Wednesday, August 23, 2006
August 23, 2006
Pain Clinic Visit
The week has, once again, been a very tough one. More in bed than up, more asleep than awake. Not much eating, about 1/2 a meal a day in equivalent. Drinking still hurts so that hasn't gotten much better either. I'm working hard to get the fluids down that I need.
Nurse was by on Monday to try to get the BM going. Accomplished that but now have had nothing again since. They will be around again tomorrow.
Had a little better of a sleep this morning after my meds at 8 am. Slept from 8 am to 11 am, then out the door to the Pain Clinic for 12:30.
We feel like the pain meds may be about where they should be. I was beginning to have symptoms of toxicity, jerking of muscles, hearing things, seeing things that weren't there, people touching me but no one around. It became worse when the meds were increased from 22.5 mgs to 40 mgs. (Long story on that one, but suffice to say, my GP jumped the gun and took over before she should of from the Pain Clinic doctor and increased it more that she should of). After those signs became apparent, the pain Clinic doctor dropped me back down to 30mgs every 4 hours, which I started that on Sunday. Monday, after the enemas and the discomfort from all that, a whole day of sleeping, the pain has seemed to have settled to a more tolerable level. Sits between a 2 & 4 for the most part. Depends on how much I might eat or move around, sit up, walk, all those things increase the pain.
This weeks plan is now:
Oxycondone (pain) at 30mgs ever 4 hours
Oxycondone for breakthrough pain at 15 mgs every hour as required
Desamethusonl (steroid) for pain, appetite, well being, 6 mg twice a day (morning only)
Zelnorm (constapation) 6 mg twice a day
Colyte (constapation) 100 ml 3 times a day
Losec (stomach acid) 1 tablet per day
Metoclopramide (nausea) 1 tablet every hour as required.
Phew. For someone who rarely took a tylonal for a headache, this is quite the change.
Lets hope this one does the trick as I've about lost my strength to fight. Thought the other evening how can a person go through living like this for months and month. I can't do it. It's not living, it's existing and I don't want to exist. So this is the go around that is going to do it!
The doctor is setting up an appointment with a radiation oncologist to take a look at what they might be able to do in all of this. Should see him by the end of the week or early next week.
Neressa and Kylie were over last weekend to model their new fall clothes and gave me a fashion show. They were so cute! Showed Neressa her sweater that I've been knitting on and she's liking it so far. She asked Tanya afterwards and I will quote: "What if Grandma doesn't live long enough to finish my sweater?" Tanya said she would find a way to get it finished for her. Neressa is amazing, she knows so much more that her years and cuddles with me as much as she can even though I know she is not a cuddly girl, she does it cause she knows I like it. So unselfish.
Hi Penny - still praying for ya. You will finish the sweather. You are a woman of determination and strength. All the best.
Luv ya.......
Hi Penny, I have been reading your blog for months now, since I quit smoking and found your details on a newsgroup. Even though I have never met you personally I feel like you are my friend. I don't really know what to say but I want you to know that I think about you all the time and have been hoping for a miracle to happen. Please stay strong. Lots of love, Yvette x
Extra prayers going up for you Penny. That you will have the strength to finish that sweater for your little grandbaby. Man.. I wish I could give you a real hug. Hang in there girl.. stay strong.
Rhonda
Thursday, August 24, 2006
August 24, 2006
Anniversary!
Our 4th Anniversary today. A special day that I though I was not going to see agian. Thanks to chemo, the Cross, my family, friends and supporters and especially to my dear Michael, I made it this far.
Because of your thoughts and prayers I have also been able to have a really good day today to be able to celebrate our anniversary, almost pain free.
I am so grateful and blessed.
So glad you had a wonderful day (been following your posts on the newsgroup and this blog). It sounds like the pain management is working but it would be wonderful if the BM management would catch up with it. Wishing that all the days are good days for you, each containing a little bit of magic.
Have yourself an awesome weekend Penny. Still praying for you. Happy belated Anniversary. We just celebrated our 34th last Saturday. ---
Prayers.
RoadRunnersUSA said...
Hey there Penny!
Hope you have a good day today - talk to you soon.
Lots of love
Annie
Xxx
Tuesday, August 29, 2006
August 29, 2006 #2
What can you do?
Now that I'm feeling a little better I was thinking over the last month about what has been happening and how I might of done a better job of getting over the bumps in the road.
One thing that I realized is that it really is hard asking people for help. You want to stay so independant for as long as you can and it's was a real issue for me to let go and let others run the show for a while.
So where do you draw that line? How do you keep that independance and yet get the true help that you need and that people what to give to you? It's easy for people to come and spend time with you but how does that time go by? Do we both, me and the visitor, make the best use of that time in a way that makes both of us feel a sense of accomplishment and worthiness? To often, through pride, I think I found the time spent was just "passing" the time away.
What would be nice in the future, during these times that can be so hard? I think, for me, what I missed over the last month was time that would be given to me as a woman, time for a manicure, a massage, aroma therapy. Heck, even just shaving my legs. All those things would of been so nice and would of made me feel a part of living. Some thoughts for days down the road, for the darker times. Thanks to you who have asked what they could do.
And then there were all the wonderful things people did do!
Stopping in with a muffin was such a nice jesture, even when I couldn't throughly enjoyed it, it was wonderful. I worried about Michael not eating, bringing him a meal or two made my day. Thank you for all of you that did those things for me. It helped so much.
Running out to get me a special tea, buying me that crochet hook I so desperately needed right that minute, or taking the time to find a small treat, like running all over town looking for those fresh peas that I was craving. Friends, what a great thing to have!
Coming to just bring me a smile meant a lot to me. Thank you so much, everyone!
The short phone calls, knowing it was hard for me to talk, you still let me know you were there and understood. I thank you for that.
Thank you for helping us get this place in order, for helping Michael to make this our home and not just a house! The tree looks great Dad! :-) and we will cherise our lylic tree always.
So, remember, next time, I hope that I can accept your help and kindness in a much better spirit. This go around was hard to let go, to let others do. I'll try to be more accepting of it in the future. Just know that it meant the world to me even so!!
Good Morning Penny - hope you had a good nights sleep.
I know what you are saying -- ie: it is hard to accept help. Help you must remember is an act of love. Love comes from God. Accept it graciously. Take a look at it this way. If someone else was in your position and you were there - what would you do. You would help - you would love. By letting them help is showing your love for them.
Take care - God Bless you.
August 29, 2006
A rough Haul
Been a long few days with a lot of pain, a lot of ups and downs, ending up in emergency on Monday Morning at 4 am and getting some morphine.
After the changes in the meds last week and a nice day things went down from there. I'm not even sure how to chroniclize it correctly. Friday was a very bad day. Had some enemas and trying so hard to get that going, the pain probably 5 X the factor because of all the constipation. For the most part it seems like I've been in and out of things over the last 5 days. Saturday evening I spent all night up fighting the pain and taking breakthrough doses of the meds, a little better during the day on Sunday after a BM, then Sunday night it started all over again. That was an awful night. Nothing, nothing would stop the pain. By the time I woke Michael up at 3 am I said, this it, this is as far as I can take this. I don't want anymore. Take me in, be sure they don't do anything over and above, just take the pain away. Michael called home care, who told us to go to emergency to get something for a stronger pain killer. We arrived there around 4 am and by 5 am I was sleeping blissfully under the care of that sweet morphine. I thought I'd never sleep again like that.
After 7 hours in emergency and finding out that I don't fall anywhere, there is nothing in the system that shows me as "belonging" to any care. Palliative Care shows me as being discharged from their system, the Pain Clinic would not accept me as their responsibility, the emergency room had to let me go. Nothing more they could do. Gave me one more shot of morphine and sent us on our way to find out where I belonged. I have to say, the doctor's there were very kind and caring and every there did their upmost to try to find out how this all happened. In the end they had no answers for me except that we had to get to see a doctor that would get me back into palliative care. That usually takes 3 days. From the emergency room, at 11 am Monday morning, we drove to my GP's office (my still in my nightgown). My GP came out to see me in my car, got me going on morphine as it was obvious that the oxycodone was not cutting it. Michael made some calls to home care and to the pain clinic while the doctor spent time with me in the car. Makes me laugh now, thinking about it. I must of been a sight, sitting in the parking lot of the shopping centre being examined by my doctor! hehehehe
It now looks like I'm am done at the Pain Clinic, for whatever reason, we aren't sure why, they have given up on me and turned me over to my GP and Palliative Home Care. Home Care, btw, doesn't know why I wasn't showing up in the system from the emergency room and that is still a mystery. They do have me registered as being under their care.
After seeing the GP, we finally arrived at home again around 2 pm and I slept where, every hour, Michael would wake me to take another dose of morphine. Then at 10 pm last night I started on 25 mg every 4 hours until my 6 pm dose this evening at which time the GP knocked it down to 20 mg every 4 hours. We'll see how I do on that as I've not required any breakthrough at all and I can say the pain has often been at a 0 - 1. Been a long time coming.
Spent a quiet day with my parents here (just in case) and Neressa too. Just wasn't comfortable to be on my own today. After Dinner Michael took me for a walk in the wheel chair around our new neighbor hood. My first walk around the neighborhood since we've moved here! Almost been here a month.
What an amazing night it is! The fresh air was so nice. There was a nice cool breeze blowing on my face as Shadow dragged me down the road with Michael steering. Thank you for the wonderful evening Lord! :-)
Hope to sleep smiling tonight........
Thursday, August 31, 2006
August 31, 2006
Radiation
My visit at the Cross today. Met with the Rad Onc at 10:30 and was told that he would go ahead with one more batch of radiation to stop the bleeding from the original tumor site once more. Said it's better to fix it while it's a small leak rather than try to fix it when the tap has broken right off. Due to the radiation having to come really close to the spine, he will not be able to do any more in that area after this. Does not want to damage the spinal cord. He did give me a high dose and said the side effects will be worse than the last batch I had done. Fatigue, skin burns, pain, coughing, but it should all subside in 5 days or so.
The other concern I had was the two lumps of cancer that have been growing on my left rib in two places. Very sore to the touch and makes it hard to even have clothes on by the one lump. He will be able to zap those away which will happen on Tuesday. The machine he needed to use wasn't available today otherwise it would of been done at the same time. Good news there. I'll be so glad to have those gone as they have been a major part of the pain for sure.
Had a terrible night last night. Was up all night again, taking breakthrough meds almost every hour until 4 am. By then I was finally able to get to sleep and slept until 6, then until 9 when my sister came to take me for my appointment.
The day went pretty well however. I even made a trip shopping with my sister after the Cross visit. Been a month since I've been in a store! Aaaaa the simple things we take for granted. :-)
I bought new dishes! hehehehehe
Let's pray tonight is a better night. Still feeling like the morphine is better than the oxycodone was doing.
Will pray tonight you will get some much needed rest. Hope the radiation you got today helps. Shopping does wonders doesn't it? New dishes? Sounds like all in all your had an okay day. Praying for you.
Rhonda
RoadRunnersUSA said...
I can picture it - buying new dishes! That smile on your face.....sounds like a good day :-)
May the best med keep on working and allow many days with smiles and laughs.
I miss you, Penny!
Lots of love
Annie
X
Hi Penny:
Been thinking of you even though I had a computer crash. Thank you for sharing your inner most thought, feelings and coping skills. You are truly remarkable to share that with us when you are in so much pain. I just ask that your pain be managed and managed well.Thinking of you often...
Fondly,
Helen
Worried about you Penny.Just thinking about you.
Fondly,
Helen
Hi Penny, Dave here, been thinging about you lots, but never knowing quite what to say or do, but talked to your little sister (on-line) and am so sorry I haven't made a better effort. I know this is old, but it's from the heart, anything you, Mike, or anyone needs, I'll do my best to help where I can. I told Trish, I'd even bring my guitar to your room and we'd tear the place up, LOL
My thoughts and prayers are with you and yours Penny, we will try and be strong for you :)
Thinking of you Penny.
Anne
sending prayers your way for a relief from your pain.. god bless you.
Rhonda
Hoping you are finding comfort and happiness with your family.
Peace be with you
You are one heck of a lady who has touched hearts around the world.
Roz said...
I'm thinking of you, Penny.
Take care
September 10-So worried about you, Penny.I hope your pain is controlled. Praying for you.
Fondly,
Helen
Monday, September 11, 2006
September 11, 2006
From Trish
My first morning with Penny, she mostly slept until about noon when she was more lucid and able to sit up for a while. She had a little fruit to eat in the morning and a tiny bit of peanut butter on a bun and some more fruit at lunch. That's probably the one thing that stood out right away is how little she is eating but thought she did pretty good at lunch time in that she ate both.
Shaving her legs, arm pits and then rubbing her feet and legs down with lotion seemed like a small thing to do and yet to her it meant the world. I'm sure also that part of the emotions involved stemmed from feeling like she's losing her independence. I hope she's realizes that it meant the world to me that I was able to do that for her. And that being able to touch her and rub her legs and feet gave me a sense of connection to her and a moment that I will cherish.
September 11, 2006
No Sense of Time
Trish is typing this for me because I wanted to be sure people knew where things were at but it's just too hard to type and takes too much energy.
The radiation put a damper on the pain control again. We've had to up the meds for about a week and just now have dropped them a little bit. The radiation stopped the bleeding. The lumps are still there but I can tell they're starting to go away and aren't hurting quite so bad. I have the pain I think under control where it doesn't get much over 5 out of 10. I just have no strength and spend most of the day laying in bed. To get up to go to the washroom is my major undertaking in the day. So Micheal had to give me my first shower which was really hard. It's hard not having that independence. But now it's been a week and have gotten used to it. It felt so good today when Trish came and did the other important things like getting my legs shaved. Made me feel fresh and clean.
So now what? I don't know where this goes next. It seems like each week something new comes up that tells us time is getting shorter. So I guess this week the new thing is the jaundice that looks like it's here. So the nurse is going to come by tomorrow and do blood test. So we'll find out about that. My understanding is that it's probably the cancer moving into the liver. I have someone coming every day now which takes some pressure off Michael. It's hard to realize that this is probably the rest of my life. That there's not going to be alot of outings. Just visitors. People coming to see me. I'm very tired all the time and that can be from the radiation too. So hopefully that will get better by the end of this week. I'm still going to try to make a trip to Cranbrook to see my Grandmother one more time and hope to go by the end of the week, if all goes well.
I asked Trish to post on here anything that she might see while she is here visiting or that people might be interested in.
Hi Penny!
I am glad you have someone coming every day now. Glad for you and Michael as well as everyone that will have the chance to spend time with you. The short time that I managed to spend with you was tremendously special - I can only imagine what it will mean to those that are close to you.
I am also glad that your pain is more under control.
You really are one heck of an amazing lady!
Lots of love
Annie
XXXXXXXXXxxxxxxxx
Penny I'm so glad you had someone write for you. I just had to know how you were doing.Losing your independance must be difficult, but take advantage of help so you can save your energy for important things like eating or visiting if you feel like it.You are one remarkable lady to share your story with us.We all need to know because cancer is everywhere and we need people like you to tell us how to cope.My ALS friend left us on Friday. The disease took everything away from her.I hope you can go to see your grandmother.It is wonderful to think you will make such an enduring trip to see someone you love.I wish you that.
Fondly,
Helen
Ah, Penny, you continue to be and always will be an inspiration to us. What a wonderful sense of humor. I am so glad tht Trish took care of those small things that are so important to women. Of course you wanted your legs etc., shaved. (I always dye my hair the day before I fly overseas. I say, "no fish are going to see grey roots should anything happen!")
You know you are in our hearts and prayers.
"Turtletrot1"
Penny
Gentle hugs, prayers and lots of love are being sent your way. I hope these days are everything you want them to be. They are what will sustain those that love you so much. God bless you.
Rhonda
Penny - I have just come across your blog, from a posting in the newsgroup. I'm down here in Texas, watching one of my best friends cope with melanoma. Your writings have given me a valuable insight in to how my friend is feeling. You and she even used the same "rollercoaster" analogy. Thank you so much for sharing your story.
Malcolm
Wednesday, September 13, 2006
September 13, 2006
From Trish
Penny said I could post before heading home. So I'm sitting here not wanting to go at all and have been putting it off. How I wish I could stay.
It seems Monday was a little too much for her. She had gotten up for a while and Michael wheeled her out on the deck where we had supper. She even had a few bites of corn on the cob, potatoes and roast. Unfortunately that night was a very difficult one. Michael was up all night giving her break through meds every hour starting at 10:00pm taking her last med for breakthrough pain early the next morning. She was in a lot of pain.
In the morning things calmed down somewhat. She slept all morning and most of the afternoon. The nurse came late in the afternoon and I was impressed by how long she stayed with Penny. It was at least two hours if not longer. During this time, Penny asked the nurse about going into a hospice. She also talked to Michael last night about it and it appears that's what will happen over the next while. She will need to have an assessment done which determines whether she is at a point to be in a hospice but from the impression I got from the nurse, it doesn't look like there will be a problem with that. I asked what the criteria was and although she didn't go into to too much detail, she did say that they will accept anyone who they feel doesn't have more then 2 - 3 months. Also, since Penny is quite jaundice this week and she is pretty much bedridden these factors will be taken into account as well. The nurse will be stopping by today to take blood to get a better assessment of the liver.
I asked her how she felt about going into the hospice. She said to me that everything has been in stages and that this was the next one and that she's ready for it. She also mentioned how it's funny she can have little hopes of things like trips to BC or even going on a cruise but realistically she knows that's not going to happen. But I can see that the little fighter in her sure would like to try her darndest to make it happen. :) The positive thing about the hospice is that it'll give her a sense of relief knowing there are health care professionals around, hopefully getting her pain under control and that she can come home on the weekends as well. I think all round it's the right and best thing to do at this point.
Yesterday evening we had a nice time. A friend stopped by and we gathered in her bedroom and listened while he played a few tunes on his guitar. I think she really enjoyed it. Little things like that take her mind off the pain for a time.
During the night, it was better in that she wasn't up all night but this morning she's been in more pain again taking the meds for the breakthrough pain twice this morning. Night time and mornings are the worst for her so hopefully this afternoon is better and she can enjoy the pedicure that our younger sister, Paula, is planning on giving her. :) The difference between how she is between morning and late afternoon can be quite the change.
I'm not sure when she'll be able to post next. I'll mention to the family to ask her from time to time if they could type something for her so as all those that have expressed so much care and concern will continue to be updated from time to time.
On a personal note, I want to thank all those that continue to have her in their thoughts and prayers and have supported her and the entire family through all of this. It's meant so very much.
I hope I did ok sis!! :)
Trish;
Please keep posting and let us know how Penny is doing. And thank you for being there. You are exceptional.
Mary
Trish thank you so much for keeping us informed. I know Penny and you too have better things to do.. but it means so much to those of us who have grown to love and care for Penny just through reading this blog. I think because of her bravery I have learned that I can face whatever I have to. Thanks again and I surely hope whoever is there with her can keep us up to date when things happen. It's awful not knowing.
All my love and prayers
Rhonda
Thank you for the update Trish. Like many others I am sure, Penny is on my mind and in my prayers every day since I first met her on her blog. She has become a dear friend and I truely will miss her. I have a friend in hospice for the past two months with pancrese cancer and also had an uncle who passed two years ago with small cell lung cancer. We cannot say enough about the wonderful help the hospice is. Please keep us updated. God Bless you all and especially Penny as she continues her journey.
If someone can find the time and the heart to post, please do.
But even if not, know that Penny, and all the family, are in many minds and many hearts around the world, and will continue to be so.
I will keep reminding the family to ask her if she wants to post something and will do the same when I talk to her on the phone. I would like to see this blog remain her thoughts, feelings and from her perspective as it was originally intended, for as long as possible. I do however understand people's need and desire to know what is happening and will discuss this with her.
Lots of love to you Penny! This weekend you are in Zion Nat. Park and going for a long hike right to the bottom! Hope you enjoy - we will do the work - just enjoy the views! :-)
And Trish - many thanks to you too for keeping us all updated. Love and strength to you too.
Big and gentle hugs
Annie
X
dean said...
Hi Patti...
I've been watching and reading the blog since I first touched base with you all. Since Penny hadn't posted since the end of August I thought things might have gotten rougher. So sorry to see they have. I feel so privileged to have received an e-mail from her prior to her now feeling worse. Your care for her is a wonderful thing. We got news just today that Dianes Mom's SC lung cancer has returned after 5 years. She beat it then and we're confident she will again. Penny's Blog has been a real source of inspiration and now education in what we will probably be dealing with shortly.
Take care and God Bless...
dean
Dearest Penny..
I spent today with my best friend. She is 39 years old, has 5 kids and was just diagnosed at the beginning of the summer with stage 3B breast Cancer. We sipped maragaritas at lunch and laughed like we had never laughed before. We giggled, told secrets and I thought of you every moment we were there hoping and praying that you were having a good day. That is till my prayer as I am writing this. I hope someone is reading your messages to you if you feel like hearing them. If not.. I just hope somehow you feel them.
Prayers and blessings,
Rhonda
She reads the posts. :) And I know she appreciates everyone's thoughts and prayers. She'll love the note Rhonda. :)
Unfortunately, things aren't any better since the last post and she may be going either into palliatative care at the hospital or into a hospice soon.
Thank you Trish for keeping us updated.. I am sending you big big hugs.. wish I could give you a real one. Penny..all my love to you dear dear heart.
Rhonda
Thank you Trish for keeping us updated.. I am sending you big big hugs.. wish I could give you a real one. Penny..all my love to you dear dear heart.
Rhonda
Monday, September 18, 2006
Monday, September 18, 2006
Had a nice visit today with Mom and Dad, Tanya and the girls. Jesse came with them today too.
The home care nurse was also here and gave us the results of the blood tests. It confirmed what we already knew about the liver involvement. It was not a surprise. My jaundice has gotten noticeably worse in the past week, with my eyes and skin turning yellow. The nurse also confirmed that my family physician has registered me with regional palliative care, so I should be hearing from them tomorrow about hospice.
So glad you had a good visit with your family today. Have been thinking about you all day, hoping you're getting that pain controled better.
Prayers and blessings
Rhonda
Dear Penny:
It is so good of you to think of us and keeping us posted. It would be so great for you to remain at home, but I would want you to have the best pain control medicine there is. You deserve to be as pain free as possible and the hospice can offer you that. It is still difficult to leave your home but the pain is so unfair to you and to Michael, because there isn't much he can do either.Don't feel badly if you're not up to company or talking.Pain and being tired is taking all your energy and thats all you can focus on, and thats OK.I wish you relief from pain and many thanks for allowing us to be part of your journey, even though we have never met.I admire you for your courage to give so generously of your time and talent so we can all learn what this horrible disease does to people. May we all become more compassionate and understanding.
Try to get some peaceful sleep.
Fondly,
Helen
Dear Penny,
Hey there stranger...long time no see...just wanted to say thank you....I sit down here on the computer every now and then and read your blog to see how you are doing....as usual it brings me to tears just like it is now....but your words also help to bring lifes important things into perspective again for me too..instead of being upset with lifes problems and frustrations I should be thankful for what I have and get past all the petty sh-t. I am so sorry we have not been down to see you in the past while....it seems like the older we get the faster time goes by, although.... getting older is no excuse for anything except letting an occasional fart go in public....I miss seeing the both of you and promise to try to get our asses over there to see you soon....once again thanks for reminding me of what is important in life...and thanks for bringing the tears to my eyes....I was about due....just don't tell Mike...I don't want him to think any less of me...oh who am I kidding!!!
Take care,
Mike Ewanciw
Donnas "better" half
Sunday September 17, 2006
Michael is staying home with me this week, and is going to type for me so I can catch up a little. I am very happy he is home because I have missed him so much when he has been gone to work.
I have lost more time in the past few days. It was a bit of a shock to realize this was Sunday already. Understandable though too because it has been a difficult weekend. I had my first ambulance ride just after midnight on Friday. Spent the wee hours in the hospital again for pain control and Michael got me home at about 5:30 Saturday morning.
It has become a daily struggle from hour to hour to get through the pain. Never thought I would say that I would be looking forward to going into hospice. I keep thinking that I will be better there because the pain will be more manageable, that I will be better able to enjoy the time I spend with people visiting. All I can focus on right now is the pain. Michael does not want me to go to hospice and would prefer I stay home with him but feels helpless when the pain gets out of control. His only option when it get bad is to call the 911 operator to have EMT’s come give me a shot of morphine. Then they are required by law to transport me to hospital, and as soon as the hospital has my pain under control they discharge me and Michael has to get me home again in the car, which is very uncomfortable now. At least in hospice, pain relief is just a push of the button away and I don’t have to go on any excursions. Home is better, but hospice has better drugs. We don’t really have a choice.
Tanya brought me a gift today. It was a book of pictures of her at different times in her life that meant a great deal to her. She wanted me to know how much of an inspiration I have been for her. I am glad we had the time together to snuggle in bed today.
Peter and Julie stopped by too, but by the time they arrived the pain had taken over again and it was too difficult to talk. Hope we have a better visit next time they come.
Tomorrow, Mom and Dad are coming for a few hours for a visit.
Michael is reading all my emails to me and I enjoy hearing about what everyone is up to.
Thank you all for your kind thoughts and messages.
Penny
Hugs to you and your family.
Hope you find relief from your pain,
Alex
Tuesday, September 19, 2006
Tuesday, September 19, 2006
Last night was very difficult. Again. Getting to be a bad habit.
Sleep or doze or lie quietly all day, little bit of energy to visit in the afternoons, and then later in the evenings it becomes more difficult to control the pain. The nausea, vomiting, and diarrhea didn’t help much either. It has been almost a week since I have had a bite of anything that resembles solid food. It takes me all day to eat a Popsicle, one bite at a time.
The Doctor came to do the assessment today and said that I can’t go to hospice at the moment because they consider my condition unstable because of the liver. So. I am being admitted this evening at hospital to intensive care until they can run a ct scan and do some more blood work to find out what the problem is.
Treatment options vary depending on what they find out, and then we will know where we are going from there.
So glad you situation is being evaluate, Hugs, Alex
Wednesday, September 20, 2006
Almost…..Wednesday September 19, 2006
Penny got settled in at the hospital tonight.
Another little communications problem with our health care providers but the people at the hospital have been very good about it and I am sure she will be as comfortable as can be for the rest of the night.
The paperwork will catch up, and it sounds like they know what’s going on.
Pen’s sister Paula came over to keep her company and let me get home for a few winks before I come back in the morning. And Mom and Dad came to check up on them both.
Feels like a lot of things being home alone though. Kinda hard to sleep. The last time we spent a night apart was last year when she picked up an infection during her down days on chemotherapy and got stuck in isolation at the same hospital she is at now. Had to cancel our vacation south. Got to go later though and the upside is the hospital had her on file. Made things easier tonight.
I have typed the last few posts for Pen. Since Trish last did. I read them to her before I posted them to be sure they were ok. I felt a little odd doing it at first for a number of reasons. Firstly, because Pen didn’t have the strength to do it anymore. That hurt. A lot.
The second reason is that I have never read her blog. I will, but I haven’t yet.
This one is just from me.
I read the first few, and stopped for a number of reasons. Some are personal, some were obvious, or so I thought. I live here, I don’t need to read the blog to know what is going on. People I work with, or friends who have told me where and when I am going before I knew frequently confronted me. It was in the blog.
They knew things about me I didn’t know.
I guess the moral of that story is that living here doesn’t necessarily mean you know what’s going on around here.
I do know for sure though that Penny is in good hands tonight. I hope she gets some rest.
Michael
God Bless you Michael.. gentle hugs to you and Penny. I am sure there are so many emotions running through you at this time. As I've told Penny many times through this blog.. my prayers are with you daily. She has touched and influenced so many lives and brought many smiles and tears to many she will never know. As you read this to her, please give her a gentle squeeze from someone in Texas who thinks highly of her. God bless you both.
Rhonda
God Bless you Michael.. gentle hugs to you and Penny. I am sure there are so many emotions running through you at this time. As I've told Penny many times through this blog.. my prayers are with you daily. She has touched and influenced so many lives and brought many smiles and tears to many she will never know. As you read this to her, please give her a gentle squeeze from someone in Texas who thinks highly of her. God bless you both.
Rhonda
Michael - take strength from the many people who are sending you so many good wishes from around the world. Pen is an amazing lady who has touched so many hearts. I hope this gives you some comfort and please let her know that we are all with you in spirit.
Hi Penny and Michael: Well I read exactly what I had suspected and certainly have been avoiding. It breaks my heart that you both are going through all this. Penny, you are such a selfless creature and you're always concerned about everyone around you. Just know that you are loved so much and you've touched so many people's lives especially through this vehicle, your blog. Rest easy, sweetheart, and I hope you can get your pain so it's manageable for you.
Pam
Penny,
You are constantly in my thoughts & prayers. Sending heaps of love your way.
Love,
Gloria
Thursday, September 21, 2006
Almost the weekend
Thursday, September 21, 2006
Almost the weekend.
Our plans to spend a quiet week at home before Penny went to hospice have gone awry.
She is however, much more comfortable in hospital. They give a lot of her medications through the IV now instead of orally, which was getting difficult. Quite often at home she would throw up soon after taking the meds, and it was tough deciding whether to give her more or not. Getting her fluids hooked up through IV has also helped a lot. It works much faster than the setup we had at home. Even the pharmacist there comes to see her personally and checks to make sure all her medications are working well for her. She is as comfortable as can be and is surrounded by caring people. The hospital staff couldn’t be any nicer and Penny has a family member or two or three with her around the clock.
Penny received the results of yesterday’s tests this morning. There are tumors on the liver and pancreas. A specialist is going to review the tests and decide whether or not to attempt an ERCP and insert a stent.
It may make things more comfortable for her.
Thank you for all the kind messages.
I am sorry I can’t read them all to Penny anymore because she doesn’t have the energy to listen for very long. We only chat for a few minutes during a day. I do try to tell her who wrote, but I keep it short and simple and tell her they all say the same thing.
We love you Penny.
Michael
Thanks so much for the update, Michael. I hope you get some rest. I am glad Penny's pain is under control. Sounds like she's in good hands. Sending another helping of love to both of you!
Gloria
It's comforting to know that Penny is not in pain. I can only imagine how difficult it must be for all of you to have to go through all this.
I hope Penny is comfortable now. I think of her every day.
Anne
Penny, Michael and family - Peace be with you all. I'm praying that it won't be long now. You've all been through enough.
Lots of love from Wales, UK
Emily
All my prayers to you, Penny and your entire family. I know she is wrapped up in big old warm arms of love right now and nothing could be better than that. Take care of yourself through these next days. There are lots of people praying for you both right now. I know Penny feels our thoughts, love and prayers even now.
Blessings to you today,
Rhonda
Michael, I am so proud of you and how you are handling all of this and being there thru every step of the way with Penny. It is what love is all about and she knows, loves and appreciates you and that is something you will always have as a gift to treasure. I went thru the same with Mom. I do hope that you have a support system for yourself too as you also need to be carried along and taken care of.Caregivers tend to put themselves last and need to take care as well. Bless you for being so good and caring and Bless Penny and all of your families thru this journey. Lots of prayers are being sent your way.
A new batch of warm fuzzies are coming your way.
Always;
Tom, Miran, Presley & Dawson
Hey, Micheal, I am so glad I stopped in when I did. You might ask Trish about the song I wrote, I don't have it anymore, but she might enjoy hearing it, if Thrish hasn't already read it. Thinking of you guys lots, take care. Dave
Michael:
I pray for both of you to be strong through these tough times. Thank you for being there for Penny. I admire you both.
I'm glad Penny is in less pain. Give her a gentle hug.
I'm so glad Penny is more comfortable now. She is in my thoughts every waking moment. Penny is the most warm hearted person I have ever met, I consider myself very lucky to have been a small part of her life some time sgo. I love her dearly and wish her the best
Sunday, September 24, 2006
Almost a year older.
Penny has a birthday coming up next week.
She had a great visit with her sisters and Tanya last night, up and chatting for an hour.
When I arrived at the hospital this morning she smiled and said she had a good night. Slept well.
Must have, because she threw her glasses on and grabbed the laptop and did a little reading for about ten minutes. Had a bit to eat for lunch today too. The most I have seen her eat in two weeks.
Her jaundiced pallor has improved, and we had a pretty good visit this morning.
She looked better than she has for several days. She was up and happy to see Mom and Dad and Trish arrive for the afternoon. She had half a dozen more visitors this evening.
I don’t mind writing this so much today. This is all good stuff.
The nausea and pain control are still a work in progress, and cause her some distress, but it is much better. The frequency of the attacks has diminished and she doesn’t have to wait long for relief. They increased the pain meds a little last night, and seem to be doing a really good job keeping the pain under control.
The muscle spasms she had been having a thousand times a night have also almost stopped. Some of them were quite severe and it is a big relief to see them evolve into just a little twitch now and then. The spasms were a result of becoming a little toxic from all the drugs, and not getting enough fluids.
It is eight in the morning now, Saturday, and she has been sleeping peacefully since eleven last night. Very nice to see after all the tough nights that she has been having lately. The day shift nurse just came in to check BP and give meds and Penny said her pain was zero. That was so good to hear. I have not heard a zero for months. The staff here is doing an awesome job of keeping her comfortable.
The doctor was just in and confirmed the ERCP will be done on Monday. Even shifted the schedule a little bit so Penny can get this done ASAP.
At this rate, Penny might soon be typing her own blog again. I’m hoping.
11:30 AM Saturday, September 23, 2006
Tanya, Kylie and Neressa were just here for a visit. Penny had a good morning and is just settling in for her noonish siesta. She read this before I posted it and drifted off to sleep.
Michael
Penny, I knew you had a September birthday but didn't know when. The 0 pain is a wonderful gift. Will be sending good vibes your way for Monday's procedure. Hope today is as good as yesterday - even better!
Buckets of love topped by birthday candles,
Gloria
Whoooo hooooo, Penny! I can just see that little twinkle in your eyes again........ lovely. Thanks so much, Michael for sharing this wonderful news.
Penny - here is a *hug* and a smile for you.
Bunches of love - I will build a sandcastle for you :-)
Lots and lots of love
Annie
xx
Wooohooo... glad to hear all of your news Michael and Penny.. glad that pain is being managed some now. that just makes everything better. Glad you've had some good visits and that you've been able to smile alittle. Thinking of you and still praying for you.
Rhonda
Thank you so much for keeping us updated, Michael. It is wonderful to hear that Penny is able to rest without pain. you are both very courageous. I, too can see the twinkle in your eyes, Penny. I know it quite well.
Lots of love, thinking and praying for you always.
Wonderful news about pain control.....good luck with the ERCP. Happy Birthday
Alex
This letter is for Penny’s sisters. My heart goes out to you and I know what you are going through. My sister is also dying from Lung Cancer and I know the Cross and Grey Nuns well.
When I am driving down the road and pass a “memory” and my eyes start to tear up I think of you guys. When I talk to my other sisters and try to give them moral support I think of you guys.
I try to think positive and be so thankful that my sister is still in my life but can’t stand the thought of living without her. When I watch her deteriorate to the point of not being able to walk much or stay awake, I know you are going through the same things. When she is in the hospital and seeming to do so well, I can almost believe that all is right with our world.
There are many times that I think it would be easier to die than to loose her. A very selfish thought, I know, but I can’t seem to stop the thoughts sometimes. I try to do what I can to make her comfortable but am frustrated that I can’t cure her.
Trish, I listen to your song and cry. I have chosen to have this song at her funeral. My siblings can’t bear to listen to the song. My mom cried so much when she listened to it. Thank you for putting into words what my heart weeps about.
God bless you all and I pray God gives you strength for the days ahead. I had a brother die a few years back and you do eventually get through a day and laugh again but the hole is there and the sadness hits you at the most unexpected times. I don’t know if I can go through this again but have to for my kids sake and for her youngest daughters sake.
Good bye and know that there are those of us out there who pray for you all and know what you are going through
Tuesday, September 26, 2006
Almost Wednesday,,,,,,,again.
Sunday, September 24, 2006
It is noon, Sunday, and Penny is sleeping comfortably.
She had a peaceful night again, but is very tired today. I mentioned there were no visitors that I knew of that were coming today except Tanya, and she said ‘that’s good, I just want to sleep.’ She has no energy at all. The doctor mentioned that this morning too. Said they are pretty good at pain management, but there is not much they can do about the energy level. Pam came and spent the afternoon with Pen.
11:00 PM Sunday.
It was not a very good night. When I came back to the hospital a little after 8 to spend the night again I found Penny sitting up in bed, crying and in pain, her IV line was tangled in one side of the bed and she was nauseous and throwing up. They were 3 people short staffed yesterday and got behind on her meds a little bit. Got her untangled and the nurse came in shortly afterward with the extra pain meds. Ten minutes later she was comfy again, hair brushed and all tucked in, drifting off to sleep.
10:00 AM Monday
We didn’t get a lot of sleep last night. At 2 this morning they had to change one of the injection sites. Only took ten minutes but Penny finds it painful. She has been complaining for a long time, months, about how much her skin hurts all over, and when they tear that special tape off that holds the butterfly needle in she struggles with it. Well, they don’t tear it off, but rather peel it back slowly. Takes at least 5 minutes to get it off and she grimaces for every second of it. She has 3 or 4 of those needles in her all the time in different places for the different drugs they inject. Plus the IV in her hand. Poor girl must feel a little like a pincushion. And she was worried about the procedure that is being done today so that didn’t help either.
I read a few emails to Penny. Mom read some letters to her this morning too. Helped take her mind off things a little. She seldom opens her eyes but she does smile often when read to She has been comfortable and resting/sleeping since about 4 AM. I am glad they are running a little late this morning. Give her a chance to rest up a bit for it.
So, almost time to go downstairs for the ERCP.
10:00 PM Monday
They took Penny down for the ERCP about 1 and she was back in her room by 3. It didn’t work out today. Constricted space caused by one or more of the tumors, and partly because Penny has some tremors from the meds meant that they will have to try a different method. They have that booked for Wednesday.
Mom and Dad spent most of the day here, and Tanya was here this evening till I got back. Penny had a sleepy afternoon.
8:00 AM Tuesday
Had a pretty good night. Little confusion over wrong meds at 3 in the morning and they had to change the IV to her right hand but pretty comfortable otherwise. They woke us up at midnight saying our daughter was just on the phone complaining that her mom had a bad rash on her ass and that she wanted it fixed right now. Wrong room, but they almost had us convinced it was Tanya even though Penny has no rash problem anywhere. We did have a chuckle about that one.
Penny’s blood pressure was very low yesterday and her energy levels have dropped to pretty much zero. Her skin hurts and she finds even the loose hospital gowns constraining and irritating, so she drapes it instead of wearing it. Her oral fluid intake consists of a piece of ice no bigger than the size of a pea every few hours or so. They also started her on oxygen yesterday. They have the worst of the pain under control, but with the extra BT meds last night, her spasms have returned. They are almost as bad this morning as I have ever seen them. Her breathing pattern is changing when she is sleeping. And the jaundice is remarkably noticeable.
8:00 PM Tuesday
Almost Wednesday again.
It was a week ago I started doing this for Pen. The night she was admitted to hospital.
Feels like a month, at least. Lots of ups and downs during the day, and night. For everyone.
Mom and Dad spent the afternoon with her. Paula and Dennis popped in for a quick visit this evening.
Hope she has a good night. They are trying again tomorrow to insert the stent, and it is a more invasive procedure than the first one. She gave up wearing the gown altogether this afternoon. Having large fluctuations in her blood pressure, and the tests they do for oxygen are showing a steady decline.
Penny woke up for a moment, so I opened the blinds on the window beside her bed to give her a view of the sunset. Her room is on the 5th floor facing west, and it was especially pretty tonight. I asked her if she would like to have any input into the blog today.
She did. She said “ to say thank you to everyone for keeping in touch and for caring.” And then she went back to sleep.
Michael
We are all giving back what Penny gave us - love and caring! Thanks go right back at her :-)
And that sunset - I watched it here in Florida with her in my heart, and it was beautiful. I am glad she got to see that.
I will hold her, and you all, especially close in my heart tomorrow while they do the stent. May it be easy on her.
Thank you Michael - it means so much to read these updates. Thoughts and prayers flying your way too.
Love to you both
Annie
X
Micheal, please know, and let Penny know as well, if one day I could be a hero, I want to be just like you guys are. Be brave, I know it must seem impossible, but you guys are heroes to so many others, shared sunsets, need no words.
Dave
Thank you so much Michael for your updates. I check daily. You are both remarkable. I do hope things will go well tomorrow. You will both be in my thoughts and prayers.
Let Penny know that she is loved so very much.
Thank you Michael.Try to get some rest as well.I can't imagine what Penny is going through,but she is strong because of you and for you.My heart goes out to both of you.
Fondly,
Helen
A few wishes:-
For Penny - peace with her family and after and the knowledge that her life has brought so much to so many around the world
For Micheal - strength for the present and the future with the deepest realisation that not only do your family and friends care for you but so do so many strangers.
Michael, thank you for updating, though the news is not good.
Penny, I light a candle for you every day and hope you don't have to be in pain anymore.
Anne
Penny & Michael,
Words cannot express. Michael, I appreciate the detail & the effort you go to - keeping us updated. Everything crossed for a successful, comfortable procedure today & more comfort following.
Much love,
Gloria
God Bless you both and especially Penny. Please know you have touched many a heart. Much love.
Much love to you Michael and so much love to Penny. I'm praying for you both and praying that these final hours/days are everything they need to be for you both. I hope you are taking care of yourself too. Rest easy sweet Penny, you are well loved by alot of people.
Rhonda
Thank you. God Bless you truly.
i know that this is a hard road but together you will get through it. your family sound like they are strong and you all stick together that is great. penny you have so much love around you hold strong to that. micheal hold her when it is good times and not so good times. my dad was there from the begining with my mom and right up until she was gone. that man is the greatest.
Thursday, September 28, 2006
Yesterday was a good day.
Thursday, September 28, 2006
Tuesday night was uneventful, and peaceful, and we caught up on some rest. Mom and Dad came again in the morning, Wednesday, and stayed until Penny got back to the room around 5. It took about 4 hours to get it all done
The procedure was a success, but it was a long difficult afternoon for her.
When Pen woke up around 11PM tonight for her four hour med nurses visit, I asked her if she wanted to add anything to the blog today. She said no, just to thank everyone again, and that tomorrow when she felt better she was going to type herself and tell everybody what the experience felt like.
They had to guide a needle through her abdomen, liver, bile ducts and into the intestine, and then wheel her down to another room where they did the ERCP again, found the wire inside and used it to guide the stent into place to open up the bile ducts. They don’t put you out for this thing. You need to be semi conscious. They used a different term like comatose consciousness or something, but the point is you are aware for this little adventure. They don’t want you to hurt too bad, but they need you to be able to move around a little during this to help them guide their instruments around in there. Penny’s head was dripping with sweat when she got out of there. I got in to have a peek at the picture on the monitor with Penny just when they finished up. The image of the stint in place in the duct, along with surrounding organs, bones, etc. was crystal clear. That is amazing stuff they do in there. Penny was awake and talking as soon as it was done, and the first thing she said was, ‘it was awful’.
She seems to have tolerated it all very well though, and recovered nicely so far.
She slept for a bit when she got back to the room. Then she got up and dressed in her own nightie and relaxed in the reclining chair for a visit with Pete and Julie, and enjoyed the sunset view at the same time.
It is almost 2 in the morning now, and Pen has only had 1 BT med all night, and that was hours ago, so it looks like another peaceful night. Huge thank you very much to all the staff here again for your efforts and kindness yesterday. Everyday.
Yesterday was a good day.
Michael
Whew! Glad that's done & that Penny's up & comfortable while minimally drugged. I can sense collective breaths being let out all over the world. Kudos to those inventive docs! So now that's behind you & birthday ahead ... Happy Birthday Eve, Penny!
Hugs,
Gloria
Thank goodness thats all said and done!! We can all breathe a bit easier now that we know Penny is a little easier. Glad she felt like getting up and putting her own nightie on.. nothing like wearing your own pjs is there? Glad you had a good day. We'll take all those we can get eh? Blessings, hugs and sweet sweet prayers for your confort Penny.
Lots of people love you.
Rhonda
I am so glad that this procedure is done. Wow! getting into your own p.j.s, that is great!!! I hope you have many more comfortable days.
Love you so much.
Thanks Michael. I know this must be difficult for you. You are a trooper.
Penny, Happy Birthday on the 29th!!
I think of "U" often. Even though I have only known "U" for a short time,You have taught me many life lessons.You always make everyone feel special. Michael, thank you so much for keeping Penny's blog up to date.
I think you are both Special People!
JoDee
Do we get a birthday pic? (Remembvering how you showed me how to use my camera...)
Gloria
yes! A birthday pic! Have a good and wonderful day filled with smiles and family and friends and knowing that there are SO many out there that love ya!
The picture of you typing again on your "baby" is a wonderful one to end the evening with and brings a smile.
Happy Birthday, Penny. You are truely a treasure...
Lots of love
Annie
X
Happy Birthday Penny!!!!
Rhonda
happy birthday penny hope that your day was good.
Happy Birthday Penny! Love you lots! Hugs and Kisses! I hope you had a wonderful day!
Love Treva
Belated happy Birthday...hoping you days be filled with joy and love.
Alex
Saturday, September 30, 2006
Almost 50
Saturday, September 30, 2006
Yesterday was Penny’s 49th birthday.
Today I can start telling her she is almost 50.
Thanks to everyone for the birthday wishes, and your messages.
I just remembered today that Penny had been using a yahoo account for her email and logged in to peek. There were almost 300 messages in her inbox since she last logged in there. I have only been checking her Telus account for her. And I said I was reading all her mail to her…apparently not.
Penny is looking a little better since Wednesday. Her pallor is noticeably improved. She is still having a lot of trouble with the nausea, and it is worse today because they changed her medication for it but she won’t let them put another needle in just yet. They actually want to put 3 more in, to make a total of 5, plus the IV in her hand for a total of six. One for each medication she is currently taking. Sounds like a bit much, but I suppose it beats getting a needle every time you have to take meds. Had a bad night with the pain again, and is struggling a little today. They switched her back to morphine last night, and every time they switch the meds it takes a while to adjust the dose just right to keep her comfy. She is holding out to see the Doctor before she gets poked again.
Noon
Doctor was just in. Going to try and give more of her meds through IV for now, but will eventually have to put the other needles in. A temporary reprieve.
Took her for a spin around the fifth floor in a wheelchair Thursday night, and got her into the shower for a shampoo as well. And after doing all that nice stuff for her she kicked me out of her room, sent me home for a nap. Friday night she was up for a visit with Peter and Tanya, and Mom and Dad are here for hours every day to visit. There are maybe two hours out of 24 in intervals that Penny is up for anything. She sleeps, or tries to, for the other 22. She mentioned this morning how nice it would be to have just a little bit more energy.
Penny called me at home last night to say the palliative nurse had been for a visit. She said we should know by Monday night or Tuesday about being admitted to hospice. I will try to read her birthday greetings to her when she is up for it.
Michael
Hi Michael
Thanks so much for keeping us up to date with all that is going on. I know it must take that extra bit out of you - and I really appreciate it.
Did you get to take that nap after being kicked out? Hope you did.
Love and hugs to you both.
Annie
X
Happy belated birthday Penny - God Bless.
Happy belated birthday, Penny. My thoughts are definetely with you, along with a lot of others. How wonderful to have such caring people! You deserve it all. I hope they can adjust your meds soon so that you can be comfortable again.
Much love and hugs.
Michael my heart goes out to your and all those close to you and Penny. She is in a calm place now and she will spread the good news about what a great companion you were at a time she needed you most!
God Bless.
Monday, October 02, 2006
Monday, October 02, 2006
Sunday, October 01, 2006
10:AM
Just read Penny’s blog to her. She smiled at almost 50.
The struggle with the nausea that got so much worse yesterday is still a problem. She had a really tough night with it again. They have her on three different medications for nausea, and she is still sick often, as in having the dry heaves. She has not had even a sip of water for the past few days. Tried a teaspoon of apple juice this morning, but that came back up shortly afterwards, painfully. Just a tiny piece of ice every few hours is all she can tolerate. But usually she is sleeping and dreaming. One of the side effects of the drugs is vivid dreams, a lot of them. Pen said she has only had a couple of bad ones, mostly good ones
10:00 PM
I came back after supper to spend the night with Penny. The nights seem to be hardest and she wanted some company. Wish she had a bigger bed so I could jump in and snuggle.
I just asked her if she wanted to put anything in her blog, and she said no, that I could do what I want with it now. So I asked her if I could just leave it alone for a while. She said that was fine. I asked her if I could leave it alone permanently, and let it be done. She said that was okay too.
So, this will be the last update.
Midnight
Penny just got up and chatted for a bit. I told her what I wrote in the blog and she said no way, this is not the last update. She did look and sound a little too comfy last time I was talking to her.
The past week has been especially difficult, and Penny had asked that the only visitors be immediate family. She mentioned today though, that perhaps when she gets moved into hospice it would be okay to have a few other people over who want to come for a short visit.
Monday 9:00 PM
When I arrived at the hospital this evening, Penny was in good spirits. She read her card from Annie, and stayed up to chat. She asked me to mention that she is being moved to an acute palliative care unit here in the same hospital tomorrow. She seemed a little excited about moving there, after talking to the unit doctor. She also said the nausea was not as frequent or bothersome today, and the pain is being managed quite well. Whatever else they have started giving her must be working. When I counted tonight, she had a total of 8 needles, in her abdomen and upper legs and the IV in her hand.
It was a better day, except for all the needles.
Michael
my thought and prayers are with both of you.
It was a really sad moment when I read that there would be no more updates.........and then I laughed out loud at Penny saying "no way!" Oh Michael, what a lady she is! And you - you are great for taking the time to share all this and continuing what Penny feels is important.
I hope the nausea gets even less and the needles, what can one say about those, except - yuck! :-(
Lots of love to Penny and a good dose for you too.
Love - plenty of it
Annie
X
Strength and love to you, Michael
Peace and love to you, Penny
You are an amazing couple -- that will never change - whatever happens
Thank you Michael for continuing what Penny started - we ar enot important but there is so much love out there for you all
Thank-you Micheal for keeping us updated. I'm so glad it's going to continue! love you lots Penny.
love Treva
I swallowed hard when there was to be no more entires in Penny's Blog.I guess I want to be with her till the end, even though her suffering is so great.I hope she's in the hospice soon for such very special, loving care. Thank you for writing, Michael, so we can keep Penny in our thoughts and prayers in this struggle.It is unbelievable how many needles she has in her body, since her skin is so fraile.I wish you could cuddle up to her so she can have your warmth, love and especially the comfort knowing someone is so close to you. Maybe in the hospice.
I hope you continue to write in Penny's Blog so we can be with her in this so difficult journey.
Fondly,
Helen
I pray for strength for you Michael. I know you have much better things to do than this blog.. but just know how much those of us who have cared so much appreciate you keeping it up for us. What a fighter Penny is.
Prayers and blessings.
Rhonda
Michael, I can only echo what others have said. Please know that you and Penny are thought of frequently. Please continue to update the blog so that all the friends you've never met can stay with you for as long as we can.
With love to you both and to your family
Emily
(from alt.support.cancer)
know that we are with you. i know that this is a very hard time for you and the family. try to stay strong. hold penny and keep her close and tell her always how much you love her.
Thinking of you.
Love
Annie
Xxxxxxxxx
Friday, October 06, 2006
October 5
Thursday, October 05, 2006
3:00 AM
Tuesday and Wednesday were very difficult for Penny, and today is not off to a good start.
Changes made to her pain meds did not work out very well for her the past couple of days, but it seems to be getting better since they switched her over again at midnight. The nausea is still a problem, and for the past twelve hours we have been working around almost hourly bouts of diarrhea. That was an especially long night.
Up until now, Penny was very coherent, and could speak clearly during the brief periods when she was awake. For the past 24 hours and more, she looks and sounds like she is very much under the influence of drugs. She is just a little out of touch with reality.
9:00PM
Penny is feeling much better this evening. Busy day for visitors today too. Mom and Dad, Pam, Stan, Dennis, Paula, Peter, Julie, Tanya, Jesse, Trish and me. Paula read some of the comments from her blog to her, and I read some of her email to her. She is up and watching survivor right now. First time I have seen her look at a TV for 3 weeks or so. Tanya and Trish were the last ones here, and had the best visit with Pen because she seemed to improve continuously as the day wore on.
Midnight Thursday
There is no comparison between tonight and last night. Sat up and watched the whole TV program, then sat up with me until 10:30 watching the full moon rise, and having a good chat. She seems to be adjusting to the new medication well, with the pain under control, and very little nausea this evening and no diarrhea. She got upset for a while because she misplaced her wedding band. She had tried to give it to me to wear yesterday, and I suggested it still looked better on her. The nurse and I looked everywhere in the room for quite a while and couldn’t find it. We had almost given up and decided that maybe it left the room in the laundry when I had one last look and found it on the floor under the radiator in the corner of the room.
I slipped it back on her finger, but Penny has lost so much weight that it won’t stay on. She was quite relieved to see it and insisted I put it on and went straight to sleep.
This has been a good evening for us, all things considered. It has been a great evening compared to some that we have had recently.
Mom and Dad and I had a talk with the two doctors monitoring Penny this morning. They told us what to expect based on their experience with patients in a similar condition. I could sum the whole conversation up by saying that it is almost time to say goodbye to Penny. The Doctors summed it up by suggesting that if there is anyone Penny would like to visit with, then the next few days would be a good time to do it. I won’t go into the details they provided. It is hard enough typing this as it is.
I didn’t share the details of the conversation with the doctors with Penny today. I don’t know if anybody else did either. I think I will just ask her tomorrow if there is anyone she would like to visit with that she has not seen lately, and leave it at that.
Michael
How appropriate that Penny would watch a program alled "Survivor."
She is that & so much more. Know that you are surrounded by love from those of us you've never met who will love you both always.
Gloria
Mega hugggss to you all. Praying that the next few days are all you want them and need them to be. Lots of people love you and are thinking about you both.
Rhonda
I can't tell you how much you both mean to so many of us out here who have been following this journey with Penny. God Bless you Penny, and all those wonderful people who you have surrounded yourself with during this time.
thoughts and prays
Penny & Michael,
You are both so very courageous people and both so full of love for each other and compassion for those of us folloiwng your journey. Many of us are strangers but who think of you as family. May God be with you both during these difficult days and may you feel the love and compassion we have for you.
even though we have never met i feel that we are family going through this with you. holding on to you with every thought and prayer.
As I sit here with tears in my eyes I'd just like to thank you Penny and now Micheal for sharing your journey with complete strangers. Even though I don't know you I feel like you are examples of what kind of bravery I would like to have if ever I am dealt with the disease of cancer. I pray that the pain is minimal for everyone, especially Penny. God Bless you all!
May you all find the strength you need in the next few days, weeks, months and years.
You have all given so much
Be at peace with each other - your love is a shining star
God bless.
How wonderful that Penny and you had some special moments together.
So much love and hugs floating your way, Michael and Penny.
Strength to you both and the rest of your family too.
Lots of love
Annie
X
I am so glad I met you guys, and all the family, I am proud to call you my "friends". One day, I hope I can as stong as you are, you are indeed heros' and someone to idolize.
i have only started this journey a short time ago but i feel that i have known you for a life time. thank you for that. you are amazing people. hugs
I am so glad I found your're Journal article Penny several months ago and I have come to know you and your family. You have given us more than any medical journal can tell us about this dreaded disease, but more so you have given us the "living journey" of cancer and we needed that because we don't know what to expect or anticipate.
I'll let you rest, dear Penny, as I say "Goodbye".Your spirit will be with me always.
Fondly,
Helen
Thank you Michael for continuing sharing Penny's legacy.
thank you michael for sharing us the things that penny can not do. know that we are here with you and hugs and prayers.
Sunday, October 08, 2006
Sunday, October 08, 2006
Sunday, October 08, 2006
Had a pretty good day today so far. Mom and Dad came for the morning, and Tanya and Pam came for the afternoon. Pam read both some of the comments in the blog and some of her emails to Penny.
I had a chat with Pen about what the doctors told Mom and Dad and I the other day, and Pam read the last blog to her. That was difficult, but she was pleased to hear it. She said their assessment was pretty close to what she feels like she has left in terms of time.
The pain and nausea have been under control now since Wed. or Thursday. She spends a lot of time sleeping and dreaming and for the most part feels comfortable. Once a day she has a few hours of good time, where she can have a lucid conversation with someone. Usually in the afternoons. She hasn’t lost her since of humor and everyone seems to have a chuckle about something while they are here.
Penny is very much at peace with herself.
Trish came and spent the night with Penny on Friday. She must have done a pretty good job of looking after her. Penny said that if I weren’t around, Trish would be her next choice for a nurse. Saturday, Stanley and I went shopping across the street and bought some stuff for Penny to wear. Some of the items were modified with scissors to accommodate IV lines, so she has a rather unusual looking wardrobe now.
Still better than hospital gowns.
We have a hot date tonight too. We booked the hot tub for 7 PM, and I am taking her for a long relaxing bubble bath and shampoo. So, she is resting up for it while I sit here typing. We have to fill in a little form here everyday that questions Penny about pain, nausea, depression, anxiety, feeling of wellbeing, appetite, and I can’t recall the rest right now. Her biggest complaint is the lack of energy. She just doesn’t have any at all. Hope she has enough left today for the tub. The nurses said that she would probably get a really good night sleep afterwards.
Michael
Penny, Enjoy your tubbing party tonight! And new duds too. And adding your own personal touch with scissors. I hope you come back to bed feeling like a wet noodle & sleep well.
Thinking of you!
Love,
Gloria
Enjoy your bath, it sounds very relaxing. Glad to hear the pain and nausa is under control.
Alex
Hoping you have a restful peaceful night after your hot date with your sweet husband. We may be miles away from you in body but our hearts and spirits are with you just the same. God bless you both as you have blessed others.
Rhonda
Dear Penny
Hope the tub was good :-) and that you slept simply great afterwards.
Lots and lotsa love
Annie
XXXXXXXxxxxx
Sunday, October 08, 2006
Sunday, October 08, 2006
Sunday, October 08, 2006
Had a pretty good day today so far. Mom and Dad came for the morning, and Tanya and Pam came for the afternoon. Pam read both some of the comments in the blog and some of her emails to Penny.
I had a chat with Pen about what the doctors told Mom and Dad and I the other day, and Pam read the last blog to her. That was difficult, but she was pleased to hear it. She said their assessment was pretty close to what she feels like she has left in terms of time.
The pain and nausea have been under control now since Wed. or Thursday. She spends a lot of time sleeping and dreaming and for the most part feels comfortable. Once a day she has a few hours of good time, where she can have a lucid conversation with someone. Usually in the afternoons. She hasn’t lost her since of humor and everyone seems to have a chuckle about something while they are here.
Penny is very much at peace with herself.
Trish came and spent the night with Penny on Friday. She must have done a pretty good job of looking after her. Penny said that if I weren’t around, Trish would be her next choice for a nurse. Saturday, Stanley and I went shopping across the street and bought some stuff for Penny to wear. Some of the items were modified with scissors to accommodate IV lines, so she has a rather unusual looking wardrobe now.
Still better than hospital gowns.
We have a hot date tonight too. We booked the hot tub for 7 PM, and I am taking her for a long relaxing bubble bath and shampoo. So, she is resting up for it while I sit here typing. We have to fill in a little form here everyday that questions Penny about pain, nausea, depression, anxiety, feeling of wellbeing, appetite, and I can’t recall the rest right now. Her biggest complaint is the lack of energy. She just doesn’t have any at all. Hope she has enough left today for the tub. The nurses said that she would probably get a really good night sleep afterwards.
Michael
4 Comments:
Anonymous said...
Penny, Enjoy your tubbing party tonight! And new duds too. And adding your own personal touch with scissors. I hope you come back to bed feeling like a wet noodle & sleep well.
Thinking of you!
Love,
Gloria
Anonymous said...
Enjoy your bath, it sounds very relaxing. Glad to hear the pain and nausa is under control.
Alex
Anonymous said...
Hoping you have a restful peaceful night after your hot date with your sweet husband. We may be miles away from you in body but our hearts and spirits are with you just the same. God bless you both as you have blessed others.
Rhonda
Anonymous said...
Dear Penny
Hope the tub was good :-) and that you slept simply great afterwards.
Lots and lotsa love
Annie
XXXXXXXxxxxx
Monday, October 09, 2006
Monday, October 09, 2006
8PM
I am wishing so much so for the end to be here that I spent all last night praying that I would not wake up this morning. I lay here this evening thinking ‘who am I to make that decision’. That is God’s will. I have the pain well under control, so why the urgency? Perhaps it is because it is a long weekend and I am just anxious to move on to the next step, moving to hospice.
Penny
18 Comments:
Annie said...
Penny! hellooooooooo! How wonderful to see your words here again although they are such deep and sad words to hear.
Gosh, I miss you, my friend. You are in my heart, in my head and in my prayers all day long.
I wish for you peace. You know you have so much love all around you. Peace.
I love you, lady.
Always
Annie
XXXXXxxx
God Bless Penny. I have followed you every day since my mother was diagnosed in May 2005. I lost her to the battle in March 2006. I read you words tonight Penny, and it brought tears to my eyes. You are so strong to share your experience. I want you to know just how much you have helped me as I helped my mother- you gave me an inside look or a behind the scenes view of what she was going through but never said- but things and thoughts that you explained!
You are a wonderfully courageous woman Penny and you have touched my heart- someone that you don't even know! I hope you know just how much you have helped someone like me with your daily updates... My thoughts are with you and your family. Thank you Penny. Graciously, Dana
You have touched, inspired, taught and helped so many; both in person and online, including myself. With this, your journey has left a lasting mark in all those that have followed it and will never be forgotten.
I am so proud and blessed to be able to say that you are my sister.
I love you Penny.
Trish
thank you penny for your words. for your journey. you have helped me. thank you
Penny, you are the greatest woman I have ever known. There is so much that I want to say to you but just know that I love you very much and think about you constantly. You are truly an angel and you're in my heart forever.
Love Treva
Penny,
I'll celebrate your Thanksgiving by giving thanks for this post, sad though it is. I hope it is God's will that you remain pain-free & experience peace each & every day.
Much love,
Gloria
It's wonderful to hear from you again, Penny. It breaks my heart that you are going through this. I have followed you every step of the way.
You are an incredible lady. Thank you so much to you and Michael for sharing this journey with us. You have touched many hearts.
Much love and hugs,
Jeanne
Hi Penny,
I hope and pray the pain stays under controll and you'll have a save journey. Thinking of you,
Anne
Praying for you today. That you find some small joy in every moment you are still alive. My thoughts will be with you as you travel this road. God Bless you dear lady.
Rhonda
Ah, Penny. You continue to be a model for us. Via con Dios. Go with God. You will just move into another level. Your body may quit, but your presence will not. You will always be with your loved ones. Love and blessings to you and your family.
Penny
Hugs and wishing you the best.
Glad to hear you pain in under contol. Alex
my love is with you penny.
May god be with you, and fill your heart with love and family.
You are still thinking of "us". That's the remarkable lady you are!I am glad your pain is under control. You deserve that.How couragous you are in asking God to take you home, but Michael still needs you for a few more days and God is giving you those to share with your beloved.
To an angel already!
Fondly,
Helen
You see Penny - you have inspired so many of us out here whom you have not met inperson however have touched through this blog. You are an incredible amazing person so filled with the spirit. May you go in peace to be with our savior -- knowing you are loved, appreciated and that you have completed your job and journey on this earthly plain. God Bless you, Micheal and the rest of your family to give you strength for the days ahead.
Muchly appreciated and always in our hearts and minds.
May peace be with you and your family Penny - you are all such inspirational souls.
Words are insufficient to describe the effect you have all had on the people around the world throughout your journey.
None of that will be lost in the future. Your strength and love will remain to inspire others to come.
you are an amazing woman. thank you for sharing with us your journey. i know that you have helped people. i am one of them.
Im so sorry that you have cancer, I lost my mum aged 56 on thursday 15th October 2006, it was the hardest thing in my life losing my mum, I miss her so much but I know she is now in a better place and there is more then just life here on earth. Stay strong, take care I will pray for you.
Wednesday, October 11, 2006
Wednesday, October 11, 2006
Wednesday, October 11, 2006
11:45PM
Penny had a real hot tub tonight.
Last time we tried this in the chair lift because the bed lift was out of commission and it was not all that comfy. This time she got horizontal and floated for two hours in a jet tub. Turned the lights out. Didn’t have any candles so we just left the door open a crack and closed the curtains but she enjoyed the evening nonetheless. Every twenty minutes or so I asked her if she had enough and she just smiled and shook her head a little. At nine o’clock we had to pull her out before she turned into a prune. That was without a doubt the most comfortable spot she has been in for quite some time. She has been sleeping soundly since.
The past couple of days and nights have been good. She has been up and talking for most of the time visitors have been here. She is drinking a little again, and is free of pain and nausea. One of the afternoon shift nurses brings fresh bread and other treats she bakes right here in the family room. Last night she brought some raisin bread and Penny had half a slice.
Almost all the needles are gone. There are only one or two on the go now, which makes things more comfy.
She is still really tired all the time, and getting a little shaky again so they are easing up on her meds, but today was a good day.
Michael
16 Comments:
Sounds like it was very relaxing....you and both in my thoughts and prayers
Alex
hot tub wow. sounds like you enjoyed it. that is great. enjoy the rest of your week.
I couldn't be happier to hear she enjoyed your hot tub date together.
It's all the little things that mean the most.
We are with you.
Miranda and family.
Glad you got comfy, Penny, & good sleep. Sounds like pure bliss. Sharing those treats with Michael?
Love,
Gloria
Hi Penny
In my heart, in my head.
Always
Annie
Xx
Hello Penny,
We the staff at Accurate Data Services Inc. would like to wish you a comfortable journey. We wish the very best for you. Also wanted to let you know that you have a wonderful daughter Tanya. We love working with her and she has become part of our family very quickly.
Penny, it's wonderful news that you've been comfortable and relaxed. I hope you've slept really well and are feeling a little better now.
Thinking of you and wishing for the best for you my dear,
Emily, South Wales UK
Big warm hugs and lots of love coming your way. Hope your days stay this way for the rest of your time here.
Rhonda
Penny Lady, I love you. I miss you.
I hope you dance.......
Annie
XXxxxxx
Candi said...
Hi Penny,
Funny how family drifts apart yet we still know what is happening with each other. Gramma Irwin & Auntie Rosalie have been keeping me up to date on your progress. I have been praying for you & your family. This journey is not an easy one, nor do I believe it is meant to be. This is just a stop over until we really go home. God welcomes you with open arms.
Remember at my wedding when you & Rick didn't think you could make it and then at the last minute you showed up? I just wanted you to know how much that meant to Bob & I. I don't think I've told you that before. Maybe I should have.
Please know that you are in my thoughts & prayers and I love you.
p.s. The Hot Tub sounds like it was awesome. I'm very envious!
Candi
Wishing you all peace in the final journey. You are a wonderful lady and your time here will have done so much for so many in the future until a halt can be called to this abhorrent disease.
Rest well sweet Penny.. I will be thinking of you today hoping that peaceful calmness stays with you. My prayer today is that your sweet family will find peace and serenity as well.
Bless you all
Rhonda
Just found this today while researching small cell. My mother found out about 4 weeks ago she has small cell. What a wonder lady to share with us what some whould think should be a personal journey. God speaks to the rest of us through wonderful people like you. Thank you, R
thinking of you. my prayers are with you. big hugs and know that you are an amazing woman. i know sometime you don't think so but you are.
We all think that we are just an ordinary woman, but in truth we are extrodinary women - just as I know that you are too!
C
Michael, thank you so much for taking the time to update Penny's blog. Penny is near and dear to me as she had given me advice about my mother who is in Hospice right now. Her advice and concern touched me deeply...i only hope that she knows how many people she has touched with this blog.
Please take care of you and know that my thoughts and prayers are with both of you. And if you can, hug here from all of us...
isabel johannes
Friday, October 20, 2006
Friday, October 20, 2006
Friday, October 13, 2006
Good day, bad day, good day, worse day.
Penny slept well all night Wednesday after the tub, and when she woke up Thursday morning she smiled at me and said, ‘I have some plans.’
She wanted to get out of here for a couple of days. Go home for a visit, book a luxurious hotel room with a jet tub for two. Mostly just get out of here for a while.
By Thursday afternoon, she was experiencing side effects from the drugs that included shaking all over uncontrollably, unable to speak, feet curled up and unable to straighten them. And that lasted until almost lunchtime Saturday. The last thing she said on Thursday was to the doctor, and that was to refuse any more tests or medications that would prolong this struggle. From Thursday lunchtime until Saturday afternoon she behaved as though she had suffered a stroke, unable to speak.
Sunday, October 15, 2006
Slept all day today. Was up at 5 am for a little while, and then slept the day away.
She is not able to get out of bed anymore because of her feet and lack of strength. Tried last night but couldn’t make it. The shaking has stopped with the change in medication, and when she is awake, she is lucid and can talk a little, but she can’t get out of bed. Becoming bedridden so closely on the heels of her plans to escape this room for a couple of days has been hard on her. I don’t often see her upset, but this one upset her a great deal.
Monday, October 16, 2006
Don’t remember much of the weekend. Penny seems to be up all night, and then sleeps all day. Had another hot tub last night for an hour. She wants another one this morning. Just said she could stay in there all day.
It is getting harder for her to find a comfortable position. I guess that is why she likes the tub so much. She is also congested but does not have the strength or lungpower to cough enough to clear her lungs.
She has mentioned several times in the past few days that she thinks the cancer has also gone to her brain. And she may be right. The drugs have not been changed for several days, and a tumor would produce the stroke like symptoms. She just keeps mentioning that something does not feel right, in reference to her thinking and ability to communicate and move.
There has not been a problem with pain or nausea for quite some time now, but there does not seem to be any shortage of other problems to take their place.
Tuesday, October 17, 2006
Chocolate milk and jello for breakfast today. And then she said she wanted another hot tub this morning.
She is really liking this hot tub thing. She waited patiently until noon when Mom and Dad showed up and gave me a hand with it. She got to float for an hour and a half. The rosy cheeks are quite a contrast to the jaundiced pallor of a week and more ago.
Having a visit with Tanya, and struggling to stay awake at the moment.
Today was a pretty good day.
Friday, October 20, 2006
Friday again. Wednesday we were both sick and slept all day. Then she spent most of the night sitting up in bed leaning against me, just to be in a different position. Thursday was not a good day for Penny. Having a tough time finding a comfortable position and abdominal pain. Not bad enough to get breakthrough meds, just enough to make life miserable. She is finding it difficult to speak, and seldom says more than a couple of words at a time. She has lost a lot of muscle tone and does not even have the strength to even shift her position in bed. Some days are better than others, but she is feeling worse daily.
A few people have written lately and asked if they could come for a visit. Thank you for asking but we have requested that just immediate family be allowed to visit for the past few weeks.
Michael
10 Comments:
Dear Michael
Thanks SO much for this long update. We really appreciate your time and effort in doing this for everyone that cares so much about Penny.
Penny and you are in my heart and mind constantly. All of you are.
love and tears
Annie
XXXXXXXxxx
This has been a hard journey with our precious Penny. We have been with her at the hospital every day since she has been there sometimes at early morning when Micheal has had to go to work. Her sisters have also been with her as much as they can and also her children. We try to give Micheal a break when ever he feels he needs one. We want to thank everyone who has prayed for Penny. Our Lord is keeping us strong throughout this!!
Anonymous said...
Michael, thank you so much for taking the time to update Penny's blog. Penny is near and dear to me as she had given me advice about my mother who is in Hospice right now. Her advice and concern touched me deeply...i only hope that she knows how many people she has touched with this blog.
Please take care of you and know that my thoughts and prayers are with both of you. And if you can, hug here from all of us...
isabel johannes
6:52 AM
Michael and all Penny's family - I have never met any of you and probably never will. I 'know' Penny through the cancer support newsgroup and have come to regard her as a friend even though she and I don't know each other all that well. Please know that the newsgroup 'regulars' all consider themselves in this light - as Penny's friends and therefore your friends as well.
There's nothing I can say to make things any easier for you all so I'm not going to try. Like so many others though I'm thinking of you all the time, and hoping that Penny will soon have peace and freedom from pain and discomfort.
She's a very special lady.
Emily (South Wales, UK)
Dear Peter and Pat
You are in my thoughts so very much. I cannot begin to imagine just how difficult your journey is. I will continue keep you, Penny and all your family in my heart and prayers too.
Love and strength
Annie
X
You continue to be in my prayers daily. Thank you so much for taking the time to keep us strangers updated. I pray you find strength to get through each minute, each day. To Penny's parents.. God bless you. She is lucky to have such a loving family. Bless you all.
Rhonda
Thanks for the update..lots of love and warm thoughts your way, Alex
Candi said...
Thank you Michael for your updates on Penny. Please give her much love & hugs from all of us. Also please hug Auntie Pat & Uncle Peter. We love all of you. Your family continues to be in my prayers every day. Penny my beautiful cousin, be strong & continue to dance.
Candi
thank you michael for the up dates. i know that it must be very hard to keep this up. we all are very thankful to you. penny hugs kisses and know that you have touched everyone who reads your blog.
Thank you for the update Michael. I hope Penny's body soon will find the peace Penny's mind already seems to have.
I wish Penny, you and the family all the strenght you need in these hard times.
Anne
Saturday, October 21, 2006
Saturday, October 21, 2006
1:30 AM
Thursday night was awful, again. Having a real tough time finding a comfortable position. Spent most of the night sitting up, or repositioning. Made it through the day Friday with a breakthrough med because she is having more abdominal pain.
Sleeping comfortably at the moment. Mostly because she just got out of the hot tub again. Another hour long plus floating session.
Paula came up tonight to visit and gave me a hand to get Penny down to the tub, and then back to bed and tucked in.
That may have been Penny’s last hot tub, unfortunately. They are moving the entire palliative care unit downstairs to renovate up here starting Wednesday, and there is no tub on the unit we are moving to. The renovations will take 6 to 8 weeks. She was upset to learn that. The hot tub has been her only reprieve, other than sleep, from the constant discomfort of being stuck in bed.
This afternoon she lost the ability to focus clearly. Having trouble making out faces unless you get quite close to her. That persisted until bedtime.
And if losing the hot tub, and her vision wasn’t enough, she is also having difficulty now drawing fluids through a straw. A very short straw. Just a few sips and she is out of breath.
Penny just woke up and we sat up for a while. Her breathing is so raspy that I can feel it vibrate right through me when she leans on me to sit up in bed. She started taking some meds for that today. Sitting isn’t helping much tonight though, so she is calling for breakthrough meds again right now. That’s twice today.
That is not a good sign.
She was inserting one or two word punch lines into the conversation we had with Paula tonight. There is nothing wrong with her sense of humor. And she still manages a smile for everyone that comes to the room to see her. Doctors, nurses, visitors. It is a little crooked sometimes because she is losing some control of her facial muscles, but she is still smiling. She still says thank you for every little thing you do for her, even though it requires so much effort for her to speak at all.
Michael
9 Comments:
Give her a gentle hug from me please Michael, and let her know her friends are here for her. We're here for you too of course, and for all the family.
Thank you so much for keeping the blog updated when you must have so many other things you'd rather be doing.
With love
Emily
Candi said...
Good afternoon Michael & Penny,
It saddens me to hear you are losing the tub & must deflate your spirits to know your smallest pleasure is gone.
Thank you Michael for updating all of us on your family's news. Good or bad, it's good to know how you all are doing.
My worship teams prays for you often & as always - your family is in my prayers. God has big plans for Penny (this I know), take comfort in knowing that she will be welcomed in the "Big House".
Big (soft) hugs from Penny's cousin,
Candi
So sorry to hear about the hot tub. Could they maybe keep it operational for her & she could come up/down to it? I'm sure she's a big favorite there & maybe just a smile, however lopsided, might do the trick.
Hospice provided a mattress pad for Charlie - it was like a 'sleep number' mattress where you could control/change the firmness of different zones with an electric controller. Maybe see if available there?
Thinking of Penny & wanting the misery to end for her & all of you while missing her at the same time.
Love,
Gloria
thinking of you guys and lots and lots of prayers.
Penny, I'm thinking of you everyday Hugs Crystal
Micheal, My father in law was sleeping on an air bed, to help ease the pain.
My prayer for Penny has to be tonight that our loving God will just allow her to go home. It sounds as though she's ready. It's so hard to understand things.. I have to believe he knows what is best. Prayers to you all.
rhonda
God Bless you Penny and Micheal you both have so much courage and I am sure I speak for many out here that we really appreciate the updates Michael. It is sad about loosing the hot tub but I would ask to see if there is another one that could be used. The doctors should be able to make that arrangements. Blessings and lotsa hugs to you both.
Sleep well, Penny, you have become so dear to so many people you will never meet, and we will never have the honour of meeting you. Travel safe and may the gods you treasure hold you safe in the arms of those who have gone before you.
None who have felt your spirit will ever forget you.
See ya, Penny. I will watch for the singing, dancing, gypsey lady with the incredible smile and sparkle in her eyes.
Always
Xx
Monday, October 23, 2006
Monday, October 23, 2006
6 AM
Sat down to write this morning and I can’t remember much about Saturday other than Tanya spent the afternoon with us. A doctor came in for an hour or so to chat with Penny and Tanya and I, and Penny made some unusual observations about how she perceived things now. Where she is, where she is going.
I doubt that either of us will ever forget it.
Sunday was a very quiet day and the past couple of nights have been easy on Penny.
I read some of the comments and emails this morning, and thought I might respond to a couple of things.
Penny’s bed, for starters, is a computerized air bed that frequently re-adjusts automatically. I don’t think they have anything better than this. We purchased a dense foam topper like the one Penny had at home for the bed, and that seemed to help a lot. There is nothing else we could possibly do to make it more comfortable for her other than to just get her out of the damn thing once in a while. But she can’t.
And yes, typing this blog for her was very difficult at first. I have not been to work for 2 or 3 weeks now though, and have been living in the hospital room with Penny for the past month. So I did have a lot of time on my hands. I have a cot that I push up against her bed and sleep half on cot, half on Penny’s bed most of the time. The laptop has web access on the phone line in her room, so I can sit here beside her while I am typing this. Having her here beside me while I am typing makes it a lot easier.
It seems lately that Penny has been losing something on a daily basis. Her ability to get out of bed, her vision, the hot tub. Yesterday it was her IV, but with some difficulty they were able to get it hooked up again in the other arm. Today, it is her ability to talk again. It is not like last time when she had the symptoms of a stroke, and seemed out of touch. She is very much aware of what is being said and done, and can shake or nod her head a little, and moan a little louder for emphasis when she wants to say no. She started moaning nonstop in her sleep last night.
1 PM
Doctors were just here for a chat with Mom and Dad and I. Things really took a turn for the worse this morning. Penny was in an enormous amount of discomfort and pain this morning when the nurses had to move her around in bed a little. And they were being very gentle.
They have increased and added to her medication to keep her comfortable. They can go further with it, to make sure she is not awake at all, but she seems unconscious and unaware as it is already.
Her biggest fear of dying, in fact the only fear she felt that I know of is that she would not be able to breathe and would be conscious of that. Awake and suffocating. Even before she was sick she wouldn’t stick her head under water when we were swimming. She is having a great deal of difficulty with her breathing now, and they can’t fix that, but they can fix the awareness and awake part.
She lost a lot today.
Yesterday at this time she was teasing the doctor and I with her wit and humor. The doctor and I walked into the room just after the IV team left and were a little confused at first when we were looking at Penny and realized that she had two IV sites hooked up but they were not attached to anything on the IV pole. We both looked at Penny in confusion, and she smiled and said, ’gotchya’ or ‘got ya’. She knew what was going on, we didn’t. Nurse came in behind us and hooked it up.
10PM
You were right Christopher. It has been much easier writing this blog than having to repeat myself several times when someone inquires about Penny. Most of the people we know and care about read it. In that regard it has been a godsend because I start crying every time I have to talk about her. I cry all the time while I am writing this too, but at least I didn’t have to talk.
I can’t continue to write about it anymore either.
Mom and Dad are planning a memorial service for Penny. When that time comes, and for those of you who may want to join us in collectively saying farewell to Penny, I will post the details on here regarding when and where.
With that exception, this will be the last post in Penny’s blog.
Thank you all again for your kind messages and support.
To the staff at Grey Nun’s Hospital, and especially the staff in Palliative Care, thank you all so very much for everything you did for Penny during our stay with you.
Michael
8 Comments:
Michael,
Know that many prayers are with you and your family during this difficult time. Also know that this blog has helped many like myself who have a family memeber who is with cancer...my mother has never been one to communicate with my sister and i and reading what Penny has been thru has helped us both understand what my mother doesn't tell us.
My prayers are with you and Penny. May she find the peace that she so deserves.
isabel
I love you Michael, for all you've done through all of this. You've been a true blessing in her life.
May god bless your family in these troubling times, and may Penny rest in our heavenly fathers house forever.
I know how difficult this must be for you all. My thoughts and prayers are with you in this difficult time.
Frank (aka) "Stew" [CCKMA]
i know that this is a very hard time and know that there is so many people who are praying and thinking of you. know that there is love out there for you and all you family. you and penny have brought so much help to people who are going through this and who have gone through this. to that we all say thank you.
hugs and prayers.
God Bless you Penny as you prepare for the glorious journey into our heavenly kingdom. God Bless you Michael and and the rest of your famlies may he give you strength as you go through this very difficult time. Thank you for your sharing. Please know there are many of us out here who have been truly touched you.
Thank you, Michael. Everything you've done, though difficult, is a gift to Penny & to us. It's wonderful that you are able to stay there with her but I'm sure hard too. It's a surreal time. May you experience peace & know Penny's love for you. And ours too for all of you.
Love,
Gloria
God Bless you Michael.. Thank you so much. You along with Penny are truly an inspiration and you have helped so many people who deal with these issues. Soon Penny will be flying high with the angels... and that will be a glorious day for her. Then I hope you can begin to take care of yourself. She will never be forgotten by alot of people that you will never know. Sleep well beautiful lady.. and you rest too Michael.. you deserve it.
Rhonda
Always in my heart, Penny
love
Annie
X
Tuesday, October 24, 2006
Tuesday, October 24, 2006
Penny passed away peacefully in her sleep this morning at 7:20 AM.
Michael
16 Comments:
My heart is heavy for your family today. She is done with her suffering though and made such an impact on so many. Her memory will stay alive through her children and grandchildren. There is a verse in a favorite song of mine that talks about taking your last breath on earth and then flying to Jesus.. Penny is on her way..Heaven is a much better place today.
God bless you all and thank you for allowing us to know your Penny and for sharing this journey with us.
Rhonda
My thoughts are with you Michael. Just know that you are going to go through a crazy time in the next year with all your feelings. Absorb the energy around you in the next few weeks. You'll need it. Take time to spend with yourself and sort things out in your head. Let people do things for you. They will feel helpful and you will be less overwhelmed. I am so sorry for you.
My heart hurts
Annie
X
Her spirit is now a part of all of us. But I feel a great loss too. And relief that her suffering is past. Confusing emotions.
Love to all of you,
Gloria
Michael - your and Penny's openness in sharing her story has helped me, and I'm sure others, in dealing with similar situations. Thank you for that.
Malcolm
my heart breaks for you all. but know that penny is in a better place.
Michael, my heart aches for you and your family for the loss of your Penny. Know that she is now at peace and no longer is in any pain. Penny will always have a special place in all of our hearts for her courage, humor and her sharing her stuggle with us.
Bless you....know that Penny is always in your heart and looking our for you and her family.
isabel
I feel sad and relieved at the same time. As Gloria rightly said, these are confusing times.
Here are some {{{{{hugs}}}}} for you and the family from someone who loved Penny despite never having met her.
Emily
South Wales, UK
Penny is at peace and the world will miss her! She was one of a kind Alex
Candi said...
Michael, Uncle Peter & Auntie Pat & all of Penny's family...
Thank you for your updates on the computer. How hard & emotionaly draining that must have been for both you, Michael & for Penny.
I don't know what to say. Penny is at home now & knowing that she is with Jesus is such a wonderful & peaceful feeling. I can't imagine being anywhere else. I saw that peace within Tracy's family was when she passed away. It was awesome to see this close knit family lean upon each other & give one another strength. Lean on others during the next year & absorb what they can give you.
I've never met you Michael, but my love & prayers go out to you, your family & to Uncle Peter & Auntie Pat and my numerous cousins & other aunts & uncles.
Penny is loved by so many people, some she's never met. What an amazing lady. She impacted everyone.
With sadness for your grief,
Candi (Penny's cousin)
My thoughts are with you Michael. You have been such a wonderful husband to Penny.
Take care of yourself.
My deepest sympathy, Michael. Penny was such a courageous and remarkable person. She will remaian in our hearts forever. I can't imagine how hard this must be for you. Her suffering is finally over. Thank you so much for keeping us updated on her condition. I admire your strength and all the love you had for Penny.
Take care,
J.C.
Micheal, it is NOT fair, it is NOT right, and you have every right to be pissed at everything and everyone around you.There is not one person in the world that can honestly say I know how you feel, because we don't! And believe me, every emotion you feel is normal, and your true friends, and family will see this, and accept it, ask Trish, she can explain. Whatever you say, or feel, or do, IS ACCEPTABLE!!!! don't ever forget that. Vent, cry, laugh, fear, hate, this is truely all normal. And Mike, my friend, PLEASE, if there is indeed something people can do, ask, from going to the store to get dog food, to washing your clothes, these are things people are willing to do, and it's O.K. to tell them, you are not asking. Please remember this.....
Dave
Micheal, my true thoughts I will tell you later, when the time is right, as will I others. And in saying that, Penny may have been right......
Sara Westbrook said...
To Chris & Family,
I am so sorry to hear of Penny's passing. The support from her family and friends has been incredible. Penny has made and will continue to make an impact on the lives of so many people.
You and your family will be in my prayers.
Love,
Sara
Farewell Penny, We will meet one day again. My heart is with you and your family. Until that time god bless you and your family. N
Wednesday, October 25, 2006
A Celebration of Life
Wednesday, October 25, 2006
Services will be held next week at the following location. In lieu of flowers, memorial donations to the Cross Cancer Institute, Grey Nun’s Hospital, Pennies for Cancer.com or a charity of your choice.
Condolences to the family may be sent to http://serenity.ca/condolences.htm
Celebration of Life
Penny-Lee Amanda Edwards
Saturday, November 4, 2006.
1:00 PM,
Millwoods Community Church
2304-38 Street
Edmonton, Alberta.
2 Comments:
I just lost my husband to lung cancer, so I can understand the pain you must be feeling at losing Penny. My thoughts and prayers are with you at this time of sadness. Take care.
I wanted to send an 'official' message of condolence via Serenity, but it didn't want to work for me for some reason. Here however is the text of my message. It's for all of you who are hurting right now.
"Thinking of all of you as you prepare to say farewell, and praying that time and reflection will help to heal the pain of your loss.
Emily (South Wales, UK)"
Wednesday, October 25, 2006
The Last Post
Edwards, Penny-Lee Amanda
(September, 29 1957 – October, 24 2006)
On the morning of October 24, Penny was called home to live in the house of her Lord.
She passed away very gently and peacefully, in her sleep and in the arms of her husband Michael, after living well in spite of cancer. She is also survived by, and will always be lovingly remembered by her parents Peter and Patricia Guzak, her maternal grandmother Elna Amanda Sparks, sisters and their spouses Pamela with Stanley Hicks, Patricia Guzak, Paula with Dennis Kreba. Her daughters Petra with Robert Valica, Tanya with Jesse Sichkaryk and granddaughters Kylie and Neressa, and her son Peter with Julie Lamanes.
She had a special place in the hearts of, and will be missed by her stepchildren as well. Christopher and Amanda Eveland, Jeffrey and Sarah Eveland, Sean McMahon, and five more grandchildren. Connor, Hannah, Nicolas, Vincent and Alexis.
Penny was born, raised and lived in Edmonton and area all her life to a family that settled in Western Canada at the turn of the last century, and has grown to a large extended family. To all of you that watched her grow up, and that grew up with her. Thank you for the memories.
Penny’s best friends, Fran Robinson, Pam Handley and Lori Neeves have never met, but they all felt Penny was their sister. The special friends Penny made during her struggle with this disease, Gloria, Annie and Adi will miss you until they see you again.
Our dear sweet Penny. You were a role model to so many of us in so many different ways. You will always be with us in spirit, and an inspiration to do the right thing. You showed us how to deal with the tough things in life, like cancer, how to live fully and graciously in spite of it. You reminded us to be grateful for and share what we have, and not to be to hard on ourselves or regret our actions because we did the best we could at that time. You touched a lot of people with your efforts to fight back at the disease called cancer with your website Pennies for Cancer, and left a legacy that can only help others.
You showed us in so many ways what love is, and we are going to share that with everyone who joins together with us next week in remembering your life, and saying farewell. Family and friends are invited to attend a service in celebration of Penny’s life at Millwoods Community Church, 2304-38 Street, Edmonton Alberta on Saturday, November 4, 2006 at 1 PM.
The family would like to extend a very warm and special thank you to the staff on the Palliative Care Unit at Grey Nun’s Hospital in Edmonton. You deserve to have the initials TLC added to the sign that welcomes people to your floor. If they take the hot tub out during the renovations beginning there today, call us. We will do what whatever it takes to get you a new one.
Condolences may be sent to the family at http://serenity.ca/condolences.htm, and in lieu of flowers please consider a memorial donation to the Cross Cancer Institute, Grey Nun’s Hospital, Pennies for Cancer .com or a charity of your choice.
1 Comments:
An incredible journey
A very special lady
A wonderful friend
An amazing family
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