Happy Holidays!!
2012-Dec-30

It would appear that this blogger has taken a serious holiday. Sorry for the silence and I certainly didn't mean to leave off with me still in hospital!! No wonder I keep hearing rumours that I am "in hospital".

So the rest of the story is I was discharged from hospital on November 16th. Basically the days have been up and down. Fairly quickly I was able to eat more solid food. Food has never been so good:)  In order to do more chemo a scan needed to show marked improvement over the previous scan. A satisfactory CT scan was done Nov. 28th that showed the appendicitis had "calmed down" although the appendix was still not normal. To be sure antibiotics were continued for a couple more weeks. The second round of chemo was done Nov. 30. It appeared to be an easy round but a couple days after I had a sudden, severe pain flare. These happen occasionally and may or may not be related to the chemo.

Another round of chemo was completed Dec. 19 and was also uneventful at the time. However, by the weekend (Dec. 22nd) pain had increased drastically. Fortunately, I have been placed on the palliative home care list so was able to survive the weekend and then a nurse came by on Monday and she was able to get orders through the on-call palliative care doctor to double my pain medications. Seriously, my long-acting narcotics were doubled which means I was previously crazily under-dosed. I have done reasonably well since, but still have moments a couple times a day where my pain is not well-managed. I'm sure we'll address this next visit.

About the palliative home care team.... it is a team of nurses and docs who are available 24/7. They are extremely good at what they do, readily available and they do house calls:) I am really happy about being on their list in spite of the "palliative" implications.

We sure appreciate every thought and visit and card and phone call and prayer. Thanks again for all your on going support. Thanks to any who have posted replies to my blog. I thought all replies were going to my email only but some stay on the blog website. I only just figured out how to read all the relplys. Thanks to each one. For anyone wanting to reply to the blog rest assured that nothing will be posted unless I got permission first...

Tuesday,

Today finds Coreen feeling much better but still at the Foothills hospital.  She is in Good spirits but still on IV antibiotics for her Appendix flare up.  The great news is her bowel issues seem to be momentarily righting themselves.  Today she's finally back on "full fluids"  aka Booster Juice.  She is hoping to get out tomorrow on a Day pass but a full discharge is still a few days away.  Thanks again for all your help, thoughts and Prayers.

The family...

Wednesday, Nov 7

Today finds me in my beautiful suite at the Foothills Medical Centre!! Yesterday Lori (Good) & I went to my usual oncology appointment….and here I am. I have two probably unrelated problems; a large bowel obstruction and a huge Appendix which may or may not have ruptured. For the first I have this great nose tube ( called NG or nasogastric) going from my nose to my gut and really no other extra treatment beyond what I was already doing. The good news is that the CT scan didn't find anything requiring surgery nor did it find a gut full of tumor. The NG tube is only marginally effective and usually more appropriate with small bowel obstructions, but my tummy has improved significantly since coming. For the Appendix I only have antibiotics…apparently there is a very narrow window in which surgical removal is indicated if the appendix has ruptured (and we don't know if mine has). Outside of that window removal will "make a mess" and worsen the situation rather than improve it.

There might be more aggressive approaches to treatment of the obstruction, but we have to be careful not to aggravate the already aggravated appendix.

I'm not joking about my suite… i am in bed 1 of a 3 bed room, but no one else is here. At first I thought surgery patients would be coming all night, but then I was told that my bed was permanent and the other two allocated to day surgery (8am-4pm).  And today one got cancelled and one went straight home and here I am!!!

So although chemo was planned for tomorrow it won't happen now because of the Appendix. 

The backdrop to this picture is that G'ma B is at home with the kids who handled the first night with me away very well (or Dad & G'ma handled it very well). 

 I have so many people to thank for so many things I don't know where to start. So for the moment; Thanks ; Again!

Sunday, October 21-

We did it! Chemo successfully completed last Thursday... using two drugs methotrexate & mitoxantrone. No untoward reactions the day of nor after.... appetite may have even improved since another drug, called dexamethasone is given the first few days of chemo because its a powerful anti-nausea. I call it my mighty mouse drug because it makes me feel falsely well and able:) So here we are at Sunday and doing very well..... pain has increased this past week, but it is early yet to look for a decrease in symptoms due to chemo. May also be too early to completely call this a cake walk because the second week the damage to cells, normal and tumor, shows up. The second week brings the lowest blood counts and thus the greatest danger of infection. But who cares!!! We did it! Onwards and upwards.

Since I was unable for chemo the previous week I managed to get a lot done:) Thursday I went shopping, Friday I went to Grace and Raymond Cooper's wedding; ceremony & banquet and stayed late:) Saturday Paula Young and Dana Petersen visited (all the way from SK can u believe it?) then out for supper Sunday night. Sunday was two meetings and then Tyson and Lori Good had my birthday supper at their house. It was a wonderful birthday party at the end of a wonderful day.

I was feeling a bit like a fraud by the end of the week, but i was truly "too sick" for chemo on Tuesday. The difference might have been the antibiotic prescribed by the oncologist on Tuesday to decrease my bacterial load... by Wednesday my cough was mostly gone and the terrible dragged out feeling had vanished.

Chemo will be given every 21 days which means the next session is November 8th... assuming blood counts are adequate. After a few sessions effectiveness will be evaluated objectively with some sort of scans.

DEAR FAMILY AND FRIENDS

I have decided, like others in similar circumstance, that this is a great way to stay in touch with all the people I care about when I am unable to manage that any other way.

SUMMARY

I was diagnosed with breast cancer in October of 2011. I was given full treatment including chemotherapy, surgery and radiation. In August of 2012 I was diagnosed with metastatic breast cancer, metastases to the spine and pelvis. The current plan is to use chemotherapy to try to slow disease progression and radiation for symptom control. A five day course of radiation has already been completed Sept 10-14 and has remarkably reduced pain and improved abdominal symptoms. Intravenous chemotherapy will start on Oct. 11.

THANK YOU

I want to extend a huge heartfelt thank you to each one of you. I am so grateful for your thoughts and prayers, words of encouragement, cards, and gifts. And for ALL the food!!:) To those that are close and able, thanks for looking after my kids as though they were your own.... I think my kids think this is one big fun time. Both sets of grandparents have been putting their own lives on hold and taking turns staying with us. They so graciously look after us and the household and everything.... we are so so grateful.

BACKGROUND

Diagnosis:  Life is full of surprises... I was having some discomfort lying on my left side, and on investigation I found a lump under my arm. Just a small, happy, non-adhered bouncy thing and I wasn’t overly concerned. At my family doctor we couldn’t find it, but she believed me and sent me for ultra sound. Mammogram did not find anything in the breast, but in spite of that, a very savvy radiologist (Dr. Elliot) ordered a biopsy for the lump under my arm that could be seen by ultrasound. When I went back for results I knew that my life was going to change as soon as the doctor came in. She looked so upset and she didn’t waste any time. She said “I can’t believe it, but your pathology is positive for breast cancer”.

Treatment:  We did chemotherapy up front December – March. One advantage of doing chemo up front is that you can tell if it is working. We stopped the first set of drugs early because it didn’t appear to work. Then it started to look like the second drug also wasn’t working.  Surgery was April 19^th; a radical left mastectomy with lymph node removal. The pathology report following surgery was a bit alarming. The tumor in the breast which had initially been indiscernible had grown to 11.5 cm and there was no evidence that the chemotherapy had done much damage to the main tumor. This was not a case of anything being done wrong, but sometimes chemo just doesn’t work. A month after surgery we started radiation to the left chest area including lymph nodes. Twenty treatments were completed without event by the end of June which couldn’t have been better timing. Summer was here, treatments were completed, disability still believed I should be off work and my life seemed to be perfectJ

The Rest of the Story: Except I had this back pain.... it was between my shoulder blades, worse with heavy lifting and at night. It wouldn’t go away. I tried some old fashioned treatments; I went home to mom and dads’ and rode horses, dug in the garden, rode the quad, and babysat cows one week. I even pretended to throw calves one weekend when my brother and his family were home processing animals. He finally put me on a horse, I think, just to keep me out of the way. I thought maybe a good stretch would put me rightJ, but thankfully, in spite of a few normalish mishaps nothing broke. I wasn’t ignorant of the possibility of metastases and a pathological fracture, but ignorance truly was bliss those weeks at home. I started going back to docs for follow-up. Four different docs and numerous tests later it was determined that I had metastases in my spine and pelvis. It is crazy ironic to me that while we were carefully radiating the left chest to clean up any remnant of tumor it was busy raging elsewhere. It’s not a very nice nor very predictable tumor.

PROGNOSIS

I have tried to pin my oncologist down, but he says “ask me in 2 months”. That was almost a month ago...? I tried 10 months, but he seemed to think longer, then I tried 12-18 months and he wouldn’t commit. We need to see how the tumor responds to treatment.... Some of you may be a bit perplexed by the title of my blog, but I feel very settled about it. The worst (bestJ ) that can happen is I have to change it to “My Long Journey Home” or, with a miracle, maybe just to “The Bailey family”. I am glad that I have lived for this.... be it 2 months or 50 years the end is inevitable. This experience just strengthens my desire to live well for things beyond this life.

PLAN

There is no plan to fix me now. At this point they offer chemotherapy to try to slow progression and radiation to spot treat areas that are symptomatic. My oncologist, who I have come to love and respect, explains it like this. We are going to have a train wreck and we know that, but we want to try to slow the train down and have a more controlled wreck. He has seen the other scenario, as have I, and it is much more unpleasant. Strange that I like my medical oncologist since nothing on the chemo front has been useful yetJ

HOW WE ARE DOING

I have never had so much peace, joy and satisfaction as I have been given during this experience. I have sorrow too, but it is woven in and bearable. I am so grateful that God is so faithful and He has been so near of late. The extent of my support system is indescribable. My little family has been sheltered in this terrible experience. There is a hymn and it says, “My heart is resting Oh my God, I will give thanks and sing”.... and another line says, “ I pass my days in sweet content” This is my experience these days.

I know... some of you may be thinking that I must already have brain metastases, but I assure you this is real. I am not unaware that there are some very real and terrible realities. I have a husband I love dearly and two beautiful children and it brings tears just writing this. BUT I also have a very real hope. I don’t believe God ever takes away, but that He gives back more. Me, I am going on to better things (with the help of Heaven). My family; God will take care of you. I promise.

TREATMENT IN THE METASTATIC SETTING

Radiation- Sept 10 – 14:  I have had fantastic results with radiation so far. The pain in my back was unbelievable and quite debilitating. I was also having trouble with my tummy and it became almost non-functioning landing me in emergency multiple times. The radiation has made the pain much better, improved mobility and my tummy is almost back to normal. Happy happyJ

First Crack at Keep-In-Check Chemotherapy: We started an oral chemo last Wednesday, called Xeloda  and it had a fairly mild side effect profile. Perfect. Thursday I was so lethargic and uncooperative that g’ma called nurse next door (aka JJ aka Jen Jordan) in the evening and off we went to emerg (I had a fever, was throwing up and feeling really sick). When Jen takes me to emerg things always go so nicely (she works thereJ). No source of infection was found so I could go home, but Friday I was draggy and I didn’t want to start chemo, Saturday we went to Banff so I didn’t want to start chemo and Sunday is Sunday so I didn’t want to start chemo... Really I just didn’t want to start my chemoK. Monday I was out of excuses so took my chemo nicely....and did well all day. Just as I was settling into bed I thought, “hmmm I should take my temperature” . It was 38.3 – hot. My poor husband... he said, “I’m just going to have a power nap”J (he had done the graveyard part of the previous emerg shift).  I called to have the medical oncologist paged. After hearing my story she decided it was a “drug reaction”. We were so glad to go to bed. In the morning my oncologist’s nurse called and set up an appointment...

Crummy news: Not what I wanted to hear, but no more Xeloda (my only choice of oral chemo)... the doc says to “keep trying” could land me in serious trouble.... I did ask of courseJ. Apparently, some people don’t metabolize this drug well or maybe this is just another of my weird reactions.

Current Chemotherapy Plan:  So the next plan was to start intravenous chemotherapy on Oct. 4. But today (Oct. 2) it was decided that I am too sick (with a cold) to start Thursday so now the plan is for next week.... and instead of one drug the doc is thinking of using 3 at a lower dose... will see what happens. Even though these are intravenous chemo they have a slightly milder side effect profile than previous chemos.... well mostly. One drug is very hard on veins so there is a plan to insert a port-a-cath (central line). It is an under the skin version so should be easy to manage with the kids and all. And yes, the teaching sheet does say hair loss or thinning... here we go again...:) Good thing I didn’t give away all my various head coveringsJ