Almost a month...

I think my new mantra is... has it really been that long?  Because once again I can't believe how long it's been since I've update the blog.  These delays continue to be in part because of how things are so different every day for Dorene and because I don't seem to be as good at keeping up with things as I once "thought" I was. ;-) lol

So... Hospice has been a God Send.  They come once a week to check on Dorene.  They adjust and deliver her meds whenever she needs them.  The hospice Doctor even came to Dorene at the first.  It has been such a blessing to Dorene and Matt.  I can't say enough good things about how much of a difference this has made for Dorene.  Their adjustment of her meds alone has made a big difference in Dorene's life.

Dorene's life... well, it seems an understatement to say that the changes in everyday life for Dorene has been a huge struggle for her.  Dorene has always been a person of action and movement.  Her work was physical, her activities physical, she liked to garden, scuba dive, snow ski, workout.  Where I find solace in quiet moments, in a book, or sitting on my lounge chair in the sun; Dorene finds solace in activity.  Work in the garden, water ski, move and do.  This makes her happy and brings her peace. Action has been her life since she ran out of the womb.  Literally!  Mom was in labor with me for over 24 hours... I believe she was only in labor with Dorene for a few hours. HA! lol :-)

One of my favorite stories about Dorene from Mom is the day Mom was in the house... heard the screen door bang open/shut, then a few minutes later it open/shut again.  Out of curiosity Mom walked down the hall to check on what that was about and passed the bathroom to discover one of Dorene's pig tails on the floor. :-o  When Mom sat there crying because there was Dorene out in the yard playing with one long beautiful pig tail in Mom's hand asking her "Why??"  Dorene said it was in her way and got back to the business of playing. :-D lol  Dad and Dorene are a lot alike in this way.  They are people of action.  They work hard and enjoy their activities. :-)

So inactivity has been very difficult for Dorene.  It is like being stuck in a straight jacket.  She wants to Move, to Do, but her body argues with her every step of the way.  When she and Pam were walking every morning the days were easier for Dorene, she might hurt after, she might have to have a long nap after, but the action helped give her peace of mind.  Having to stop that was very difficult and she's been trying shorter, later in the day walks lately but in truth it's just not enough.  Can you imagine being on a life timeline and "wanting" to take advantage of the days you have but being unable to do most of the things you enjoy?  Sometimes I think this is good because it keeps a fighting spirit in Dorene.  She keeps trying to gain her strength back and sometimes, even if on a smaller level than she'd like, she succeeds.

Some of the medical/physical challenges and progressions of late:

The tumors on Dorene's chest area were starting to look bad again and Dorene discovered that the major "break through pain" that she was experiencing had to do with the tumor on her liver.  Breakthrough pain is pain that breaks through the medication on a very intense level.  The tumor was quite large in the last scan... say the size of a plum.  Dorene said that if you put your thumb and forefinger together and opened it about an inch that was about the diameter of that tumor.  Dorene decided to do another round of radiation on the skin tumors and they did a focused radiation blast on the liver tumor.  Surprisingly the pain from the liver tumor subsided in intensity within days of the blast.  Of course radiation has it's own problems of fatigue and nausea but I don't think it's hit her too hard yet.  Remember that the radiation builds in the body so the side effects happen weeks even months down the road.

Dorene recently had a brain scan and I am happy to report there were no signs of cancer in her brain which is very important.

In September Dorene's neighbor friends participated in the Coeur d'Alene Susan G. Komen Race for a Cure in Dorene's Honor.  They were called the "Lady TaTa's!" :-)  Here are a couple of pictures...







Dorene's 48th Birthday is on the 10th of November and on the 8th Mom and I are flying to Idaho to visit and celebrate her birthday. :-)  We are really looking forward to the visit and meeting Dorene and Matt's Idaho friends. :-)

Love to you all...
Dorene's Sister
Deborah
xoxoxo

Update on Matt from Dorene...

Matt had his procedure done today. His throat is all healed up. there was no sign of Cancer. In fact everything looked so good they didn't even need to take biopsies. Divine intervention is a wonderful thing. Praise God.


Dorene & Matt

Hospice...

We met with them today and things really went well! Matt and I feel we have some hope and that they will really be able to help.

Just wanted to share the news.

Love, Dorene*

*Dorene sent this email Tuesday eve and I had to share it with you all... :-) xoxo

Day by Day...

This past week Dorene's health took a very rough turn.  She ended up going to the emergency room on Monday because her nausea, pain and breathing issues intensified.  The thought was that maybe she had pneumonia but if she does, it is in an early stage.  They changed meds, gave her antibiotics and the next day she met with her oncologist.  Basically, this is the progression of the disease.  They did change her meds again and that seems to have helped with her nausea but even with meds she has increasing chest pain is constantly exhausted and has needed a lot of sleep.

I mentioned in the last post that Matt had contracted a parasite that made him extremely ill and sent him to the hospital.  Well... last week Matt had a piece of food catch in his throat at a business lunch which sent him to the hospital in an ambulance where after sedating him to scope his throat they sent him home with pictures of his throat which is scarred and swollen from the intense vomiting he experienced during the illness.  In the photos are suspicious dark areas which the ER doctors were concerned about.  They showed the photos to Dorene's oncologist and she said Matt needs to have his throat biopsied asap.  There is the concern that he may have espohgeal cancer.  Matt is in the process of making the appointment needed to have this properly diagnosed.  I will keep you up to date.

God... please give Dorene and Matt a break.  Please...

There is not an elloquent or gentle way to say this... the 'less than a year' the doctors quoted Dorene seem to be happening very quickly.  Dorene said that with how she feels right now she can't imagine making it through the winter.  She was frightened enough that she asked her oncologist about that awful chemo that was once discussed.  The one the oncologist said she'd not want Dorene to take because of how sensitive she is to chemicals.  If Dorene thought there was a chance of it helping I think she'd try it, but with how awful she feels right now I don't think she can imagine making it through that treatment.  It seems a lose-lose situation.

They were also referred to Hospice.  They meet with someone this Tuesday to start the getting to know each other process.  Hospice will start by helping to manage Dorene's pain.  They will send a nurse to Dorene once or twice a week to see if her meds need adjusting.  This will save Dorene and Matt from needing to travel for this type of basic need.  They also need to meet nurses, find someone they are comfortable with so that when Dorene needs full time care they have already arranged who that will be.

Our Mom is going to stay with Dorene and Matt soon... we're just working out the flight arrangements.  Mom and I will be... on-stand-by... to be there as they need us.  We want to be there as much as possible to help in any way we can but we also have to allow for Dorene, Matt and Candace to have some time to theirselves.  I know that Matt's oldest friend is coming for a week also to help out.  And as I mentioned, Candace will be there where she can.

Dorene had hoped to spend her birthday in November in California to see family... she's waiting to see if this new med program and this much needed rest is going to help her feel up to that.  I know I'm writing a lot of bad news here but remember that Day by Day is how things are and it is possible that with better medication monitoring Dorene will rebound again and find more strength.

For now... Dorene has been so weak she hasn't been up for talking on the phone much but feel free to leave a message of Love if you want or send an email.  If you don't have Dorene's email touch base with me and I'll get it to you.  And please don't take it personally if you don't hear back from her for awhile... I know you'll understand that when you are weak talking and corresponding is a big effort.

With Love,
Dorene's Sister, Deborah
xoxoxo

Things Take Time... but Life is Now

I'm seeing a pattern in my postings, and that is a planned procrastination. I see that I'm not always able to post what is happening when it is happening because every day is different and every day paints a different picture of where Dorene is at in her Life. I'm omitting the words "and her battle with cancer" because Dorene is tired of the battle and wants to find a way to stay focused on the living of today.

My planned procrastination in posting has to do with other factors also. Sometimes I'm waiting for Dorene to have a chance to tell our Dad in person what's happening. Sometimes I'm waiting for test results or information from doctor’s appointments. Sometimes I wait out of sheer desire and hope for a positive change. Sometimes it is about sorting the words out in my mind before committing them here. Sometimes I just can't 'write' it out loud.

During this most recent posting hiatus a lot has happened. My recount of these things may not be in chronological order but they will hopefully connect...

Dorene has resigned her position at the Veterinary Clinic for good. She also said that they should not wait for her to return and should actively seek a replacement for her. They love her so much they had held off hiring someone else hoping she would be able to return. This was an extremely difficult thing to do, to not just leave for awhile but to say she was leaving for good. She loves working at this clinic. But, it was too difficult to predict whether she'd be feeling up to working on a day that they needed her. Yes, maybe when they asked on Monday if she could cover Friday she felt good and thought sure... but every day is different and more often than not by the time the work day came around she was again exhausted. And even though she only returned for 2 Saturdays a month on a regular basis, those were again 10 hour work days and took too great a toll.

Dorene is still walking most every morning with her friend Pam and her friend Barb joins them on some mornings too. It's a big deal that she has kept this exercise schedule because most mornings she doesn't want to get up to walk and would much rather sleep in. But it is also important to her to keep walking. I don't think I'd be reading too much into it by saying that walking is the way she fights the cancer these days without it being as much like a battle. Though some mornings I think it is very much a battle to get out there and walk. But it's fresh air and exercise with friends. It is a positive action in every regard.

Not long after the Alaska trip Matt picked up a nasty virus and eventually had to spend several days in the hospital to figure out what was wrong. They discovered he'd contracted a parasite and hit him hard with strong antibiotics. He is mostly recovered from that ordeal but is still a bit weak. Through it all Matt continues to attend every single doctor’s appointment with Dorene and to be there for her in every way he can. We would all be blessed if we had a spouse by our side that is so dedicated and loving and I hope you who are reading this has that person in your life.

I'd mentioned in my last post that Dorene had upcoming appointments with her Oncologist and Radiologist for some follow-up scans and such. Those had been postponed while Matt was in the hospital but Dorene has since had those appointments and reviewed the scan results with her doctors. The results were not what we were hoping for and yet no surprise to Dorene. She said that with the way she's been feeling and with the evidence she sees on and feels within her body she knew the results wouldn't be good. She has fluid around her heart, enough that she consulted with a cardiologist but not so much that the cardiologist was overly concerned. He said she had a good strong heart and to contact him if she started to experience certain warning signs.

The body scan also showed tumor growth in size and quantity through her chest area, arms, lungs, and liver. Dorene said the scan was lit up like a Christmas Tree. :-( The tumor in her liver has grown and there was discussion of performing a procedure where they would cut off the blood flow to that part of the liver to kill the tumor. It is thought that it could buy more time but that was a maybe and possibly not worth the hospital and recovery time it would take.

Dorene asked again how much time the doctor thought she had left. At the current growth rate it is thought that maybe less than a year. This year range has been mentioned before so again Dorene was not too surprised this time.

Though not really surprised by these results and estimates, the combination of difficult information to digest and a body that is constantly fighting so always a bit depleted has taken a new toll on Dorene. She has been feeling defeated. Completely and Utterly Defeated. Hope is transforming into something else... sometimes into darkness, sometimes anger and disappointment; and sometimes appreciation for a moment or for a sunny day of raking pine cones, or gratitude for enough energy to clean house and make dinner. We can talk one day and she is struggling deeply within herself to find new ways to deal with what is happening where I can tell that talking to me at all is an effort. We can talk another day and she is bright and joking and in the moment of folding laundry and counseling me to not take on too many holiday shows, and happy with the moment, happy to report on things accomplished and feeling better.

Last week when we were talking her defeat was so complete that I broke a promise to her by pushing her to keep fighting when I've said I wouldn't do that to her. I've promised to be what she needs me to be and not to be what "I need of her" which is of course for her to stay here with me. I tried to be gentle with my prodding to keep fighting but I could tell I was backing her into a corner. She tried to gently explain how tired she is of fighting, tired of being poked and prodded, tired of being disappointed in it all. Tried to explain that her body is telling her a different story than the one I want to hear, than the one she wants to hear. She was trying to tell me that she needs to find a place of acceptance of what is happening today because pushing against it only makes her today more difficult and she becomes incapable of living the life she has now.

And of course I know that she'd like to do nothing more than stay here with me so we can grow old together and tease each other about grey hairs, rocking chairs, and falling or missing boosoms. To stay here for Matt and Candace and our Parents and for you, her friend, her family.

I've spent a lot of time reflecting on the Deborah I want to be for Dorene in these past days. I've struggled deeply with any internal absolute acknowledgement that the doctors may be correct in their time line. Before now I've been able to keep "that" type of information separate from my "hopeful heart." While we've had things to try and work toward I've been able to manage the conversation and planning for the worst outcome because I still had the hopeful outcome to focus on. I had research to do, information to relay, questions to ask, prayers to pray. I'm good at those things.

But Dorene is facing a reality that she cannot ignore. She has tried all the things the doctors have recommended and they have not worked. She eats berries and broccoli and drinks apple and carrot juice and takes her vitamins. She walks, works, fights... and she prays. But the cancer is still growing and she feels it unrelenting in her body. And Dorene has come to the place where the fight is actually doing her the most harm because it is as much an emotional and internal battle as it is a physical one. And when you are at war you cannot find peace and Dorene would very much like to find some peace in today. She doesn't want to be at war any more. She wants her today. She wants her Now.

So while Dorene is trying to do her best with today, while she plans what she will bring to the Veterinarian office annual picnic, or plans the meal for her weekly bible study which she and Matt will host this week, and goes to physical therapy and does or doesn't take a nausea pill so her day can be better… I renew my vow of being the sister Dorene needs me to be with the knowledge that I may falter but will always return to this promise, of doing my best at not leaving Dorene feeling apart from her sister in this part of her journey. And just as I know that Dorene will pray every day for the ability to have peace today and the ability to enjoy what she does have. I know that like I will, and you will, Dorene will hold deep in her heart a place for a new kind of hope, a transformed hope that allows for the possibility of miracles and still has room for the living of today as best as can be lived.

I recently stumbled upon an excerpt of a prayer from a book called “Love and Death: My Journey through the Valley of the Shadow” by Forrest Church which I’d like to close this post with…

“… Let us awaken to the blessing of acceptance,
Expressed in a simple, saving mantra:
Want what we have; do what we can; be who we are.
Rather than let wishful thinking or regret
Displace the gratitude for all that is ours, here and now
To savor and to save,

Let us want what we have –
Praying for health, if we are blessed with health,
For friendship, if we are blessed with friends,
For family, if we are blessed with family,
For work if we are blessed with tasks that await our doing,

And if our lives are dark, may we remember to
    want nothing more than the loving
Affection of those whose hearts are broken by our pain…”

With Loving Affection,
Dorene's sister, Deborah
xoxoxo

Long Time No Post

Gosh!  I can't believe (or maybe I can) that it's been a month since I've posted....

This summer has blazed by.  Let me try to recap the last month.

Dorene, Matt, Candace, Eitai, Uncle Olin, Dena, Benjamin (Olin and Dena's son) all flew up to Alaska for a family reunion.  We had a day at Uncle Jim's where there were 5 generations of Pruitt lineage present.  Tracy's, Jim's daughter, daughter was there with her daughter... did you catch that?  Grandma Mickey who is the Great Great Grandma of Amber's (Tracy's daughter) daughter was also present.  There were a lot of family photos taken but I didn't have a camera and am dependent on others to send me photos.  So anyone who was at the family reunion who reads this... please send me photos! :-)

There were highlights to the trip but it really wiped Dorene out.  It's tiring being away from home and away from the place where you can easily rest or nap... add in trying to keep up with others, trying not to hold everyone else back and as glad as she was to make the trip and see everyone, Dorene was ready to get home.  Unbelievably, Dorene called her work the day after she returned and said she'd work that Saturday.

So, yes, Dorene has taken up a couple of days of her old job back.  She's working every other Saturday and filling in when she can for others.  She's taking this a step at a time, trying to be careful to not take on too much too soon, but she is REALLY happy to have returned to her adopted family at the Vet's office. :-) It is an important step in feeling like she has some part of her life back.

Dorene is still walking for an hour every morning, except on work days, and this too has been an important routine in being proactive in her life and feeling like there is something she can do to help herself and feel like she has some say in what happens in her daily life.  When exhaustion is where most days start any accomplishment is celebrated.

She's also had appointments with both her Radiologist and Oncologist.  Both were surprised at how good she looks.  Obviously the further from radiation and chemo Dorene gets the better she looks to the world.  But it's an interesting observation because in some ways it is good and others possibly bad.  When the doctors look at Dorene's scans they see a different picture of where Dorene is at, but when taking her at face value they are more optimistic.  I think that in someways this contrast in observations is more confusing than encouraging.

Personally, I am really encouraged about where Dorene is today.  Not only is she walking every day, and taking on some work days, she has also stopped taking pain pills.  She is currently without enough pain to justify the pills.  This is pretty significant because she has needed the pain pills for quite some time.  She does still have a bit of a chronic cough, it's not as bad as it was but it fluctuates in intensity.

Adding to all the activity in this past month Dorene's best friend Darlene visited last week for a few days.  They got to catch up, sit on the porch in the sun, and they even went to the... I think it's "Art on the Green."  And when Dorene worked on the Saturday Darlene was there, Darlene completed some sewing projects Dorene had at hand. :-)  That was very sweet. :-)

All in all, these are better days.  Of course we came out of a situation where things were very scary.  That operation really took it's toll on Dorene and as a testament to her tenacious spirit she has come a long way in a short period of time.  Any of you who spoke to Dorene while she was in the hospital can agree that it was a very frightening time.  She was so weak and in so much pain.  And even though she would like to be stronger and not so tired (understandable) she has worked very hard to get stronger and has been just amazing.

I want to say something on Dorene being amazing...  We are all used to Dorene being strong so we almost expect her to do well, to rebound.  But let's not take that for granted.  The reason Dorene is so amazing these days is because of how hard everything is for her right now.  This isn't a normal state of being for Dorene and I think it makes everything even more difficult.  Being someone who could always rebound and power through, who could work crazy hours at the studio job, who raised a daughter on her own, who rarely got sick or was rarely held back even when she was.  A person who fought cancer for 16 years and still excelled in life.  The last couple of years, of being so tired every day, of being so sick for so long... it becomes difficult to imagine that you will ever see better days.  It makes "trying" or "fighting" that much harder.  It makes the effort that Dorene puts into every day that much more admirable.  Doctors say things like "you only have X amount of time left," her body has evidence that makes those comments feel true.  And she is tired, all the time.  But still she fights, she works, she tries.  She doesn't give up, she doesn't crawl under the covers. 

Think of how easily any of us can be discouraged by the smallest of things.  Heck, I had a nasty flu bug for a couple of weeks and I was a wimp!  There was one Saturday while I was sick that I was supposed to work the Saturday market.  I DID NOT want to go.  I wanted to stay in bed and nurse my cold.  But all I could think about was that my sister is going to get up at something like 5am this morning and work a 10 hour day, how can I not go to work too?  I went to work and spent the next day in bed. ;-) lol

As Dorene's Big sister, I'm always hopeful that I can be of help to her, an encouragement, and I'll be so bold as to say even a positive example.  I don't mind being humbled in these efforts and finding myself the one who is helped and encouraged and given positive examples to by my little sister.  To know that she is the best of us and that I am blessed to have been given this wonderful and amazing woman as my sister.  And as I witness her life, I am so proud to be Dorene's Sister, Deborah.

xoxoxo

Better Days...

Dorene had her check up with the Cardio/Thoracic office today and everything looks good!  She doesn't need to return again unless something starts to go wrong with her right lung.  They even said she could go back to work if she wanted and felt up to it, but no Jacuzzis or baths, or swimming until the wound where they removed the stitches today is completely healed.  The right side looked good, just a small amount of fluid.  They said she could stop using the lung expansion device, or as Matt call it the breathing bong. ;-) lol

With that, Dorene has been increasing her daily walks with her friend Pam and they've been walking for about an hour with a very high climb that challenges them both.  The last couple days Dorene has made it through busy days without needing a nap too!  She cleaned house yesterday along with her walk and today had her walk and went to the doctors and went grocery shopping!  Dorene's friend Pam has been a wonderful motivator for Dorene... I think they are motivating each other with these walks.

Dorene has even felt restless enough to wish she still had her job.  Of course, things change from day to day but on these good days Dorene wishes she could return to work and she may speak to her boss about being on call.  We were talking about what great therapy that job is with all the cuddly animals to help and play with.  Plus, getting out of the house and out of your head is always helpful during difficult times.  I'll keep you up to date on where this ends up.  Good days make all things possible again and we are hoping for many more. :-)

There was a period of time where Dorene's appetite was not so great, but she started taking her nausea pills again and that has helped her appetite quite a bit.  Dorene is fully aware of how important it is to keep her body properly fed so she's happy about having a better appetite.  She does have what she calls Pregnant Nose... where she can smell everything and many smells kind of turn her stomach.  We're not sure what that's about but the nausea pills have helped.

Dorene called her Oncologist to make a follow-up appointment for when she returns from her trip to Alaska.  She wants another scan to see where things are at in her body.  I can completely understand wanting to see what's going on especially since every twinge or pain makes you wonder if something has changed.

And speaking of Alaska... Dorene and Matt, along with Candace and Eitai and our Uncle Olin, Aunt Dena and their son Benjamin are all arriving on the 5th!!  Yeah!! :-)  We are all really looking forward to their arrival. :-)

We all continue to be so very grateful for all the people in Dorene's and all of our lives.  Your prayers and assistance from calls, emails, love notes and walks makes a huge difference in all our lives and encourages and brightens Dorene's and Matt's days.  We are truly grateful for you!

Love,
Deborah
Dorene's Sister :-)
xoxoxo

From Dorene ~ June 30, 2010

Dorene watches Grey's Anatomy reruns and there are often segments where Meredith Grey speaks about the episode that resonate with Dorene... here is a recent segment that hit the nail on the head that really described how Dorene felt after this last surgery...

PAIN
You just have to ride it out
Hope the wound that caused it heals
There are no solutions
No easy answers
You just breathe deep and wait for it to subside
Most of the time pain can be managed
But sometimes, the pain gets you when you least expect it
It hits you way below the belt and doesn’t let up
Pain
You just have to fight through
Because the truth is
You can’t outrun it
And life always makes more

Dorene is Home!

Yeah!!! :-)

Don't know any more than that at the moment... waiting until tomorrow to call to give her some time to settle in and rest.

So Glad She's Home!
Deborah
xoxo

Friday, June 11th Update

I haven't talked to Matt or Dorene yet today but Matt posted this on Facebook this morning...

"Dorene is doing much better today, they removed the drain tube and she got a good nights sleep last night. They just want to monitor her one more day and then she can come home. Thank you to everyone who has kept her in their prayers."

Thursday, June 10th Update

I didn't update the blog yesterday because I... well, Dorene wasn't doing very well yesterday and I was upset.  Sorry about leaving you hanging but sometimes it is tough to write the rough days.

But today, at least as of 11am Dorene's time she is a bit better.  She doesn't get to go home today but she asked them to increase her pain meds last night and that is helping.  She was in terrible pain yesterday and was so miserable that she didn't want to talk.  Today she was able to stay on the phone long enough to give me all the updates which are...

Up'd the pain meds which is helping but didn't get much sleep last night.  She had a room mate who kept getting out of bed and setting off an alarm because she wasn't supposed to get out of bed.  Dorene was about to tell the nurses to "shoot me now" when they moved the lady closer to the nurses station because of her disorientation and trying to walk.  Phew!  Still not a lot of sleep...

You know how hospitals are, always messing with you which sometimes is a good thing but when it comes to sleep it is terribly frustrating.  They wake Dorene every morning at 4:30am to X-ray her lungs, an hour later they come in to take vitals, and the whole day is like that so Dorene tries to get in naps in between all this stuff.

The X-ray today hadn't improved so they gave her more IV antibiotics to stave off pneumonia.  She has to do a breath inflating exercise as often as she can to keep her lungs strong and to re inflate the part of her lung that collapsed... she is still at the very bottom level of where they want her to be which is one of the reasons she can't leave yet.

The drainage tube seemed to pick up on draining yesterday but may be slowing down today... this is another thing that is keeping Dorene in the hospital... it has to slow or stop so they can remove the tube.

Good News... Dorene gets to take a shower!  She is happy about that.  And now that her pain is at least bearable she is working on her breathing exercise more today and she is hoping to get in her walk.  She has to have a nurse with her to do this.  Yesterday she couldn't do much because of her pain.

AND... Candace is arriving tonight to help Dorene and Matt at home!  I know that having her Candy Cane will lift Dorene's spirits. :-)

Where I've encouraged you to call Dorene in previous postings I'm going to suggest that you hold off today so she can get in as much rest as possible.  Hopefully this posting will give you all the info you need and if not call me or drop me an email and I'll try to answer any questions.

Thank you for your prayers,
Deborah
Dorene's Sister :-)

Tuesday, June 8th Update

Well... Dorene is doing much better today (Tuesday).  Yesterday, come to find out, was pretty rough.  They had her on a drug that almost stopped her breathing but really didn't help with the pain.  It had her practically unconscious all day yesterday but they fixed that this morning with a different drug which made Dorene capable of most everything, speaking, walking, staying awake... and it did a much better job with the pain.  Thank Goodness!!!  Gosh... if Matt hadn't been with her all day yesterday who knows how it would have gone....

They had decided the epidural type shot could cause complications so they didn't do that... of course how could they consider it with the drugs they had her on.  Anyway...  the basics are that they continue to monitor her... the tube continues to drain.  And she has to do an inhaling test and she can't leave until she can inhale to a certain level.  The tube drained a lot on the first day but not very much today so hopefully it will come out soon.

There is a strong chance of getting pneumonia which is why the lung expansion exercises are so important.  Dorene wants out of there so bad she is doing them twice as many times as they have asked.  She has one of these to use at home too.

Dorene has her cell phone in the room so you can feel free to call her to say hello.  She'll let you know if she has to go.

More info as I have it to share...
Love, Deb xoxo

They did the surgery.....

There was 800 cc's of fluid... So they had to perform the procedure. Dorene will be in the hospital at least three days. There is currently a drain tube to monitor along with keeping a general eye on her as she adjusts. Good news is that she can have an epidural to block the initial pain and the doctor thinks that because of her general health she will recover in a week instead of 3-4. Also, despite seeing tumors which he biopsied he said he'd seen much worse. Guess that's good news...

More info as I have it...
Typing on mobile &-)
Deb xoxo

Monday... Surgery? Maybe...

Dorene is scheduled to have a surgery tomorrow morning where a Cardio/Thoracic surgeon will make a small incision in her side to bring a tube to her plural lung sacks, empty the fluid and then blow talcum powder into them.  The talcum powder will cause the plural sacks to stick to the lungs and they won't be able to fill with fluids again.

Dorene IS NOT looking forward to this and for very good reason.  The procedure will cause her intense breathing pain for a minimum of 3-4 weeks.  Think of the worse case of pleurisy you can imagine and that is what she will be going through.

Q&A on this procedure... Yes, she can live the rest of her life, a long life if we're so blessed after they do this.  They will only be doing this to her left lung plural sack, the worse affected by fluids, they can only do one at a time..  If her lungs continue to build with fluids this way there are many dangers, collapsed lung, infection from the draining procedure are two of the biggest issues.

But... it feels to Dorene that the sack didn't fill as much or as quickly since the last draining.  She has during this time been on antibiotics to fight off any possible pneumonia and we are wondering if that has helped.  So... the plan in the morning is that "if" the lungs only have 300 or less cc's of fluids in them, they will postpone the procedure to see if the antibiotics will continue to resolve the issue.  "If" the lungs have around 400cc's of fluids they will probably proceed.  Matt and Dorene have discussed this in detail so Matt will be (as he always is in their doctor/hospital visits) Dorene's advocate and halt the surgery if the fluids are within the range that Dorene and Matt have agreed upon to wait.

If they proceed with the procedure Dorene will be in the hospital for 2-3 days.  She will be at the Sacred Heart Hospital in Spokane, Washington.  Matt will call me when it is over, or - if the fluids are low and they decide to cancel and go home.  The surgery is scheduled for 7:30am, they have to arrive at 5:00am.  We should know something by 10:00am.  The procedure isn't supposed to take long.  I'll post again when I have an update from Matt.

Love,
Deborah
Dorene's Sister

Back from the hospital...

Matt was driving Dorene back from the hospital and she called to tell me she is doing much better.  It wasn't her right lung after all.  The left lung had filled up with more fluids.  They pulled 600 cc's more out of her left lung.  The E.R. doctor thinks she has a little bit of phenumonia so to be safe he prescribed more antibiotics and gave her a prescription for a stronger pain pill.

Dorene and Matt have a bunch of additional questions for the Oncologist tomorrow... I'll update again after I hear about that appointment.

A Post Script to Yesterday's Post...

Dorene and I were just on the phone and talking about this odd situation with a possible life timeline and I wanted to clarify that a bit here for you because I don't think I spoke to this enough in my earlier post...

Yes, this cancer in her lungs is really bad news and yes, it seems to have picked up speed in growth, so yes, we are currently (I want to stress currently as things change every day for the good or the bad) looking at a life timeline.

But... there are days when Dorene feels better and thinks she is looking at a year or two... and there are days she feels bad enough that she feels it will be months.  Lately, because of the fluid in the lungs and the toll that's taken on her she has felt like months.  But even in the midst of all that, the day they removed the fluid from her left lung she felt so much better she felt like she was back in the years time space.

There are lots of cliche's to speak to this and for some reason the one of "It's not over til it's over" keeps popping into my mind.  We are trying to be prepared but we are also holding onto our hope for a change or turn around.  Hope is powerful and no one has given up. 

Here I am writing a post to let you know that we are holding onto our hope and Dorene is getting ready to take herself to the emergency room because the right lung area has become very painful and she is short of breath again and she can't wait until tomorrow for them to drain the right side.  Because of this, today, Dorene feels like she's in months mode but once they remove that fluid I'm sure we'll be back in years mode.  It's a day to day and moment by moment thing...

Keeping Hopeful,
Deborah
Dorene's Sister :-)

Dorene asked me to post this...

I wrote Dorene a letter this week because I needed to say some things and didn't want to cry through the entire attempt.  Dorene asked me to post the letter on her blog.  She said... (teary eyed as I type) that she wants everyone to know how much her sister loves her.  This feels awkward, but I've promised to do as Dorene wants (wink) so here it is...

May 28, 2010

To My Beloved, Sweet Sister, Dorene… :-)

My mind has been in many places since Tuesday and like we were talking about earlier today, there is this feeling of walking in a fog, not being able to focus…

But something occurred to me today, something I’ve not yet shared with you and I thought I’d do it in this letter so you can hear it without me crying while trying to say it.

I haven’t given up for you Dorene!

Yes, we have been given some seriously bad news and because of that I am going to be here to help you in whatever way I can. I will try to help you have the best quality of life you can have and I will help you do whatever it is you need and want to do. We can talk straight, like we always have. I will continue to be your advocate. Whatever it is… I am here.

But…

I will continue to have hope for you Dorene. My hope may be challenged, I may be terrified, and my talks with God even more intense, but this is the way I see it…

Today
You Are Alive
It might be a good day, a hard day, or a really crappy day
But
Today
You Are Alive
And While You Are
There “IS” Hope
And EVERY DAY
I WILL Hope FOR YOU
even if you can’t hope for yourself
even when we have both been brought to our knees with despair and fear
I WILL Hope FOR YOU

We may not get one
And like you’ve said before
Maybe God did give you your miracle already
and that’s why you’ve lived 17 years with such a serious cancer
maybe God brought you this far so you could see Candace to this time where she has grown up so much and become such a wonderful young lady, responsible, looking toward her future, with such a kind and sweet heart.

But…

Miracles Do Happen
And if it’s a miracle we need
Then I won’t give up having hope that we will get one.
I WILL Hope For You
Even if you can’t
Every Day You Are Alive.

There’s going to be a lot of talk of dying
We will talk about, plan for it, we will even joke about it
Because we must
And I want you to know that while I will continue to have hope
I won’t let that hope hold you down
I won’t let my hope cause you to suffer
I want to say this clearly because I think I’d be afraid of this
I will make sure that the people around you let you go if it is time
I will not allow you to suffer over our despair at losing you
Not even because of my own despair

I will stand strong for you in whatever way you need me to
I will not falter Dorene

But never forget, that in the midst of all of this
Even after having to write these words
I have Hope for You.

I LOVE you more than any written word can say
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Your Sister,
Forever and Always,
Deb

A Tough Update to Write... it will be tough to read too...

As you may know Dorene has had problems breathing and in going to the Radiologist she was told that this is one of the side effects of radiation and that it would dissipate over time. She was given antibiotics but after she finished the prescription and even during taking it, it felt like her lungs were worse and not better. She called a couple more times during the weeks after her last appointment and she was told again that the radiation continues to build in her body after her last dose and in a few months when it starts to dissipate so would the lung symptoms. But it got worse, and Dorene called and insisted they do another CT scan because she knew something was wrong.

Something was definitely wrong…

Both Dorene’s lung peritoneal sacks were filled with fluid. Her left lung had 60% filled with fluids. And… the radiologist told Dorene and Matt that her lungs were “fully involved” with tumors. The radiologist said Dorene needed to start chemo right away. Dorene and Matt saw her oncologist…

The oncologist made an appointment for Dorene to have the fluid removed from her left lung sack. They removed over a liter of fluids! Dorene will have the right lung area drained on Tuesday. They can only do one at a time. They’ve sent some of the fluid off to be tested and we are all very interested in knowing what it is. The radiologist thought it was a by-product of the tumors. But we want to know.

The oncologist didn’t quite agree with the radiologist, on a couple of points… she thought that the tumors were in Dorene’s chest wall, not her lungs. But Dorene makes a good point in saying that it is the radiologists job to read scans every day and she is leaning towards the radiologist’s diagnosis. Neither is good, Dorene’s body has these tumors one place or the other. In the lungs is a bit more frightening though.

The other point that the oncologist is not in agreement with the radiologist is on the point of chemo. The oncologist said that the only way more chemo would work is if Dorene’s cancer was receptive to the chemo which it has not been so far. The chemo may delay things for a short period of time but it is unlikely that it would make enough of an impact to make it worth going through.

So Dorene asked… “How much time do I have? By the way I feel these days it feels like 3 to 6 months.” The oncologist said that without further treatment that is probably an accurate guess. So Dorene asked… “And with more chemo?” - - - maybe a year…

But a “maybe” and a chemo that Dorene’s oncologist doesn’t want Dorene to take because of how bad it is, and how sensitive to chemicals Dorene is.

So, at this time, Dorene has had to leave her job at the veterinarian’s because she hasn’t been able to do it and when she tries it is too hard on her. And she is trying to live each day as best she can. She still feels terrible from this lung problem and we are hoping that Tuesday will bring more relief when they drain the right side, and maybe an answer on how to keep the fluid from continuing to build.

And, Dorene is making plans, life plans. She wants to come to Alaska to visit family here and Dad has offered to send her and Matt up to us. Dad and Pat are going to visit Dorene and Matt in Idaho in June. And our half-brother, David who works for Delta Airlines has very generously offered to send Dorene and Matt anywhere Delta flies. They are hoping for Tahiti which is a long dreamed of destination for Dorene. Aunt Susan has also offered tickets to places Dorene wants or needs to go. Everyone wants to help. It is such a blessing and to have this love and these blessings at such difficult times and it means so very much to us. Everyone in our family has reached out to Dorene during these times and I can’t help but note that not everyone has a family like we do. We are blessed.

Dorene and Matt are trying to make these things happen within the next 2 to 3 months.

The lung scan knocked us all onto our knees and the 3 to 6 months possibility, as you can only imagine, has devastated us all. We have definitely been in a period of shock. After all… this can’t be happening. We are trying to get our bearings, trying to be realistic and look at what we need to do. But I also want to say… that even with this unbelievable news, I continue to hope for Dorene and I will hope and pray EVERY day. I know you will too.

With Love,
Deborah
Dorene’s Sister

From Dorene ~ May 26, 2010

I feel like I’m moving in slow motion
I’m moving in slow motion
and everything around me is moving so fast
I just want to go back to when things were normal
When I wasn’t poor Dorene, sick with cancer
But I am, so I can’t
and I’m just stuck
and there’s all this pressure because everyone is waiting for me to do something
But I don’t know how to do this
I don’t know how to be this person
I don’t know who this person is
How did this happen?
How did we end up here?

Quick Update from Deb...

I wanted to let you know that Dorene has in some ways been having better days.  Really it is an up and down thing... she feels better one or two days then doesn't.  It may be that when she feels better she tries to do more and then gets tired because of the extra activity, or it may just be the nature of what her body is going through right now.  But it does feel like she is having, at least some, feel better days.

The cough is still a big issue.  It really has not subsided so Dorene called the Radiologist again and they confirmed again that it will take months for the cough to go away and it is because the radiation is still working in her body, or present and active... basically, the cough will not get better yet.  This is a pretty big annoyance as it creates a chain reaction within her body.  Talking irritates the cough and the cough causes pain and puts her out of breath and she often has to take a pain pill to help manage it.  It is a big obstacle at work, especially when she is manning the phones and having to talk to customers.  The radiologist offered Dorene steroids again saying it would help, but the last dose did bad things to her so she isn't willing to go there again... she chose to wait it out.

Speaking of work... I believe I mentioned before that Dorene went down to two days a week, or at least said she was considering it.  So she took that big step, which was hard for her to do for several reasons.  It makes her feel the cancer is winning and it is against her nature to let go of work when there are bills to be paid.  But with the assurance of family members to pitch in to help compensate for those lost days and really just the realization that she needed more rest time, Dorene took that big step.  I think it is already working out for the best as I've mentioned I feel like I see more good days happening.

Dorene is at work today and I'm about to start a big studio day myself but I wanted to give a bit of an update so you wouldn't have to wonder.

With Love,
Deborah
Dorene's Sister ;-) xoxo

From Dorene....

Dorene and I are on the phone and she wanted to share a couple of things with you...  One, is that she is taking a small break from treatment decisions until Memorial Day.  She has some living life things going on in May and she's working on recovering from the treatments she's already gone through by eating healthy, taking her vitamins, resting and when able working in the yard and soaking up some sunshine.

Dorene has a quote from one of her favorite shows "Grey's Anatomy" that really resonated with her about the journey of dealing with cancer.

"In surgery, the healing process begins with a cut.
An incision.
The tearing of flesh.
We have to damage the healthy flesh in order to expose the unhealthy.
It feels cruel and against common sense.
But it works.
You risk exposure for the sake of healing.
And when it's over.
Once the incision has been closed.
You wait.
You wait and hope your patient will heal.
That you haven't in fact, just made everything worse."

One of the reasons this resonates so much with Dorene is that after she finished radiation and she was all burned and hurting she was thinking... "What have I done?"  "I can't believe I've let them do this to me again."  But now... weeks after the last radiation treatment where every day in between made it feel like a big mistake... Dorene sees that it has helped.  That she can put her hand on her stomach and not cringe from the masses of lumps sitting beneath.  And she feels the same about the chemo experience.

Quick Update...

Dorene and I intend to get together on the phone so I can tell you the latest in her words but that didn't happen today so I wanted to give you a quick short update.

The radiation has helped a lot.  Where at one time Dorene had so many bumps on her chest and abdomin that she avoided touching them because it made her feel like she was dying... they are mostly gone now.  AND, the larger lumps that were about to ulcerate are very small and the skin is healed and feeling much better.  It's strange how the radiation keeps doing its thing long after the last treatment.

Dorene was feeling some relief from the lung/coughing issue when I spoke to her last.  They took her off the steroids and put her back on the antibiotics and she was finally feeling some relief and feeling a bit better.  In fact, she made it through her two days in a row of 10 hour work days without feeling like it was more than she could take.

Dorene had an appointment with her Oncologist today, Tuesday the 20th, and I don't yet know the results of that.  I hope to talk to Dorene in the next day or two to give you more information.

Love,
Deborah
Dorene's Sister :-)
xoxo

Correction to "Should Have"

I misunderstood Dorene when she was telling me about what the situation with her lungs is... I thought the "nodules" were thought to be the neumosis but she has nodules and a white fuzziness in the CT scan and it is the white fuzziness that is thought to be the neumosis and so there are nodules in her lungs that have not been fully identified.  Dorene still has her appointment with the oncologist on Friday to find out more about what is going on and what the nodules and white fuzziness mean.

Dorene sent me another recording to transcribe... it is from a week or two ago when she was still going through radiation, or had just finished so it will be a post dated post which I will try to transcribe tomorrow.  But Dorene did tell me today that the itching/burning from her radiated skin is getting better.  Once she is fully healed she can look at scheduling the surgery to remove the other inplant...

More in a day or so...

Should Have....

I should have posted to the blog two Tuesdays ago when it was the day Dorene had her final radiation treatment and life was feeling a bit bright and shiny and Dorene was happy to have that over with and looking forward to feeling better. When Dorene was going to have an entire month free of doctor appointments and only have the relaxing Reiki treatments... but I didn't share that happiness with you all at the time it was happening and I apologize for that.

After the final radiation treatment Dorene was continuing to feel crappy because the radiation does this soaking in and accumulation thing so the happy day of no more radiation was tempered by the increasing discomfort from the itchy, burning and painful skin they'd radiated; and the pain she's been feeling in her chest and chest bones and lungs was continuing to increase until finally last Friday (the 2nd of April) while at work and while being in so much pain she had to take a pain pill... Dorene worked her full day and then drove herself to the hospital because she was afraid the staph infection was back or, believe it or not, hoped she had walking pneumonia because the alternative to the pain was not going to be good news.

The E.R. doctor took x-rays and a CT scan of her chest and found "nodules" which they couldn't identify as to what they were. This was very shocking to Dorene because before this her lungs had been clear. E.R. prescribed antibiotics in case it was pneumonia and sent the scans to her Oncologist so they could go over them on Monday which they did yesterday. The oncologist wasn't available but her nurse practitioner was and she thought the nodules were a lung infection called Neumosis (sp?) and prescribed Dorene a very strong dose of steroids. If it is neumosis then Dorene will feel relief within 24 to 48 hours... she has an appointment with the Oncologist on Friday to see if she's had any relief and if not to look further into what is going on.

In the meantime Dorene has talked with her employers and said that she doesn't think she can keep up her current schedule. She explained to them that at the same time she doesn't want to lose the job she loves and needs she also doesn't want to burden them by not being able to work as much. In other words, she told them she would understand if they couldn't accommodate her needing to work less days and if they would need to replace her. For the time being it looks like they still want to work with her on this and make her schedule easier. If it is neumosis and Dorene feels some relief after the steroids do their thing she may start by taking one day off every other week. This would put her on a schedule of two days one week and three the next. We have to remember that she works 10 hour days and has to be up by 5:30am to get to work to open the Veterinarian office by 7:00am so it is still a pretty intense schedule... but she is hoping she can maintain that schedule. If not, she'll look at only working two days a week.

Dorene did take a few days off this week to rest. She worked part of the day yesterday and then went to the Oncologists and she doesn't work again until Saturday. She'll probably make a decision on how much to cut back on work after her doctor’s appointment on Friday.

It is very difficult for Dorene to let go of these hours, not because of how much they need the income, but because it makes her feel like the cancer is winning and continuing to take away all the things she enjoys. But we've talked about how the priority has to be her ability to give her body the rest and healing ability it needs and to not tax it too much. It is a strange tight rope because on the one hand the work is good for her soul and gives her a lot of joy but it is very physically demanding for her to keep up this work schedule and she is realizing that in giving it up, or some of it at least, she is giving her body what it needs right now which is rest to heal and fight the cancer.

I should know more after Friday and will post again then.

Better Days and “Hope”… a post by Matt

Matt sent me this email today asking that I turn his thoughts into a post but I find that Matt did an excellent job himself so except for a little bit of editing I am posting Matt’s email…

“I know you gave me the ability to post to the blog but I am not near the wordsmith you are. There have been several really good things that have happened over the last week or two and I am hoping you can put a positive spin on the blog by sharing them.

I am happy to report that Dorene has been able to get out in the yard, do a little work, and feel the sunshine! Life has felt close to “normal” this past weekend and we are both lightened by the experience.

Some of this is because several areas of stress have recently been relieved: One big thing is that being off of the hormone therapy has made a dramatic difference in the way Dorene “feels”; and the 2nd big thing is the loving support Dorene has from her family has helped her spirit in incalculable ways. Family and Friends have been reaching out and offering assistance where they can and the combination (plus some things mentioned below) has Dorene almost back to herself! I don’t want to jinx things… but I personally feel we have a much better outcome ahead than some of the darker days and weeks that we’ve experienced of late. I know some people follow the blog and I would like for them to have the opportunity to feel the hope we are feeling today too.

On a fun note a friend of mine gave us tickets to the Tim McGraw show in Spokane with Lady Antebellum which Dorene had really wanted to attend but felt it would be too big of a splurge. The gift was for four tickets so Dorene has invited her super kind boss/friend Susan and her husband Don to join us. We are really looking forward to another “normal” and fun day in the world.”

Also, Dorene is really enjoying the Reiki treatment and experiencing positive results and I too recognize a beneficial change since Dorene started that treatment. This has been one of the most positive weeks in this fight we have had in a very long time and I hope you can reflect that in your wordsmithing skills to give family and friends a glimmer of hope as I got to enjoy myself today.”

Thank You and Love,
Matt

Well brother Matt… you did just fine on your own. :-) Just a little bit of Deb Editing. ;-) lol – What a great day to post to the blog!!! xoxo Deb

Dorene had quite a week...

Last week was very busy for Dorene and that is hard on her.  I'm wondering if I can count how many doctors she saw last week and even the week before... Cardiologist, Radiologist, Oncologist, Therapist, and Reiki Therapist.  There was also a bone scan and her job at the veterinarians.  And... radiation treatment 5 days a week.  Dorene is tired and the radiation is taking a toll... as we knew it would. 

The Good News:  The Oncologist has new ideas on treatment plans once she is done with radiation.  We were wondering if we'd run out of options, so I consider it good news that the Oncologist thinks there are other options.

But before they explore those new ideas Dorene has asked that they remove her right implant.  There is no hope of being able to reconstruct her left breast side... the staph infection and all the surgeries before that have left no tissue to work with so Dorene wants the other implant removed which makes good sense.  She'd rather be flat chested on both sides than the uncomfortable lopsidedness she is dealing with right now.  There's also the fact that with the tumors on the right side she can rarely wear a bra, or to do so is painful.  It's just uncomfortable all around.  So... after 5 to 6 weeks of radiation therapy Dorene will have another surgery.  If you've talked to Dorene lately you'll know the last thing she wants to do is have another surgery but that is how uncomfortable and awkward she feels right now so that is next.

In hopes of counteracting the exhaustion Dorene is now seeing a Reiki Therapist and she really likes her.  After her first appointment, after two crazy weeks, Dorene left feeling relaxed and not hurting as much... she felt so good from the treatment that she went to the store to buy some carrot juice to add to the "doing good things for her body" but sadly they were out and she had to choose another juice. :-( If you're wondering what Reiki is... well there are many forms... this one is the energy touch Reiki where the therapist places her hands on areas that need healing or body energy areas.  Dorene said it was very enjoyable and relaxing and she has another appointment next week.

Dorene has a lot of nausea from the radiation so taking her vitamins has been difficult but she's looking into protein and liquid vitamin options she can add to juice.  Fresh juices are very healing and though Dorene doesn't have the energy, or even the time these days, to juice at home she is looking at buying fresh juices from the store she can doctor up.

I recently tried out the energy drink called FRS.  It is a product Lance Armstrong supports and it has a supplement in it called Quercetin which has positive cancer fighting properties in it.  I like it.  It has helped me with my own energy levels and it doesn't give me that icky, jittery feel.  It's really subtle... I just kinda feel "awake."  So Dorene is going to look into getting some for herself to see if it will help her too.

The Vet office has very kindly met Dorene's need to come in late each weekday work day (usually she has to be there by 7am) because of the radiology treatment that are generally around 8:30am. They are letting her come in after the treatments. But despite this and other wonderful kindnesses the exhaustion has Dorene worried about how, or if, she will be able to maintain her job. She loves her job at the Vet's office and they love her, but the radiation schedule along with her doctors appointments and the increased and increasing exhaustion has her wondering how long she can keep this up. I'm hoping that the Reiki sessions and an increase in good for her vitamins and protein drinks will help.  Dorene has had to let go of so many things she loves during this time and it will be hard on her if she has to let go of that job.  Financially and Emotionally.  And Dorene is so considerate of their needs she hates to inconvenience them to ask for more time off.  She feels she is already coming late and then she'll need time for another surgery... she worries about asking too much from them, and also worries about the toll it has having on her.  She doesn't see how they could hold the job for her if she were to need some extended time off.  They run a specific staff shift and she fills one slot.  Well... hopefully there will be a way for Dorene to keep the job and have the time she needs to heal and rest.

On top of constantly being exhausted... Dorene has been having a hard time getting to sleep.  The other day she laid down for her nap and where she can usually doze right off she struggled getting to sleep and missed her nap time.  She's had the same struggles at night and because she doesn't like to take sleeping pills because they make her groggy the next day she's having a hard time finding a balance of some pill assistance without too much.  I wonder if it's the radiation?  Maybe it is just the stress of the last few weeks and she'll sleep better soon.

Think that's it for now... I want to thank those of you who've sent information you've seen about fighting Breast Cancer our way.  We welcome any new information and appreciate your help... we love you!

Until Next Time,
Love,
Deborah
Dorene's Sister :-)

Cancer... the gift that keeps on taking by Dorene - February 21st 2010

You’ve all heard the term, “nickel and dime you to death”… well, that’s what cancer does. It nickel and dimes you to death, it’s always taking. Sometimes in large amounts, sometimes in small amounts. Sometimes a breast or two and sometimes just a walk, sometimes a little yard work on a sunny day, or perhaps a load of laundry… whatever it is, it is always taking.

I’ve started doing radiation again and one of the things it is taking this time is that you are not allowed to go into the hot tub, which may not seem like a big deal to most people but to my husband and I, it’s one of our favorite things to do. It’s one of the places that we’re able to connect at the end of a long hard day. We go out at night and we are fortunate that under the beautiful Idaho sky you see millions and millions of stars. In fact, one of our favorite things to do is to see who can find the most satellites. That’s how clear and bright our skies are that we are actually able to see the satellites go floating by.  It’s our time to reconnect, and to talk with each other, and share the stresses of our day… so when you take that away, even though it’s small, it’s still something big. So one of my joys of radiation; besides red, burning, itching skin, is that I can’t sit in the hot tub and spend that time with my husband. So like I say… it’s the gift that always keeps on taking… nickels and dimes you to death.

I’ve spent most of this last year in treatment, so over the course of the year I really didn’t do much. I wasn’t able to work in the yard, which is something that I actually really enjoy doing. I wasn’t even really able to do housework… but I don’t enjoy that. lol - But it’s the matter of the not doing anything… when you realize a year has gone by and you’ve really pretty much laid in bed.  You think of all the things that you’ve missed during that year… perhaps a bike ride, maybe just walking the dogs… its simple things… but you’ve missed them all.

I took a look in the mirror the other day and realized “wow” how much this last year has aged me. I barely recognize that person in the mirror any more, and although I know I am getting older… the amount of wrinkles and gray hairs that I received in this last year… just seemed insurmountable.  It’s just amazing… I feel as though I aged ten years in this last year. It’s just more of nickel and diming you… you know it takes a little here, it takes a little there, and all of a sudden one day you wake up and you just don’t even recognize your life any more.

It’s amazing when you have just a normal moment in your life… how much it stands out now… that you just did something normal. “Honey, I cleaned the house today!” That’s actually quite an accomplishment for me and it’s just something that used to be normal. I’ve really missed my life over the last year, I’ve missed it immensely, I’ve missed out on a lot of joyous moments. I’m really hoping that I’ll be able to return to it again soon. But like I say, it nickel and dimes you to death. Cancer IS the gift that keeps on taking.

Cardiologist...

This is a quick post to let you know that Dorene's heart looks healthy and strong.  It is almost certan that Dorene was having stress/panic attacks which they will treat.  She is however, going to wear a heart monitor for a couple days to record the episodes just to make sure these are panic attacks.

It hurts my heart that Dorene's stress is so severe that she had such intense stress attacks she thought she was having a heart attack... she has excellent reasons to be this stressed and I am glad they will treat her anxiety but still... makes my heart hurt.

On the other hand, I'm greatly relieved that chemo didn't damage her heart which was one possibility.

I'm also greatful because Dorene and Matt have had a couple of good news days... not cancer related but life related and both these things should relieve some stress in their lives.  For the first time in I can't recall how long they felt like going out to lunch and a movie. :-)  They used gift cards they'd been given for both... but they've had these cards a while now but life was so heavy they didn't feel like being in the world doing normal things.  Today was a wonderful day! :-)  They were going to see Avatar in 3D... reports to follow. :-)

Love,
Deborah
Dorene's Sister
xoxoxo :-)

No longer a private blog...

Access to the blog was a pain for those who don't already have a google account so Dorene had me make the blog viewable to all.  This means it will be much easier for you to refer someone to the blog instead of having to send me their email. :-)

A Shitty Day - but also things to be grateful for

Dorene chose the title for today's post... it expressed the frustrations of the day for her...  Okay... onto what happened today:

Something I neglected to mention in my first post is that Dorene has had serious heart palpitations where she thinks she is having a heart attack and needs to go to the emergency room.  This is increasing and Dorene had an appointment today with her General Practitioner to get the Cardiology referral she needed.  But yesterday while at work the heart palpations got so bad that at one point she couldn't move at work while helping a client.  She had to just sit there and try to breathe until it faded. She then drove herself to the emergency room...


They did some testing and decided Dorene was not having a heart attack and essentially kicked her out saying she needed to see her doctor.  Buttheads!  But as Dorene was leaving she sat up from the gurney and thankfully the nurse was at that moment checking her heart rate and her heart rate sky rocketed right there while being monitored which made Dorene feel better and not like she was over reacting which is the way the ER doctor had made her feel. Before they discharged Dorene they gave Dorene a shot of Dilaudid, to supposedly relieve her stress (and which Matt informed me is a test as to whether it is true stress causing the issue), which kicked Dorene's butt!  She didn't even think she could walk to the wheel chair she was so out of it.  They asked her how she felt and she said "I don't feel anything." Lol – Matt thought he might have to carry her to the car.  Dorene went home, slept for 3 hours, got up for an hour or so and went back to bed at 7pm and slept all the way through to this morning at 8pm and said that if they hadn't had doctor appointments she'd have been back in bed to sleep some more.  They also prescribed some Xanax for anxiety and she did not have a stress attack despite having a very rough day.

So, today, she got her referral to the cardiologist and has an appointment on Friday to make sure her heart is okay and to confirm and treat this anxiety.

Today, Dorene also had the last set-up appointment at the Radiology Center.  Dorene doesn't like these people at all.  They are cold and distant and don't seem to care at all about her fears, or her work schedule, or anything personal.  They just handed her a schedule they generated without having spoken to her about it and when she said, AGAIN, that she has other doctor appointments and work to think about they said they were very busy and this is her schedule and maybe they could look at it again tomorrow.  No, let's see if we can make this easier on you.  No, we're sorry about this... our schedule is completely full right now but we'd be happy to see what we can do, or maybe we can improve on this schedule in a week or so.  They are not nice and concerned caregivers. If Dorene had another option she'd take it but there is none.

Dorene was telling me how neither she nor Matt can believe how fast the tumors are changing right now or how quickly they are ulcerating.  She said they are like little scabs right now and she may have only a day or two before they ulcerate. :-(  And they can see a marked change in them every day.  When she asked the Radiologist if this would stop the tumors from ulcerating, she said "that's what we're shooting for."  So there is no guarantee this will stop the tumors from ulcerating. :-(

Dorene has her first radiation treatment tomorrow, and a bone scan appointment.  She has to go back and forth from the hospital and town three times tomorrow. %-}  And because of the crazy doctor appointment schedules she has asked for the rest of the week off work which her employers were more than happy to accommodate.  They are such nice people.

Okay… lots of icky things to share today.  Here is what we are grateful for today:

We are grateful for Matt, who is an amazing husband and medical advocate for Dorene.  Who works very hard every day at trying to improve their situation so that Dorene doesn’t have to work at all if she doesn’t want to.  Who has taken on not only all of the financial responsibilities but most of the home care responsibilities so Dorene can rest and not worry.  Who is more than willing to be the “bad guy” in any situation if it makes people pay attention to what Dorene is saying. Who is doing everything he possibly can to help the love of his life, his Dorene. Yes, we are very grateful for Matt… today and every day. :-)

We are also grateful for the all the people at Dorene’s work at the Veterinarian Office who love and support Dorene and who are willing to work with her in any way they can to help her during these difficult days.  Dorene had to take the rest of this week off to attend to all of this medical stuff and they didn’t blink an eye at saying whatever you need!  What a blessing this job has been to Dorene because there are people there that love her and care about her well being, because she gets to help animals and that gives her something to focus on besides all the difficulties in her own life, and yes, because she needs the job.

We are also grateful to Uncle Jim today, who helped Matt and Dorene through a difficult financial situation this week. Hearing about an unexpected large expense he simply said… let’s take care of it and eliminate the stress for Dorene. And he did! :-) Thank you Uncle Jim for your generous and loving heart!

And we are grateful to each person who reads this blog, because that means that you love and care for Dorene, are praying for her healing, are or have been helping her through the difficulties she has faced lately. “It takes a village” may have turned into a bit of a cliché but true phrases become cliché’s because they are true. An illness like this cannot be fought by the ill individual alone…. It takes the love and support (whether emotional or practical) of everyone around that person and everyone in Dorene’s life has responded with loving generosity. Yes, we are so very grateful for YOU!

Love,
Deborah
Dorene’s Sister :-)
xoxo

As of February 15th, 2010...

I'm going to start with Dorene having a chemo/treatment sensitivity test in December?? I've lost track. This is the test we tried to have through Dorene's surgeon in California, Dr. Nigro that fell through due to his own increased battle with cancer. Sadly, and devastatingly to Dorene, Dr. Nigro passed in July of 09'. But, I believe that was well over a year after he'd been diagnosed with a terminal, non-operable cancer that was to take him in a few months. He fought well and hard and we will always be grateful for everything he has done for Dorene over the years of her battle with Breast Cancer.

This sensitivity test was from actually harvested cancer cells from Dorene's body. The lab sent a representative to Idaho to oversee the extraction of cells and personally ship them to the lab which was wonderful. The test took the cells and exposed them to all the currently known and used treatments of chemo or chemical type to discover the greatest "cell death" results.

One of the first results was that the chemo that Dorene was currently on was going to have little or limited results which Dorene already knew because she could see that the tumors on her skin had stopped shrinking. Because of that result and the back-up experience results Dorene stopped doing the chemo treatment she'd been taking for quite a few months.

What did receive the highest results were three hormone reduction treatments. Dorene has an estrogen fed cancer so this made perfect sense. The treatment entailed either the removal or for better words "deactivation" of her ovaries. Since surgery would have meant many days away from work and a long recovery Dorene chose the "deactivation" injection which shut down her ovaries production of hormones. This was to be a two part treatment which included a pill that also reduced her body's production of hormones, but again, to be careful because Dorene is sensitive, she had the injection and waited a couple weeks before starting the medication. The change in hormones and how it made Dorene feel with the injection alone was pretty challenging. Dorene felt like she was going to burst into tears at every moment and for no particularly present reason. But she forged forward and began taking the pills and that is when everything fell apart emotionally. This treatment took a huge and serious toll on Dorene. She was angry at everything, wanted to stop and quit everything, wanted to hide beneath the covers and disappear, and though she "understood" why she was feeling all of this... she was heading toward wanting to throw in the life towel. In short, Dorene was in HELL!

Matt and Dorene had a very long discussion about this treatment and together they decided to stop it. It was not worth the toll it was taking on her. And any treatment that makes you not want to live is not a treatment worth pursuing. This left Dorene with what seems to be limited options...

See, the 4th item on the sensitivity list with the best results is an extremely intensive Chemo Cocktail that Dorene's Oncologist said she'd never put Dorene on it is so bad. Does this mean that Dorene will not do this chemo? We can't really say... we don't think so but Dorene keeps exploring her options and reevaluating what it is she is willing to try.

Right now the focus is on the skin tumors which are about to ulcerate. I didn't know that tumors ulcerated, sort of bursting open causing an open and painful wound, neither did Dorene and Matt. But they do and the only treatment offered for that since the chemo stopped working on reducing the tumors is radiation. :-(

For those of you who know the story of Dorene's first serious battle with Breast Cancer at 31 the Doctors radiated her so intensely that they burned her and created issues and problems that she still struggles with to this day. Needless to say, Dorene does not want to do more radiation... but, she sees no other choice as none has been given to her.

Dorene has consulted with the radiologist and gone through the set-up procedures and has another final pre-appointment on Tuesday, Feb. 16th and I believe she will begin radiation therapy on the 17th. She has to go every week day for something like 4 or 5 weeks??? I may have that wrong and will ask but it is for a long time. This means she has to take off of work to go and also that she has to use her usual rest days to go into town also. Can you tell how much I hate that she has to do this? I'm afraid that on this account I have a hard time putting on the happy face for Dorene because I know how much this treatment scares her. She is already always exhausted and this is going to make that worse. Where I am hopeful is that we can find treatments to boost her immune system during this time to help get her through that. She is, in fact, going to meet with a Reiki therapist and I've read good things about Reiki.

Another thing Dorene is now doing is meeting with an Oncology Therapist. Dorene has met with her once and likes her. I believe she will have a standing every other week appointment. This is another way for Dorene to express her true feelings and fears and yes hopes about this fight with cancer. I think it will be really good for her to have a completely neutral person to speak with who also has a great deal of experience with people fighting cancer.

I believe that's the current synopsis... I will add as I have more to share and you can subscribe to this post to receive notices when a new post has been added. Check back as I may add another subscription service I use on my other studio blogs.

Love,
Deborah
Dorene's Sister :-)

Hello to all those who love Dorene...

This is Deborah...

I should have set up this blog awhile ago but I kept feeling that it would seem impersonal.  But I've come to realize that I've been bad at keeping everyone up to date by doing it individually, or even in a group emails, and decided I should start this private blog where I, Dorene or Matt can post updates on what's happening.

This is a private blog and only those invited can view or comment.  I will send out an initial invitation to the people whose email addresses I have but if you know of someone I should add feel free to let me know and I will be happy to do so.  The privacy is only so we can speak freely without the "world" looking in.

My next post will be one about where things stand at this time...

With Love,
Deborah
Dorene's Sister :-)