Patty Knight

I am happy so many of you are following my post.  I just wish I could get myself together and write more often.  Well, I had surgery in December to remove another metastatic lesion.  I went to see the doctor for my follow up and thankfully this time my stitches held and I am healing nicely this time.  They removed my stitches and said that the pathology report looks like they got it all.  Thank God and all who have said prayers.  It is amazing that my cancer has come back so many times yet God hears and answered all the prayers to heal me again.  The doctors still do not know why my cancer was able to come back while I am on treatment and have been on  the new immunotherapy now for over two years.  They looked at the cells to see what may have changed and what treatment would be my best option and it unfortunately is the drug that I tried twice and it was just too toxic for me.  The doctors have decided that since I did make it the longest without reoccurrence on the immunotherapy that they will just keep me on it for now.  If for any reason it comes back again then we will have to look into any new study drugs that may be developed.  I guess I probably just bought myself at least another few years of treatment but I am thankful that all the new developments in cancer treatments has bought be the time that is has.  I was originally diagnosed in February of 2012 and here we are in 2020. I think of all the others with my same diagnosis who have not been so lucky.  This is a terrible cancer that can be devastating and I know that I am extremely blessed to be here and doing as well as I am.  I can never say thank you enough for prayers as it is God who hears and answers all prayers.

My daily life in a few short sentences.  Well, I can say that I am doing pretty good.  I have gained many new grey hairs but I still have hair.  I have gained weight because I can’t exercise and do as much due to the swelling from my lymphedema and pain but I am still not obese, just a bit larger that I was before.  I have lost a lot of energy and get worn out much quicker than I used to but I am able to rest when I need it.  If I have a bad day I stay at home and nobody really knows except my family and they are overly supportive.  I go out when I feel good and people only see the old me. I have had many surgeries but my scars are all hidden under clothing so nobody can see that I have had anything done to me.  I have terrible degenerative disease in my spine which is very painful and the immunotherapy makes the pain worse but thankfully the doctors are able to manage my pain most of the time with medication.  I have had to adjust my daily activity, rest more often, control what I do to minimize my pain and swelling but it is all manageable.  I don’t think that any person who has as many issues as me and has been fighting cancer as long as I have can say they have it this good.  I am truly blessed.  I hope that everyone who reads this can recognize what a blessing it is to be able to wake up each day and get out of bed.  That in itself is a blessing.

Story:

I want to tell you about an amazing woman I met during my last treatment.  She was an older woman who was full of spunk and energy.  She had been battling cancer for quite some time.  When I finished my treatment and was getting ready to leave she stopped me and told me she had something for me!  She opened up a large bag and pulled out a homemade bar of goat milk soap.  It spelled amazing and had the cutest goat grazing molded into the bar.  She explained she and her crazy family had a goat farm and that they make soap from the goat milk.  She went on to show me pictures of her family, crazy family she called them, and the animals who live on the farm as well as the goats that make the milk for my bar of soap.  She was so enthusiastic about the things they do on the farm and what they want to do.  She had decided to bring in a large bag of the soaps to distribute to all the cancer patients as her goodby.  She was finishing her last treatment and looking forward to a long remission.  She has so much to do.  She touched me in so many ways.  I was of course thankful for the soap but to see her passion for life. She is one of few that I have met in treatment who look at the positive in life instead of focusing on all the depressing things we are surrounded with dealing with cancer and treatments.  I truly believe that attitude and goals helps us to survive.  We can never give up and life if full of opportunities if we open ourselves up to them.  Focusing on bad news, pain, or the medical statistics for beating any disease can be depressing and cause us to lose hope.  I admire this woman I met and hope that I will always have her same attitude about life.  There is so much to live for.

Challenge:

I want to challenge everyone reading this to do what I do each morning.  I wake up and grab a cup of coffee, you can grab whatever you like to drink, then I list 10 things that I am thankful for.  The big challenge is that you can’t name the same thing twice, every day must be 10 new things.  The first couple days are easy then it requires some thought and after a week or two it gets really easy again.  Before you know it you will begin to realize just how many blessings you have been blessed with.  For me I can say I never really took the time to think about all the things we take for granted every day until I started this practice.  There is an added benefit to this exercise as well, you start your day off in a good mood.  You can say goodby to the days of getting up on the wrong side of the bed and beginning your day in a not so good mood.  It makes you happy to think about how wonderful life really is and it gives you a break from all the stressful things going on in your head.  Try it at least for 2 weeks and see if your days seem to be brighter.

Challenge two.  Do something nice for a stranger.  It can be as simple as saying hello and how are you to a homeless person or as big as you choose.  I just want to challenge you to do something nice for someone who can’t repay you in any way.  It makes you feel good and it will change the way others feel.

Thanks for reading my post and I hope everyone reading has a blessed week.

I am terrible at writing posts!  How long has it been?  Too long.  Well, I apologize for the long delays.  I always want to write but then I sit down and don’t know where to begin.  I always have updates from the doctors but I never really know what is going on or what will happen in the days to come.  I guess I just need to accept that life is ever changing and none of us will ever really know what the future holds for us.  We can make plans, we can prepare and think we have it all under our control but in reality we are not in control. Nope that is just our imagination allowing us to feel in control and comfort us.  God is the only one who knows the future and all the twists and turns our life will take.  What we can control is our faith that God will see us through every peak and valley we travel through.  We need to constantly remember that with every sunrise we are blessed with another day and with every sunset we are blessed with the memories we made that day, the people we have touched, and the lessons we have learned.  It is my understanding that life on earth is equivalent to a blink of the eye in heaven.  Time is short and none of us know how long we have to make an impression on those around us.  I never gave this much thought when I was younger but then I got cancer. Instead of focusing on the scary word cancer and thinking about dying I have tried to focus on living a meaningful life.  I am not so sure I have been successful but I hope I am leaving behind something of value to those in my life.  As I reflect on my life I try to learn from my mistakes and do good things for others and myself.  Sometimes the good things may be as simple as taking the time to call a friend or say hi to a stranger I meet.  Sometimes just a kind word is all someone needs to hear to make their day a little brighter.  I hope during the upcoming holiday season we can all remember to be kind to one another no matter what the situation may be.  We all have hidden scars and struggles so we need not judge others just be kind and understand that only God has the ability to understand and judge.  We also need to remember to be thankful when everything is going good and we are on top of the world.  We did not get there alone so remember the ones who helped you get there.

OK enough about that and on to my update.  I have now been on chemo and immunotherapy for 2 years.  Immunotherapy is the new and latest treatment that has been showing promising results for many cancer patients.  I have been doing much better on this treatment than the last two chemo drugs, which were going to kill me!  Well, I am thankful for the last two years and was excited that I would maybe get to stop treatment.  Well, not so fast, the latest studies just came out and they did not look good for those who stopped treatment so that bought me additional time.  I am not sure how long but until more studies come out showing more positive results.  I guess it was good I did not stop treatment because I found a new area that felt funny.  I could not really see anything so I watched it and then one day I noticed a very small discoloration.  I went to my doctor and she thought it did not look worrisome but with my history she felt it was best to biopsy it.  Well, to our surprise it came back positive.  This makes the 7th time my cancer has returned.  They could not be for sure if it was a new metastasis or a new primary so they send the slides to my oncologist who then had them studied and they could not determine if it was new or a metastasis either.  Ugh what a terrible thing to happen after such good results.  They are scheduling surgery to remove it and then sending off my tissue sample to study it.  They believe there must be a change such as a new mutation.  They are looking for the reason my treatments are no longer working.  The hope will be that it is a metastasis and not a new primary lesion.  Is it a fluke that it came back after two years of treatment or has it changed and I need a new treatment regimen?  The best drugs for my cancer I can’t take due to the toxicity so what is left?  Well, the doctors are not sure maybe a study drug or maybe we will just stay on the same one and see if more cancer comes back.  Its all unknown for now but I will have surgery to get rid of the cancer that has come back for now.  I am just going to be one of those patients who just cant stay in remission.  The positive to all this is that I have found my cancer very early each time.  I have actually found it right after normal ct scans the last two times.  I should mention I also found cancer in my dog very early and she had surgery that saved her life!  Too bad I can’t detect all cancer early for everyone….That would be an amazing gift.  I am just happy that God has blessed me with the ability to find mine and my dogs.  So my plan is to get better at writing updates.  My surgery is schedule for December.  Yes, its a little ways off but there are a lot of cancer patients needing their surgery as well so I have to take it when I can get it.  I am thankful for everyday that I am here and that my doctors have done such a good job of keeping me alive and well to see my youngest son turn 18.  Well, he will be 18 in January and I am pretty sure I will see that day come.  

God Bless everyone reading this and may you have a safe and happy holiday season.

It has been a very long time since I have written but many have been asking what has been going on with me. Like always I am never quite sure and always waiting on additional testing to confirm an …

Source: Latest Report 11-19-2016

It has been a very long time since I have written but many have been asking what has been going on with me. Like always I am never quite sure and always waiting on additional testing to confirm an actual diagnosis. I had a Pet/CT about 6 weeks ago that showed 3 new areas of concern. The doctors said they are small and not 100% sure if it is more cancer or not. The doctors have scheduled another scan to be done in 6 weeks. If the 3 areas show up again and have enlarged then it will confirm cancer and I will have to work with my oncologist and oncology surgeon to decide on the next steps. They have talked about possibly trying an immunotherapy since I did not tolerate the chemo. On a more positive note if the 3 areas do not show up on the next scan or if they show up and have not changed in size then it most likley is not cancer. I praying for the later. As for my overall health, I deterorating! The nerves in both hands, wrists, elbows and right shoulder are all severly damaged and the nerve conduction studies showed that there is moderate to severe decrease in conduction. I am in intense pain all the time and I have trouble holding on to anything, if I am even able to grasp anything. The last 3 days the pain was so intense that I cold not move my left thumb or wrist. This makes everything challenging. I have trouble with simple daily tasks like brushing my hair, holding utensils, writing, cooking, etc. They have given me wrist braces for both hands. When I lay down at night to sleep both hands go numb and I cant feel them or if Im driving and holding on to the sterring wheel to long the go numb. I have terrible neck pain that radiates into my right shoulder making it very painful to move my right arm. Sleeping is now non existent. If I am lucky I may get 20-45 minutes of sleep then the pain wakes me up and I need to get up and move around. My lower back is also very painful and it is hard to change positions. If I sit to long it is hard to get up and walk, if I stand to long my legs get very weak and if I lay down I have severe burning pain in my thighs, butt and lower back. I also have developed sever right knee pain and there are three nodules that have formed around my knee cap. Besides being very painful, my right knee makes a loud popping sound when I bend it or pivot on my feet which makes me unsteady very week. I can barley go up or down stairs now and must have a handrail or someone to help hold on to me. It feels like I can no longer trust that I will have the strength to support myself. So why is this happening? After many texts, x-rays and electricle studies they have found that my cervicle spine implant did not fuse. This is causing my neck pain and some of my arm, wrist and finger pain. They also found that I have nerve damage from my spinal cord being compressed. The spinal cord compression was fixed with my c-spine surgery so this is residual damage that is now permanant. According to the doctors nerves can regenerate up to a year after dying or being damaged and I am a little over 2 years out from surgery. Second there is some controversy over why my carpal tunnel surgery did not work and I now have severe carpal tunnel in both wrists. I have not done anything to develop these issues. I also have bilateral nerve damage in my elbows. They did to the electrical studies that show there is severe delays in the condustion but that study can not tell what is causing the problem. The new orthopedic spine physician in Springfield is not comfortable doing anything with me expecially since I have implants in my spine. My new orthopedic spine doctor has decided to send me to a new spine specialist in St. Louis. I met with the new orthopedic spine doctor in St. Louis. After discussing what has been done and what may need to be done we are moving forward with sending me to an allergy doctor first. The allergy specialist is going to have allergy testing done to see if I may be allergic to the metals in the implants. If I am it can prevent the implant from fusing and cause an inflamatory response systemically which could be the reason for the nerve issues I am having in my arms, elbows and wrists. Once I get the results from the allergist we will know what the net steps are. If I am not allergic to the metals in the implants that were put in my cervicle and lumbar spine then he will send me back to the orthopedic spine physician to put in a plate to fuse C5/C6 which did not fuse. I also have developed some foraminal narrowing at C4/C5 that he will fix when he puts in the additonal plate to fuse my cervicle spine. The next cervicle surgery will have to be done by gong through the back of my neck. This means going through many more muscles and making the recovery time longer than before. Once I have healed from this, 3 months or more, he will send me to ortho in Springfield to have surgery to release the nerves in my wrists, bilateral carpal tunnel surgery, trigger finger surgery and elbow. They want to try an injection in my shoulder but I had really bad side effects last time I had an injection into my shoulder. The doctor in St. Louis wants to find out what drugs were used last time and see if there is someother drug we could try injecting instead. Now worst case scenereo is that if the alergy tests come back positive for an alergy to the metals in the implants then I have a very big problem. The only way for my nerve problems to stop getting worse is to remove the implants. Of course you can not remove the implants so the only way to remove the implants is to remove the entire bone. This of course is very complicated. Before any surgery can be done they need to find an implant product that I am not allergic to so they can put it in to fuse my spine. This is not only very complicated but the risks are high for having complications that could actually make me worse off than I am already. Needless to say I have a lot more issues and concerns to discuss with the orthopedic spine surgeon after my allergy testing. I did find out that the manufacturer ot the implants I had put in states in their pamphlet their implants can not be used in anyone allergic to the materials in used to make the implant. My neurosurgeon, whom I dearly respect, did not test me for allergies to the implants he put in. They are suposed to do this. I can only guess that since it is rare for someone to have a reaction he felt is was not necessary! Either way I am looking at more surgeries in my future and in the meantime I am suffering daily. My physicians have decided to put me on a fentynal patch and give me hydrocodone to take as needed to help control my pain. This is only giving me enough releif that I can function for several hours a day before needing to rest. By resting I mean doing nothing but changing positions every 15 minutes or so to reduce the pain. Some days, expecially after traveling to watch Trentin play hockey, I spend the next 2 days resting because the pain is to severe that I can not do anything. Overall my daily life is a struggle but I hide it well. Most people can not see the pain I am in, well somtimes you can. I try to at least put on make up when I leave the house and dress up well enought hat I look pretty normal. I do spend most of my time at home though. It is just easier to stay home because I know when I go out I will suffer. I should mention that my lymphadema is also getting out of control because I do not have the strength in my hands to put on my compressions. I am limited to using my lymphadema pump which helps but only minumly and it is a 1 hour treatment each time I do it. I must also do the treatments laying down for 1 hour which can be so painful that I end up terminating the treatment early. Through all of this I am grateful to be alive and watching my boys grow into handsome, polite and productive young men. I still beleive that God only gives us what we can handle and that he has a reason for everything. I certainly don’t understand his reasoning but I accept it. I know that one day there may be medical advancements that will cure all that I suffer from. I know that I have learned what it means to appreciate life, family and just being able to wake up each morning and put both feet on the ground. I have truly been blessed with the greatest and most amazing friends and family who have always been there to support me. I just wish I could understand why I was chosen to experience all of this. I pray that my words can help offer comfort to others who may be suffering. I encourage others who are suffering for any reason to continue to hold on to their faith. To be thankful for what they have and for being alive. Never let your problems take over. Keep positive, stay strong, know that medical advancements are occuring every day. Lean on your family and friends when you need to. We all have those days when we are feeling a little down or just plain tired of dealing with your troubles. This is when your faith, family and friends can assist. ON the good days just be appreciative and know that this too will pass. God bless you all. I hope this reaches everone who has been asking what is going on. I love you all.

Well let me first start by saying that I had some very sad news today.  I absolutely love my oncologist and he is one of the very best.  I am so lucky to have had Dave refer me to Dr. Gerald Linette.  I met with him today and it was hard for him to tell me the sad news but he finally said I am sad to say that I am leaving Washington University Physicians.  He is going to move back to his hometown in Philadelphia.  He said he had an offer he just couldn’t refuse and it would allow him to be back home and close to family.  I am happy for him but so sad that I will be loosing one of the best oncologist.  On a lighter note he will be here for another couple of months.  Hopefully I will be back on track by then!.

I went to see my oncologist yesterday and here is what I found out.  First of all I was having so much swelling and pain in my feet, ankles and left leg that I thought by the looks it was possibly blood clots.  I went last week to the cancer clinic, since my doctor was out of town, and they ordered dopplers which did not show any blood clots.  They looked up the side effects of the tafinlar and mekinist and decided I had cellulitis.  Well I am no doctor but my feet and legs did not look anything like cellulitis to me but who am I?  They put me on an antibiotic and sent me home.  When I had my visit yesterday with Dr. Linette he said my problem was not cellulitis and that my legs and feet did not even look anything like cellulitis.  He told me to stop the antibiotics.  He did say that this problem is somewhat rare but for some reason the inflammation and pain seems to have happened to several middle age women he has treated.  He said that it was an inflammatory response to the chemo medications.  I explained that the pain was so severe that I felt like I was trying to walk on broken bones and nothing touched the pain.  I was to the point I was ready to look at investing in a wheel chair!  Yes he said his other female patients explained it the same way and that it was much much worse than any rheumatoid arthritis pain!  He actually had to hospitalize one of the women.  He was more concerned however that the symptoms had not started improving.  He would have expected to see improvement after the first week that I stopped the medication.  I have been off the medication since the 11th of April.  He was also very concerned with my labs.  I had been on the chemo for 2 and 1/2 moths and off of it now for 2 weeks.  He stated that chemo can cause a lot of strange results with labs but typically they return to normal quickly after stopping treatment so he is puzzled by my results.  My red blood cell count, hemoglobin, and hematocrit have been declining consistently since I started treatment.  They are still dropping even after being off chemo for two weeks.  My red cell distribution width and my platelet count have been increasing since I started chemo?  Well what does this mean?  According to my doctor I am very sick but he can’t put that in his notes so he needs to find out what is going on.  He has decided that I am not tolerating the drugs well enough to continue but maybe someday if the cancer returns and I am really in bad shape they may give it another chance but not now or anytime soon.  I am severely anemic with my platelet counts rising putting me at risk for blood clots and I have severe pain and inflammation that is not getting better.  So I really don’t have any good answers. He has ordered my lab work to be repeated in two weeks to see if there is any improvement.  Praying there will be and not sure what happens if it continues to decline.  I am scheduled for a pet scan in 4 weeks that will tell if there is any cancer in my body.  The ultimate goal is to get me straightened out before my doctor leaves for Philadelphia.  I still continue to have GI problems and I feel very week and tired.  This all makes me crazy because I want to feel better now.  So as I have said before these symptoms are my experience with the tafinlar and mekinist.  There are many patients who do extremely well with the chemo combination and it has shown great results for many.  Please continue to look at all the positive results these drugs offer.  If you are in a position where you are offered these drugs then you should follow your doctors advice and take them they are showing positive results with so many.

I continue to pray to our Lord in Heaven.  I give to him all my burdens, struggles and pain and he gives me peace, patience and the faith I need to know that everything will be ok and when its not he will be there to hold me.

Thanks to all who read my posts and remember to appreciate all the small things in life, don’t be in a rush.  Take your time to see the beauty in the world, smell the beautiful fragrances in the flowers.  Love many and often.  God Bless

Another update on the side effects of Tafinlar and Mekinist.  Well here we go again, or not!  I had restarted the chemo Tafinlar and Mekinist and was hopeful I would continue on the medication without side effects.  After a month back on it I was feeling very lucky that I was doing so well.  Month two was just about the same, doing much better that expected until I woke up one morning with just about every side effect listed for both medication.  Off the chemo again with hopes that in a week or 10 days I would be well enough to restart it.  Well this time it’s not looking so good.  I had initially woke up with fever, chills, severe stomach pains that felt like I had swallowed a bucket of razor blades, migraines, vomiting, diarrhea, and overall fatigue and feeling like poop.  I went off the chemo and about 4 days later the stomach pain, vomiting and diarrhea subsided.  Whew, I was so glad that was over but I still had a low-grade fever and migraine for the next few days.  Then the worst ever, I started having swelling in both feet and ankles with severe sharp burning pain that could not be controlled by anything.  I thought this was strange and hopeful it would get better.  No such luck its only getting worse each day.  At first there was no discoloration in the skin just pain and swelling.  I was thinking it was probably joint pain, arthritis or some sort of muscle pain, all noted in the list of side effects.  Things changed over the weekend and have gradually gotten worse.  There is now severe edema in both feet and ankles and the swelling and pain is moving up my leg and into my knee on my left leg.  I am almost positive I have developed blood clots in both feet and ankles, also on the list of side effects.  Yes I know the risks of blood clots.  I am planning on going into my physicians office or to the ED tomorrow or Wednesday depending on what my physician thinks.  When I put any pressure on my right foot it feels like all the bones in my foot and ankle have been crushed and I am trying to walk on crushed bones.  The right foot is the same but the heel is a little more painful on this foot but it dies not radiate up the leg into the knee like the left.  Wow,  I never thought anything could be this painful and bring tears to my eyes so quickly.  I also feel like the two overstuffed sausages attached to the end of each leg are the most disgusting foreign objects I have ever seen.  I want to know where my feet went and I want them back.

I want to say again as I have said so many times that I am very lucky and thankful to have such wonderful physicians.  I am thankful to Dave for leading me to the right physicians for treatment.  I am hopeful that once again I will be in good hands and on the road to recovery soon.

I am also so very thankful for all the support and prayers that have been a constant in this crazy cancer experience.  I will be forever grateful to all of you who give me reasons to fight and who bring a smile to my face when I think of you.  I truly have been blessed with so many wonderful people in my life.  God bless you all.

Well Here is my 2 month update on the two chemo medications that I am on, Tafinlar and Mekinist.  Month one I started developing vision problems so I went off the medications for 2 weeks.  I went t…

Source: Month Two of Tafinlar and Mekinist completed and starting on month 3

Well Here is my 2 month update on the two chemo medications that I am on, Tafinlar and Mekinist.  Month one I started developing vision problems so I went off the medications for 2 weeks.  I went to see an eye doctor who did many tests and scans and decided that I had developed vitreous syneresis of both eyes.  I understand that this can occur normally as we age however, it looks like the medications have caused this to happen quickly in both eyes.  The eye doctor agreed that I need to watch for flashes of light or streaks of light and if this happens it means that I have developed a retinal tear.  If a tear occurs I will need to bee seen immediately in the office.  So I have very blurred vision and I am now forced to use readers!  I also floaters that drive me crazy.   Luckily, I am allowed to go back on both chemo drugs. I must now see both my oncologist and the eye doctor every month.

So here I am.  I restarted both chemo treatments and at the end of month two I went to see both physicians again.  I have developed more floaters in both eyes and the chemo has caused the development of cataracts in both eyes.  I can continue to take the medication for another month.  My oncologist is really happy that I seem to be tolerating the treatment as well as I am!  I am not sure what he expected to happen with me but I am not so sure I agree with him.  I am going into the second week of month three and more symptoms are beginning to appear.  As I have said before I am documenting my experience with the Tafinlar and Mekinist chemo and it may be different for others.  I have noticed that my eyes are still getting worse, the constant pain that I live with seems to be getting worse.  I feel very nauseous and my stomach hurts all the time.  I get a bloody nose every day and every time I blow my nose, I am starting to get headaches daily, I have developed a severe cough, sinus drainage into my chest, and lastly I am experiencing extreme fatigue.  I typically only sleep a couple hours at a time due to me being in pain and that continues but I am taking many more frequent naps.  So I guess that means that the chemo must be building up in my system so lets hope it is working.  I did go to see my family doctor and to let him know that I was no longer able to control my pain as it was getting worse.  He just suggested I continue on the current medication for now.  I actually thought something was wrong or changing until I began to read the drug interactions for the new chemo drugs.  It appears that the pain medication is less effective while taking the chemo drugs.  Good news I am probably not getting worse, bad news it looks like I may not be able to control my pain while on the chemo!  I see both my doctors in two weeks and then I will have another pet scan early in May to see if everything looks good.  I am hopeful that everything will look good and that I will only have to do the chemo for 6 months.  I am so ready to feel a little more like myself again.

On a much lighter note I am blessed to have drug options as there wasn’t much when I was first diagnosed.  The development of new cancer drugs is helping many people live longer and their quality of life is so much better.  I am hopeful that one day there will be a cure but until then I will stay positive.  I am blessed with so many wonderful friends, great doctors and the love of the Lord.

Something I read and is part of my daily life…..Not sure who the author is.

Pretending to be happy when you’re in pain is just an example of how strong you are as a person.

I am one very strong person and I will never give up………

• Stay Strong………………………………Pray for Strength
• Love others………………………………Pray for peace
• Be still and let God do his work………Thank God for what he has given us
• Enjoy the gifts God has given us…….Praise God and be thankful
• Remember we are never alone………God walks with us through the good times and tough times.

Pray…..Pray…..Pray……Pray and be thankful