The Final Chapter

It was two years ago this weekend that this final chapter in mom’s life began.

When Mom was first diagnosed, she made me promise that she wouldn’t die in a hospital. She had terrible memories of her mom dying, and it had turned into a kind of phobia with her. It was easy to make the promise; Mom actually dying was a long way off. I mean, we could cross that bridge when we came to it, right?

Sometimes the planets align, and things seem to work out the way they were meant to be. Mom was already living at my sister’s when her health really started to decline. We had a great general practitioner treating her, and Palliative Homecare was helping Mom manage at home. We could not have managed without them.

Looking back, I can see now that Mom had been on a fairly steady decline for quite a while. But at the time, I just thought that we were facing new battles. I guess that is what Homecare is about. We focussed on keeping her comfortable. When she had trouble walking, we got her a walker. When she just couldn’t walk anymore, we got her a wheelchair, then ultimately, a hospital bed (Mom was so excited when we got the bed!) But, somehow, I still didn’t realize that she was dying. Maybe because she never complained...

Things happened pretty quickly after we got her the hospital bed. She was having trouble eating, and got really weak.

Her final days were spent surrounded by her seven kids. She laughed and joked with us, and we all took strength from each other. I believe that we did right by Mom, and I am so thankful that I could honour her request. It turned out to be an amazing gift, not just for me, but for my brothers and sisters, too.

We are closer because of what she shared, and because we saw each other in a way we’d never imagined. My sisters-in-law became so much more than my brothers’ wives; they became my mother’s daughters, and I will never forget the love and kindness they showed Mom.

Mom’s dying was the scariest, most intense experience I have ever faced. But it was also the most spiritual and beautiful. I wouldn’t have missed it for the world.

This is so hard to write

Mom passed away in the early hours of Friday, August 21st, at home, with loved ones by her side.

I will take comfort in knowing that we did well by her.

Fern Alberta Peterson was granted her angel wings on August 21, 2009. Her final days were spent surrounded by family and friends that Fern had touched throughout her life. Special thanks to her sister, Thelma, for her wisdom and guidance.

Fern’s life would seem too short to many, but those who were touched by her understood that the quality of existence far exceeds the quantity of time in which one lives. Her beautiful smile and quick wit brought so much joy to our family.

Fern was predeceased by her father, Lawrence Albert, her mother, Dorothy Anne, her brother, Milton, and her sisters, May and Shirley. She is survived by her sister, Thelma, and her brother, Lloyd.

Left to carry on Fern’s loving legacy are her husband, Les, her seven children: Cherrie, Andy (Sharmon), Larry, Dan (Pearl), Rhonda (George), Donna (Barry) and James (Jocelyn). She will be lovingly remembered by so many grandchildren and great-grandchildren, and nieces & nephews.

Fern will be forever loved and missed by her childhood sweetheart, Joseph.

How Did We End Up Here?!

It's four in the morning, and mom has been resting quietly for just over an hour. Boy, have things changed in the last little while.

In May, Mom was put on a chemotherapy drug called Tarceva. Despite harsh side effects, the cancer was shrinking. But, it wasn't enough, and the fight just got to be too much for Mom.

Last week she took to her bed. We got a hospital bed set up in Cherrie's dining room. Mom's happy there, she can be comfortable and be a part of everything as well.

The last few days, though, we've seen a marked decline in Mom's health. Her kidneys are failing (we've got her on 1 litre of saline fluids everyday, and a catheter because she's so immobile). She slips in and out of consciousness - I'm sure that she's scouting out her other options - and sometimes calls for her mom, who died years ago.

Amazingly enough, her lungs don't sound bad at all. With the help of oxygen, she doesn't cough at all.

She doesn't seem to be in pain or uncomfortable, just a bit scared about her next step.

So, we're all gathering around. I guess this is what a bedside vigil is all about. Laughing one minute, crying the next. Today, Mom managed to say that she loved us all. That's what I'll hold on to, and what I'll share with you.

Life is too short for anything less.

After a Long Delay, We've Got A Strong Team In Place

First of all, a little bit of an update. Mom has gotten a bit weaker. I think the radiation (palliative on her tailbone) knocked her down a bit, but we will hopefully see her outside more with the warmer weather.

We got her a walker for getting around the house. It has helped a lot. Cherrie has fashioned a little basket to the front of it, and Mom is enjoying it after a little bit of resistance at first. Mom and I talked about getting her an outdoor walker, she's starting to think that's not a bad idea.

Today at the Cross Cancer Institute, she had bloodwork, xrays and a consultation with her new oncologist, Dr. Chu. She has gained about 1/2 a pound (97 lbs) - this is very good, I kinda expected her to have lost more - since her last appointment on April 15th. He said that she is more mobile than he would have expected with the extent of cancer on her tailbone, and that is good. The spots on her bones have grown, and there are more spots in her lungs.

He started her on Tarceva, it is a 'gentle' chemotherapy. She has to take a pill daily for a month, and then go back to see Dr. Chu and see if there is any improvement. Tarceva is a fairly new drug, and for about half of the people taking it, it helps a lot. It not only extends life, but seriously reduces symptoms - pain and shortness of breath.

Side effects can include serious dryness (I've read about some stuff that might help), pimples (doctor gave her some cream) and diarrhea (should be managed easily with Imodium). These should hit at about the one week stage, then fade away as the body adjusts.Her pleural catheter has plugged again, so we will have to take her back to hospital to get it cleared. But all in all, she's positive and hopeful.

And, so am I.
Love,
Donna

Mom's in Edmonton

So Mom and Joe are in Edmonton now, staying at Cherrie's while they both recover. They have a cell phone, let me know if you'd like the number.

Joe had surgery to remove a bit of his colon. I don't think he was prepared for how much the surgery would take out of him. I think he's going a little stir crazy, but for the most part, he's okay.

We found a doctor here to treat Mom. She's young, Mom seems to like her; they spend a lot of time just talking, which is great for Mom.

Mom is still not eating much. I've been reading a bit about that. It seems the body with advanced cancer doesn't need or use nutrition the same way as a healthy body would. So eating lots won't guarantee more energy or weight for Mom. Doesn't mean we aren't trying though. Cherrie and Ageleky are busy fixing tasty morsels to tempt her!

Myself, I've had a bit of a 'mind shift'. I've been so stressed and frustrated, trying to 'fix' Mom. "Eat more, walk more - you can do it!" Maybe she can, but maybe she can't. Either way, it's not my job to cure Mom's cancer (believe me, I would if I could!!). That's the doctor's job.

So, my job has become easier - and harder. I will support Mom, I will comfort Mom, I will love Mom. That's the easier part. The harder is letting go of the other stuff.

We're Not As Far Ahead As We Thought...

Since September, Mom had been complaining of a sore back. After a CT Scan a few weeks ago, the doctor said, 'there's a bit of activity in the bone' and referred her back to her oncologist in Victoria. We thought that it could be removed with radiation...

A bit of a shocker for us this week in Victoria. Turns out that we weren't there for one treatment - at least where treatment means 'fix' or 'cure'.

There's quite a bit of info, so I'll just tell you what happened...When I went to pick up Mom on Monday morning, I was really dismayed at how small she is. She is down to about 98 pounds, and has lost another 2 or 3 inches in height (comes up to my nose, and I'm 5 feet tall). She's very weak and has trouble going any distance without something to lean on.

We went to see her oncologist, Dr. Lim. He kept asking her about her tailbone... "Is there any pain there?" and her head... "Have you had any falls just before the new year?" Remember, we thought we were there to have one spot on her rib radiated.

Turns out, she has 4 'trouble spots' on her bone scan. One on her rib, one on her back (spine), one on her tailbone, and one on her skull. (Not her brain, her brain scan came back clear).Dr. Lim wanted to treat the tailbone because it is the biggest spot on the CT scan. But if he treats it now, he can't treat it for another 6 months - and it's not hurting Mom now.

So I asked, "if it doesn't get treated, would the cancer have a chance to spread?" To our surprise, Dr. Lim said that it had already spread, "The seeds have been sown". The radiation treatment is not for curing, or fixing; it is for pain relief only.

Apparently, when the cancer metastasized to her bones, it really meant that it had gotten free. It's no longer just localized in her lungs.

So, Mom is not going to get better.

But, we don't know that she is going to get worse, either. Dr. Lim prescribed medication to help Mom get her appetite back, and maybe with Rhonda's help with some food preparation, we can get her energy back too.

Medically, we don't know what's going to happen next, or when.

She had two spots radiated - her back and her rib. The radiation is supposed to hurt for a day or two, then the pain will go away completely after about a week. Then, she won't have any pain, because the other spots aren't hurting.

Personally, it has to be about positive attitude, and quality of time.

Cherrie is talking to Mom about coming to Edmonton, that would be great for us to monitor her. Get her eating and exercising, so that she can get a bit more enjoyment out of the day.

I'm sorry, guys, that it's not better news. But it's not the worst news.

Two Months After Treatment

Two months after treatment, and Mom is feeling pretty good. It seems like most of the side effects of the radiation and chemotherapy have abated. he is still tired most of the time, very little energy.

She's eating better, which is good. She's smoking again, which is bad.

Mom will probably be upset that I am telling everyone, but at the beginning of this blog, I said that we are all in this together. Nothing has changed there. I PRAY that she will quit right away!

In August, we had a family reunion at Andy's. It was a great time and Mom really enjoyed it. But after that, I think the stress of not having a place to move into got to her. Her apartment will be ready October 1st, so I'm hoping that then she can settle down and focus on her health and happiness.

Right now, it's all in her hands.

So... Was It All Worth It?

Mom had the final follow-up with the specialists in Vancouver last week.

They're happy! The main tumour is shrinking (apparently it will still be a while until we see how much it has shrunk), and the chemotherapy wiped out the small tumours on the lymph nodes.

Her blood pressure is down to 90/60... so, she can wean herself off her blood pressure medications.

On the strictly clinical side, that's about it. She is to follow up with an xray every 3 months. So long as no new tumours appear, and the main one (I keep wanting to say big one, but I'm trying to use positive phrasing) doesn't grow, she's in great shape.

Mom has lost a lot of weight in the last year. She's down to 112 pounds, and for those who haven't seen her for a while, it'll be a bit of a shock. Between the treatments and putting her back out, she hasn't been moving a whole bunch. Her muscles are very wasted, making her look quite frail.

Her hair is starting to grow back, but very little and very slowly (from the side, she looks so much like how I remember her dad!). Just a little fuzz right now.

I've been on her quite a lot to walk. Even a little bit! She resists, and I'm not sure why. I know this last time I was with her, her back was very sore, but this has been going on for a long time. Hopefully, getting the good news from her oncologists will be motivation to get her body strong enough for any new fight that comes along!

As for me, I'm cautiously optimistic. If I'd had my druthers, her follow up examination would have been far more comprehensive - not just an xray. I'd have liked to have heard how much the tumour had shrunk - for some reason, they didn't have this information readily available (?!)
But, mom is asking for all her file info and I hope to take a look at it soon.

Mom is still focussed on fighting the cancer, and she's determined - at least mentally. Now we just have to get that same energy in the physical side!!

This weekend is our family reunion, I'll post some photos then if you're interested.

Again, in Mom's own words...

I have at last reached the end of the chemo sessions and
glad to be done. Now, just a three week wait and then to
see what the oncologists have to say. I am praying for good
results.

I have not been having good days and today is no exception.
The throat is very sore but the appetite is still there. It takes a
long time to eat a meal.

One more month and we will be off the island and on our way
to being closer to family and friends. I am really looking forward
to that.

Ending on that note, prayers and good thoughts are much
appreciated and very uplifting. Thank you all.

We Thought We Were Getting Ready To Coast

It looks like we're still slogging uphill.

Mom missed her appointment on Monday, was it something she ate?

Anyway, she went to get her bloodwork on Tuesday, hoping to continue chemotherapy - her last week!! But, it was not to be.

Mom's bloodcount was so incredibly low! The doctor prescribed daily injections of B12 and folate (I think that's it).

Now, here's where things get weird. On Wednesday, Mom went to get those prescriptions filled at the grocery store... her oncologist from Victoria just happened to call right then! Mom had to go straight to the hospital for a blood transfusion!! Two units!

It's not that uncommon, and they are fighting the cancer very agressively. I think the trouble is with having 'too many cooks'. If everything has to clear through Victoria before they do what's best, isn't it Mom who suffers? And isn't the goal to make her better?

Lesson learned. Mom is going to be much more vocal (under my stern instructions!) about any issues that affect her. And they all do.

So, we continue on, and hope that next week her body will be up for the one last uphill fight! Wish her luck.

Will Next Week Really Be Enough?

Well, Mom's just about done.

That's not to say is was easy. It wasn't.

This last round of chemotherapy really challenged her. They had changed her anti-nausea medication (remember, these come with their own side effects), and they put her in a strange dissociate state. She wasn't nauseous, just not quite there.

That's not to say it was horrible. It wasn't.

Mom says she's eating well, and her energy level is improving. She certainly doesn't cough like she did before treatment! Her throat still hurts, but not as much.

So, we have one more round of chemotherapy next week. Pretty sure she'll feel terrible again. Pretty sure that'll pass and then it's the countdown to July 22nd, when we hear if the treatments had any effect on the cancer.

Send your love and good thoughts, they mean a lot!

Still Waiting... but calmer

Talked to Mom this weekend, she is sounding strong. Her throat is still bothering her, but less than it was. Her appetite is coming back, she says (Not that I think she would lie, but I sometimes worry that she thinks she's protecting her kids by putting a positive spin on things...)

Tomorrow, she's going back to Campbell River Hospital to get her bloodwork done, and hopefully continue on with her chemotherapy. I am still amazed at how far we've come; from dreading the thought of it, to being impatient!

Mom has embraced baldness!! Yesterday, she and Joe went to tour a new golf course, and she didn't even realize she was uncovered. Progress!

A tiny update, I know, but at this point, it's all I've got. I promise, when I hear anything, you'll be first to know.

Waiting ... waiting ... waiting

We had been hoping that Mom could continue with her chemotherapy treatment this week. She had her blood work done, and everything looks nice and strong on paper.

Trouble is, her esophagus is still burning from the radiation (apparently her back and collarbone are too). The doctors want to give her a little more time to heal before they start again.

So, we wait another week, and see how she's feeling. Right now, she's feeling tired. I'm sure she's physically tired, and mentally tired. It's hard to get all pumped and ready to fight, then be told to slow down and ... wait.

If you hadn't already noticed, that seems to be the recurring theme of this little story ... wait. We wait for diagnosis ... we wait for the treatment plan ... we wait to heal ... we wait for results (July 22nd is when Mom is scheduled to go back to Victoria for a follow up consultation).

On the positive side, Mom says she's gained 6 1/2 pounds since I last saw her (8 days)! I think that's great news, her body needs all the help it can get in this fight!

So, people, unless something extraordinary happens, the next post will be early next week. In the meantime, we all ... wait.

In Fern's Own Words...

I have been home for a week today.

It was great fun to come home with Andy and Donna, and for a bonus, Larry and my granddaughter Raven showed up for the weekend. I hated to see them leave.

As much as I enjoy being at home, I have to admit I miss the social interaction with the other people at the lodge in Victoria. It was great fun to spend the evening yakking up a storm with the others and trying to complete a jigsaw puzzle at the same time. Not an easy task.

The nurse for chemo called yesterday and it sounds as though they will start the next three-day session on Monday depending on the blood count. Hopefully, it will be good and I can get these treatments over with. I am feeling well and have not had any fevers so I think it will be okay.

Once again, the support and prayers you all have sent have been great. Thank you.

A Milestone - 30 Sessions of Radiation!

Well, she did it! Mom completed the prescribed 30 sessions of radiation therapy, with only a two-day break. Huge accomplishment!!

Now she will rest for two weeks, then have 3 days of chemotherapy. After another two week rest, she will have the final 3 days of chemotherapy. And that's it... right? She'll be cured?

Cancer is a tricky thing. It's very hard to be absolutely certain that you're 'cured'. The experts prefer to use the term 'remission'. This means that the disease isn't active. Complete remission is where the disease disappears completely with the treatment. Partial remission is where the disease shrinks but does not disappear completely with the treatment. It takes a few years of being in remission before they'll say, "Mrs. Peterson, you're cured". So, we wait.

Actually, we have to wait anyway. They won't know for quite some time whether the treatments were effective. So right now, we go on how Mom is feeling. And the good news is that she's feeling really good. She is clear-eyed and walking steadily. Her positive attitude shines through, and it's wonderful to be around her.

Mom and Joe have listed their house for sale in Sayward and plan to move to the mainland (anyone know of a small-town place they could rent?)

Back on the Upswing

Just talked to Mom this morning. She's still in the hospital in Victoria, but no longer in 'reverse isolation'. And she's had three radiation treatments this week! That means she's only got 5 more to go... fingers crossed.

If her blood count is high enough, she'll get to go home for the weekend, then back to the Lodge next week. They are going to wait for a few weeks to resume chemotherapy, make sure her white blood cell count is really strong.

They've also given her a new 'thing' called Throat Freeze (or something like that). She swishes that in her mouth then swallows. It's giving her a lot of relief, and I think that's helping to bring back her positive attitude. As you can imagine, it was a little bit on weak side this week...

Uncle Lloyd (Mom's brother) has been in Victoria to see her, that has meant a huge amount to Mom. The meaning and value of family sure becomes apparent during a crisis.

I'll be seeing Mom next week, so will post again soon.

Just a Quick Update

Mom's doctor phoned me today, said (bad news) that she'll probably be in 'reverse isolation' for 10 days, either in Campbell River or Victoria. And although her white blood cell count is very low and she had a fever, (good news) there is no infection. They'll keep her on antibiotics until the white blood cell count improves.

Latest news, she will be transferred by ambulance tonight to the Royal Jubilee Hospital in Victoria. No news on whether or when she will be resuming the cancer treatments, I'm keeping my fingers crossed that it's soon!

A Little Setback

While Mom has been sailing through her treatments, relatively speaking, a bit of 'real' life...

On Sunday, Mom had a bit of a fever. Because of the depleted white blood cells, this is important. Her body just doesn't have the strength to fight off any infections. So, she and Joe made the trek to Campbell River Hospital to get checked out. Her white blood cell count was low enough that they decided to keep her there.

After each chemotherapy treatment, your white cell count will begin to fall. It will be at its lowest at the mid-point between treatments. For example, if you have treatment every 3 weeks, then your lowest counts will be at about 10 days after your chemotherapy injections. This is called the 'nadir' (pronounced na-deer). When your white cell count is at its lowest, you will probably feel very tired. Some people also say they feel depressed at this time. After the nadir, the level of white blood cells will gradually improve until it is almost back to normal. Then, it will be time for your next chemotherapy treatment and they will go down again. It is no wonder that many people feel as if they are on a rollercoaster, emotionally as well as physically, when having chemotherapy.

I called the hospital, and they are trying to get her admitted to the Royal Jubilee Hospital in Victoria so she can continue her radiation treatments - I know how important this is to Mom. She wants to keep her cancer-fighting plan, so any change is heartbreaking!

So, for now she's in Campbell River, in a 'reverse isolation' room. That means that anyone who goes into the room must wear a mask and a gown to prevent the risk of any bad germs getting to Mom. She can't take calls, so it really is 'isolated'.

Her esophagus is starting to really bother her (it's so close to where she's being treated with the radiation), so eating is a bit of a chore. There was talk of maybe taking a break from the radiation if it got too bad, so maybe we should look at that as a silver lining...?

I'll keep you all posted as I hear more.

Week 4 - The Halfway Point

Well, as some parts of this fight get easier, some get harder.

This week, the plan was for Mom to have radiation treatment everyday, and chemotherapy Tuesday, Wednesday and Thursday. But first, we have to see the oncologist on Monday, who will approve or deny this plan based on her bloodwork. If her blood count is too low, it would just be too hard on her.

Harder... When we saw the oncologist, she still hadn't received the blood test results, which had been done 2 hours earlier. She said that's not a good sign; when the blood count is low they have to do a manual count, which is probably why it's delayed. Probably better to delay chemotherapy a week...

It doesn't seem like a big deal, but at the time, it's huge. We know when her last treatment is (chemotherapy in Campbell River Thursday, May 22nd), and how long she'll be staying at the Lodge (until Thursday, May 2nd). The thing that makes all of this bearable is that we know what to expect now, and when to expect it!

It turned out okay, we got to continue on the way we expected (her blood count was actually very strong), and we finished another session of chemotherapy. Again, no bad side effects, just a little sleeplessness and lack of appetite.

Harder, but then easier... This was the week that Mom's hair started to fall out. She was dog-sitting on the weekend for Joe's nephew, Guy, and his wife, Creole. (They have been an incredible source of support for Mom and for me - I get weepy just thinking about how much easier it's been with them there!) Anyway, Mom comes out of the shower... "Joe, that dog has been on my towel! Her hair is all over it!" Joe takes a look, "Well, Fern, that doesn't look like her hair... I think that's your hair."

So, we went to the salon at the Cancer Clinic to get Mom's wig. And she decided it's time to get rid of her hair. The lady obliged, and even though she was very nice, it was pretty emotional. Mom couldn't look at herself for a full 24 hours. But, when she finally did, she laughed. And she gets lots of compliments on her wig. The morning after she had shaved her head, she came downstairs for a visit... I couldn't pinpoint what was wrong, but she just didn't look right. Somehow, she had put her wig on so cockeyed, it was covering one ear and halfway up her head on the other side! She's gotten much better at it, thank goodness!!

Easier... The only other story, really, would be her radiation treatments. Last time I was there, for her first treatments, she would get changed and come to the waiting room all wrapped up in her gown and robe tied snugly around her. This time... not so much. Out of the change room she struts, no robe, the gown tied only at the neck and floating gently behind her. No fear!! (I found myself still holding my breath when that red light was on.)

I do think the treatments are getting to her a bit. She's having a bit of trouble swallowing, and her appetite is waning. But she hasn't lost any more weight, and her spirits are good. She knows there is someone up there looking out for her (her mom, she thinks) that is making this fight as easy as it's been for her so far. Thank you, Gramma!

Another week over

Well, Mom made it through another week - this one was just radiation. JUST radiation... boy, how quickly we get used to things.

I think this week might have been a little harder for Mom... she didn't have the drugs that they used to fight the chemotherapy side effects. These drugs gave her energy, and increased her appetite. So, she's been sleeping more and eating less. Not great, but in no way bad news.

She met with her radiation oncologist on Thursday. He told her, "You're going to be okay. I would not put you through this otherwise". Mom was so excited! We're choosing this to mean that she will be cured, or at least put into such deep remission that we don't see that ugly cancer for many years.

I wanted to mention a bit more about the Vancouver Island Lodge. Mom shares a room there with a lady fighting cancer, and everyone there has a similar story. It gives Mom a lot of comfort and optimism to be there. There are volunteers everywhere who will do just about anything for you. They pick Mom up in Campbell River at 7:00am Monday morning, and drop her off late Friday afternoon, they shuttle her back and forth between the Lodge and the Cancer Centre as many times as she needs to go. And they're volunteering!

The Lodge's cafeteria is open 24 hours. She can go in any time and get a sandwich (they're all portioned in halves, so no one feels pressured to eat more than they can, or to feel wasteful), a drink or some fruit (Mom was REALLY into the banana bread pudding when I was there). They serve 3 hot meals everyday, where it feels like a social event.

It has felt really strange this week not being with Mom. You put so much of yourself into researching, and being there, and then you're not. So, I catch myself noting the time when I know Mom will be having her snack, or when the volunteer van is picking her up, and thinking about her. Which is what we're all doing here on this blog, whether I'm writing, or you're reading. We're all thinking about her, and wishing her well. Who knew you really could send love over the internet?