done during surgery and it could go away on its own, but she wants Julie to have a follow up scan in three months in order to go from 99.99% sure to 100% sure. Julie also finally got her PICC line out today – Joe was curious and asked to see it after the removal, which is when Julie saw for the first time that the line resembled a short, skinny garden hose; it had snaked up her arm to her shoulder and down almost to her heart, much longer than the few inches she had been picturing. Just as well that she didn’t know that when it was inside her. She is very glad the PICC line is gone as now she can stop wrapping her arm up in plastic wrap every time she takes a shower – one of life’s little luxuries.

Julie is now accepting congratulations on her cancer-free status. But expect to see the hats or wig for a few more months; it takes that long to achieve noticeable hair growth, and anyway it would be a shame to waste such an extensive hat and scarf collection. It also takes a minimum of six months for the body to recovery from the ordeal of chimiothérapie and regain strength and functioning, so Julie will continue to be more tired and have less stamina for awhile longer. In order to both regain strength and avoid a recurrence of cancer, it’s essential that Julie (and all post chemo patients) eat in a very specific way, exercise consistently, avoid stress and get enough rest, not just for the next six months but permanently.

Mission Accomplished

Julie’s 6th and final round of chemo was Nov. 24th. Here is some of the information she got when she saw her doctor that morning:
her blood counts are very good;
she will have a CAT scan and an examination in December and, assuming nothing is found, and the doctor is 95% sure nothing will be and Julie’s sister is 99.99% sure of the same, Julie will officially be in remission/disease free/ in surveillance mode;
she will see her doctor every three months for the next two to three years, then every six months until the five year post-chemo) mark;
it takes at least six months to recover from chemo;
ovarian cancer does not put one at increased risk for other vaginal cancers;
ovarian cancer does carry an increased risk of colon and breast cancers;
Julie’s (useless) abdominal port will be removed in December by her surgeon (it’s an outpatient surgical procedure);
her PICC line will be removed in December; and,
some of the things that help reduce the likelihood of a recurrence of cancer are exercise, sleep, healthful eating including less dairy products and meat, and minimizing stress.
These are the websites that the doctor recommends to get accurate, up to date information about cancer: the American Cancer Society website - http://www.cancer.org/; and http://www.thegcf.org/ .
The rule of thumb post-ovarian cancer as to when to be concerned about a new symptom or symptoms – something that persists or gets worse for longer than two weeks, especially if there is no clear benign reason for the symptoms. For example, a post-ovarian cancer female on a “nothing but cabbage soup” diet for two weeks should expect a lot of gas and bloating, but two weeks of increasing gas/bloating on her usual balanced diet would be a good reason to call the doctor.

Back to the last round of chemo – it went smoothly, and at the end, the nurses played Kool & the Gang’s "Celebrate Good Times,” blew bubbles, and gave Julie a mug, a certificate, and a happy send-off. She has had a few days of discomfort and fatigue so far, but by Saturday at least felt well enough to eat a delayed Thanksgiving dinner and spend a couple of hours with family.

A side note – Julie and sister are fashion forecasting that hats - les chapeaux, in keeping with the spirit of this blog - will soon be very “in,” more so than they have been for 50+ years, due to so many women discovering how cute they are, either through their own hair loss experience, or by observing other women wearing stylish and/or fun hats. And aside from how fashion-forward hats are, it is so much faster to pop on a hat than to wash, blow dry and style a full head of hair. Not that Julie won’t enjoy having her hair back; hats are even more fun when they are an option rather than a necessity. Speaking of which, it will be at least March before she has even a very short hairdo, so she will continue to keep her head warm with hats over the winter, and, given that she has quite a collection, she will probably wear them as a fashion statement even after she has plenty of hair.

Happy Birthday, Julie

Julie’s birthday was Sunday (Oct. 25th); she is handling the transition to “over 49” quite well and so far seems to be suffering no excessive side effects. She and Much Older Sister flew to Portland to spend the birthday weekend with Slightly Older Sister. Ikea, Goodwill, and Spanky’s Consignment Store were party central; in fact, Julie consented to tour Ikea in a wheelchair in order to conserve her strength for the other venues and for playing with the great-nephews. In retrospect, she would probably advise other wheel chair users not to allow an inexperienced push person to be their escort through a store like Ikea that is crowded with lots of turns, but fortunately none of the bumps turned into bruising. Also fortunately, by the weekend Julie’s flu had calmed to cold status and this week she continues to feel a little better every day.

Chimiothérapie Round 5 is Tuesday Nov. 3.

Family Photo

Back row, left to right - Joseph holding his son Joey (2), Jennifer's husband Jesse. Middle row, l to r - Joseph's wife Christy, Joe, Julie, Jennifer holding son Isaac (4.) Front row - Janessa, Jillian holding little brother Jackson (4), and Julianna.

Chemo Patients Should be Officially Excused from the Flu

Unfortunately Julie's last chemo coincided with the flu's big surge in our area; about the time her post-chemo symptoms were at their worst, she also developed either the flu or a really fantastic imitiation of it. She had a fever today in addition to the cough she's had for several days so Joe took her to urgent care; she's bringing home medication that will hopefully help.

Round Four

Julie had chemo round four (of six) today. All went well, and now she's facing several days of being extremely tired. She also saw her surgeon today who said that Julie's tests indicate that the chemo is doing what it is supposed to do (beat the cancer into submission - my words, not the doctor's!), and that her body is tolerating well the assault that chemo is.

Julie continues to have blood draws several times a week to monitor the blood thinner she is taking to prevent a recurrance of blood clots. (10-18 Correction - Julie only goes in once a week for a blood draw, at this point.)

Thank You

From Julie:
It's about time I sent out a huge thank you to everyone who has been so incredibly helpful in so many ways to me and my family since all this "cancer fun" started. (I'm a little slow these days in more ways than one!) From food, visits, to trips to the doctor, to helping with Jackson's entertainment, cards, emails, magazines, new headwear, ironing, and so much more....I really couldn't be doing this without all of your support and prayers. I truly have the best family, friends, co-workers, ward family, neighbors, and some people I don't even know who hear what I'm going through and offer help. I don't want to name any names right now because I fear leaving someone out and you are all so great. So it's not much, but thank you :)

Round Three

Julie's third chimiothérapie treatment went well today. She was also told that her bloodwork numbers look good - hooray! We're praying that the post-chemo side affects of the coming week are no worse than they were after Round Two, "just" acute tiredness. The exhaustion is debilitating, but much more tolerable than The Symptoms That Cannot Be Named (for fear of jinxing Julie - maybe "Lord Voldemort symptoms" could be the code name for those unwanted symptoms.)

Round Two Plus Eight Days Post Chimiothérapie

Julie is feeling much better this week. Post-round two seems to have gone more smoothly than post-round one did.

Hair Today, Gone Tomorrow

(This post was written by Julie) Okay, I admit it's a goofy title, but you get to make bad puns when you have "chemo brain.” Apparently a lot of things are allowed when you have a serious illness and people feel really bad for you; I plan on taking full advantage of that. Bad jokes, bad hair days, pretend food cravings when you just want your husband to get you a snack...it's all part of the cancer package!Just thought I share the "hair news." Two weeks to the day after my first chemo treatment I noticed the hair coming out. (The exact timing another chemo friend had told me her hair started shedding, so I was warned.) I have a lot of hair so it wasn't really noticeable, and I had already had my short "transition" haircut to make the move from thick-hair to no-hair not so shocking. But after a few days of hair all over the sink, bottom of the shower, and worrying about it getting on things in the kitchen, I decided to take it all off. It seemed better to get it over with than worrying about doing it. So Jackson and I had a little "head shaving" party. Joe did the honors with Jackson going first. We were leaving some on his head, just giving him his last buzz of the warm weather. It doesn't look so great as our clippers are not the best. We'll have to fix it up a bit. I went next and as we were taking it all off it didn't matter what it looked like. Jackson kept running into the room to laugh at Mommy's funny haircut and offered to hold the mirror up so I could see it. I wasn't quite ready for that yet. Joe did a great job and I am now officially a part of the hat/scarf world. It's definitely low maintenance! It will take some getting used to but that will come with time I'm sure.

The Port Is Out

Julie's port removal went smoothly this morning; she handled it with her usual positive attitude and good humor.

Next chemo - Sept. 22.

Second Round of Chemo - September 1

Julie's second round of chemo went well today, no reactions, no problems. Now she just waits to see what the side affects will be. (Few and mild is the plan.) At a pre-chemo appointment this morning, the nurse practitioner told Julie her labs/bloodwork look good.

Tomorrow/Wednesday Julie has to be at Deaconess Hospital (downtown Spokane) at 7am to have her chest port removed - it's the port that caused the blood clot(s). Port removal is a surgical procedure but it doesn't take long and can be done with either general or local anesthetic. (Since we're going with the French "chimiothérapie," maybe we should use the British spelling of "anaesthetic.")

As It Turns Out, You Can Feel Healthy and Have Great Checkups, and Still Have Cancer . . .

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.

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.

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.

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.

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.