As always, sending you hope, strength, good thoughts and prayers and love.
As always, sending you hope, strength, good thoughts and prayers and love.
John. My thoughts and prayers are going your and families way.
I just wanted to give everyone a quick note. Yesterday we traveled to Toronto for blood work and a CT scan. It was a good clear drive with no issues. The directions to Toronto were a little different than usual we took the 401 east towards Toronto but if your driving and your diva is feeling a little down......you take a detour to a thrift store, you go in and take a good look and buy a nice red skirt and a matching jacket. Then if your still a little upset find another thrift store and just look around then to make it a great day find the third thrift store....lol That put Lisa in a better frame of mind.
I think, let me rephrase that, maybe I know that these trips to Toronto are hard on Lisa they are never a happy time or a happy place. I can see the days ahead of our trips her spirits dim. The next trip on February 19th will be a tough trip, even if the results and outcome are good she still have a long road ahead. If the Doctor recommends a transplant it will be the start of a long road. Lisa is starting to worry about things and how can you blame her for doing so. We will deal with the news as it comes and try not to make assumptions to what the future will bring. Lisa has changed what some of the doctors would think would be the logical path on her journey. Lisa has made new paths where no one thought there was a road, so I will wait and see and like so many times this year hopefully be amazed once more.
Our appointments yesterday at the hospital worked out well we were at the hospital for 47 minutes based on my parking receipt. They took Lisa in for the blood work immediately and did the same for the CT scan. We got there early at 2:00 pm. I had figured 30 mins for the blood work and she needed to be at the CT one hour before the appointment which would have been at 3:15. But like I said things went well and we were back in the car before 3 pm and made home to Windsor just as the snow started coming down last night.
I know these next couple weeks will be hard for Lisa to get through. I don't have anything witty to say about it other than this is the part of life that makes you really think whats important. Where you try to find happiness but it can quickly diminish within seconds because of a thought or moment that reminds you of what you might you think is lost in the future. Sometimes it is song on the radio or a memory from the past that pushes the happiness away because you think you might not get a chance to recreate that moment again. We try to hold on to the happy , cheerful moments but the reality of our current situation seems to filling the room and the brutal reality that we are within sometimes isn't what we are looking for or want to face.
There are times I think its not real and I let my mind try to surmise as if it's all not true but as quickly as that silly thought enters my mind, my eyes eliminate any myths I thought I could conjure to try to make all this go away. Lisa has slowed down and her physical abilities are reduced compared to what she was like as little as 18 months ago. To see her at home trying to do light tasks now clears any uncertainly of what the reality of how her physical abilities have faded.
I will try to post when something worth posting comes up. It might be while so please don't think I stopped posting. Now we wait for the days come forward and we wait for Lisa's Oncology team provides us with the map to the we will be on road for her next journey on February 19th. I apologize for not being able to leave this post with an uplifting ending but I don't write these posts I only narrate the story as it is presented and sometimes I find it hard to see through whats in the fore front. Other days I seem to find good in even the darkest places but today isn't one of those days.
Good night try to think of good thoughts
I am going to start with, we have some encouraging news but like a have asked in the past please do not discuss these details with Lisa unless she talks to you about it and if she does do not add any detail. Please let her tell you the results. DO NOT fill in any blanks. Please understand that there are details in this post that I have not shared with Lisa because I do not feel that there could be any good that would come of it if she knew. Its nothing bad but I need to keep Lisa in positive mindset with as little or no opportunity of negativity. You can imagine being in her shoes and spending time wondering "what going on inside of me."
I received the results of the MRI which is one of the two scans that she needs to do prior to her appointment to see the Liver Oncologist in Toronto. To quickly summarize, many of the major measurable tumors have continued to shrink based from the baseline MRI that was taken on November 4th. Some have stayed the same. They saw no signs in the MRI that the Cancer has spread. Which is GREAT news and this is a very positive sign. The report did say that the MRI needs to be compared with the CT scan and we are going to Toronto on Wednesday for that test. The CT scan will allow the oncology team to understand the growth behavior of the current legions on her Liver. The Ct will allow the doctors to confirm from another perspective what the MRI revealed.
I don't want to be negative but it was me interrupting the MRI and trying to completely understand the verbiage and digesting the entire report without just reading only what I want to hear. I had to read it over and over and as I did I had to accept everything it said. We need to let the doctors interpret the results completely. Because the MRI report says that the CT scan needs to validate the MRI. The CT scan needs to match the MRI findings. This year has been very difficult and I find my expectations don't always match the reality. As this journey progresses I've tried to let the facts write this story and not extrapolate theories that I might perceive both good and bad fill to in the blanks. This story is tragically is not fiction, I really wish it was. I wish I could write the rest of the story and it would play out exactly how I typed it. But its not that easy.
I can say that I have hope where at the start of this story I had very little. We have our kids who have been strong through this entire ordeal and best of all I have my Diva, Lisa. Lisa continues to push forward with all the steam she can muster up and some days it is very minimal but she gathers so much momentum with so little steam. My stories many times culminate to the same destination or maybe we can call it Lisa's layer. Lisa's happy place her home. Maybe we can just revert back to calling it her "nest". Lisa finds strength throughout the day where others might find darkness being within these walls. Today I could see she breathed in power as the news of the MRI filled her ears. I could see her summoning control and focus over her mind as her took in the visual of her body healing. Lisa is regrouping and preparing for her next monumental assent. Lisa will dig her heals in and drive forward as she has so many times before.
I will get Lisa to the stage where she will seamlessly perform and as always we will watch in amazement. Regardless of the circumstances Lisa's spirit seems to never dull. Her smile and drive will raise us from our seats to cheer her on. Let's continue this marathon of hope and try to keep up with her if we can. Recognize that this was a good day since we all got to smile with her and knowing that today she is winning this battle.
Smiling with you
I just need to say.... If you can't feel good after reading one of these posts, then you JUST DON'T FEEL! As always - we are in awe of Lisa's AMAZING RESILIENCE... yours too John! If Lisa ever lets you go as her tour manager - I know there is a bright future for you in MOTIVATIONAL SPEAKING!!! LOVE and Gentle Hugs. Love , Tony & Robin
Lisa is slowly coming out of her chemo fog. She is frustrated because in her mind she should be up and raring to go. Lisa feels that because her chemo is paused for a little bit so should all the side affects should stop NOW. I have been trying to coach her in getting her calibrated to know that her fatigue is normal and that in a few more days she will be pulling out of the funk. We all know Lisa. I'm sure she will pull out of this nose dive like a ace fighter pilot. I know I will need to get out of her way. I've already been told of her plans.
Today I had to get Lisa saddled up to make our way to Toronto for the first her three appointments over the next few weeks. Today I had to pull her our of bed this morning at 3am to make our morning MRI appointment at Toronto General Hospital. Lisa gets very nervous for MRI's because she's very claustrophobic. Thankfully I was able to get her a prescription for "adivan" which calms her down during the procedure. Lisa was able to sleep most of the way up to Toronto and with taking the Adivan about 20 minutes before the MRI, she was able to sleep almost all the way home.
After the MRI we were able to have breakfast with My Cousin Mary her daughter the newly wed's Natalie and John Micheal. They were the couple that me and Lisa went to their wedding in Hamilton in November. It was fun and we enjoyed breakfast with them. Then like when you are dealing with little kids. Lisa bribed me and said if she was good if I could take her to a thrift store. Well I don't need to be bribed and Lisa knows all she has to do is ask and I will do anything for her. It was a good outing and I took her to two thrift stores and she didn't buy anything.....A win/win for both of us I say.lol
Lisa is doing better everyday but she is very nervous to know the results of the MRI. We won;t know anything till her appointment with the Liver oncologist on February 19th. Lisa has amazed us all with everything she has accomplished and all the while keeping an incredible attitude and contagious smile.
I will keep everyone updated as things change. We will return to Toronto on February 5th for a CT scan. I probably will not post till after the fifth. I find myself saying I won't post because no news is good news but then Lisa will do something that makes me shake my head and it will be like so many times and she will just amaze me and I will want to share it with everyone. You would think I would be used to the things that Lisa does and not be shocked but so many times I am. It's Lisa so I never know what tomorrow will bring, how she will do the simplest things that intrigue us. How she will be able to make us smile, how she will make us enjoy and be thankful of our everyday.
How a good night, Enjoy your day and everyday Like Lisa does.....You will smile for things that are important and learn to let the small things that are not so important slip to floor.
Today was good day and Lisa is slowly feeling better but she her fatigue is holding her back. Lisa wants to feel great and bounce back but with each round of chemo its compounds in her body. The mouth sores are trying to come out and are sitting just below the surface of her mouth.but before this round I was able to work with the doctors to get her suave and medication to hopefully keep them at bay. I can see she is slowly feeling a little better everyday.
In the morning Lisa was a little tiered so while she went to lay down after breakfast I cleared the house of all the cancer related things, I returned the I-V polls, the sharp needle box and all the stuff that she needed during the chemo cycle and hydration. I also called the canter center and discussed why we are cancelling the last chemo that was scheduled a couple months ago. Doing that chemo with all the appointments we have coming up will leave Lisa to weak to be able to make to Toronto. So the Doctor very much agreed that it was a good decision not to do the last chemo. What is interesting is that the Windsor oncology team does not know what Toronto Oncology team has scheduled. So I have to advise the Windsor team to what the next steps are. I know it seems odd that the two teams does not know what the other is doing but they don't. That is why I have meetings with both teams to keep the two up to date.
Today was a beautiful day and I was home so I convinced Lisa to step out of the house to get some fresh air this afternoon. Well Lisa sure got her second wind. As we were driving out in Amhurstburg by the shore line and looking across into Ohio on this sunny clear day, my phone went off and my cousins Patricia and Carmell invited us to come to the lake front home in Kingsville on Lake Erie for some home made soup which was perfect. I thought it would be pushing things but I thought it would good to get out of these four walls. Everyone who reads these blogs know I always have and interesting story when it comes to Lisa, so let me tell you about the rest of the day.
Lisa was all up for going out to see my cousins which I thought would be a stretch but she seemed excited about going. So we had a nice lunch and while we finished having some small talk as we enjoyed the view I figured I would get her ready to head home. Well this story is about Lisa, so instead I me giving her nod to get going Lisa says "Hey you guys you want to go to the thrift store". I almost fell over. This woman blows my mind, so I got Lisa ready and her accomplice my cousin Patricia was at her side and off we went. So went to two places in Leamington then one in Essex. Lisa was smiling from ear to ear and by the time we got home she said she was ready to go back to bed. As Lisa was using her last remaining energy to get into bed to lay down she looked at me and gave me this line to reason out the entire day. Here is her quote....."You see John, now at least I have something to be tried about" and of course she says it with her big smile just to razz me a little.
Little by little she is making her way back to wellness and she does it with her style. Everyday things change sometimes for the good and sometimes she slides back. You can see today how things can change in hours.
It was great to see her get better as the hours went by and see her having fun. It was a good day and I hope the break in the chemo will allow her to recover and let her get back to herself, day by day.
Have a good night
Today is chemo #17.....This will be the last chemo for a while till the Toronto doctors tell us Lisa's next steps. Lisa is scheduled for an MRI, a CT scan then an appointment with the Liver oncologist on February 19th. All of these appointments are in Toronto. Lisa was excited this morning to know this will be her last chemo for a while. These rounds of chemo have been tough on her and even with her positive attitude the drugs have been pulling her down physically. What is incredible is that with all the strong drugs / chemo she has had none of them have been able to break her amazing positive attitude, sparkling eyes and cheerful smile.
I love how Lisa fights her battles, she doesn't cuss or pound her fists she smiles and says "its a good day" regardless of whats going on. She makes you smile just being near her. That was the case this morning going into the cancer center Lisa's smile had people smiling back and literally looking at me thinking I was the patient. By the time we made it upstairs to the chemo ward Lisa was sending her regards to the patients we have seen in the past and making friends and offering strong words of encouragement to a 1st time chemo patient next to us. The poor guy was nervous as all hell but it seemed after a few words from Lisa and the penetrating force of her smile paired with a dose of her bubbly excitement he seemed to calm down. I think he thought to himself if this small women can take this and has made it over a year I can do it too.
I think my take on Lisa is that if she had superpowers and from what I see everyday from her, I think she does, I think the superpower she has is "contagious-ness" . She has a superpower that is able to spread her spirit and kindness to anyone who is near. I've seen it happen over and over. If she walks in a room and locks into to you "BAM" your smiling, You don't know why but you will be. She will fill the room with smiles, its that contagious, so be warned!!!!! lol
What my dear Diva can't fix is the ability to reduce the fatigue that all this brings with it. I know the reality of this round of chemo will hit her hard and she will have to fight to keep her smile shining. The next few weeks will push to dull the sparkle in her eyes and keep her from doing even the smallest things she likes to do around house. I'm sure she will rise from the rubble as she inexplicably does and take things day by day, seeing the good in everything.
I will keep everyone posted over the next few days as things change......always remember no news is always good news.
So knowing all the the stuff going on with Lisa, you have nothing to complain about!! lol
Have a good day and if you get down let me know and I'll set up a call with Lisa to cheer you up.
Checking out from the Windsor cancer center with my cheerful bride
HOPE, LOVE and Prayers....plus Gentle Hugs - Love Tony & Robin
Lisa's mouth sores have subsided and she is feeling better. Overall though she is tiered and we are at day 11 of this 13 day chemo cycle. Lisa usually starts feeling better on or about the 7th or 8th day of the cycle. I spoke with the team at the cancer center today and they give Lisa some medication to try to reduce the chance of mouth sores for the next round but our pharmacist noticed it does not gel well with her chemo medications that Lisa takes. We will present this to cancer center in the morning. We faxed our concerns to the cancer team and I'm sure they will respond and we will do whats right for Lisa. This is another case of you really need to pay attention to everything.
This evening I brought Lisa for blood work prior to getting chemo and while Lisa was waiting I waked to the cancer center and I had a long discussion with a trusted Nurse on the oncology staff. I reviewed everything with her and let her know my feeling on doing this next round of chemo as well as the last scheduled chemo on the 29th of January. She told me I was on the right track in my thinking. I had the same conversation with Nurse Sherry this weekend and we came to the same conclusion.
So here is my thinking.....As literally as painful as it might be to let Lisa proceed with the next round of chemo this Wednesday I think we should proceed. This will satisfy the amount of chemo and time she needs to enter the clinical trial to be able to proceed for the transplant for her liver. . We have the mouth wash, Miles solution and the suave to try to combat the mouth sores so we will give a go. I seen Lisa do incredible things and I'm sure she will amaze me once more.
If Lisa reacts the same to this next round chemo as she did to the last one, we will cancel the last chemo on the 29th of this month. The last chemo was added by Lisa but I think it will be too much on her to do chemo and go to Toronto on the 26th of January, February 5th and February 19th. She will be to weak to do all that. I have spoken to Lisa about this game plan and she is ok with it. We will play it by ear and so how she feels because we can cancel the last chemo even the morning of the appointment. So that is our plan. Lisa can only take so much and I can see that my Diva can only do so many appearances. Lisa has been incredibly strong through all of this but I can see her strength is fading and she not bouncing back between treatments. The mouth sores took a toll on her.
I am looking at the situation like this. The chemo is being used to keep the cancer at bay not cure it. Even if the tumors shrink the doctors are still saying they will need to do a transplant and not have the opportunity to cutting away the tumors and letting the liver regrow. So using that logic we can take a break from the chemo for a bit like we did in July and August prior to her operation in Toronto in September when she had her colon operation. You never know maybe the cancer is gone in the liver like it vanished in her colon. That would be amazing we never know. We will take it day by day and let the MRI and CT scan scheduled in the next few weeks tell us the next chapter to this story and proceed based on the results.
Because I constantly look forward to the next steps and seeing the upcoming scheduled gap without chemo I have started ramping up Lisa to the next level of cannabis oil. Lisa has continuously been taking the oil daily. Most people take 0.2 to 0.5ml of CBD oil per day when they use this product. But after doing extensive research and consulting with other doctors on this new solution I have found the doses need to be higher which I was on the right track, based on the recommendations of (2) medical doctors doing research using cannabis oil to support cancer care. Lisa was using 2.2ml twice a day of CBD oil and 3.8ml of THC oil to help her sleep over the last 11 months. I have been slowly increasing her dose of CBD every few days. My goal is have her at 3.0ml of CBD oil twice day when she is on her break of chemo. The doctors tell me she cannot take too much of the CBD oil.
Well, I think I shared enough and please remember, please do not discuss ANY of this with Lisa. If she talks about it pretend you heard it for the first time. I share this information to make sure everyone knows what is going on and that I try not to miss anything in regards to her care. Regardless of everything going on around me Lisa is my primary focus.
Have a good night and remember when this story started there was little hope. Now the story has changed lets keep hoping things will go our way.
BEAUTIFUL post my Cousin! I absolutely LOVE and AGREE with the mirror analogy!
Love and Gentle Hugs - Love, Tony & Robin
The last few days have been rough on Lisa. One of the side affects from chemo is mouth sores and over the last year of chemo Lisa has been lucky enough not to get them, but this last round caught up with her. It started just after her last couple of chemo rounds. I had called the doctor about 2 weeks ago and they prescribed a wash that was working. On the last round of chemo the wash didn't seem to be keeping up, so against Lisa's wishes I called the nurse practitioner. Lisa always says shes OK but I really pay attention to her and I never listen to her when it comes to how shes feeling. I always call in my troops when I need too. Oh but otherwise I listen to her like a puppy, sometimes, maybe some of the times......lol
I got the nurse practitioner to do a house call on Friday morning and she prescribed Lisa a suave for her mouth sores and some pain meds. The poor girl was in so much pain she told me that her lips hurt more than any or the surgeries. Lisa can handle a lot of pain. I've seen her do it over and over but she was beside herself. So I gave her the pain meds and got her comfortable and she kept applying the suave and that seemed to help. She finally feel asleep around 1:30 this morning and slept straight through to ten. the problem is that her mouth is full of sores making eating a very painful activity for her. My issue is that shes not carrying much extra weight on her these days so skipping meals is not a good thing for her.
Today, thankfully was a much better day. Lisa was up and about and she could talk without pain. Today she eat really well and did not ask for any pain meds. The sores are healing and the pain was minimal to none. My concern now is her next chemo on Wednesday. With each round of chemo the mouth sores have gotten progressively worse and seeing what the chemo did this last round to her was tough to see. After consulting with Nurse Sherry a couple times this week, (on her off hours and her day off). Le t me say,
Sherry is amazing she always answers my calls regardless of time or her work schedule. I am so thankful to have her on our team. Sherry agreed with my concerns so Monday I will call the Cancer Center and discuss the next plan of action with Dr. Ghafoor. (the Windsor Oncologist)
Lisa is currently scheduled for 2 more rounds of chemo. I am very concerned with the side effects that are extremely painful for her and she needs to be in good enough health to be able to travel to Toronto at the end of the month for an MRI and the beginning of February for a CT scan. I'm keeping it all in consideration, her health, the chemo, the upcoming cold. I will make sure her doctors see the entire picture. I find the doctors have a lot going on its it up to the care givers (aka Tour Managers) to help them see the full picture. I see Lisa everyday I know every detail about her, from her everyday heath, to everything that goes in and even the stuff that comes out. Poor Lisa has no dignity left but she has let me into knowing every facet of her life to let me make sure I help her and let me do the best I can for her well being.
So with that I will present Lisa's condition to the doctors here and in Toronto and let them help us make the best decisions using their knowledge based off how Lisa currently feels. Maybe they will give her a little break from the chemo. I'm sure they will do what best for her because I won't let anything else occur that doesn't let that happen.
I will keep everyone posted on what the next steps will be when I find out. It probably won't be till Tuesday. Till then Lisa is sound and peaceful in her nest. The sparkle in her eyes is coming back and I'm sure she will be back in action tomorrow giving out commands to her faithful and loyal team Me, Robert, David and Julia. We are all happily waiting to serve a person that has served us and done so much for all of us, some of us their entire lives and for me over 30 years. We have a lot of debt to pay back for Lisa and we are all fighting to be first in line to repay her. I've often said life is mirror and you will always be shone upon what you have shone onto others. I think I might have put some sunscreen on Lisa on this winter day.
Have a good night
Thank you for the updates John, but most of all - thank you for being the loving, caring, selfless husband, father and man that you are! YOU are a most incredible "Tour Manager" that sets the stage for Lisa to always be surrounded by the best medical professionals and to ALWAYS have the highest level of success. Thank you for that AMAZING sense of humor, that gift you have that you so willingly share with all of us when writing your updates! Sending LOVE and Gentle Hugs - Love, Tony & Robin
Good Evening Everyone,
Today Lisa had a busy day and I think she think she wore herself out. This morning her sister Lora came and took Lisa to see her parents which she loves to do. Lisa is great at sitting with her Dad and listening to him recount old stories of his youth for hours. She really has a good bond with him and seems to never run out of patience with him regardless of the same stories over and over. Maybe that's why she still hangs on to me, I'm not much different. lol
This afternoon we had a calibration meeting with the in home nursing care coordinator Lindsey. Lindsey is the person who allows us to have the nursing we need when Lisa is on chemo. Lindsey read about Lisa in her reports prior to the visit. Like everyone, Lindsey looked to be in disbelief that the women in the reports was Lisa sitting before her. This was the person with the with such a serious diagnosis. As Lisa talked, Lindsey did the same thing all the doctors do as Lisa fills the room with "Lisa". I think that's the best way to describe it so everyone understands it. Lindsey had a look of confusion as Lisa gave her rendition of the prior 12 months. Lindsey's puzzled look slowly turned to calmness and her frown of confusion slipped away and was replaced with a smile. Then every once in a while Lindsey would give me a glace with a raised eyebrow like to say "is she for real?". I would just smile back and nod my head to confirm yes its real....."its the real Lisa".
As Lindsey continued with her review and was wrapping things up, another nurse Melanie came in. Melanie is the nurse to help out with Lisa's ileostomy. Lisa didn't miss a beat and stunned both of them with her charm and bubbly self. As Lindsey left she told me she is amazed by Lisa and her attitude. I smiled and said we all are amazed, but Lisa is Lisa I thought to myself. So back at the table Lisa was speaking with Melanie and we discussed in length the issues we are having. I've had a few nurses come to house and help with this but Melanie has been the only one I'm impressed with. Unfortunately after telling Melanie and showing her how I take care of Lisa she said I was doing things very well. I was hoping she would have found something obvious but she did give me some pointers and helped me with some things that I hope will help. My issue is that I wasn't really hoping I was doing things wrong. Melanie found that I wasn't anything too off the mark. . Melanie took things step by step and really went through every little detail. She was great as far as knowing her stuff. I'm hoping her tweaks will help.
Well the nurses were here for about 2 hours and left at around 6pm. Our little diva was spent I barely got her to eat and she slipped back into her so called "nest". And with the little energy she had left she did her trade mark literal tiny clap of excitement as I pulled the covers up and she said , well not really said, she kind of sang..."I love my nestttttt!!!!!" in her squeaky little voice. How she can be so content about the simplest things is beyond me but she is.
I don't know what tomorrow will bring but today and so many other days have been good. You just become thankful and spirited with happiness when you are with Lisa. All my posts culminate to the same conclusion, I wonder how she does it? How can she be so giving with happiness with everything she has going on? Lisa helped me see life a little clearer this last year and she lead me to see what's really important. There is so much good in our lives that out weighs the bad and it sometimes takes a "Lisa" to help you see it. I'm thankful Lisa helps us all see it. How lucky I'm I to have had front rows seats to all of her shows.
What a good day
Dear Lisa & John ....
Praying for you and wishing you only good things to come in 2020.
Hugs, Blessings and all our love. Aunt Theresa & Paul from away in Newmarket.
(Theresa Ravanello Wharton & Paul R Wharton)