posted a New Post on new web site
Thank you Lucas Romeo for sending a word document with my posts from this site. It was very much appreciated.
posted a New Post on new web site
Thank you Lucas Romeo for sending a word document with my posts from this site. It was very much appreciated.
I posted a New Post on new web site
Well as usual I sent out a flare for help and everyone jumped into action. Everyone please lets start to migrate over to a new site.....Please go to this website and ask for
1. go to this https://www.caringbridge.org/visit/lisacosta2/journal
2. where it says "visit a friends website" type in "Lisa Costa" then hit the magnifying glass to search
3. click "visit Site"
4. Click send request
5. Once you have been approved - go back to https://www.caringbridge.org/visit/lisacosta2/journal and hit follow.
I'm sorry to have to make everyone have to go through all this but I don't want the blogs public.
thank you for understanding
I just printed it for you. 132 pages going back to your first post on December 14, 2018.
BTW 132 pages you talk alot :-)
The problem is Michelle is that I "posted" in the post category not the journal category........I don't know if the "posts" can be all copied. Just the journals......I might be wrong but I'll try
you can upload the journal on the site
That stinks that hope.org is shutting down but I hear this is a good one too!
I don't know if any of you noticed but this great free site where I post Lisa's updates will be shutting down. It's just one more hurtle I need to get over. I never know what little thing is going to make things harder to get things done but it seems day by day there is another hurdle to make it harder to get things done. From what I read on this website it looks like it will close down June 1st of this year. This site has been so helpful to allow me to share Lisa's journey with everyone. It allowed to not have to talk in front of Lisa about her health over and over to everyone while she was next to me. It selfishly allowed me to get things off my chest and sometimes vent. I found it very helpful for so many reasons.
So its been a such a tough couple weeks. It's not one big thing its so many little things.
- A rodent fell into the pool and ate through the new winter cover, so that has to be replaced. (this has never happened in 16yrs of having the pool) Hopefully it didn't eat through the pool liner both were new 2 years ago.
- I lost my appointment book I use for Lisa in Toronto
- The Covid19 virus started out of control - Making so many road blocks for Lisa's treatment
- The limits of going to grocery store, its not a big deal we have lots of food but Lisa is very picky and it allowed me to constantly change things to keep her eating.
- Friday, I lost a prescription for her.....I have no idea how I did it I turned the house upside down and I can't find them. I already have a new prescription to replace, its not a big deal its just frustrating.
- now this site is shutting down.
None of these things are big deals but its not just one thing it's every little thing!
Not to mention all the other things going on that I just do because they need to be done which is OK. But its tough to get it all done when things are normal. I have to say Julia really helped me out this weekend. Not just this weekend she always is there for me and never has to be told. Julia is Lisa in so many ways.
So many of you have said if I need help please just ask, well I need some help.......I try not impose on anyone but it seems there is just to much going and I can't keep up. I was wondering if I could get some help with (2) big things.
#1. Could someone volunteer to find another site like this one. So I can post.....Maybe its facesbook if we can make it private. I do not want the world to be able to see these blogs. There must be another site like this one to help us out. But I find it sometimes takes forever to find good sites. So please let me know who would like to take on this task.
#2 This favour is little bit larger but extremely important. As most of you know Lisa does not read these blogs but over the months I have read a few of them of them to her. Lisa has asked me more than a couple times that she would like a copy of all these posts to read them when this is all over. She asked to promise that I would do it for her. Thats where I need your help. Can Someone from the beginning copy/paste all the blogs in a Word Document and send it to me. This is a big one that I need to trust someone that will promise me it will get done.
Please post back and let me know if you think you can help and thank you for the help. with everything going on I feel like I'm sinking but I know we will make it through all of this. Like I tell the guys at work "if it was easy anyone could do it but that's why they have us! "
Even a professional boxer doesn't do more than long 12 rounds to win a fight but Lisa has done 19 rounds of chemo and she still comes into the ring with her fists high and ready to kick butt. Even after all these years of being with her, I am still taken back by what she does, and how she continues to smile. This week has been a long week for her. She had a Windsor Oncologist appointment on Monday, a pre- screening for the transplant in Toronto on Tuesday and Chemo in Windsor on Wednesday that she comes home with a chemo pump till Friday. Lisa was extremely "antsy" at the Cancer center on Wednesday, I think with the seriousness of the Covid19 virus she just wanted to get back to her safe home and I don't blame her.
The amount of Lisa's chemo dose has been turned down after discussions with Dr. Ghafoor. We agreed to turn it down a little. I know this won't surprise you but Lisa puts on a strong face at the doctors. I am so glad I am with her and telling them her symptoms as they really are. Lisa's answer to everything is "I'm great". The reality is the chemo is wiping her out. Its hard to see it she powers through it and stay strong but I see her fade. It's hard to keep putting her through more chemo. It's hard to know what the right thing is to do. After our trip to Toronto with the transplant tea, I set up a meeting with Dr. Sapisochin (liver transplant doctor) to discuss chemo plans. I will try to explain what we are facing but let me first explain the teams.
team #1 - Dr. Ghafoor - Windsor oncologist - chemo
Team #2 Dr Quereshy - Toronto - Princess Margaret - Colon oncologist surgeon (Aka Dr. Really good looking!)
Team #3 Dr. Sapisochin Toronto Princess Margaret - Liver oncologist surgeon (He will do the transplant)
Team #4 - Transplant clinic Toronto General Hospital - They set up all the pre-testing for Lisa and the donors
Team #5 - The live Donor clinic (Toronto) - They set up the donor and vet the donors and pre-screening.
The Toronto teams seems to share information between themselves and talk. The Toronto team unfortunately do not have good lines of communication between Windsor doctors. I have to continuously give each team updates via transcripts from our appointments. Which is OK that.s what tour managers do!. So I hope you have all that straight...lol
I spoke with the Liver transplant doctor in Toronto and told him I think Lisa might have to stop or maybe skip a round chemo because I don't know how much more she can handle. He agreed but the under lining issue is, if the cancer spreads doing a transplant is off the table. You see the how this get extremely tough and complicated to do. These are the days I read a lot of papers on chemo, transplants and the cannabis oil. It's hard feeling like the one putting her through hell, pushing her to do chemo. Not that I am because Lisa wants to do the chemo and I have to argue with her when I call it off. Sometimes it just too much for her to do so I'm the one that calls it off. But what if it spreads? I am constantly so worried if it does. I've contacted my cannabis researchers last week and wanted to know if I can push the boundaries a little harder going from 3.3 mL of CBD oil twice a day to 4.0 mL. They said that 3.0 is high and 3.5 is OK but It really has no limit. So I've started the assent to gradually push it higher to 4.0mL over 2 weeks. I will then keep her at that amount to try to keep the cancer contained using chemo and the cannabis oil to clear a path for the transplant.
It's very difficult to know what to do when it comes to the rounds of chemo. The doctors look to me and always turn it around "what do you think?" I think to myself , shouldn't I be asking them? I think its because I know Lisa, I know everything about her and her condition and I think they know I don't do things on emotion, Though I'm always emotional lol. I try to do things based on her history, how she feels, how her body and mind are reacting over the period of chemo. There is a lot of thinking and trying to do the best for her.
Here is side note........ As I sit here writing this I hear her singing a silly little nursery rhyme...."so sorry Susie , I cannot play with you, my dolly has the flu ...." something like that. Her singing brought me back to when the kids were little.She would sing that song to them all the time. She's just as perfect now as she was then. Its been a while since I cried (maybe 4-5 days) but that did it for me....How can someone so perfect have this horrible disease? I ask myself this all the time. Let me dry up my tears and get back to this journal. The singing made me loose my train of thought but it keeps me planted on why I have to do the right things and never stop searching for the right road. The prize is too great to loose.
Lisa is doing ok. During the days of chemo when she is on steroids she is strong and vibrant. The days that follow will bring fatigue that will wilt my beautiful Lisa like a flower. Lisa is happy that all of us are working out of the house now and reducing the risk of getting sick or even worst getting her sick. This journey seemed hard enough and I didn't think it could be any more complicated. Now with this virus all around us it makes it only that more complex. So many hurtles, so many road blocks, Life pushes you so hard off the road and you feel like you just can't keep it on the road anymore. Every door is locked and the only way to open them is through a complex labyrinth of riddles to get through. I find it harder and harder to clear the path for her but I won't stop till I get her to her bliss.....I want to see her in her garden again with the flowers she planted surrounding her smile. That will be the ultimate prize to this unfair game that we are playing. I will get her to her bliss once again.
Today we made our way to Toronto for Pre-screening for a Liver transplant. With everything going on we were a little worried and not sure what to expect but it was very different on the road and in hospital. There were very few people in the city and in the hospital. This made it great for us. less chance of getting infected by anyone else. Lisa slept well on the way up and when we got to hospital she was very nervous as you can imagine.
The pre-testing was very simple they asked about the timeline of events that lead us here today. I gave them a run down of the entire years highlights and maybe low lights if you look at the entire picture. But Lisa is still here and strong so there are many more highlights. It didn't take long for the questioning doctor to know Lisa is ready and a positive being to have a transplant. He was happy to see she is doing so well because the chart he was reviewing showing her condition does not match the person that was sitting in front of him. Then they made sure she had a support person to take care of them after the surgery. They asked me a lot of questions to make sure I would be OK to take care of Lisa, I willingly stepped forward. lol
The transplant team gave Lisa a passing grade with the short assessment and she will be referred for the next steps towards the transplant. They told me there would many appointments that will be upcoming. So I will take things day by day, appointment by appointment. It was a long day of driving, meetings and now I have to get things ready for Lisa chemo tomorrow. Lisa will have another round of chemo......The chemo is taking its toll on her and I will monitor her closely to see how many more rounds she can take. I have been working VERY closely with the Windsor Oncologist (Dr. Ghafoor) to make sure we are not overdoing it. I honestly think this might be the last one, then maybe skip one then go back at it. Dr. Ghafoor actually reduced the chemo amount for tomorrow because of the amount of the fatigue Lisa is experiencing after chemo.
There is a song by EMINEM called Lose yourself and it describes what we are up against.
If you had
Or one opportunity
To seize everything you ever wanted
In one moment
Would you capture it
Or just let it slip?
His (her) palms are sweaty, knees weak, arms are heavy
That could not describe things better. The facts are this. This is Lisa's only chance. Because Lisa has cancer she cannot get on a deceased donor list because cancer make you not eligible as a recipient . Lisa's only chance is to have a "live" donor transplant that we have to find to make this happen. (hopefully the kids will be a match). If the transplant goes well we are in luck, if not and her body rejects it she will not be eligible for another transplant. We have "one shot" like EMINEM says to make this work. That is why the road ahead is going to be tough but Lisa is going forward with full steam and a positive attitude. Its a lot to get your head around. There are so many emotions that bring you up and down and so many things to fill your head to think about.
this will be a tall mountain for all of us to climb
Sorry I haven't posted in a while but here is some news on Lisa. She is doing pretty good. The chemo seems to have left her stronger then some of the other rounds. I'm sure being off for 6 weeks allowed her to regain her strength back. She has been spending her days resting but her fatigue is not as bad and thankfully her mouth sores have stayed away allowing her to eat.
The one thing that has improved is her appetite. It has come back and she is trying to gain some weight. She is doing a great job and has gained back 6 lbs. It might not sound like much but it's so much better than losing it. Everything else is in check. Lisa is still smiling and is all "gun ho" for more chemo. I know it sounds crazy but she knows the big picture and chemo is one step closer to getting better and one step closer to getting the transplant.
It's a funny thing we were both excited to know she looks like she will be eligible for a transplant which is great news but when you start facing the reality it scares the crap out of you. When you sit down and think about the surgery and risk and you hope everyone comes out of it ok. Then if you really want to be shocked sober, but yourself in Lisa's shoes. Stop and think about it. It will stop you in your tracks. Imagine the fear, I can see it in her. I try everything to keep my poker face stern and tell her she will be fine. There is no one stronger than you. You will look back of this and laugh. After this nothing will ever scare you again. You will walk into it and run home, I'm sure of it, I've seen it!!!!! I keep telling her this in hopes it will keep her mind and body strong. She has an incredible strength but the road has been long and even Wonder woman gets tried.
Lisa has always been able to stay strong but she needs to rest her body and mind before this next big event, the transplant. I will keep her distracted till she is ready for her Olympic debut. She will be the one we all talk about. The underdog with incredible odds. The one that no one saw coming and the one we talk about with our friends. Lisa will be the person that you will use to coach others that will need encouragement. She will be the one you talk about to pull others spirits up when they feel overwhelmed. You will use this story of Lisa to tell them, there is hope, there is more road on this journey, you are no were near done! You will say "I knew this incredibly, strong positive woman named Lisa and she did it and so can you." She is our inspiration.
This road we are on is long and hard but rest assured we will not stop till we reach the top. I promise I will get her there.
Lisa's loyal tour manager and #1 fan
Of course she offers hope and smile to everyone! She’s such a kind, hopeful, helpful person. ❤️
Lisa made it through round #18 of chemo. During the 46 hours of chemo, Lisa is extremely energetic but the medications she takes when on chemo keep her "wired up". Once the medications stop the effects of the chemo set in. I guess I would call it the aftermath of chemo. Lisa's physical health dims as the chemo attacks the cancer in her liver. Unfortunately the chemo reins down on her entire body. Lisa will typically rest and take naps a couple times a day and spend a lot of the day in which I call the "command center". I came up that term because Lisa hates to say she spent most of the day in bed. So I redefined our bedroom. Now it sounds like much more happened when you spend the entire day in the command center.
Lisa gets frustrated because she wants to feel better and feel better NOW!. She get discouraged sometimes because its been a long road and she wants to improve and when she's on chemo it takes you down to the point to where you have nothing left to give before they stop the chemo. It's hard to see her like this because she tries so hard to stay positive and stay strong but the chemo just does not allow it and it tries to beat her down. But we need to remember it's Lisa, so even with all this going on she still smiles and incredibly keeps a positive attitude. I'm not sure how she does it but I watch her pull herself up everyday and I'm always amazed by her tenacity. She is just one tough cookie.
This week will be tough on her only to slowly recover and get inundated again with round #19 next Wednesday. Lisa begrudgingly goes to every chemo appointment with a smile and now I see her giving hope to the newcomers at the Cancer center in Windsor. Lisa smiles and offers hope to the people that she can see are scared and clueless to everything going on as they get their chemo. Lisa looks at herself as a "senior" chemo patient and when she sees a another person sadly looking at up from their own personal battle, Lisa smiles back and says "we will all make it, we made it this far!!!" People smile back and Lisa cheers them on. Like Lisa cheers on others, I am Lisa's cheerleader. I tell her all the time "You're going to be OK Lisa". I learned that from a fellow Cancer survivor, our friend Nurse Michelle. Michelle told me early on that when her husband Jimmy told her that, it made her feel good and she believed him. So I try to Lisa the same thing when I think she's having doubts.
Spring is coming and the birds are singing and I see Lisa enjoying the morning sun and listening to the birds. It picks up her spirits. Soon I will take her to pick out her flowers for her garden. She has mentioned it a few times that we are going to have to start looking for flowers . I might not know the flowers she wants to plant this year but I do know the flowers are always "ours" but when we get home the shovel is always mine...lol Lisa is excited to get outside and feel the heat of summer. I can't blame her. I think the only competition she has might be the sun. I think it might be the only thing that shines a little brighter than her.
Her loyal tour manager.
Today Lisa returned to the Windsor Cancer center. I woke her up this morning and she didn't seem to be excited to go, which I don't blame her. Once she was dressed and made it down for breakfast she had a smile on her face. She gave me a hug and tells me "it's going to be a good day we get to spend the day together". Now that is seeing the cup half full! Not that she will be weakened by the chemo, Not that the road ahead will be ruff. None of that lost her smile. Lisa always finds a way to make everyone,s day especially mine.
Things are moving forward as far as the transplant proceedings. Lisa is scheduled to go to a "transplant pre-test meeting" on March 17th. It will be a busy week. March 16th Windsor oncologist, March 17th Toronto transplant pre- test, March 18th chemo again. The appointments will keep Lisa running.
Really not much more to say. I really wanted to share how Lisa faced this tough day. Maybe I just wanted to brag how lucky am to have such a loving bride. Many a little of both. If you don't find a way to smile thinking how Lisa looks at life , well I can't help you.
Enjoy your night when your having a rough day think of this story. Hug the one you love the most for not other reason then they are they one you picked you love the most. If you can't decide which one you love the best, hug them all!! I hug my bride daily, well to tell you the truth I hug her a few times more then once a day!
Have a good night everyone!
All good news. XO