Chemo

Julie's first chemo was Thurs. Sept. 20. She has felt OK in the four days since then; she has some side effects, the kind that are uncomfortable, unpleasant, and annoying, but bearable. She will have chemo once a week for 18 weeks. 

Julie went home from the hospital today, hooray! 

Surgery Day

Julie's surgery went very well; both her surgeons seemed pleased. (Joe and I told them that they are our Gold Medal Dream Team.) There were no big bad surprises and they got all the visible cancer.  An intraperitoneal port was put in her abdomen; this will deliver a more aggressive chemo than she had last time.  Her outlook is very good.  Truly this is an answer to prayer. She will probably start chemo in three to four weeks.   When I saw Julie this afternoon, she was obviously wiped out  but was alert and coherent; hopefully she'll sleep tonight.

I had hoped this blog would be on “inactive” status for a very long time, but here we are again. At Julie’s regular check up last week, during the physical exam, her doctor found a small mass. A blood test was done which showed that her CA125 level was somewhat elevated. So a CT scan was done, which found areas of concern on her liver and her spleen, in addition to the original mass which is where her cervix would be if she still had a cervix. Thank goodness for that one, as, if the doctor hadn’t detected it during the exam, it would probably have been awhile before the others were found.

The bad news is, Julie needs surgery and chemo again. The good news is, she can have surgery and chemo again. It’s one of those. But mostly, we’re thankful that this is treatable.

It’s been just over three years since Julie’s original surgery, and well over two and a half years since she finished chemo. After the original surgery, Julie’s doctor told her the cancer would come back, eventually, and she’d have to go through treatment again. So the current situation is not a surprise, but it’s still kind of a shock. Personally, I was hoping for a twenty year remission, but 2.5+ years is actually really good. And treatments for ovarian cancer continue to improve.

Julie’s surgery is scheduled for August 9 at Deaconess, and she will probably start chemo in early Sept., although that is just a guess at this point.

More Good News From Julie

I got my blood tests results back today from the nurse at my cancer doctor's office. My CA125 number was 8. When they determined that I had cancer it was a 225. At the end of chemo it was 39. The normal range should be about 25 or less. It isn't always a good indicator because many things can cause fluctuations, but for me it is something they can use. So anyway, just wanted to share the good news!

From Julie - Check Up

I had a check up today (March 12) and everything looks good. They couldn't give me the results of my blood test until next week though. Hopefully that will show good low numbers in the CA125 test (the one that for me was elevated prior to chemo treatment - it's not always a useful test and that is why they don't give it to women commonly.) The image they saw on the CAT scan done in December was gone now, which was what the doctor had been hoping for. She says it was just some fluid left over from the surgery. She did tell me that I have to exercise for longer periods of time, so now I have to make sure I get up earlier in the morning...fun!

January 2010 update

Julie is working full time. She’s able to take the stairs to her office on the third floor as she used to - during chemo she didn’t have the stamina so had to use the elevator. She’s also exercising regularly and, from an observer’s point of view, seems as energetic and active as ever. Her hair is about a quarter inch long now and she has little stubby eyelashes. For those of you who don’t see Julie regularly, take my word for it, she looks great, you’d never know she just went through surgery and chemo. Her next scan is March 5.

Other happy Kamps family news – Jillian is engaged to Matt Ott and they are planning a September wedding. Matt works for the National Recreation and Park Association, a non-profit agency in Virginia, and lives in downtown Washington DC, where Jillian will be joining him. Some family members are already planning our free-loading trips, but don’t tell Matt, we don’t want to scare him.

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.)